Here I am again, hoping to give an update on what has happened since I last wrote here in March last year.
I continued to do well as the months went by, so much so I was starting to reduce my pain killers - morphine in particular - and was feeling pretty proud of myself at how good I seemed to be coping.
Friends and family kept suggesting that John and I take a holiday, but I was very reluctant to move out of my 'comfort zone'. My response was always that hotels etc wouldn't be able to cater for me, having had such a bad experience at the hotel in London when I went down for the Gamma knife treatment. Plus, I have everything to hand here as John has seen to it that my every need is catered for! I knew, of course, that I would have to get my butt out of the house and venture into pastures new. Eventually we had a few days in Grasmere in the Lake District, staying in a vegetarian hotel, which was highly recommended by friends (we are not veggies but John was happy to sample it for a little while) It turned out to be a wonderful few days away. The hotel was more of a small country house set in its own beautiful grounds. The food was delicious and they took great care in catering for me and John thoroughly enjoyed the 5* cuisine. John and I came back truly refreshed and determined to repeat the exercise before too long.
We had a lovely few days down in Bristol for our niece's wedding. John hired a 'people carrier' and we all travelled down. Cathy was six months' pregnant so not the most comfortable journey for her!
I also got back to walking the dogs (mine and Mum's) on the dene or on the beach, which was a pleasure as we had such beautiful weather.
As the year progressed so did the pain. This time on the left side of my face, around my ear and eye. I was scheduled for a scan early in November, in fact the day before my charity day during Mouth Cancer Awareness week. My friend, Marie, came with me to the hospital - she was in for a long wait. The MRI scan lasted about 90 mins - the nurse kept telling me they needed extra pictures - I knew then that things weren't right. When I eventually came out of the room I was greeted by the consultant radiographer who told me he could see another, larger, tumour behind my left eye and "would I hang on and have a CT scan". It is most unusual to be told the findings on the day of the scan (unless its private perhaps).
Having waited so long at the hospital I was overdue my painkillers and as I always carry soluble Paracetamol and water+cup I made a couple up and sod's law, the taxi arrived before I had time to take them. I went to get in the cab when the driver bawled "get out of my cab with that drink" - Marie tried to explain that it was just tablets etc but no, he was really rude, ordered me out of his cab in no uncertain terms! If it hadn't been for the fact that I was shattered and in pain and already upset with what I had just learnt, I would have told him what to do with his taxi but I was desperate to get home, it was rush hour, so I stepped out and drank it down and sat shaking for the whole of the journey home. Forceful complaints were made to the taxi company with instructions that they never send that man again.
As I said, the next day was the Mouth Cancer day in the house. All my 'helper' friends gathered and I made the announcement that I had developed another tumour and, in fear of me 'bubbling' all over the place, it wasn't to be mentioned again that day! They were all wonderful, bless them. The day was a resounding success with the house bursting at the seams with people. We had the usual stalls, the official Mouth Cancer Christmas cards, hundreds of home made cakes and produce, tombola, raffle etc, etc. The day raised £892!
Lots of other stuff was going on around that time. Becky had got a team of her friends organised to do the Mouth Cancer Walk in Hyde Park. About 13 gorgeous young people turned up as part of "Brenda's Bobby Dazzlers", my nephew who was over from Australia also took part. So, of course, John and I went down to London to join in the walk. It was a glorious day both weather-wise and atmosphere-wise!!
As it happened, my friend Sue, who I met on the MCF website, was celebrating her 50th birthday and as she lives in Kent we were able to attend her party. We met her for the first time that night (although I have got to know her well through the website) her lovely family and lots of her wonderful friends. We thoroughly enjoyed the night. Sue's husband, Ian, very kindly set up a "silent" collection, putting a pint glass on a table and leaving it to guests to contribute should they so wish. Within no time the glass was bulging with money - over £300 was raised - how wonderful is that!!
I was asked by Dr Joshi, who runs the Mouth Cancer Foundation, to attend a NICE meeting in Manchester where they were appraising a new drug for Head and Neck Cancer sufferers. John and I made it an overnight stay and saw "Mamma Mia" at the theatre - fantastic!
I also volunteered to go to Westminster in support of Dr Joshi who was giving a presentation on rare cancers. That proved to be a very interesting experience.
When I eventually went to see my 'team' after the scans I was told that the only option available to me would be radiotherapy of some sort. My Oncologist wanted a second opinion and arranged for me to see someone in Birmingham. The Gamma knife wasn't appropriate this time. John and I duly went to see him and he took his time to explain the types of treatment at various hospitals - France, Switzerland, Japan etc but, in his opinion, I should have 20/25 sessions of conventional radiotherapy at the Newcastle General Hospital!!
So that is what happened. I had the dreaded mask fitted and my wonderful team of friends drew up a rota to accompany me in the taxi each day. My face burnt red on the left side and my eyesight went blurred in the left eye. The main side-effect was tiredness - I could sleep all day long and all night as well (no need for the sleeping pills anymore!)
The day before my final treatment was the day our beautiful grand-daughter was born! Eva Rose Brady came into the world by caesarean section, three weeks' early, weighing 7lb 15oz on 30th January 2007! The best medicine I could ever have wished for!
I do feel an improvement now the side-effects of the radiotherapy have calmed down. I have more energy and feel the need to be 'getting on' with things.
Before this latest tumour I had set about putting together a recipe book for people with eating difficulties. I have had some success in obtaining recipes from celebrity chefs as well as from other sources. My aim at the moment is to get feed-back from fellow sufferers as to what they are able to eat/ their difficulties/ favourite dishes or any comments they may wish to make. Should anyone else wish to comment then please feel free to email me.
Anyone wishing to contact me re the recipe book can email me on brenda.brady@consil.co.uk
I promise not to leave it so long to keep you updated in future!
Until next time.................xx
Wednesday, March 21, 2007
Saturday, March 18, 2006
Third Time Lucky?
It's a long time since I last posted and a lot has happened since then. I finished off last time having sort of recovered from the second lot of surgery, save for a few hitches here and there. The main thing that was stopping me from feeling well was a throbbing pain on the left side of my face; the side of the first operation but higher up. I was quite deaf in the left ear too. I was seeing a doctor at the local hospice who kept increasing my painkillers. Each time I had a consultation with JOD or one of his team it was felt that the pain had to be nerve linked. He even brought in a fellow consultant for a second opinion who was also convinced it was nerve damage. I had to settle myself that this was probably the cause, but somehow I knew it wasn't!
Just as an aside....
60th Celebration
One thing that has 'kept me going' throughout all of this is my efforts at fundraising. With this in mind I decided that it might be a good idea to make John's forthcoming 60th birthday party an excuse to raise funds. Thankfully he was in agreement! We booked the Grand Hotel in Tynemouth as they have a large basement room with bar and dance floor. We invited about 130 friends and family and requested that they donate to our "Justgiving" website in lieu of a present, to which they all very generously complied! People travelled from various parts of the country and it was great to see so many lovely people who had made the effort to be there.
We had booked a ceidlih band, plus a group of comedians called "The Suggestibles" (who pride themselves on "no bad language or blue jokes"). They were absolutely fantastic. It was heartening to see so many people enjoying a good old 'belly laugh'. Full marks to them. After the buffet we presented John with a saxophone (which he has always wanted) with Becky, Dan, Cathy and their musical friends playing and singing "Happy Birthday" along with a little ditty I had put together to the tune of "Big Bad John" - a parody of John's life so far!! We ended the night with a 60's disco - which had EVERYONE up on the dance floor!
All in all it was a marvellous night, raising just over £1,300. Added to that was the sale of our Mouth Cancer Christmas cards, plus the proceeds of my coffee morning during Mouth Cancer Awareness Week (I was on the local television that week too in an effort to raise awareness of the disease).
The final total presented to The Mouth Cancer Foundation was £3,077.40. Brilliant!
Now back to the update!!.........
SKULL-duggery!
JOD (Mr Joe O'Donoghue) very kindly accepted that I ' didn't go' with the opinion that the pain was due to nerve damage and so arranged another MRI scan. I duly had that scan about a month later then went for the results some weeks after that. It turned out that I had another tumour - this time in my skull! JOD told me it was in a very awkward position and it was highly unlikely that it could be operated on. As things had now moved into my head it meant that I was no longer under JOD's care and he would be passing me over to a Neurologist at Newcastle General Hospital for them to decide on the next course of action.
I have to admit to shedding tears for the first time in a consulting room on being given bad news! And the thought of not being under the care of JOD was enough in itself to set me off blubbering!
JOD did mention some Cyber Knife treatment which could possibly be carried out at a hospital in Sheffield, should I not be able to have an operation. But as this is not his area of expertise there was a limit to his knowledge. He did write to the Consultant at NGH very quickly and I was given an appointment for the following week.
John and me duly arrived at Newcastle General and saw the relevant doctor, who took one look at my scans and said "no" he couldn't offer me an operation. We were devastated. He also mentioned this hospital in Sheffield but he would be handing me back to JOD for him to follow up (hooray!).
By this time it was the week before Christmas, I was dreading the wait over the holidays before anything could be put into action. I then got a phone call from JOD telling me he had sent the scans off to the hospital in Sheffield and he had received a call from them saying that their machine was out of action and as "this lady cannot wait until it is up and running we are arranging to send her to the Cromwell (private) Clinic in London"!! JOD had to arrange the paperwork and contact my Health provider for funding (on a day when all staff had left the hospital for the Christmas break). I received a telephone call from the Cromwell that afternoon offering me an appointment for the following week - between Christmas and New Year - I took it of course!
The procedure is Gamma Knife treatment, which is a massive 'one-off' blast of radiation.
GAMMA Knife Treatment
We duly went down to London by train and checked into a hotel just a five minute walk from the Cromwell. We had to report to the clinic that evening where the doctor, Mr Forster, talked us through the whole procedure for the next day and I had to sign the consent forms etc. He was very thorough - an older man than I was expecting but he really knew his stuff! I was to check into the hospital at 9.30 the next morning.
We went back to the hotel to get something to eat, easier said than done for me! You would think that a massive London hotel would be able to blend a few bits of food in a liquidiser for me to eat, but no - they were too busy and besides, their liquidiser is an industrial size so cannot accommodate small amounts!! The money we paid to stay there they should have gone out and bought a new one just for me! I have never been made to feel a freak since having this illness but I sure did that night.
Got to the hospital next morning and was shown to my room - very nice on first impressions. Shortly afterwardz a nurse came in with a mild sedative for me to take. Whilst waiting for that to take effect I had a procession of workmen in the room to a) fix the central heating b) fix the toilet cistern c) change a light bulb and d) sort the fan out in the bathroom which was blowing a gale force wind through!
Eventually the porter came for me with a wheelchair and off we went down to the Gamma Knife clinic - across 5"-thick-pile carpets and past extremely luxurious furnishings and decor. Apparently some sheik from Saudi had been in for tests last year and had paid for the whole floor to be refurbished ahead of his visit!
Anyway, back to poor little me! Once downstairs I was fitted with a metal cage to my head. It was literally screwed to my skull in four places (I had a mild freezing gel where the screws went in). Once the cage was in position I was given an MRI scan - so they could plot the co-ordinates for the Gamma Knife. That took the best part of an hour and then I had lots of metal bars fitted to the head cage before going back into the scanner for the treatment blasts. I had been told to bring a few CD's to listen to whilst in the scanner. I brought a Katie Melua tape - what a mistake that was - such a mournful sound (I like her normally) but in those surroundings it wasn't the best choice. Even the staff cheered when I asked them to turn it off!!
I was in and out of the scanner about six times, each time having the metal bars adjusted slightly and, after about two more hours, it was all over. The cage was duly removed from the head (and I bled quite a bit) and off back to my room to rest. I felt very heady and a bit sickly but once I had slept for an hour or so I felt much better. I spent that night in the hospital and John eventually went back to the hotel. He was his usual devoted self, looking after my every whim, bless him.
Next morning I got the all clear to go home and off we went to Kings Cross and back to Newcastle on the train.
I had another MRI two months later at the Freeman Hospital and was delighted to learn that the tumour had reduced "considerably". The deafness is still there, but I can put up with that!
I feel very fortunate to have been offered this treatment, which seems to have worked a miracle. I really didn't hold out much hope of a cure, especially such a quick one! Don't let anyone knock the NHS in my earshot!
Miracle Manuka Honey!
It is now March and I am making good progress. I had my peg tube removed a few weeks' ago and it is just about healing up. I have had quite a time of it leaking at all sorts of awkward times. On a recent visit to Leicester a friend recommended (and gave me a jar of) Manuka Honey, a New Zealand honey which is meant to have excellent healing qualities. As well as putting it on my porridge I put a small amount in the peg area and, lo and behold the hole closed up within days!! I had an appointment with the Peg Clinic that week and the doctor was greatly impressed with my 'miracle cure'. I am to go back in a few weeks to give them a full account of my progress.
I am still on quite a lot of painkillers (morphine) as I have pain still in the jaw area. This pain has been around for a long time now so maybe this actually is nerve damage. I will be having another scan in a month or so, so fingers crossed that nothing else shows up. I will keep you informed!
If anyone wishes to email me I have a new email address: brenda.brady@consil.co.uk
Just as an aside....
60th Celebration
One thing that has 'kept me going' throughout all of this is my efforts at fundraising. With this in mind I decided that it might be a good idea to make John's forthcoming 60th birthday party an excuse to raise funds. Thankfully he was in agreement! We booked the Grand Hotel in Tynemouth as they have a large basement room with bar and dance floor. We invited about 130 friends and family and requested that they donate to our "Justgiving" website in lieu of a present, to which they all very generously complied! People travelled from various parts of the country and it was great to see so many lovely people who had made the effort to be there.
We had booked a ceidlih band, plus a group of comedians called "The Suggestibles" (who pride themselves on "no bad language or blue jokes"). They were absolutely fantastic. It was heartening to see so many people enjoying a good old 'belly laugh'. Full marks to them. After the buffet we presented John with a saxophone (which he has always wanted) with Becky, Dan, Cathy and their musical friends playing and singing "Happy Birthday" along with a little ditty I had put together to the tune of "Big Bad John" - a parody of John's life so far!! We ended the night with a 60's disco - which had EVERYONE up on the dance floor!
All in all it was a marvellous night, raising just over £1,300. Added to that was the sale of our Mouth Cancer Christmas cards, plus the proceeds of my coffee morning during Mouth Cancer Awareness Week (I was on the local television that week too in an effort to raise awareness of the disease).
The final total presented to The Mouth Cancer Foundation was £3,077.40. Brilliant!
Now back to the update!!.........
SKULL-duggery!
JOD (Mr Joe O'Donoghue) very kindly accepted that I ' didn't go' with the opinion that the pain was due to nerve damage and so arranged another MRI scan. I duly had that scan about a month later then went for the results some weeks after that. It turned out that I had another tumour - this time in my skull! JOD told me it was in a very awkward position and it was highly unlikely that it could be operated on. As things had now moved into my head it meant that I was no longer under JOD's care and he would be passing me over to a Neurologist at Newcastle General Hospital for them to decide on the next course of action.
I have to admit to shedding tears for the first time in a consulting room on being given bad news! And the thought of not being under the care of JOD was enough in itself to set me off blubbering!
JOD did mention some Cyber Knife treatment which could possibly be carried out at a hospital in Sheffield, should I not be able to have an operation. But as this is not his area of expertise there was a limit to his knowledge. He did write to the Consultant at NGH very quickly and I was given an appointment for the following week.
John and me duly arrived at Newcastle General and saw the relevant doctor, who took one look at my scans and said "no" he couldn't offer me an operation. We were devastated. He also mentioned this hospital in Sheffield but he would be handing me back to JOD for him to follow up (hooray!).
By this time it was the week before Christmas, I was dreading the wait over the holidays before anything could be put into action. I then got a phone call from JOD telling me he had sent the scans off to the hospital in Sheffield and he had received a call from them saying that their machine was out of action and as "this lady cannot wait until it is up and running we are arranging to send her to the Cromwell (private) Clinic in London"!! JOD had to arrange the paperwork and contact my Health provider for funding (on a day when all staff had left the hospital for the Christmas break). I received a telephone call from the Cromwell that afternoon offering me an appointment for the following week - between Christmas and New Year - I took it of course!
The procedure is Gamma Knife treatment, which is a massive 'one-off' blast of radiation.
GAMMA Knife Treatment
We duly went down to London by train and checked into a hotel just a five minute walk from the Cromwell. We had to report to the clinic that evening where the doctor, Mr Forster, talked us through the whole procedure for the next day and I had to sign the consent forms etc. He was very thorough - an older man than I was expecting but he really knew his stuff! I was to check into the hospital at 9.30 the next morning.
We went back to the hotel to get something to eat, easier said than done for me! You would think that a massive London hotel would be able to blend a few bits of food in a liquidiser for me to eat, but no - they were too busy and besides, their liquidiser is an industrial size so cannot accommodate small amounts!! The money we paid to stay there they should have gone out and bought a new one just for me! I have never been made to feel a freak since having this illness but I sure did that night.
Got to the hospital next morning and was shown to my room - very nice on first impressions. Shortly afterwardz a nurse came in with a mild sedative for me to take. Whilst waiting for that to take effect I had a procession of workmen in the room to a) fix the central heating b) fix the toilet cistern c) change a light bulb and d) sort the fan out in the bathroom which was blowing a gale force wind through!
Eventually the porter came for me with a wheelchair and off we went down to the Gamma Knife clinic - across 5"-thick-pile carpets and past extremely luxurious furnishings and decor. Apparently some sheik from Saudi had been in for tests last year and had paid for the whole floor to be refurbished ahead of his visit!
Anyway, back to poor little me! Once downstairs I was fitted with a metal cage to my head. It was literally screwed to my skull in four places (I had a mild freezing gel where the screws went in). Once the cage was in position I was given an MRI scan - so they could plot the co-ordinates for the Gamma Knife. That took the best part of an hour and then I had lots of metal bars fitted to the head cage before going back into the scanner for the treatment blasts. I had been told to bring a few CD's to listen to whilst in the scanner. I brought a Katie Melua tape - what a mistake that was - such a mournful sound (I like her normally) but in those surroundings it wasn't the best choice. Even the staff cheered when I asked them to turn it off!!
I was in and out of the scanner about six times, each time having the metal bars adjusted slightly and, after about two more hours, it was all over. The cage was duly removed from the head (and I bled quite a bit) and off back to my room to rest. I felt very heady and a bit sickly but once I had slept for an hour or so I felt much better. I spent that night in the hospital and John eventually went back to the hotel. He was his usual devoted self, looking after my every whim, bless him.
Next morning I got the all clear to go home and off we went to Kings Cross and back to Newcastle on the train.
I had another MRI two months later at the Freeman Hospital and was delighted to learn that the tumour had reduced "considerably". The deafness is still there, but I can put up with that!
I feel very fortunate to have been offered this treatment, which seems to have worked a miracle. I really didn't hold out much hope of a cure, especially such a quick one! Don't let anyone knock the NHS in my earshot!
Miracle Manuka Honey!
It is now March and I am making good progress. I had my peg tube removed a few weeks' ago and it is just about healing up. I have had quite a time of it leaking at all sorts of awkward times. On a recent visit to Leicester a friend recommended (and gave me a jar of) Manuka Honey, a New Zealand honey which is meant to have excellent healing qualities. As well as putting it on my porridge I put a small amount in the peg area and, lo and behold the hole closed up within days!! I had an appointment with the Peg Clinic that week and the doctor was greatly impressed with my 'miracle cure'. I am to go back in a few weeks to give them a full account of my progress.
I am still on quite a lot of painkillers (morphine) as I have pain still in the jaw area. This pain has been around for a long time now so maybe this actually is nerve damage. I will be having another scan in a month or so, so fingers crossed that nothing else shows up. I will keep you informed!
If anyone wishes to email me I have a new email address: brenda.brady@consil.co.uk
Thursday, August 25, 2005
HERE WE GO AGAIN!
I had the scan that I mentioned earlier and the dreaded day came when John and I went to the Freeman Hospital for the results. I could tell as soon as we went into the room full of sombre faced professionals that the news was not going to be good. My lovely consultant, Mr O'Donoghue, told me in the gentlest way possible that the cancer had returned to the other side of my jaw (right-hand side) and that the only course of action open to me was to have further surgery. This would entail taking bone from my left leg to replace the right side of my jaw and, possibly, soft tissue from my hip to reconstruct tissue taken from my mouth - in other words another 'flap' like last time - and this would only be decided during the actual operation, depending on how far the tumour had spread.
As I have said before on this blog, my type of cancer cell does not respond to radiotherapy or chemotherapy so surgery is the only option. Mr O'Donoghue did point out that a second operation would probably not be as "easy" as the first, or as successful, as the surgeons are dealing with scar tissue from the first operation, plus damaged nerves, and there is not always such a good blood supply. My ability to swallow could be affected which might mean permanently feeding through a peg (tube in tummy). Also that I would 'dribble' a lot more than last time - that filled me with horror! My speech would probably be further affected. I realise that I have to be told the worst things that could happen and I might have misheard a lot of the details. Aas you can imagine, when you are told you have cancer for a second time it is not always easy to focus well on all that is being said. I was asked what I wanted to do and, of course, I didn't have much of a choice so agreed to go ahead with another operation. I would, of course, need to have another peg fitted prior to this op.
Mr O'D also told me I have signs of the cancer in both lungs but, for the time being, as I have no symptoms, it would be prudent to leave them alone but keep a regular check on them.
I was feeling sick to my stomach at the thought of going through the operation again. We were both very shocked and emotional and Amanda, my Macmillan nurse, took us into the next room where we tried to take in the news. John rang Dan to ask him to come and take us home - where we could blubber 'til our heart's content!
I Digress:
Did I mention that Dan and Cathy were getting married on 21st May? The family had been full of 'busy' preparing for the big day. Mum was making he cakes, Dan and Cathy had designed, printed and sent out the invitations. Cathy had her wedding dress and the rest of us were more or less 'kitted out'! I spent every possible moment on Ebay buying decorations for the reception hall, getting the serviettes printed and making the 'favours' for the table. Cathy had very kindly asked me to do a 'blessing' for them and I had come across the 'Apache Wedding Blessing' which seemed very appropriate for the day. Helen, my speech therapist was helping me cope with some of the awkward words.
So...
Daniel took us home in relative silence and he and I went across to Mum's to tell her the grim news. We were all a bit 'shell shocked''. I said to Dan that it was possible that I wouldn't be at his wedding as I might be in hospital- his response was ' there will be no wedding if my Mam can't be there'!! I laughingly told him that he and Cathy would have to get married on Saturday coming as I'm due in hospital on Monday for a biopsy, and who know how things will progress after that. 'O.k' says he, 'we'll do that if it's o.k. with Cathy'! Cathy came back from work and, bless her, was in total agreement to change her wedding day - from that moment on (4p.m. Thurs) all hell broke loose in trying to get a wedding organised for the following Saturday (23rd April 2005) - but we did it and it turned out to be the most magical day imagineable. (And I got to read the wedding blessing!)
Back to mouth matters...
The next few weeks were pretty grim, just waiting for the date for the op. In fact the PEG clinic rang first with a date for the fitting. Unlike last time when I had the peg fitted only a few days prior to the big operation, this time it was done a few weeks' beforehand. It allowed time for everything to heal and settle down and, eventually, I was given a date of the 11th July to go into the RVI for my operation on the 12th.
Having been in and out of hospital a fair few times before, I was in no rush to arrive there early. I had a leisurley day packing my case and sorting the house out. It was a lovely hot sunny day and John and I were enjoying a cuppa in the garden when I heard the phone ringing in the house, it was one of the doctors asking where was I as they needed to have an xray done of my face ready for surgery the following day. The Xray department closes at 5p.m. and it was now 4.15p.m.!! Taxi was called and instructed to get to the RVI in double-quick time! The fact that it was approaching rush-hour meant he could make no promises! We got there at 4.50p.m. and one of the nurses and myself ran like crazy down the corridors, into the lift, outside and through the car park and round to the Dental Hospital like a couple of greyhounds (well maybe greyhounds that have been put out to grass!) We made it to the Xray Dept just as they were about to pack up. Mary, the nurse, put on her best smile and the Radiologist very kindly pushed me through - not literally - after which we sauntered back to the ward complete with 'pictures'...Phew!
John came into the ward first thing the next morning and escorted me down to theatre and, for a second time, I had to say goodbye to him and see that look of fear in his eyes.
As usual, I had to have the awake fibreoptic intubation palaver (camera up my nose and down throat before being anaesthetised) I dread this procedure more than the actual operation - well I'm alseep for that - but I have to say that this time it wasn't half as bad as usual as I can't remember much about it. Whatever they gave me on this occasion I want it in the future!
The next thing I remember was being wheeled into ITU on the trolley and shaking violently with cold thinking 'why doesn't someone put a blanket over me, I'm bloody freezing'. I could hear John telling me that all had gone well and that no soft tissue was needed for a graft. This meant the operation hadn't been as invasive as it might have been and I later learnt it had only lasted 11 hours, as opposed to 16 last time! I spent three days in ITU then back onto Ward 47 amongst all the familiar faces! There's something strange being welcomed like a long lost friend by the nursing staff - it's reassuring in one way, but also a bit scary that you are back for a repeat performance!
Mum came to visit one day just as a nurse was attending to my trachy, she had to wait a minute or so and used the time to write a long message on my notepad and stuck it under my nose once the nurse had finished. I read it and wrote her a reply 'I can hear, I just can't speak'!! i can always rely on Mum for a giggle.
Knowing more or less what was in store helped me cope better this time. I didn't panic so much and kept telling myself that each day was one nearer to getting home. I knew the drill ...drains out, drips down, trachy removed, stitches out, staples removed, cather removed,walking plaster on leg (can get to loo at last!) and feeding drip removed (= manage my own peg feeds)
I surprised myself how quickly I seemed to be progressing and felt stronger and wanted to do more each day. Not only could I swallow but could taste as well. I was merrilly tucking into soup and yogurts until Mr O'D put a ban on all but clear fluid, in other words water! He didn't want food getting into the stitch line in my mouth and causing an infection. Makes sense I suppose but it thoroughly p....d me off!
I finally got home after eleven days in hospital to be cared for by my wonderful husband and family. My friends had organised a rota system for popping in to let John go to his office for a few hours each day. My good friend, Carol, travelled with me to umpteen hospital appointments and she also saw to the smooth running of the 'rota'.
I did have a little hiccup when a piece of tissue came away inside my cheek, leaving a hole which revealed a bit of the jawbone. I was told to go back on full-time PEG feeding and only water to drink. I was faced with the possibility of another operation if the hole didn't heal. After about a month of this regime I was delighted when Mr O'D told me it had healed well enough to be able to go back to my "normal" diet. I really missed my daily Scandishakes - a prescription milk shake which tastes delicious!
I'm about eight weeks down the line now and everything has healed well, but for a bit of swelling in my left ankle. I have lots more energy and everyone tells me how well I look and how good my speech is. I was visiting an aged Aunt last week, she saw the scar on my chin and said " aw pet, have you had a knock? it looks nasty"!
Once again I want to say a big THANK YOU to my wonderful medical team, headed by Mr Joe O'Donoghue. To quote a friend who accompanied me on a follow-up visit "Brenda, ...you couldn't have had better care if you had been paying for it"!! Amen to that.
As I have said before on this blog, my type of cancer cell does not respond to radiotherapy or chemotherapy so surgery is the only option. Mr O'Donoghue did point out that a second operation would probably not be as "easy" as the first, or as successful, as the surgeons are dealing with scar tissue from the first operation, plus damaged nerves, and there is not always such a good blood supply. My ability to swallow could be affected which might mean permanently feeding through a peg (tube in tummy). Also that I would 'dribble' a lot more than last time - that filled me with horror! My speech would probably be further affected. I realise that I have to be told the worst things that could happen and I might have misheard a lot of the details. Aas you can imagine, when you are told you have cancer for a second time it is not always easy to focus well on all that is being said. I was asked what I wanted to do and, of course, I didn't have much of a choice so agreed to go ahead with another operation. I would, of course, need to have another peg fitted prior to this op.
Mr O'D also told me I have signs of the cancer in both lungs but, for the time being, as I have no symptoms, it would be prudent to leave them alone but keep a regular check on them.
I was feeling sick to my stomach at the thought of going through the operation again. We were both very shocked and emotional and Amanda, my Macmillan nurse, took us into the next room where we tried to take in the news. John rang Dan to ask him to come and take us home - where we could blubber 'til our heart's content!
I Digress:
Did I mention that Dan and Cathy were getting married on 21st May? The family had been full of 'busy' preparing for the big day. Mum was making he cakes, Dan and Cathy had designed, printed and sent out the invitations. Cathy had her wedding dress and the rest of us were more or less 'kitted out'! I spent every possible moment on Ebay buying decorations for the reception hall, getting the serviettes printed and making the 'favours' for the table. Cathy had very kindly asked me to do a 'blessing' for them and I had come across the 'Apache Wedding Blessing' which seemed very appropriate for the day. Helen, my speech therapist was helping me cope with some of the awkward words.
So...
Daniel took us home in relative silence and he and I went across to Mum's to tell her the grim news. We were all a bit 'shell shocked''. I said to Dan that it was possible that I wouldn't be at his wedding as I might be in hospital- his response was ' there will be no wedding if my Mam can't be there'!! I laughingly told him that he and Cathy would have to get married on Saturday coming as I'm due in hospital on Monday for a biopsy, and who know how things will progress after that. 'O.k' says he, 'we'll do that if it's o.k. with Cathy'! Cathy came back from work and, bless her, was in total agreement to change her wedding day - from that moment on (4p.m. Thurs) all hell broke loose in trying to get a wedding organised for the following Saturday (23rd April 2005) - but we did it and it turned out to be the most magical day imagineable. (And I got to read the wedding blessing!)
Back to mouth matters...
The next few weeks were pretty grim, just waiting for the date for the op. In fact the PEG clinic rang first with a date for the fitting. Unlike last time when I had the peg fitted only a few days prior to the big operation, this time it was done a few weeks' beforehand. It allowed time for everything to heal and settle down and, eventually, I was given a date of the 11th July to go into the RVI for my operation on the 12th.
Having been in and out of hospital a fair few times before, I was in no rush to arrive there early. I had a leisurley day packing my case and sorting the house out. It was a lovely hot sunny day and John and I were enjoying a cuppa in the garden when I heard the phone ringing in the house, it was one of the doctors asking where was I as they needed to have an xray done of my face ready for surgery the following day. The Xray department closes at 5p.m. and it was now 4.15p.m.!! Taxi was called and instructed to get to the RVI in double-quick time! The fact that it was approaching rush-hour meant he could make no promises! We got there at 4.50p.m. and one of the nurses and myself ran like crazy down the corridors, into the lift, outside and through the car park and round to the Dental Hospital like a couple of greyhounds (well maybe greyhounds that have been put out to grass!) We made it to the Xray Dept just as they were about to pack up. Mary, the nurse, put on her best smile and the Radiologist very kindly pushed me through - not literally - after which we sauntered back to the ward complete with 'pictures'...Phew!
John came into the ward first thing the next morning and escorted me down to theatre and, for a second time, I had to say goodbye to him and see that look of fear in his eyes.
As usual, I had to have the awake fibreoptic intubation palaver (camera up my nose and down throat before being anaesthetised) I dread this procedure more than the actual operation - well I'm alseep for that - but I have to say that this time it wasn't half as bad as usual as I can't remember much about it. Whatever they gave me on this occasion I want it in the future!
The next thing I remember was being wheeled into ITU on the trolley and shaking violently with cold thinking 'why doesn't someone put a blanket over me, I'm bloody freezing'. I could hear John telling me that all had gone well and that no soft tissue was needed for a graft. This meant the operation hadn't been as invasive as it might have been and I later learnt it had only lasted 11 hours, as opposed to 16 last time! I spent three days in ITU then back onto Ward 47 amongst all the familiar faces! There's something strange being welcomed like a long lost friend by the nursing staff - it's reassuring in one way, but also a bit scary that you are back for a repeat performance!
Mum came to visit one day just as a nurse was attending to my trachy, she had to wait a minute or so and used the time to write a long message on my notepad and stuck it under my nose once the nurse had finished. I read it and wrote her a reply 'I can hear, I just can't speak'!! i can always rely on Mum for a giggle.
Knowing more or less what was in store helped me cope better this time. I didn't panic so much and kept telling myself that each day was one nearer to getting home. I knew the drill ...drains out, drips down, trachy removed, stitches out, staples removed, cather removed,walking plaster on leg (can get to loo at last!) and feeding drip removed (= manage my own peg feeds)
I surprised myself how quickly I seemed to be progressing and felt stronger and wanted to do more each day. Not only could I swallow but could taste as well. I was merrilly tucking into soup and yogurts until Mr O'D put a ban on all but clear fluid, in other words water! He didn't want food getting into the stitch line in my mouth and causing an infection. Makes sense I suppose but it thoroughly p....d me off!
I finally got home after eleven days in hospital to be cared for by my wonderful husband and family. My friends had organised a rota system for popping in to let John go to his office for a few hours each day. My good friend, Carol, travelled with me to umpteen hospital appointments and she also saw to the smooth running of the 'rota'.
I did have a little hiccup when a piece of tissue came away inside my cheek, leaving a hole which revealed a bit of the jawbone. I was told to go back on full-time PEG feeding and only water to drink. I was faced with the possibility of another operation if the hole didn't heal. After about a month of this regime I was delighted when Mr O'D told me it had healed well enough to be able to go back to my "normal" diet. I really missed my daily Scandishakes - a prescription milk shake which tastes delicious!
I'm about eight weeks down the line now and everything has healed well, but for a bit of swelling in my left ankle. I have lots more energy and everyone tells me how well I look and how good my speech is. I was visiting an aged Aunt last week, she saw the scar on my chin and said " aw pet, have you had a knock? it looks nasty"!
Once again I want to say a big THANK YOU to my wonderful medical team, headed by Mr Joe O'Donoghue. To quote a friend who accompanied me on a follow-up visit "Brenda, ...you couldn't have had better care if you had been paying for it"!! Amen to that.
Tuesday, January 18, 2005
Great Start to the New Year!
Happy 2005 to all. I started mine back in hospital. Christmas went very well with the family rallying round to cook the Christmas dinner - which was lovely (even though mine was pureed!) I even managed a jive with my husband, John, plus all the naff dances that you do at family parties...great fun. We had a quiet New Years eve, which is unusual for us as we normally host a party for friends and neighbours, but not this year, I didn't have the energy. I had started to feel a lot of pain in my jaw and my neck was tightening even more - which is always frightening. This got worse as the day wore on and by night-time I was very down and distressed. John rang Ward 47 at the RVI and the doctor there said to come in, so by midnight on New Year's day I was back in hospital. I spent five days in the RVI just on painkillers and antibiotics. As it was the holiday period it was difficult to see the same doctor two days running - my own consultant was away on holiday. One doctor wanted to see my recent CT scan results before saying I could go home and as this was done at a different hospital it took about two days to get them transferred. Eventually they surfaced and it was in the evening, after visiting time, before the doctor could read them. She told me what my own consultant had already reported the week before but added that something else was showing up in my left lung - two nodules/nodes I think she said - these were cause for concern and she mentioned a biopsy, possible chemo and/or another operation. I was devastated. John had just gone home and I knew Dan was due to pop in, so I went down to the "Quiet Room" to collect my thoughts for a few minutes. At that point I was sure I would never get home again.
Back to my room and Dan was waiting for me - I told him the news - he was lovely. The doctor came back in and went over it all again for him. Dan thought I should ring John and get him back in. Within about five minutes that same doctor returned, she had contacted my consultant on his mobile and apparently he was aware of the nodules and had discussed it with the relevant parties and decided that they were not a cause for concern and nothing was to be done about them!!! Talk about a roller coaster ride.
Saw my consultant last week who reassured me that for the present time anyway nothing would be done. I will see him in a month's time when he will arrange for another scan.
I'm pleased to say I have been feeling much stronger with more energy these past couple of weeks. So I'm just looking ahead and trying to get the house sorted before Dan's wedding in May.
It's amazing how much we (those with oral cancer) actually put up with every day. They say one can get used to anything! Never in my wildest dreams did I think I would be able to cope each day with constant tightening of my tongue, choking in my neck, pain in my jaw, unable to speak properly and existing on a soupy diet - but exist and make the best of it we do!!! I know I have much to be thankful for and thank God for my wonderful family, especially John who has to share this with me each day, also fantastic friends who never stop supporting me with their acts of kindness, prayers etc.
I also must sing the praises of our wonderful NHS - who are more used to being slated than praised. I can only say that I have received nothing but first class treatment during this ordeal - from the wonderful multi-disciplinary team who carried out the main operation and who continue to monitor me as an outpatient, to the nursing staff on ward 47 and HDU at the RVI, my own GP and the District Nurses, the Plastics unit, Peg Dept., Speech Therapist, Dieticians, Macmillan nurses, Physios, Dental staff, St Oswald's hospice staff ..the list goes on and on. If I lived in a country where all this had to be paid for up front I dread to think what the cost would be. A BIG THANK YOU TO ALL OF YOU.
Back to my room and Dan was waiting for me - I told him the news - he was lovely. The doctor came back in and went over it all again for him. Dan thought I should ring John and get him back in. Within about five minutes that same doctor returned, she had contacted my consultant on his mobile and apparently he was aware of the nodules and had discussed it with the relevant parties and decided that they were not a cause for concern and nothing was to be done about them!!! Talk about a roller coaster ride.
Saw my consultant last week who reassured me that for the present time anyway nothing would be done. I will see him in a month's time when he will arrange for another scan.
I'm pleased to say I have been feeling much stronger with more energy these past couple of weeks. So I'm just looking ahead and trying to get the house sorted before Dan's wedding in May.
It's amazing how much we (those with oral cancer) actually put up with every day. They say one can get used to anything! Never in my wildest dreams did I think I would be able to cope each day with constant tightening of my tongue, choking in my neck, pain in my jaw, unable to speak properly and existing on a soupy diet - but exist and make the best of it we do!!! I know I have much to be thankful for and thank God for my wonderful family, especially John who has to share this with me each day, also fantastic friends who never stop supporting me with their acts of kindness, prayers etc.
I also must sing the praises of our wonderful NHS - who are more used to being slated than praised. I can only say that I have received nothing but first class treatment during this ordeal - from the wonderful multi-disciplinary team who carried out the main operation and who continue to monitor me as an outpatient, to the nursing staff on ward 47 and HDU at the RVI, my own GP and the District Nurses, the Plastics unit, Peg Dept., Speech Therapist, Dieticians, Macmillan nurses, Physios, Dental staff, St Oswald's hospice staff ..the list goes on and on. If I lived in a country where all this had to be paid for up front I dread to think what the cost would be. A BIG THANK YOU TO ALL OF YOU.
Monday, December 13, 2004
Second Operation
I have been waiting to go back into hospital to have some of the "flap" removed. It's called a De-bulking. It just means reducing some of the artificial tongue to enable me to speak and eat better. I suppose it is difficult to get it just right at the original operation and better to give you too much rather than too little. I got my date to go into the RVI Newcastle on 15th November and was told that I would need an "awake fibreoptic intubation". Apparently this is because of scaring in my throat from the first op - it is a procedure that takes place before they put you "under" which entails putting a camera up your nose and down the back of your throat to enable the anaesthetist to see where he's going! It takes about 50 minutes and is not a very pleasant experience. I'm told I will need this procedure every time I need surgery in the future. A jolly prospect! The operation over and I was allowed home the following day. My tongue looked good and the flap bit was now pink for the first time.
It's now three week's on and the stitch line on my tongue has gone all lumpy (overgranulation) so can't honestly say I feel much benefit as yet. Saw my consultant last week and he assures me it will settle down. Also my neck feels very tight, as if I'm choking, which is not very pleasant. Hopefully that too will settle down. The positive side is that my own tongue has more room to move and I am better able to control food. I am managing to eat slightly more lumpy food. I am to have a CT scan soon so will report back when I know more.
As I mentioned previously, I have had some Christmas cards designed and as a final push to raise funds for the Mouth Cancer Foundation I, with a lot of help from my friends, had a stall in the reception area of North Tyneside General Hospital. We raised a further £60 and, hopefully, this week can send off a cheque for £1,300. It has been a really action packed week as my Mum celebrated her 80th birthday on Wednesday and I organised a party for 45 people in the house. We also went out for a meal as a family, which was the first time I had "eaten out". The restaurant kindly pureed my meal and I managed to get it down o.k. but by the end of the evening I was feeling a bit sickly and had to get out for some air. I think I was just tired.
Well its nearly Christmas and lots to do beforehand. Happy Christmas to anyone reading this and a peaceful and healthy new year.
It's now three week's on and the stitch line on my tongue has gone all lumpy (overgranulation) so can't honestly say I feel much benefit as yet. Saw my consultant last week and he assures me it will settle down. Also my neck feels very tight, as if I'm choking, which is not very pleasant. Hopefully that too will settle down. The positive side is that my own tongue has more room to move and I am better able to control food. I am managing to eat slightly more lumpy food. I am to have a CT scan soon so will report back when I know more.
As I mentioned previously, I have had some Christmas cards designed and as a final push to raise funds for the Mouth Cancer Foundation I, with a lot of help from my friends, had a stall in the reception area of North Tyneside General Hospital. We raised a further £60 and, hopefully, this week can send off a cheque for £1,300. It has been a really action packed week as my Mum celebrated her 80th birthday on Wednesday and I organised a party for 45 people in the house. We also went out for a meal as a family, which was the first time I had "eaten out". The restaurant kindly pureed my meal and I managed to get it down o.k. but by the end of the evening I was feeling a bit sickly and had to get out for some air. I think I was just tired.
Well its nearly Christmas and lots to do beforehand. Happy Christmas to anyone reading this and a peaceful and healthy new year.
Thursday, November 25, 2004
Mouth Cancer Awareness Week 7th/13th Nov 04
I have found a very helpful website dealing with people who have or have had mouth cancer. The message board allows anyone to post a question, ask advice or just generally have a moan amongst people who know exactly how you are feeling. The site is run by a professional medic who answers medical queries or refers you to a relevant link. It can be found under www.rdoc.org.uk. The British Dental Association, who were backing Mouth Cancer Awareness week came onto the site to ask for volunteers willing to give their case histories to the press. I readily volunteered and was contacted by the Newcastle Evening Chronicle, who used my story as part of their Health supplement to further mouth cancer awareness: www.icenewcastle.co.uk "I'm still smiling". In an effort to further the cause I held a coffee morning at home and was staggered by the response. With the help of a few of my friends we welcomed over 90 people through the door and raised in excess of £1,200!! Added to this I have had a Christmas card printed dedicated to oral cancer awareness - three angelic choir boys with mouths open in song (with tongues showing, of course!) and they are selling like "hot cakes". I fully intend to keep the "bit" between what teeth I have left and will look for other opportunities to raise awareness of this little known cancer.
Tuesday, November 23, 2004
Brenda's Ob
Perhaps I should explain why I have called this "Brenda's OB". Having had half of my tongue removed I obviously have some difficulty speaking and the most difficult words to say are those with a "hard g" in them: i.e. giggle, wiggle, good etc. Therefore, when someone asked me what I would call my blog I said "Brenda's ob" which actually means Brenda's Gob!! After all, this story is about my mouth!
Monday, November 08, 2004
My Story
Hello, I'm Brenda, a 57-year-old housewife from Whitley Bay in the North East of England. My husband is John and we have a son, Daniel 28 who lives with his partner Cathy about 12 miles away and we have a daughter Becky 26 who lives and works in Leeds. My Mum, Mary, lives just across the road from us with her Jack Russell, Roxy and, last of all, there's Rosie our cocker spaniel dog!
FIRST SIGNS
About two years ago I started with a small red blob under my tongue, which was diagnosed as a blocked saliva gland, which was accumulating little stones. After being referred to an ENT specialist I was eventually admitted as a day patient and had the lump removed. Six months later it was back again and was duly admitted for a further minor operation, with the understanding that the actual saliva gland would be removed in the future to stop any further accumulation of stones. At the follow-up appointment I was told that the biopsy result had shown signs of a tumour, but not to worry as this is an extremely slow growing cell - to quote the doctor" I cannot stress how low grade this type of tumour is". A CT scan was arranged for some weeks hence.
Up to that point I had always gone into the consulting room on my own but just before I was called John said he would like to come in with me…."OK if you want to but I will be fine" He followed me in and whereas on previous occasions I had only ever seen one doctor, this time I was confronted with what seemed like a room packed with faces, only one of which I had ever seen before. Everyone was introduced to us but all I heard was "plastic surgeon" - "maxillofacial professor" blah blah blah…. I thought "what on earth has all this to do with me" A lot of talk went on, none of which I can remember, and then was asked to go for an x-ray and bring the film back. The film was put up on the wall and then it started…'We are going to take out your lower jawbone and replace it with a bone from your leg…Remove half your tongue and replace that with a flap (why do they use this word!) which will come from the soft tissue in your forearm…. then a skin graft will be taken from your thigh to cover the forearm. You will need a tracheotomy…plus we will need to feed you so you have a choice of a nasal tube or a peg fitted in your stomach'. During all this we were standing and my husband had his arm around me, as this news was coming at us his hand was stroking my back - the strokes were getting faster and faster and all I could think was "will you STOP RUBBING MY BACK" and shoved his hand away. It must have looked odd to the team standing behind us!
I opted for a peg to be fitted as I reckoned there would be enough going on in the facial area thank you very much.
All sorts of details were being discussed but I just shut off, I couldn't take it all on board. Then a very pretty nurse came over and introduced herself as my Macmillan nurse, she had taken copious notes and said she would call to my home to go over all this in detail. Thank God.
We drove home in stunned silence - my biggest worry was how do I tell my mother. As always Mums are tougher than you give them credit for and she started sorting out the practical side of things. I'm sure she will have had her "moments" in private.
HOSPITAL
Up to that point the tumour hadn't moved much but within the next two weeks it was pushing my bottom teeth out of place and coming through the jawbone and gum. I would lay awake at night and feel this strange sensation in my gums. I made another appointment to see "the team" who agreed that it was growing rapidly now but they couldn't bring the operation forward. So at the end of February 2004 I was admitted to have the peg fitted, which was a bit of an ordeal as it was very tight. I felt as if I had on a bra that was far too tight around my ribs. I had the major surgery on 2nd March. The operation lasted 16 hours and my family were out of their minds with worry. Apparently John kissed both surgeons as they left the hospital at one o'clock in the morning!!
Needless to say I don't remember a thing until waking up in ITU some eight hours later with John, Dan and Becky peering over me. The first thing I did was gesture for a pad and paper and scrawled a message..."shut that door I'm in a draught" which caused great hilarity for some reason! My ITU nurse was an absolute angel and I was sorry to lose her when I went into the open ITU ward the next day. The noise level in there was unbelievable and the nursing staff seemed more interested in whose turn was it for a tea break than tending to their patients. They have you over a barrel as you can't move or speak and are totally dependent on them for everything - even wiping your bum, which in my case was a near full time job as the Jevity gave me the runs for days. I remember one time being woken from a morphine-induced sleep only to have someone in my face doing a questionnaire on the noise levels in the ITU ward. It was one thing trying to move my head to say "yes" or "no" but quite another trying to sign the damned thing whilst strapped into a straightjacket of a heat blanket.
Once I was able to "take in" my predicament I became aware that my head was three times its normal size and practically every part of my face and neck was numb (I was not conscious of the hundreds of staples and stitches around my chin and neck at that point in time). I had a trachie in my throat to breathe. My left forearm was heavily bandaged. Right leg was encased in some splint and bandaged. Left thigh had some strapping on it. Drains were coming from both sides of my neck, leg and arm. I had a catheter fitted, plus of course the feeding tube to the peg in my stomach. Not a pretty sight but as one of the nursing staff had told me on the pre-visit - "You will come in here relatively healthy and we are going to make you very poorly". How right she was!!
From ITU I was put on a "Special Care" ward or "Hot House" where the temperature has to be kept near boiling point for the sake of the flap! The only other patient in there was a man in a bed like a spaceship, which made the most dreadful noise all the time. I still had 'the trots', much to the delight of the over-worked nurses. I must have pressed the buzzer at least twelve times one night. I was very popular!
As well as the obvious discomfort experienced in the early days of this operation I was told I had contracted the MRSA virus and therefore had to be isolated. So was wheeled off to a side ward late one evening. Apparently the man in the spaceship told one of the nurses that I had died through the night as he saw them wheel me away!
I can't speak too highly of the nursing staff on that ward but, as I'm sure those of you who have had this operation will know, allowing patients to sleep is not part of their remit. I can't remember sleeping for more than two hours at any one time during the weeks I was in hospital and, in the early days, was woken at regular intervals during the night so they could do the 'obs', which included the ultra sound on the flap. I got to where I would find the 'spot' myself to hurry the process up and get back to sleep. I say sleep but the droning sound of the feeding apparatus was nothing short of torture. Someone on this site has likened it to a mooing sound but I felt there was some gremlin in there singing "Old Macdonald had a farm" with all the accompanying animal noises! This would go on for sixteen hours out of twenty-four, day in and day out. Added to which would be the noise from the trachie machine, plus the all the usual bleeps, bells and bustle of a busy ward. As someone said, "a hospital is a workplace" so I guess it's unreasonable to expect some peace.
Every day brought its own traumas and every day I was convinced would be my last on this earth. I absolutely dreaded visits from the Trachie nurse. She was convinced there was 'something' to "get up" off my chest and would ram that blasted probe down the pipe time and time again - I would be purple in the face and was sure the staples in my neck were about to burst. She never succeeded in finding anything and I kept telling her I have never had chest problems and would know if I had, but nothing deterred her.
I had no less than four trachie tubes fitted, some in theatre under local anaesthetic and one by the ward sister in my hospital bed As you probably know they have to be sewn in. No wonder my neck area is like a patchwork quilt! I thanked God when I was finally able to make a noise from my throat and was allowed to have the tube removed…bliss!
Having the staples removed was not as bad as I had imagined. They take out every other one to start with and a student nurse was doing this. It was his first attempt at taking out staples from a neck dissection and I'm pleased to say I hardly felt a thing but the poor lad was dripping with sweat at the end of it.
There were regular visits from the Physiotherapist who would put me through my paces with arm, neck and leg exercises. Also the Speech Therapist would pop in with lists of words to say, mouth/tongue exercises and gently encouragement to sip water from a spoon.
My wonderful surgeon would call each morning on his rounds and I always felt I could tell him my worries and concerns and, nine times out of ten, he would allay my fears. The best days were the two occasions he brought news of the biopsies of the soft tissue and bone taken out at the operation - both had "good margins" - which was great cause for celebration! My type of cancer cell is called an Acinic cell, which apparently does not respond well to radiotherapy.
My family visited each day, although I wouldn't allow my mum to visit as I thought it would upset her too much. John visited twice a day, armed with a shopping bag with clean nightwear etc for me, plus umpteen cards and messages from friends which he was keen to read to me but I was usually either in too much pain or too tired to listen and he would have to take them home again, only to return the next day with even more and again he would cart them back home. He was nicknamed Roy Cropper (of Coronation Street fame) as he was forever carrying his shopping bag! I have since read and appreciated all the 300+ cards, which papered the walls on my return home from hospital
Dan and Cathy would call in towards the end of visiting. Dan would bring his guitar and softly strum my favourite 60's tunes whilst he and Cathy sang to me. Becky would call in, usually when no one else was there, and bring a bottle of rose oil to give me a massage. There was very little area of skin to go at as everywhere had a dressing on it but she would massage my back and lower left leg.and even rubbed talc on my sore bottom! Bless her! (I had a bedsore on my back and bum).
With all the swelling to my face I used to dread looking in the mirror as each day I seemed to take on a different "look". My catchphrase would be "Tonight Matthew I'm going to be…Buzz Lightyear../ Desperate Dan ..Elephant Man! Depending on who looked back at me from the mirror.
After a week of worrying how Mum would react to seeing her daughter in this state I finally agreed to her visiting. She came through the door saying "what was all the fuss about, you look great"!! She visited every day after that and, as is her way, brought laughter and mayhem with her. I was always exhausted after her visits as, not able to speak, I would be frantically trying to keep up by scribbling away. What a wonderful day it was when I eventually found my voice again, well not really MY voice but someone's voice! My mother's face was a picture when I actually replied as she came through the door with her usual "how are you today" - although it took a good minute before it dawned on her that I had actually said "crap"!!
Bit by bit the drains would disappear, staples would be removed, catheter taken out, more manageable dressings on the arm (still had plaster on leg of course), go walkabout during the peg-feed-free hours and, BLISS, able to use the toilet instead of the dreaded bedpans. The best day of all of course is when the doctor says you can finally go home.
AT HOME
I walked into the lounge to find the walls 'papered' with get-well cards and flowers everywhere. It was wonderful to be home, but also very scary. After three weeks of nursing care with every question answered, medication and dressings administered it's a bit daunting to be left to your own devices. As time goes on you gain confidence and fall into a new routine with the safety net of being able to telephone the ward if you hit a real problem…. Just as we did after about a week of being home. I had taken my night meds and was just going to bed when something fell on the floor and rolled under the bed. It took a few seconds before I realised that my peg was missing!! YIKES! I screamed for John who ran up the stairs four at a time. "Don't panic" I told him (as he is a panicker!) We rang the ward sister who very calmly told us to wash the peg, stick it back in as best we could and put a dressing over it until morning, then come back on the ward where they will re-fit it. I had a pretty sleepless night and we were up and out early next morning, arriving by taxi at the hospital about 7.30 a.m.! We waited in the day room for quite some time but eventually was given my "old" side-room back as I was still MRSA positive. It was late in the day when the peg nurse came to check me over, only to be told that I would have to see the doctor in the morning… not being able to eat anything and having no peg to feed through I was beginning to feel quite woozie. Added to this, the stitches on the back of my tongue were starting to irritate the back of my throat, making me "gag" all the time. I was sent over to another hospital to be checked over by their ENT department. After hours of waiting, by which time I was getting very distressed, a doctor finally had a look down my throat. I had a banana flavoured spray put up my nose to anaesthetise the passageway then a probe was put up my nose and down to see the back of my throat. He could see that stitches were "dangling" and proceeded to cut the stray bits off. Not a procedure I would wish to go through again in a hurry! Whereas none of this is particularly painful it is extremely distressing when you are tired, hungry and continually retching. I had had two anti sickness injections, neither of which seemed to have any effect. John was really worried about me, as I was just so weak.
Back to my original hospital for a much-needed sleep. I sent John home and my darling daughter, Becky, stayed with me. At last the nurse came for me to go down to the X-ray theatre when the new peg would be fitted. Becky was told I would be back on the ward in about twenty minutes. I waited over two hours on a trolley in the peg unit and I was getting very weary, not to say exasperated. At last my turn came and the same doctor who had fitted the first peg was going to fit this one. I was able to ask him not to put it in so tightly this time! 'Great' I thought, 'at last I can have some food' No such luck, I was told the peg has to be left for 'so many' hours and then only water can be flushed through. I could start putting food through after twelve hours! LET ME GET OUT OF HERE.
Next day I get my wish and am allowed home (with a determination never to allow this peg to fall out again).
ONE MONTH LATER
My wonderful sister in law, Gail, insisted on coming over from Australia to look after me and give John a well-earned break. She was an absolute angel. As well as looking after my every need she did all the shopping and prepared the most delicious meals (according to the rest of the family), I could only take in the smells! She would give me a soothing massage every night, which helped to reduce some of the swelling in my neck and jaw. She was totally "tuned in" to my mood, suggesting we ring the hospital for advice (and on two occasions actually turning up there) when I was distressed about some aspect of my illness. She accompanied me on all my follow-up appointments for dressings, physiotherapy etc. Everyone should have a 'Gail' to take care of them after this operation! My brother joined her after a few weeks and he too would massage my back and neck and try to encourage me to acquire "positive" energy. I am so grateful to them both for helping me over some of the early days when everything seems so strange and frightening.
RECOVERY
There were many occasions when something would tighten in my neck and I was convinced I was going to choke to death. Some days I would be plagued with a strong salty taste in my mouth and no amount of sipping water would reduce it. Another time I would get a "furry" feeling on or under my tongue - thrush maybe? After weeks of gargling with Nystatin the feeling was still there. Each day would present a myriad of different tastes and sensations and whenever I asked a medical expert for their opinion on these strange happenings the answer was always the same: "Its all part of the healing process"! Eventually you learn to accept that each day will present a different challenge and you just have to condition yourself to cope with it. Some days are easier than others!
MOUTH CARE
It is essential to carry out a strict oral hygiene routine. Mouth packs were readily available whilst in hospital but I have to remember to keep a stock of them at home at all times. The little pink sponge-sticks are excellent for cleaning the roof of the mouth and all around the tongue and flap. A baby toothbrush is nice and soft for cleaning what teeth are left. I also use a cotton bud for gently cleaning under the tongue and then swish round with a good mouthwash. Its amazing how even the slightest particle on the tongue now takes on mammoth proportions. Everything is so exaggerated!
SWALLOWING
We take for granted how automatic it is to swallow our food but after this operation all that once came naturally to us has to be learnt all over again. Even sipping water seems an enormous task. The Speech Therapist visits in hospital and gently encourages you to sip from a teaspoon or baby-cup. I know there are lots of people who cannot swallow their own saliva and this can persist for many months. I was one of the 'lucky' ones as I did manage to take little sips of water and even managed a cool cup of tea by the time I was ready to leave hospital. Anything with more substance was a definite 'no-no'. One of the nurses introduced me to a man in the next ward who was a week ahead of me with his operation. He was managing to eat yoghurt - WOW did I admire him!
Once home I was having five Jevity feeds per day through the peg in my stomach, plus all my medicines and water, which is needed to flush through the tubes. Meantime I was expected to keep trying things like juice and milk, but I must admit that I found most things very difficult to swallow. My Speech Therapist, Helen, who visited me at home once a week, was wonderful. She would have little 'tricks' which would help me to get things down, such as closing the back of the throat, sipping a little water, slowly lean head back and gravity would take the fluid to the back of the mouth, then open the throat and gently swallow. Walla gone! Also, to imagine that you are swallowing a large pill/tablet and practice swallowing hard, this is to strengthen the muscles in the back of your mouth. Eventually things start to happen and bit by bit you move on to ever more viscous things.
DRIBBLING
I went through a particularly distressing period when I was dribbling all the time. Saliva would collect at the front of my mouth and run down the scar line on my lip, which was (and still is) numb. I resorted to wearing a bib all the time. My mother would make the bibs from face cloths, sewing tabs on for tying and decorate them with pretty flowers!! I would use seven or eight of these per day and was constantly dabbing my chin, which became red and sore. This went on for quite some time; even the prescription patches made no difference. Then, all of a sudden, the dribbling stopped!
DIET
Once I had graduated to managing food of a 'soupy' consistency the problem then was …what to eat? All propriety brands were too thick, too salty or too bitty. We scoured the Internet for ideas and eventually found a book for people who can't chew. When it arrived most of the recipes were for flans, scrambled eggs, stews etc. in other words for people who COULD chew! After much trial and error we, John and me, have found the answer is to do a big weekly vegetable shop and have a mammoth peeling and preparing session, then liquidise the lot and freeze in containers which will hold enough for one day's meals. Just a little tip: keep all green vegetables separate from the rest as they tend to dominate the taste, just add as much as you wish to each meal.
Should anyone be looking how to get started, the recipe which works for me is; Carrots, onions, swede, sweet potato, butternut squash, leeks and potato. Obviously omitting anything you don't like and adding those that you do. Depending what is available I might add bell peppers, radishes, mushrooms, celery but nothing too spicy. As I said, cook cauliflower, broccoli, courgettes, cabbage, sprouts etc separately. I boil the first lot of veg in a large pan and cook the green ones in a steamer on the top. I can't tell you how many pounds of this or that, I just bung the lot in and boil for as long as it takes for the veg to soften. I cover the veg in water and add just one vegetable stock cube. Everyone will have their own ways of cooking and adding what they like but I find its safer to be a bit on the bland side and add stuff later, rather than ruin a whole batch of soup with too many strong flavours.
Then I liquidise the whole lot and put into containers (remember to leave enough out for your next few meals) and put the rest in the freezer.
This recipe is meant to act as a BASE for lunch and/or dinner. I just add a small portion of whatever the rest of the family is having for their dinner. For example:
I will add a small amount of stewing steak and gravy plus small dumpling
or
A small piece of Yorkshire pudding and whatever meat and gravy.
or
Salmon (or any fish) but you must check for bones first. I add a couple of chips!
Most things are ok. and adding gravy or sauces does flavour the soup. It is boring enough having to have a soupy meal every day but the taste doesn't have to be the same, or the colour!
Rice doesn't liquidise.
You can thicken with lots of things - cheese, cream, natural yoghurt, evaporated milk etc.
I sometimes add a bit of cheese scone - brioche bread - ordinary bread - half a tin of macaroni cheese - any pasta. I'm sure you will have lots of ideas of your own.
I then put into a large soup bowl and microwave until hot. (Add the cream/yoghurts etc after cooking!)
FIRST SIGNS
About two years ago I started with a small red blob under my tongue, which was diagnosed as a blocked saliva gland, which was accumulating little stones. After being referred to an ENT specialist I was eventually admitted as a day patient and had the lump removed. Six months later it was back again and was duly admitted for a further minor operation, with the understanding that the actual saliva gland would be removed in the future to stop any further accumulation of stones. At the follow-up appointment I was told that the biopsy result had shown signs of a tumour, but not to worry as this is an extremely slow growing cell - to quote the doctor" I cannot stress how low grade this type of tumour is". A CT scan was arranged for some weeks hence.
Up to that point I had always gone into the consulting room on my own but just before I was called John said he would like to come in with me…."OK if you want to but I will be fine" He followed me in and whereas on previous occasions I had only ever seen one doctor, this time I was confronted with what seemed like a room packed with faces, only one of which I had ever seen before. Everyone was introduced to us but all I heard was "plastic surgeon" - "maxillofacial professor" blah blah blah…. I thought "what on earth has all this to do with me" A lot of talk went on, none of which I can remember, and then was asked to go for an x-ray and bring the film back. The film was put up on the wall and then it started…'We are going to take out your lower jawbone and replace it with a bone from your leg…Remove half your tongue and replace that with a flap (why do they use this word!) which will come from the soft tissue in your forearm…. then a skin graft will be taken from your thigh to cover the forearm. You will need a tracheotomy…plus we will need to feed you so you have a choice of a nasal tube or a peg fitted in your stomach'. During all this we were standing and my husband had his arm around me, as this news was coming at us his hand was stroking my back - the strokes were getting faster and faster and all I could think was "will you STOP RUBBING MY BACK" and shoved his hand away. It must have looked odd to the team standing behind us!
I opted for a peg to be fitted as I reckoned there would be enough going on in the facial area thank you very much.
All sorts of details were being discussed but I just shut off, I couldn't take it all on board. Then a very pretty nurse came over and introduced herself as my Macmillan nurse, she had taken copious notes and said she would call to my home to go over all this in detail. Thank God.
We drove home in stunned silence - my biggest worry was how do I tell my mother. As always Mums are tougher than you give them credit for and she started sorting out the practical side of things. I'm sure she will have had her "moments" in private.
HOSPITAL
Up to that point the tumour hadn't moved much but within the next two weeks it was pushing my bottom teeth out of place and coming through the jawbone and gum. I would lay awake at night and feel this strange sensation in my gums. I made another appointment to see "the team" who agreed that it was growing rapidly now but they couldn't bring the operation forward. So at the end of February 2004 I was admitted to have the peg fitted, which was a bit of an ordeal as it was very tight. I felt as if I had on a bra that was far too tight around my ribs. I had the major surgery on 2nd March. The operation lasted 16 hours and my family were out of their minds with worry. Apparently John kissed both surgeons as they left the hospital at one o'clock in the morning!!
Needless to say I don't remember a thing until waking up in ITU some eight hours later with John, Dan and Becky peering over me. The first thing I did was gesture for a pad and paper and scrawled a message..."shut that door I'm in a draught" which caused great hilarity for some reason! My ITU nurse was an absolute angel and I was sorry to lose her when I went into the open ITU ward the next day. The noise level in there was unbelievable and the nursing staff seemed more interested in whose turn was it for a tea break than tending to their patients. They have you over a barrel as you can't move or speak and are totally dependent on them for everything - even wiping your bum, which in my case was a near full time job as the Jevity gave me the runs for days. I remember one time being woken from a morphine-induced sleep only to have someone in my face doing a questionnaire on the noise levels in the ITU ward. It was one thing trying to move my head to say "yes" or "no" but quite another trying to sign the damned thing whilst strapped into a straightjacket of a heat blanket.
Once I was able to "take in" my predicament I became aware that my head was three times its normal size and practically every part of my face and neck was numb (I was not conscious of the hundreds of staples and stitches around my chin and neck at that point in time). I had a trachie in my throat to breathe. My left forearm was heavily bandaged. Right leg was encased in some splint and bandaged. Left thigh had some strapping on it. Drains were coming from both sides of my neck, leg and arm. I had a catheter fitted, plus of course the feeding tube to the peg in my stomach. Not a pretty sight but as one of the nursing staff had told me on the pre-visit - "You will come in here relatively healthy and we are going to make you very poorly". How right she was!!
From ITU I was put on a "Special Care" ward or "Hot House" where the temperature has to be kept near boiling point for the sake of the flap! The only other patient in there was a man in a bed like a spaceship, which made the most dreadful noise all the time. I still had 'the trots', much to the delight of the over-worked nurses. I must have pressed the buzzer at least twelve times one night. I was very popular!
As well as the obvious discomfort experienced in the early days of this operation I was told I had contracted the MRSA virus and therefore had to be isolated. So was wheeled off to a side ward late one evening. Apparently the man in the spaceship told one of the nurses that I had died through the night as he saw them wheel me away!
I can't speak too highly of the nursing staff on that ward but, as I'm sure those of you who have had this operation will know, allowing patients to sleep is not part of their remit. I can't remember sleeping for more than two hours at any one time during the weeks I was in hospital and, in the early days, was woken at regular intervals during the night so they could do the 'obs', which included the ultra sound on the flap. I got to where I would find the 'spot' myself to hurry the process up and get back to sleep. I say sleep but the droning sound of the feeding apparatus was nothing short of torture. Someone on this site has likened it to a mooing sound but I felt there was some gremlin in there singing "Old Macdonald had a farm" with all the accompanying animal noises! This would go on for sixteen hours out of twenty-four, day in and day out. Added to which would be the noise from the trachie machine, plus the all the usual bleeps, bells and bustle of a busy ward. As someone said, "a hospital is a workplace" so I guess it's unreasonable to expect some peace.
Every day brought its own traumas and every day I was convinced would be my last on this earth. I absolutely dreaded visits from the Trachie nurse. She was convinced there was 'something' to "get up" off my chest and would ram that blasted probe down the pipe time and time again - I would be purple in the face and was sure the staples in my neck were about to burst. She never succeeded in finding anything and I kept telling her I have never had chest problems and would know if I had, but nothing deterred her.
I had no less than four trachie tubes fitted, some in theatre under local anaesthetic and one by the ward sister in my hospital bed As you probably know they have to be sewn in. No wonder my neck area is like a patchwork quilt! I thanked God when I was finally able to make a noise from my throat and was allowed to have the tube removed…bliss!
Having the staples removed was not as bad as I had imagined. They take out every other one to start with and a student nurse was doing this. It was his first attempt at taking out staples from a neck dissection and I'm pleased to say I hardly felt a thing but the poor lad was dripping with sweat at the end of it.
There were regular visits from the Physiotherapist who would put me through my paces with arm, neck and leg exercises. Also the Speech Therapist would pop in with lists of words to say, mouth/tongue exercises and gently encouragement to sip water from a spoon.
My wonderful surgeon would call each morning on his rounds and I always felt I could tell him my worries and concerns and, nine times out of ten, he would allay my fears. The best days were the two occasions he brought news of the biopsies of the soft tissue and bone taken out at the operation - both had "good margins" - which was great cause for celebration! My type of cancer cell is called an Acinic cell, which apparently does not respond well to radiotherapy.
My family visited each day, although I wouldn't allow my mum to visit as I thought it would upset her too much. John visited twice a day, armed with a shopping bag with clean nightwear etc for me, plus umpteen cards and messages from friends which he was keen to read to me but I was usually either in too much pain or too tired to listen and he would have to take them home again, only to return the next day with even more and again he would cart them back home. He was nicknamed Roy Cropper (of Coronation Street fame) as he was forever carrying his shopping bag! I have since read and appreciated all the 300+ cards, which papered the walls on my return home from hospital
Dan and Cathy would call in towards the end of visiting. Dan would bring his guitar and softly strum my favourite 60's tunes whilst he and Cathy sang to me. Becky would call in, usually when no one else was there, and bring a bottle of rose oil to give me a massage. There was very little area of skin to go at as everywhere had a dressing on it but she would massage my back and lower left leg.and even rubbed talc on my sore bottom! Bless her! (I had a bedsore on my back and bum).
With all the swelling to my face I used to dread looking in the mirror as each day I seemed to take on a different "look". My catchphrase would be "Tonight Matthew I'm going to be…Buzz Lightyear../ Desperate Dan ..Elephant Man! Depending on who looked back at me from the mirror.
After a week of worrying how Mum would react to seeing her daughter in this state I finally agreed to her visiting. She came through the door saying "what was all the fuss about, you look great"!! She visited every day after that and, as is her way, brought laughter and mayhem with her. I was always exhausted after her visits as, not able to speak, I would be frantically trying to keep up by scribbling away. What a wonderful day it was when I eventually found my voice again, well not really MY voice but someone's voice! My mother's face was a picture when I actually replied as she came through the door with her usual "how are you today" - although it took a good minute before it dawned on her that I had actually said "crap"!!
Bit by bit the drains would disappear, staples would be removed, catheter taken out, more manageable dressings on the arm (still had plaster on leg of course), go walkabout during the peg-feed-free hours and, BLISS, able to use the toilet instead of the dreaded bedpans. The best day of all of course is when the doctor says you can finally go home.
AT HOME
I walked into the lounge to find the walls 'papered' with get-well cards and flowers everywhere. It was wonderful to be home, but also very scary. After three weeks of nursing care with every question answered, medication and dressings administered it's a bit daunting to be left to your own devices. As time goes on you gain confidence and fall into a new routine with the safety net of being able to telephone the ward if you hit a real problem…. Just as we did after about a week of being home. I had taken my night meds and was just going to bed when something fell on the floor and rolled under the bed. It took a few seconds before I realised that my peg was missing!! YIKES! I screamed for John who ran up the stairs four at a time. "Don't panic" I told him (as he is a panicker!) We rang the ward sister who very calmly told us to wash the peg, stick it back in as best we could and put a dressing over it until morning, then come back on the ward where they will re-fit it. I had a pretty sleepless night and we were up and out early next morning, arriving by taxi at the hospital about 7.30 a.m.! We waited in the day room for quite some time but eventually was given my "old" side-room back as I was still MRSA positive. It was late in the day when the peg nurse came to check me over, only to be told that I would have to see the doctor in the morning… not being able to eat anything and having no peg to feed through I was beginning to feel quite woozie. Added to this, the stitches on the back of my tongue were starting to irritate the back of my throat, making me "gag" all the time. I was sent over to another hospital to be checked over by their ENT department. After hours of waiting, by which time I was getting very distressed, a doctor finally had a look down my throat. I had a banana flavoured spray put up my nose to anaesthetise the passageway then a probe was put up my nose and down to see the back of my throat. He could see that stitches were "dangling" and proceeded to cut the stray bits off. Not a procedure I would wish to go through again in a hurry! Whereas none of this is particularly painful it is extremely distressing when you are tired, hungry and continually retching. I had had two anti sickness injections, neither of which seemed to have any effect. John was really worried about me, as I was just so weak.
Back to my original hospital for a much-needed sleep. I sent John home and my darling daughter, Becky, stayed with me. At last the nurse came for me to go down to the X-ray theatre when the new peg would be fitted. Becky was told I would be back on the ward in about twenty minutes. I waited over two hours on a trolley in the peg unit and I was getting very weary, not to say exasperated. At last my turn came and the same doctor who had fitted the first peg was going to fit this one. I was able to ask him not to put it in so tightly this time! 'Great' I thought, 'at last I can have some food' No such luck, I was told the peg has to be left for 'so many' hours and then only water can be flushed through. I could start putting food through after twelve hours! LET ME GET OUT OF HERE.
Next day I get my wish and am allowed home (with a determination never to allow this peg to fall out again).
ONE MONTH LATER
My wonderful sister in law, Gail, insisted on coming over from Australia to look after me and give John a well-earned break. She was an absolute angel. As well as looking after my every need she did all the shopping and prepared the most delicious meals (according to the rest of the family), I could only take in the smells! She would give me a soothing massage every night, which helped to reduce some of the swelling in my neck and jaw. She was totally "tuned in" to my mood, suggesting we ring the hospital for advice (and on two occasions actually turning up there) when I was distressed about some aspect of my illness. She accompanied me on all my follow-up appointments for dressings, physiotherapy etc. Everyone should have a 'Gail' to take care of them after this operation! My brother joined her after a few weeks and he too would massage my back and neck and try to encourage me to acquire "positive" energy. I am so grateful to them both for helping me over some of the early days when everything seems so strange and frightening.
RECOVERY
There were many occasions when something would tighten in my neck and I was convinced I was going to choke to death. Some days I would be plagued with a strong salty taste in my mouth and no amount of sipping water would reduce it. Another time I would get a "furry" feeling on or under my tongue - thrush maybe? After weeks of gargling with Nystatin the feeling was still there. Each day would present a myriad of different tastes and sensations and whenever I asked a medical expert for their opinion on these strange happenings the answer was always the same: "Its all part of the healing process"! Eventually you learn to accept that each day will present a different challenge and you just have to condition yourself to cope with it. Some days are easier than others!
MOUTH CARE
It is essential to carry out a strict oral hygiene routine. Mouth packs were readily available whilst in hospital but I have to remember to keep a stock of them at home at all times. The little pink sponge-sticks are excellent for cleaning the roof of the mouth and all around the tongue and flap. A baby toothbrush is nice and soft for cleaning what teeth are left. I also use a cotton bud for gently cleaning under the tongue and then swish round with a good mouthwash. Its amazing how even the slightest particle on the tongue now takes on mammoth proportions. Everything is so exaggerated!
SWALLOWING
We take for granted how automatic it is to swallow our food but after this operation all that once came naturally to us has to be learnt all over again. Even sipping water seems an enormous task. The Speech Therapist visits in hospital and gently encourages you to sip from a teaspoon or baby-cup. I know there are lots of people who cannot swallow their own saliva and this can persist for many months. I was one of the 'lucky' ones as I did manage to take little sips of water and even managed a cool cup of tea by the time I was ready to leave hospital. Anything with more substance was a definite 'no-no'. One of the nurses introduced me to a man in the next ward who was a week ahead of me with his operation. He was managing to eat yoghurt - WOW did I admire him!
Once home I was having five Jevity feeds per day through the peg in my stomach, plus all my medicines and water, which is needed to flush through the tubes. Meantime I was expected to keep trying things like juice and milk, but I must admit that I found most things very difficult to swallow. My Speech Therapist, Helen, who visited me at home once a week, was wonderful. She would have little 'tricks' which would help me to get things down, such as closing the back of the throat, sipping a little water, slowly lean head back and gravity would take the fluid to the back of the mouth, then open the throat and gently swallow. Walla gone! Also, to imagine that you are swallowing a large pill/tablet and practice swallowing hard, this is to strengthen the muscles in the back of your mouth. Eventually things start to happen and bit by bit you move on to ever more viscous things.
DRIBBLING
I went through a particularly distressing period when I was dribbling all the time. Saliva would collect at the front of my mouth and run down the scar line on my lip, which was (and still is) numb. I resorted to wearing a bib all the time. My mother would make the bibs from face cloths, sewing tabs on for tying and decorate them with pretty flowers!! I would use seven or eight of these per day and was constantly dabbing my chin, which became red and sore. This went on for quite some time; even the prescription patches made no difference. Then, all of a sudden, the dribbling stopped!
DIET
Once I had graduated to managing food of a 'soupy' consistency the problem then was …what to eat? All propriety brands were too thick, too salty or too bitty. We scoured the Internet for ideas and eventually found a book for people who can't chew. When it arrived most of the recipes were for flans, scrambled eggs, stews etc. in other words for people who COULD chew! After much trial and error we, John and me, have found the answer is to do a big weekly vegetable shop and have a mammoth peeling and preparing session, then liquidise the lot and freeze in containers which will hold enough for one day's meals. Just a little tip: keep all green vegetables separate from the rest as they tend to dominate the taste, just add as much as you wish to each meal.
Should anyone be looking how to get started, the recipe which works for me is; Carrots, onions, swede, sweet potato, butternut squash, leeks and potato. Obviously omitting anything you don't like and adding those that you do. Depending what is available I might add bell peppers, radishes, mushrooms, celery but nothing too spicy. As I said, cook cauliflower, broccoli, courgettes, cabbage, sprouts etc separately. I boil the first lot of veg in a large pan and cook the green ones in a steamer on the top. I can't tell you how many pounds of this or that, I just bung the lot in and boil for as long as it takes for the veg to soften. I cover the veg in water and add just one vegetable stock cube. Everyone will have their own ways of cooking and adding what they like but I find its safer to be a bit on the bland side and add stuff later, rather than ruin a whole batch of soup with too many strong flavours.
Then I liquidise the whole lot and put into containers (remember to leave enough out for your next few meals) and put the rest in the freezer.
This recipe is meant to act as a BASE for lunch and/or dinner. I just add a small portion of whatever the rest of the family is having for their dinner. For example:
I will add a small amount of stewing steak and gravy plus small dumpling
or
A small piece of Yorkshire pudding and whatever meat and gravy.
or
Salmon (or any fish) but you must check for bones first. I add a couple of chips!
Most things are ok. and adding gravy or sauces does flavour the soup. It is boring enough having to have a soupy meal every day but the taste doesn't have to be the same, or the colour!
Rice doesn't liquidise.
You can thicken with lots of things - cheese, cream, natural yoghurt, evaporated milk etc.
I sometimes add a bit of cheese scone - brioche bread - ordinary bread - half a tin of macaroni cheese - any pasta. I'm sure you will have lots of ideas of your own.
I then put into a large soup bowl and microwave until hot. (Add the cream/yoghurts etc after cooking!)
Friday, October 29, 2004
Welcome!
Hello
This is a new blog belonging to Brenda Brady. I am a 57 year old housewife with husband John, two grown up children (who've left the nest) and a cocker spaniel called Rosie.
I was diagnosed with mouth cancer earlier this year after two operations on blocked saliva glands. In march I had a sixteen hour operation to remove a tumour. This entailed taking bone from my leg to reconstruct my jawbone, soft tissue taken from my forearm to replace half my tongue, a skin graft taken from my thigh to cover the donor site on my forearm, as well as a temporary tracheotomy and peg (feeding tube) in my tummy.
I've created this blog to draw attention to, and raise the profile of, mouth cancer and to discuss issues, exchange ideas, and tips etc.
Brenda
This is a new blog belonging to Brenda Brady. I am a 57 year old housewife with husband John, two grown up children (who've left the nest) and a cocker spaniel called Rosie.
I was diagnosed with mouth cancer earlier this year after two operations on blocked saliva glands. In march I had a sixteen hour operation to remove a tumour. This entailed taking bone from my leg to reconstruct my jawbone, soft tissue taken from my forearm to replace half my tongue, a skin graft taken from my thigh to cover the donor site on my forearm, as well as a temporary tracheotomy and peg (feeding tube) in my tummy.
I've created this blog to draw attention to, and raise the profile of, mouth cancer and to discuss issues, exchange ideas, and tips etc.
Brenda
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