Thursday, August 25, 2005


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.


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, 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.