As many friends and family will know, my Mum was a keen fundraiser for the Mouth Cancer Foundation. One of her favourite fundraising methods involved creating Christmas cards, which she did very successfully for the last few years.
We have a few packs of cards available, left over from previous years. There are 2 types - the smaller 'Christmas Blessings' card is about 4 x 6 inches (A6), and the larger 'Shepherd' card is A5 (about 5.5 x 8 inches). The artwork for each card was specially commissioned by Brenda. Click on the images above for bigger versions.
Both cards contain the message: "Wishing you peace and joy at Christmas"
While stocks last!
'Christmas Blessings' (5 cards) – £2
'Shepherd' (5 cards) – £3
All proceeds will go to the Mouth Cancer Foundation.
If you would like to purchase a pack of cards please email Dan at dan.brady@mac.com with your name, address and let me know which cards, and the number of packs you would like.
You can make a payment online at Brenda's justgiving page - remember to let me know by email which cards you would like!
It falls to me to write this final posting. I’m John, Brenda’s husband. Brenda died at home, in peace and surrounded by her family at 11.30am on Friday 20 June. After four plus years of fighting cancer she finally succumbed.
But I can’t leave it there. There was much that was special about Brenda. She touched so many lives and I had the pleasure of being married to her for over 30 years. I have a great sense of duty to share some of her life with you. I also want to celebrate her life – we rarely read about the beauty of ordinary lives; of countless acts of charity and compassion that mark ‘ordinary’ people out from the crowd. And I want to try and capture the essence of Brenda for our children, Dan and Becky, our grandchild Eva and other grandchildren if and when they come along.
With this said I feel able to write freely and liberally about Brenda’s qualities.
Brenda was borne in 1947 in South Leeds to Cliff and Mary. In her childhood she wanted to be a nurse and, with a somewhat bigger ambitions, a nun. I didn’t know of this until quite recently but they do not surprise me. It is clear her purpose in life was already taking shape – the essence of Brenda was a life of practical and spiritual support for people.
Fast forward to four days after Brenda’s death, and a letter I received from an elderly lady who Brenda had befriended in WhitleyBay. In the letter she wrote, “I shall always remember her for her unfailing kindness. One always felt better for being in her company, and was never left in any doubt that she would always be ready with a helping hand, and a fund of practical advice, especially in a crisis. She was indeed a truly remarkable lady.”
As a teenager, Brenda had a very close relationship with her grandmother, Emily. Mary (her mother) tells of the time Emily suffered from Bells Palsy – a disfiguring condition of the face. Brenda spent hours massaging her face back to life and teaching her to whistle again. Brenda’s first act after our marriage was to place her wedding bouquet on her grandmother’s grave. I already knew that there was nothing superficial or transitory about Brenda’s relationships with people, but this unobserved event was further demonstration. Another example is given in the next paragraph.
Fast forward again, but this time to 2004. I received a telephone call from a softly spoken lady with an Irish accent. She introduced herself as Sister Fidelis – Brenda’s teacher in primary school in 1952-57. She had heard of Brenda’s first operation and wanted to know how we all were. She had found out about her illness from another pupil at the School – Judith who lived in Liverpool. Brenda and Judith had remained friends for 50 years; they didn’t speak to each other that often but the contact and friendship had never been broken.
Still in Leeds and a single woman in the early 1970s, Brenda decided on a South African adventure with a friend Kate. They stayed for a year in Tamboerskloof, a neighbourhood of Cape Town. Whilst there she sought out a convent of nuns and service followed as a babysitter for a family of four children. This was no ordinary assignment. This was for a black family who lived in a shack in a black township and she had to be taken in and removed by car. There was much opposition from the people she worked with; she was told it was too dangerous but she persisted.
Some 20 years later we returned to Cape Town and sought out the nun who Brenda knew, and heard that the family had prospered. One of the children had become an airline pilot; another a civil engineer. “Not bad”, I remember Brenda saying, “from a black township to airline pilot in one generation”.
By the time I met Brenda in 1974 (on reflection the most fortunate day of my life) she had befriended Mrs Duxbury, a lady who lived alone, nearby in Churwell, Leeds. Mrs Duxbury was remarkable, to me at least, because when standing her upper body from the waist up was bent horizontal. This had been caused by years of lifting her infirm husband in and out of bed. Brenda became her shopper, carer and friend.
And then a family and a new home in WhitleyBay.
We moved to WhitleyBay in 1977 with our son Daniel. She wasn’t happy to move and cried for most of the journey from Leeds. Within hours of arriving we received a phone call from a lady called Doreen, who inquired as to whether Brenda had the babysitting book and could she provide the name of a baby sitter. Brenda didn’t know what she was talking about but that didn’t deter the caller from inviting her to a coffee morning; she was picked up by another lady (Carol) on the agreed date.
Thirty years later, and during the first three years of her illness, Brenda was still having coffee mornings with these two ladies, and several others, and Carol and her husband Ray were responsible for the plate collection at Brenda’s funeral.
After being in the same house for ten or so years, I suggested that we might perhaps move to a bigger house. Brenda said we could but it would have to be within 200 yards of where we lived and, if possible, could we get the neighbours to move with us? Clearly, Brenda was saying that a loving and caring community was worth more than the pleasures a new larger house might bring. This may seem to be a trifling matter in the context of Brenda’s life; but, it did demonstrate her heavy indifference to material possessions as a route to personal happiness. Brenda wasn’t a restless spirit – she was at ease with herself and her place in the world. As a professional environmentalist I later referred to this as social capital, as opposed to environmental and financial capital. It was an important lesson for me. The valuable assets acquired by living in a community are easily overlooked.
Whilst in WhitleyBay, Becky was borne and the duties of a mother, daughter, wife and friend were played out to the full. The visiting and shopping for elderly people continued and Brenda became a home-visiting Minister for St Edwards Parish Church.
She was there for a number of people in their final moments of life. I remember her coming home early in the morning after having sat with a lady through the night for her final hours. And the gratitude of this lady’s children knowing that there mother wasn’t alone when she died. I felt so proud of her, and had so much admiration for what she had done. In Brenda’s last 48 hours of life we were able to do this for her.
And there were numerous fund raising activities in our house. It seemed to me that whenever a famine or natural disaster was reported in the press or on television, Brenda would respond by holding an event in our house. I remember a house packed with people, money being extracted from compliant ‘victims’, and me in charge of the cloakroom.
And then the onset of her illness five years ago
Between her operations and bouts of radiotherapy she raised about £15,000 for the Mouth Cancer Foundation by organising various events. This included two 60th birthday parties – mine and hers. I vividly remember Brenda’s response to Leah Bell, a North East comedienne and singer who appeared at Brenda’s birthday bash and sang “Simply the best” to her – that wonderful celebration of all that is good about the human condition. Brenda was embarrassed in having the spotlight shining on her so strongly. Brenda was the most selfless person I have ever met. She spent very little time reflecting on her own situation and virtually no time agonising on how life had treated her.
She also joined Vinod, the Mouth Cancer Foundation’s Chief Executive at several NHS NICE meeting to make the case for the use of the drug Erbitux for mouth and other cancer sufferers.
Since her death I’ve received sympathy cards from many people. They also point to Brenda’s unique qualities. Here’s a sample of what they said:
“We feel privileged to have met Brenda.”
“She has been so brave and touched all our hearts. She will always be remembered and will continue to inspire us.”
“A truly lovely lady who loved and cared for her fellow men and we in turn will be forever glad to have been part of her life on earth.”
“I feel so lucky to have known Brenda. She was the kindest most courageous person I have known.”
“Brenda was truly one of the most caring people I’ve met, even when struck down with that cruel illness she continued to care about the welfare of other people and was always first with ‘how are you’. The world is poorer, many hearts will be heavy but lovely memories will be with those who like me feel privileged to have known such a brave and tenacious person.”
Brenda spent a lot of time on the Mouth Cancer Foundation web site, exchanging thoughts with other survivors on its discussion forum. After her death, many of the forum members have told me how Brenda inspired them. It demonstrated to me how valuable this web site is to people who have had to confront this devastating illness. Here are some examples of what they said:
“She is a wonderful human being, a very gentle and caring lady who loved everyone here on the forum.”
“Brenda has been a great support and source of information for me since I came onto the forum. She gave me hope for the future when I was so worried.”
“I met Brenda for the first time this year. Brenda was nice to talk to and gave me inspiration. I am really gutted by this news.”
“I am not an emotional person but as I type I have tears in my eyes. I have met Brenda several times and each occasion was both a pleasure and an inspiration.”
“I met Brenda for the first time in London earlier this year and was blown away by her courage and inner strength. I am fighting back tears writing this.”
“I feel completely devastated by this news. Brenda was one of the first people to lend me support and she gave me such early inspiration. I wanted to come to the web site today and announce my personal goal of getting just over half way with my chemo/RT but that seems just so insignificant now.”
“I am so saddened by this news, Brenda helped me so much with support and advice. I was so pleased to eventually meet up with her at the voice awards.”
Brenda also wrote poems, particularly for special occasions. It was a talent she most probably inherited from her father. Six weeks before she died who wrote her final poem. It was a reflection on what had happened to her since the onset of the illness. I want to share it with you because although she was in constant pain, her fortitude and sense of humour come shining through.
But first, some words of explanation. Five years ago when her mouth cancer was beginning to present itself, Brenda complained of a small hard object under her tongue in the floor of her mouth. The doctors thought it was a blocked saliva gland. Brenda called it her “pea”. And one of the two secondary tumours in her head was treated with Gamma Knife radiotherapy at the CromwellHospital in London. So here’s the poem:
My pea
It’s 4 plus years since the knife went in
removing the pea and most of my chin.
16 months later the pea reappeared.
A second procedure and use of a saw
removes said pea and the remains of my jaw!
Another pea surfaced to threaten my life
this time it’s my head – answer, Gamma Knife.
Too deep in my head for an operation
within days bags we’re packed and off to the station.
Admitted to the Cromwell for Gamma Knife
in an iron mask I make an unpretty sight.
The following year said pea reappears
somewhere between left eye and left ear.
Dash down to Birmingham to see a top man
a month of radio therapy his advice ran
A face mask was made of very hard plastic
it was tight and hot, and claustrophobic.
Each day a good friend would come in the taxi
They gave their support – I didn’t need to ask it.
That was last year – I’ve been well for the most part.
The pains back again – more scans on the chart.
It’s hard to explain the affects of one pea
it’s brought pure devastation to my body and me.
Bones from each femur construct my new jaw
scars down both legs show the path of the saw.
Half my tongue had to go from the front to the back
replaced with some flesh – they called it a flap.
It was cut from my forearm around my left wrist
with skin from my left thigh to cover what’s missed.
Before my big op, a small one was done
to insert a ‘Peg’ right into my tum.
A ‘Peg’ is a tube to allow one to feed
with all that’s happening, there sure is a need!
Did I mention as well, the neck dissection
and throw in for luck an MRSA infection.
After 4 plus years I look back and see
what that tiny little pea has done to me.
Not a day goes by without some pain
my face is deformed and to speak is a strain.
My mouth feels like it’s stuffed with a loofah
And my diet is soup, soup and more soup ugh.
Don’t get me wrong I’m glad to be here
I thank God for His blessings each day of the year.
If I’m asked “what soup would your favourite be?”
My reply is anything so long as its not pea.
– Brenda Brady
At the funeral service I ended the eulogy with a celebration of her impact on others and how she cherished her friendships and the community she was part of. To me Brenda was a wonderful wife and partner – a friend, mentor and rock to lean against. At work when faced with a difficult decision I would often have an imaginary consultation with Brenda. I might see some opportunity to be evasive or slightly devious to gain personal advantage. Brenda’s voice in my mind would always be telling me to take the honourable and honest course. Quite recently my daughter asked Brenda who her ‘rock’ was. Brenda’s reply was immediate – she would turn to Jesus Christ. As a life long atheist I had never made the connection between my morals and the Christian church, but here it was.
Brenda was a wonderful daughter. Mary her mother had a life of care and devotion from Brenda. She lived across the road from us and Brenda cooked for her, shopped for her, and spent time with her constantly.
Brenda was a wonderful sister to Bill and his wife Gail (who she regarded as a sister). Although Bill and Gail live in Brisbane, she remained close and their relationship was marked with much fun and laughter. Bill tells of their teenage years in Leeds when Brenda would be entertaining a boyfriend in the house whilst Bill would be fending off another one at the door.
Brenda was a wonderful mother to Dan and Becky. Both were there during her final hours and I know she was proud of what they had become as human beings. The pain of loss will subside; the memories and her example will linger for ever.
And what wonderful friends; Brenda was blessed with hundreds of them in WhitleyBay and further afield.
I’ll finish with some words from Brenda. Throughout her illness she kept a diary. She chose the hymns and readings for her requiem mass and invited everyone to a reception (“my treat”). She gave me these details just before her death. When she new the end was near she wrote the following words:
“I’ve had a lifetime of love. I’ve been very lucky. Always loved and cherished as a child by mum and dad as well as grandparents. And I have had 30 plus wonderful years with you John – a very precious love. Two fantastic children; I’m so proud of you both and love you dearly – all topped off with a great daughter in law Cathy who I know will make Dan very happy. My brother Bill and lovely Gail are very special to me as are Matt and Ben. Mum – we have always had a closeness and special love. We will all meet again, I love you all.”
“I have to say a word about my wonderful friends. This illness has allowed friendships to flourish in ways I never could have imagined. It has brought strengths and blessings that I don’t think even they knew they had. We have all grown closer. The gestures of kindness and caring by each and every person have filled every possible void – from cooking a meal to walking Roxy, sitting with me whilst John is out to giving Mum a lift to church. The list is endless. A special few have been particularly wonderful. They know who they are and they have got me through many rough days and have never tired of supporting me in their own special way over many months and lots of ups and downs. Bless them all.”
And finally:
“A happy life is not how many years you have managed to live, but rather how much happiness you have put into the days you have been given.”
Brenda’s was a wonderful life.
Brenda with her granddaughter Eva in the back garden, end of May 2008
Video below of Brenda dancing with family in the living room, Christmas 2004
Below: One of the last photos of Brenda, taken with her family in Whitley Bay, 24 May 2008
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!
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
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.
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.
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.
