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 firstname.lastname@example.org
I promise not to leave it so long to keep you updated in future!
Until next time.................xx