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....
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!!.........
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: firstname.lastname@example.org