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!
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, ...you couldn't have had better care if you had been paying for it"!! Amen to that.