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.