8th January - Got the taxol
It's been a long, painful and tearful day and as didn't get high dose steroids until 6pm, feel all high and anxious now but very sleepy so won't be a long post.
Started the day off by seeing the benefits man but still didn't know if my last day of pay would be 9th or 16th January. He's advised what benefits etc to apply for and so now need to start the process off as found out half way through day that last day is 16th january. Never claimed for this sort of benefit before and got to sort out payments for mortgage. Quite scary not to have a job and never will again.
Just about got back when the hospital volunteer driver came to take me to the hospital. He was a really sweet man and we sang along together to songs on Radio 2 on the way to the hospital!!!
No bed again and back really painful and couldn't get comfortable so had to hit the oromorph early and just burst into tears. There were no spare seats and was actually more comfortable in the wheelchair as has higher back to it.
One of the consultants saw me almost immediately as I was so upset which was kind but didn't speed things up as never started chemo till about 6pm!! There were 65 women in clinic today and usually see about 45 and only 3 nurses to give the chemo and 4 doctors.
This consultant was the one I saw in Sept 06 and said I would only live 3 months or might get to 2 years so have passed both these milestones if that's the right word. He said that I had only a small degree of bone marrow involvement and was a comment a haematologist had made by looking at my blood so not to worry.
I told him about my swallowing and he just felt that wasn't a good sign if it could get that bad in 4 weeks. He also felt my lump on the right side had grown but was happy for me to have the next 4 taxols and more if it works but he has low expectations of it working at all and said I am very frail. I don't consider myself to be frail but later when I commented on how heavy my bag was, the patient holding it for me said it wasn't so must be very weak!!
He was surprised about my suggestion of vineralbine but said they would all be supportive if that was what I wanted to try after taxol but really I should be considering if I want to end my life with all these medical interventions. I think I do as the awfullness of not being able to swallow and the distress it causes me and the family is not a future I want to contemplate. He suggested that I could have a 'peg' feed where a peg is inserted through the skin and you are fed through the tube it attaches it too. That would be a better option as it would help me not to lose weight so dramatically and stop me being continually sick.
We talked about whether I had truly accepted that I was dying - he seems obsesses about this as we talked about it last time as well. I feel I have as much as it is possible to and said I can see a time when I want to stop treatment and just let nature take its course but at present want to continue with treatment as my swallowing improves and so does the quality of my life. He does not want to do scans and I also don't see the point as they are not going to change the treatment plan and they can monitor if the chemo is working as they can measure the lump and I know about the swallowing.
My echo came back as that my left ventricle which is the main pumping chamber is sluggish but with a heart rate of 100, I'm not sure how you can have a sluggish but rapid heart rate!! The heart function has actually improved and is now 60% so the water tablets must be doing their job and removing the water away from my heart allowing it to pump better.
We also discussed the steroids and I'm going to try at 1mg for the week as my skin is bruising terribly and breaks down easily and see what effects it has on my breathing. The steroids are supposed to stop the inflammation caused by the cancer in my lungs but longterm side effects of steroids are not nice so would rather be off them.
I said I wasn't interested in a ct but felt either I've got further lymph spread in my tummy which is why I have so many bowel problems or I asked if the nerves from my vertebrae in my chest area could be squashed and that is causing me problems and he said he didn't know.
He showed me my chest xray from 18th December and you can clearly see that that T5 has collapsed now and is under half the size of the surrounding vertebrae so that is why I hear that clicking and get the pain and muscle spasm. Just waiting for the rest to go now. I know it has worsened in the last 2 months as my stoop has got worse and when I was looking for something from the top shelf in a shop the other day I had to get someone to get it for me as I can not get my head back that far.
By the time we'd discussed this and he'd examined me and I had stopped crying, my friend, Debbie had arrived so we discussed the morning's events and she went and bought me lunch and a large paper cup of tea. We sat for a while and then we had a look around around the shops at the hospital and I bought some liquorice and some seed collection to eat. Will have to make sure my seeds are kept away from the bird seed!!!
Debbie had to go about 345pm and I moved down the waiting room to be closer to the other women waiting for their chemo. I got very tearful at that point as I was in so much pain from my back but also from my bum and could almost feel the pressure sores returning.
Eventually, I got into the treatment area at 430pm so I could lie on my side and then they didn't start the chemo till nearly 6pm so had a big dose of steroid then hence why I'm awake but sleepy now.
I left at 8pm and got a hospital taxi home and then did the usual bedtime routine with AJ and we had a giggle with reading Roald Dahl so it seemed 'normal' again.
Couldn't face dinner so had porridge again - don't know what I would do without porridge - it seems to be my staple diet.
Pete found my Nanny's Lloyd Loom chair and as it is a dark duck egg blue it goes beautifully in my room so really pleased I persuaded Pete to keep it all those years ago. Now visitors to my sanctuary have a better seat to sit on.
Loads of phone calls to make tomorrow and having lunch with friend and seeing a plumber for a quote.