It has been a long time since my last post, partly because I did not feel I could share, and partly because things have been so hectic.
The first chemotherapy sessions of IV ifosfomide whilst halting the growth of some of the tumours did nothing to prevent new ones growing. So hubby was given a rest before they decided to try a new trial drug, which was in tablet form called axitinib, which they thought would be more suited to his lifestyle, as he was still working on through the original chemo.
After only ten days, he became very unwell and it was decided to take him off that and start him on trabectedin, which they did a couple of weeks later and he had only one cycle of this.
Two weeks ago he suddenly had the symptoms of a heart attack and was rushed to hospital where tests were shown that it was not the heart and he was referred back to the cancer hospital. They gave him two units of blood and decided that the trabectedin was probably be the cause for the muscle spasm.
So now he is going to start yet another chemotherapy called cyclophosphomide, also in tablet form. We have been warned there is only 20% chance of this working. We also know the larger tumour is growing rapidly. In the meantime my husband has been very unwell. He is exhausted, has no appetite at all and is losing a lot of weight, he does not even want to drink anything, his taste buds are all over the place and he sleeps most of the day. He is determined to be fit to return to work next week, but if this goes on I think that is a vain hope.
I see things getting bleaker. I realise we have been fortunate so far in that up until the axitinib, he was still working, looked good and lived a relatively normal life, now we are living a life dictated by cancer, whereas before it felt as though we were in charge.
The reality of the disease is hitting home, and whilst I still retain some optimism about the outcome, i can feel the clouds gathering.
We are well supported by both family and the hospital but right now I feel dreadfully alone, and have not been really to talk to people, or go into the Macmillan Chat Room, I can feel a withdrawal as we gather strength for what is to come. And for one of the few times during these past months, I am scared.
