I am coming to the end of my fourth cycle of CTD treatment. Each cycle lasts for three weeks, starting on a friday and finishing three weeks later on a Thursday when I see my consultant. The treatment is all self medicating and consists of me taking chemotherapy tablets every Friday. followed by a very well regimented and managed regime of dexemethasone (steroid) and Thalidomide.
The Thalidomide I take on an evening and have to say at first I was very apprehensive about this drug. (being of a certain age I still remember vividly the pics of thalidomide babies). However, along with various other drugs to stop indegestion, nausia, dizzines, etc everyday starts with breakfast and meds. and ends with cup of Tea and meds. All part of a routine that i am sure we all wish we didn't have to go through.
I suffer from chemo head usually by the end of Sunday, so my weekends seem to be a little wasted. A time when my daughter, son in law and grandson come up to see us for lunch, but spend their time clucking around me asking if i'm ok and can they do anything for me.
Here is the problem, I am sure its not just mine but its hard to get others in my family to accept this point of view without hurting them.
I feel that while I can do things i must be allowed to do them. My body will tell me when I can't and that is when I need to ask for help. Sometimes I feel there is too much cotton wool around me. I know people mean well but it can be overpowering. I need people to be there when i ask for help and not always jumping to their feet when I move. (I can make a cup of tea myself if you know what i mean).
My own Brother and Father seem to have forgotten that I exist. I was diagnosed in April 2008 and told them both within 24 hours the situation as I knew it then. Things of course have changed since with the treatment. but dear old dad and brother haven't even rang me to find out how I am in all the time since. That hurts, my wife reckons I shouldn't worry too much about it but i can't help it.
Anyway not sure how I am going to use this blog but just jotting down some thoughts seems to help. The situation at present is that, my protein levels have dropped from 47gm when I started treatment to 12gm now. At my last appointment with consultant we discussed the possibility of at least two more cycles of treatment then a rest. before we start stem cell treatment.
Here's to the future....
FormerMember
Don't really know what to say but I can see how you could be smothered with kindness; I don't know why people don't listen when you tell them you're ok! They really do want to help though so maybe you could think of sthg for them to do - helping you decorate a room or sthg? Help plan a holiday or day out - at least that would give you all sthg else to talk about. Explain how the chemo gives you good days and not so good too. You probably have already, but it is hard to ask them to back off without offending anyone!
Tell them about my husband who is currently making steak diane and cheesecake (like gordon ramsay last night on the telly), two weeks after coming out of hospital from his stem cell transplant. He's not back to 100% yet, but there is no way he'll sit in a chair by the fire for the rest of his life! He just does what he feels, and if he feels exhausted in the evening sometimes, he just puts it down to experience - next time do an easier 5 mile walk! (Remember he was lucky and diagnosed with myeloma before there was obvious bone damage though.)
Sorry about your brother and dad; I am sure they are thinking about you so you could either ring them (and give them a shock that you are still alive and definitely kicking!) - or just wait until Christmas, but that might be too long. One of my oldest friends has hardly been in touch since hubby was diagnosed, and I think they just can't cope, which is their problem not yours; anyway I do keep in touch occasionally with them, but it isn't quite like it was.
Sounds like the chemo is doing the trick - that's good news,
