[GcarerParticipant]

Hi Jim,
My husband is on the trial, he is into his third cycle, I honestly thought his treatment would of been monitored a lot better, he only goes in every month for bloods and drugs, the actual doctor who you are seen by only comes in at the end to have a brief chat, my husband is beginning to feel like a number not a person.
We were told at the beginning he would be going in for tests quite frequently, to be honest I don't find monthly frequent.
Also we ask questions and I don't feel we ever get a satisfactory answer, we always feel we are mithering, and have a limited appointment time.
He was unable to get in last week, they tried every way they could to more or less insist he goes in(we do know how important it is he doesn't miss the start of the next cycle)but he was very poorly and whichever way he was taken in it was far too much for him. He did at that point say he wanted to come off the trial, and that he didn't feel happy with the treatment.
After a chat with him he is now back on it, we will see how things go next week at the clinic.
Gail

[GcarerParticipant]

Hi Helen,
Thankyou for replying, yes he was ill before this, we retired March 2011 to get on with a steel yacht he was building for us to live on, everything was going fine until about Sept, he was needing to sleep a lot and having severe back and side pain, to the point of shouting out in agony, this was awful.
Of course he wouldn't go to the doctors, this went on for a month then I insisted he went, they came up with allsorts of diagnosis, pulled muscle, cracked rib, strain, and so on, he ended up over the christmas period confined to bed in absolute agony, still not wanting any help, so in Jan I called the doctor out and suggested he go to hospital because this wasn't getting any better, then after a week of tests this was the result.
It has now ended all our plans, no way will he be able to carry out his dream, he now realises this, so to know just how he is feeling I cannot begin to imagine.
Thankyou for your advise I will be looking into this.
Love Gail

[GcarerParticipant]

Hi, Eve and Pat, Oh my goodness you feel all alone through all of this, I cannot thankyou both enough for your kind words and how very similar our experiences are.
Howard was also in severe pain for 4 months, it was only my insistance to the doctor that he went to hospital for tests that this came about.
It certainly is hard to watch the man you married change, and as you say we must be grateful for the days we have together.
Howard is about to have chemo for the third month, he is on the trial, when do they decide he will be ready for SCT, and how intense is this.
Thankyou both so much for replying, I now feel I can get help and vent my feelings to people who understand.

Very grateful, Gail xx

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