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Hii am new to this site my
Submitted by karashan on Sat, 2009-10-03 07:50.

Hii am new to this site my husband is a CML sufferer to as a carer i find it very difficult to understand my husband was diagnosed almost a year ago and he has never been right since hes tired all the time sweats perfusly itches has had a lot of pain sice hes been on them since then hes now been diagnosed with excessive diverticulitus his doctor is not sure if pain from yellow bullets ot diverticulitus so he has to have his bowel removed were waiting for him to go in but looking at other peoples comment they have stomache pain too we have young children at home and they dont see there dad as hes always tired then in the night hes up and down which keeps me awake and i feel so tired ive had to go on the sick from work myself to look after him we tried to get dla and keep getting knocked back wonder why that is as other people are able to get it even when they pretend they got bad back why dont they give it to genuine people who realy need it thanx for listening to me rant on xx

Hi Karashan and welcome to the CML family.

My goodness you do have a lot on your plate! I do feel for you as I have come to realise that the families of CML sufferers often have as tough a time of it as the sufferers themselves.

It would seem to me that you need to get your husband's doctor to spend some time explaining to both of you exactly what is going on with both of your husband's ailments. I am no expert as I was only diagnosed a couple of months ago but, from what I have read on this site, the side effects from Glivec are relatively minor. It seems likely that most, if not all of your husband's symptoms are from the diverticulitis. If that is the case, hopefully the planned treatment will sort them out. If it is the Glivec causing them, his doctor needs to be aware as it may mean that Glivec is not the best treatment for him.

It is hardly surprising that you are tired with so much to do and worry about! I can only advise that you do not hesitate to ask for help from family, friends, neighbours etc. When someone is ill people often want to help but just don't know how. They will be more than happy to assist in practical ways if you give them a chance, whether it is shopping, ironing, taking the children for a few hours while you get a rest or whatever. And look out at your local hospital or online for other support groups such as Macmillan who can help with advice and information (and perhaps a cup of coffee and a supportive ear!).

I do hope things improve for you and your husband soon.

Our thoughts are with you.
Cathy

I posted on the end of the previous thread, but now see it has been made into a new thread. Regarding DLA - it would be worth asking to speak to the hospital social worker. We did that and she helped us to fill in the form, which resulted in us being granted DLA. The social worker will hopefully know what it is that the DLA people are looking for! You sound as though you have every reason to get it, to me.....
kestrel