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Support through the hard times

Hi All,

My fiance was dx in April 2007. I've been reading this site since then (and it's been a great help)but this is my first post. I'm writing because he is struggling to cope with the diagnosis, he's been very down for several months and even a good response to glivec has not lifted his spirits. I'm doing my best to support him with everything that he is going through but I often feel that there must be more that I can do. We will be getting the results of his 9 month biopsy back next week and if they are good that may help him feel more positive. I think that he sometimes feels that everyone else with CML just gets on with it and that makes him feel worse so it's a viscious cycle.

If anyone else has experienced a similar thing with their partner I'd really appreciate a chat. Or if anyone has any thoughts on ways in which I can help support him better that would be magic (actually a magic wand right now would be much appreciated!).

Bhiru

Hi.i was diaganosed in oct 03 i was 26 and i found it very difficult to cope with for around 2 years,then the doc prescribed me antidepressants ,and i could not thank him enough,i know not everyone agrees with anti d's but it my situation they helped me,if you or your partner wants to email me 4 a chat then hes more than welcome,kathy.prudence@homecall.co.uk
take care

Hi Bhiru, Feeling down and fed up is quite usual when given a diagnosis of CML. For me, diagnosed in Sept 2001, life was very difficult for many months afterwards. I found it really helpful to talk to a counsellor, this gave me a chance to think about what this CML thing meant for me. There should be a counsellor at the hospital, or maybe attached to your GP. Just getting on might seem to be what most of us do, but there are good bad and indifferent times and some of them are horrid.

Does the hospital where he is being treated have a patient support group? This has been a real help to many of us at Kings College Hospital, there is a support group at Hammersmith, and I think there are others around the country. Here you would both meet people in similar circumstances and be able to talk to others in similar situations.
For the carer its difficult to know what to say to the CMLer, and I know my partner often wishes he had a magic wand !

Good luck with finding some extra support for him
Pennie.

Hi Bhiru,

It is nice to 'meet' you.......

I often think that it is at least as hard to support somebody with CML as it is to be the patient. I am certain that you are not alone. I don't think there is any magic answer or solution and I know that I have given my husband a hard time sometimes when he doesn't say or do what I want or think I want him to do or say (does that make sense?).

You don't mention whether your partner reads the posts, I know that at the beginning I didn't want to read anything at all but as time went on I did find it helpful. I think that if your partner hasn't read the posts then it might help him to read and see that yes, we do all have some problems yet there is still life, fun and hope out there.

If he is reading the posts and is still down, well hang in there, the side effects are so many and so varied and they come and go and it truely can be difficult to cope with them.

Personally I found it good to meet up with somebody with CML, face to face one begins to realise that there is life apart from hospital appointments and pills. Maybe if you want to mention your general location somebody may live close enough to meet you both for coffee.

Some people do prefer not to really get involved with support groups or similar and I guess you have to respect their decision, sometimes people can bury their heads in the sand and it can be hard to help them. Just hang in there and keep posting, if it helps you it may well help your partner.

Take care and look after yourselves

Susan

Susan

Hi Bhiru,

Other than medication, the best lifter upper for a CML patient that I know is to meet other CML patients. In a roomful of CML patients and their partners you have to ask who is the one with CML. The bonding with other CML patients is instant.

Another lifter upper is being assigned a number in the Zero Club.

Zavie

Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.2 log reduction Jun/07
3.6 log reduction Sep/07
3.5 log reduction Feb/08
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
Yahoo ID: zaviem
YM: zaviemiller
Skype: Zavie Miller

Support through the hard times
Hi All,

My fiance was dx in April 2007. I've been reading this site since then (and it's been a great help)but this is my first post. I'm writing because he is struggling to cope with the diagnosis, he's been very down for several months and even a good response to glivec has not lifted his spirits. I'm doing my best to support him with everything that he is going through but I often feel that there must be more that I can do. We will be getting the results of his 9 month biopsy back next week and if they are good that may help him feel more positive. I think that he sometimes feels that everyone else with CML just gets on with it and that makes him feel worse so it's a viscious cycle.

If anyone else has experienced a similar thing with their partner I'd really appreciate a chat. Or if anyone has any thoughts on ways in which I can help support him better that would be magic (actually a magic wand right now would be much appreciated!).

Bhiru

Hi Bhiru
Just a few points that might help in your situation.I have been dx for just over a year now and as a patient the initial shock is difficult to deal with not only for oneself but for family and close friends.
However in the work environment I eventually discovered that my employer had a very great resource in terms of having a wellbeing adviser/occupational nurse on hand ;she was not in the Personnel division but in Health and Safety.
Presuming that your fiancee is in work there may be support that the employer can provide.
I had regular meetings with the occupational nurse and I dealt with her re my work and not my line manager nor anyone in Personnel/HR.
A lot of large organisations have gone down this route of having to develop support for employees who have life threatening illnesses and it seems that legislation such as the Employment Discrimination Act of May 2006 has prompted this;remember that anyone who has cancer is deemed to be disabled at the point of diagnosis.
Many employers and often fellow employees I regret often write off the seriously ill or otherwise do not know how to respond and it leads to additional stress for the patient.
Some employers offer some free counselling sessions outside the organisation and I took the opportunity to have some help from a psychotherapist which were very useful.
At the time of dx and after one of the big stresses is what about the job the career and if I become really sick how will we survive and so on.There is a major issue still with the reaction of employers and work colleagues to those who are dx with cml and other serious diseases-more in another thread perhaps.
So if you have work based support facilities for your partner then it might help both of you and take the pressure off yourself.

With best wishes
John W