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How do you cope with cml?

I was diagnosed with cml 6 months ago and wonder how others cope with the illness? especially ladies? I sometimes feel in total denial and get angry when I don't feel so good. Does anybody have suggetions for coping with the stress?

Flora - If only there was a simple answer to this question. I was diagnosed in 2000 and was lucky enough to be one of the first patients on Glivec in this country.
I am now in remission and still doing well seven years on. When first diagnosed there was so much going on that I don't think it really impacted on me, months after achieving remissions though I found it all too much to cope with. Something that others could not understand - I was in remission but should have been happy. Don't get me wrong I was delighted and knew how lucky I was, but once I'd got to that stage I questioned everything in my life and felt that I ought to be doing something more now that I still had a life to live.
The CML trip is very much like a roller coaster, there are ups and downs all the time. But what I have learnt is that it is the little things and the normal things about life that are very important and valuable. I have also learnt that 'me' time is very important - massage and pampering definitely helps - you might even find it available on the NHS.
My local hospital also had a very good oncology drop in centre, who provided support, advice, counselling when needed and a fantastic cup of tea.
You have every right to feel angry, sad, happy and indeed any emotion that you want and you have every right not to cope occassionally.
Accept that there will be bad days and see them just as that - look at the overall picture and I am sure that you will find you are coping very well at a really difficult time in your life.
I am more than happy to talk further if you wish at: lorraine_c_rollo@hotmail.com.
Best wishes
Lorraine Rollo

I was dx in Oct 2005 and felt like my world had collapsed - I put my application for teacher training on hold and focused on myself and my family. As time went on I realised that thanks to Glivec I could continue to live life as a fit and healthy person. I took on extra responsibilites in my role as a teaching assistant uping my hours to full time and working with children for whom English is an additional language.

I re-applied to uni and was accepted onto a PGCE course for primary teaching. I started last September and I am about to complete my first teaching placement and loving every minute of it.

I cope by ignoring my 'condition' but never my Glivec - I have what I call CML days - usually related to having to go to Kings for PCR or my local hospital for routine bloods in between. On these days I feel sorry for myself and wonder what is in store in the future. Then I look at what I have andsoon forget about it and carry on. My family need me as I was and thanks to Glivec they can have that, although I think they appreciate me more now, which can only be a good thing.

Try and look on the good side of the life you still have, get out and have fun. Hey it's almost Christmas again and I am just so grateful to be able to see it. I lost a friend to cancer (not CML) last Thursday week so I'm not in denial but I do intend to live life.

Chin up and all that - I do understand you are low at teh moment but believe me it gets easier and you can live the life you want.

ATB -

Marian

Marian

Thank you for your comments - I can see my own journey mirrored in what you ladies have experienced. I think I just had a little depression over the weekend - crept in with the dark nights.
I have prided myself from day one that I have carried on as normal and achieved every goal over the summer months that I had planned before the devasting news of CML. One or two "missed outs" but that was by choice not illness. I was there when my son's pipe band won European Champs in Inverness and that same night watched my daughter in the highland dance team at the Inverness tattoo. I was there when eldest son (again) played in the massed pipe bands at the Edinburgh tattoo although that day was one of my "CML days" and I lay in bed and thought do I go or do I not - I decided to go!! For younger son I was there when he took his oath to become a special constable. The one blight on the summer was that my newly retired husband and I intended to spend 6 weeks on the Isle of Skye from the end of June - we never did make that but we managed to get there for 3 weeks in September. Even the prof said "what are you like?" as I was never home for long. In fact on occassion I only came back for the hospital. It has been a busy summer and with slowing down came a little doubt but I have some new goals for next year - my friends in Canada are coming to Scotland to stay with me for the first time. Lots of decorating etc for that.
So like youselves I have not given up either but some days I still get tired and don't feel so good. I am on glivec and the spirit trial. Sometimes it feels so surreal to feel so well and yet be dependant on those little brown tablets for your life.
It has been a roller coaster year as my daughter was also seriouly ill at the start of the year with a viral reaction to tonsilitis which spread through her body and saw her admitted to hospital twice. She is training to be a nurse at Raigmore hospital in Inverness.

Flora

Hi Flora
Understand where you are coming from, I think we all have these thoughts at times, certainly at the time of dx. I was dx in 1996, and still here, being a nuisance hopefully, especially to the grandchildren, who now want to dis-own me. The only advice I can offer is my own home grown philospohy, in that I have never acknowledged that I have a 'cancer or cml journey', my attitude seems to have always been, that if it wants to live with me then it had better keep up. Yes, some days are bad, so you crawl away into a corner and home that the world leaves you alone, my dear lady wife now recognises these days and puts her steel helmet on !!. Yes you may have dark days, I had an autograft transplant in 1998, that was a dark time in pre Glivec days, but now we have these drugs life can be great. When friends tell me that it is a bad day as it is raining or cold, I always correct them but pointing out that it really is a great day, as thanks to medical science and very good care I for one am still here to annoy the world. When you are feeling down, try to laugh, it does work.
If you want to contact then get me on henleycowboy@hotmail.co.uk, be pleased to talk
Have fun and keep smiling
Keith

I have been truly fortunate that my CML was caught quite early on - before I even knew I had it. A routine blood test threw it into the arena - dr wasn't looking for it. Some people have had it really tough and I admire you all for coming through it so positively. I am sure I will do likewise.
Keith - you mentioned grandchildren - that was the one thought the really shook me when dx - I am not even a granny yet (and heaven forbid at the moment LOL)
This forum has really helped me see that I am not alone and indeed how fortunate I truly am. I meet life head on - this summer I went on a motor bike for the first time - what fun that was. If anything I am more inclined to do things - because I can!!!

Flora

Hospital days are one of my downers too but I cope with it by going out for lunch after. I nice wee treat to get the spirits up again. Only my appointments are stretching further and further apart - so lunch dates also get further apart. :-( I am now up to 6 weeks between appointments.

I have 10 coming for chritmas dinner so I shall throw myself into that - I am looking forward to it!!

Flora

Hi Flora
You mention grandchildren and this was the first thing that came to my mind when I was diagnosed back in early 1999 in pre Glivec days - the thought that I may never get to see mine. Here I am nearly nine years on and I have two wonderful grandchildren and no more CML. You can see my story in the Diary Section of the site. If anything CML is a reminder to get out there and do what we want in life.
I wish you the very best and hope that life will settle for you, I can see that you have plenty going on so enjoy. The odd day of feeling depressed will occasionally be there but you will find ways of snapping out of it.
With very best wishes
Elizabeth

Hi Elizabeth
I have taken a while to reply as I have been reading your diary. It is certainly inspiring and it is wonderful to hear that you are doing so well now and enjoying those precious grandchildren. What a beautiful bride and you looked fantastic in the photos with her.
I am sure you will agree that life often gives you more than one duff card at a time and it is sometimes life that is hard to cope and not just the CML. I currently have a brother who has been in hospital for 2 months - it is a 200 mile trip to go and see him. I have been three times to visit and I hope to go back next week. He might just be home by then but I shall go anyway to see him before christmas. I hope he will agree to come to stay with me for a couple of weeks in the new year.

Flora

Hello Everyone,

I was diagnosed with CML in February this year and have been taking Glivec since then. I am new to this helpful website and have just received news that the Glivec is not going as good as it should and so I am waiting to see what happens next. It is comforting to know that we are all able to share each others thoughts and experiences.

Best wishes to you all.

Mike.