What helps you cope?

Thanks so much for writing your long post above, My story is very different to yours but there are also so many similarities in our thoughts and feelings. I am sure your post will help so many people. I would be interested to hear more about your relationships and how they have been affected by your diagnosis and during and after treatment?

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My diagnosis came all of a sudden. I had a pain in my right calf muscle for about a week and it had started to swell up. So I went to see my GP, he thought I had a DVT so sent me to the local hospital for a blood test. when the results were finally available I was told to go straight to the main hospital in our area and report to a particular doctor. Then he confirmed the diagnosis of ALL. So within the space of about 3 hours I had gone from thinking I had a muscle strain to being given a life changing diagnosis.
Fortunately for me I was transferred to the Royal Marsden Hospital at Sutton whose facilities and expertise were fantastic. I was in there for the next 6 months with only a couple of weekends home between chemos and the lead up to my transplant.
I thought that once I returned home after treatment my life would eventually return to ‘normal’, it never did. The new normal was very different to the old normal. Having to deal with the effects of chronic GvHD can be demoralising, the thoughts of, “Which part of me is going to have a problem next?”, are often in my mind.
When I’m fed up that my body is letting me down, I remember that I wouldn’t be here to spend time with my family and friends and especially see my daughter grow up.

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Hi Nick, it sounds as if you never got a chance to deal with the shock of your diagnosis before your treatment started. It must have also have been difficult and demoralising going home after 6 mths in hospital and expecting to return to normal and realising that was not how it was going to be. It is scary always being on high alert for problems. You are so right, your daughter, family and friends are everything. How do you think they coped with you being diagnosed and then being in hospital for 6 mths?

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Hi @Erica. After being initially diagnosed on the Tuesday afternoon I started chemo on the Friday.
Fortunately in some ways my daughter was too young to understand the full extent of what was going on whilst my wife prepared for the worst and hoped for the best. She had lots of support from friends and family, both practical and emotional.
Leaving hospital after 6 months was hard, I had become institutionalised and was scared to leave that safety net. With everyone’s help and support things improved. It was only when I came off of the immune suppression that it was going to be a rough ride. At first I thought it was a temporary blip, but now I’m resigned to the fact that GvHD is with me for the long term.
I’m still here and still better off than many other people.

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I agree Louise, perhaps if we were told more about the effects of treatment and the very long recovery time we would have lower expectations and therefore cope better.

Yes these meltdowns happen to me too, I am so glad, in this forum that everyone feels able to be so open because its really helping me

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@Nickmarks57 You are also on a journey that nobody would want. When I read about targets for cancer diagnosis being three weeks it makes me laugh. Many blood cancer patients are not diagnosed for months. Quite often the diagnosis is reached by accident, as in your case. It is as well that you went to see your GP and that he sent you for blood tests when he did.
I can relate to the “Which part of me is going to have a problem next?” and also the problem of getting out and about by myself again (which took me two years)
@AnnaMam it is great being able to help each other. I felt so alone when I was being treated eleven years ago, and that I was being a wimp because I was not A1 after my treatment ended. I now know a cancer diagnosis changes our lives forever and we can never go back to the person we were, but just embrace our new normal

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@Pisces56 I can really relate to the problems getting out and about by yourself. I had problems too. Before being ill I was very confident but after I lost all that confidence. Worrying if I had the strength an energy to make it to where I was going an back again. As my strength improved so did my confidence, but even now my new normal is below what my old normal was.
It is great that we can share experiences as it really helps to know that you’re not alone.

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Nick, the last line of your post says it all, that is what a community forum is all about and we are lucky enough to have it. It is wonderful to be able to share all our thoughts and feelings, warts and all. It is really scary loosing confidence and worrying if you are going to make it back or not. How does your lack of confidence manifest itself now?

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Haha you sound so like me Erica, I liked that little bit at the end when you said your hubby can use you as an excuse to get out of things that’s what I tend to do as well if there’s something I really don’t want to do and I’ve had my brother and his wife fall out with me on a couple of occasions when I’ve genuinely not been able to do something but I’ve come to the point now that I’m not going to do something just to please other people. I’m like you in the fact that I don’t go out much now in the evenings , I used to love getting dressed up and going out with friends at the weekend but I’m hardly ever out now and I gave up drinking as it wasn’t agreeing with me , at first my friends weren’t happy with me and said I was getting boring but they’ve got used to how I am now and have acceltthat this is how I am now but like you I do like going out for lunch with the girls and we like to have a rummage about in the charity shops and we always like a wee laugh together and cheer each other up if we are down , there are days when I don’t feel like going out but once I do I enjoy it but I can go for long spells when I don’t leave the house also as I just like my own company. It’s really good talking to people on here as we all seem to think the same and truly understand where we are all coming from , it’s hard for family and friends to understand sometimes and I know mine get a bit exsaspirated with me sometimes lol

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This is exactly what I think to @MissP143 I certainly did not deal with the emotional side, if anything I turned off my emotions, I was the only way I could cope with being separated from my 8 year old daughter and the brutal treatment. Thanks for sharing your thoughts because its good to know I am not the only one. I think this is why some of the people around me were confused by my reaction and behaviour after treatment. I too felt empty, never felt the elation or relief… just the same as you

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Your post rings so true for what I’ve rxperuebced and continue to experience. When first diagnosed I didn’t look ill so people including me found it difficult to register. When the chemo knocked me flat but I was still working from home and constantly cleaning the house because I had zero immune system, but barely able to carry the hoover up the stairs, my other half and I fell out as I threw a tantrum one day that I couldn’t cope unless he helped me. He has been amazing but in practical terms so far as helping me it took him a few weeks to realise what was going on inside me wasn’t necessarily reflected on the outside. Since remission I don’t have the same energy levels and I’m more partial to an early night in than a night out but so far those true friends who saw me through my illness understand that. Not all friends are still with me but those who are have been pretty amazing.

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Hi, I certainly agree with you about my outside not showing what is going on in my inside. Because I usually look well and appear cheerful. I know I am also my own worst enemy because I hate asking for help, I was brought up that asking for help was a weakness. I have always been the organised, capable one and thought that would make me be wanted and loved. The funny thing was that a few years back I broke my arm and I had a fluorescent blue caste and everyone was falling over themselves with offers of practical help. My husband does do a couple of heavy practical jobs for me (the trick is letting him think he does them better than I did). However my husband cannot be there for me emotionally and I am more emotional since diagnosis, so I have a couple of friends who are there for me emotionally. I also do not deal with what personally stresses me well now and my fatigue sets in either immediately or up to 48hrs after I overdo it emotionally or physically. I also do not do evenings but I do do lunches and matinees and my husband and real friends accept this. I know I do not have the same energy levels now and I am a hot chocolate and early nights girl. Good friends are priceless. I find this community forum is very supportive and really understand me.

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It is strange that even though I finished treatment 9 years ago, and have recently been discharged from the Haematology unit I have not had a great burst of euphoria at any time, perhaps because some side effects will be with me always. We are in the land of the unknown and I have to be vigilant as they do not what other problems are on the horizon. We are still living with cancer even after treatment is supposedly finished.

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Hello @MissP143,

Thank you so much for sharing your experience with the forum. I’m so sorry to hear and I can only imagine how difficult and frustrated you may have been feeling after chemo. However, I am delighted to hear that you have achieved remission, but also taking in account fatigue on your body.

You mentioned a bit about some of your true friends being there for you through your illness. Were your friends your main way coping with your diagnosis?

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A common thread running through a number of these messages is how many feel the benefit of an afternoon nap. I couldn’t agree more, the problem is that it takes time for people around you to accept that you’re not being lazy or giving in, it’s just part of the healing process… I have got it to the point now where I’m sometimes asked “have you had your nap yet?” And so when I do I feel absolutely no sense of guilt!

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Yes, an afternoon nap is certainly very therapeutic for me and especially with no sense of guilt. I think you make a good point that after a while my naps have actually become the norm in our flat and my husband actually expects it now. I was brought up to put the needs of others before my own now I am actually learning to put my needs on a par with others around me after all these years. How are you doing and feeling?

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I’m afraid that when my eyes need a rest my efforts to stay awake are futile. I can be watching a TV programme or film that I have really been looking forward to and I can remember a beginning and the end, but sometimes there is a chunk that I have to rewind back to watch again. When reading dropping my book jerks me awake and I pick book up and continue reading, and drop my book again…Even a walk around the garden and splashing cold water on my face only delays the inevitable for an hour or so.

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