Have you had any challenges coping with changes to your body whilst living with blood cancer? For example, weight loss, weight gain, scarring from surgery, hair loss (such as; head, facial), swelling etc.
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Su
Hi Su, I have been so lucky although I still manage my symptoms. Visually I have lost weight and lost hair. I have had skin cancer and I am left with a bird bath like scar on my head, osteoporosis which gives me a curvature of the spine and a loss of 5 inches in height, both conditions allegedly have a higher likelihood with a blood cancer diagnosis. These are the visible changes, not the invisible ones !!
The worst for me was hearing loss which was a reaction to one of my chemo drugs, especially as so much of my life was tied in to music.I have scars from surgeries, but they are reminders of how far I have come. I have gynaecological issues which were made worse during my illness.
Other issues are heart/lung issues because of how my tumour was growing, and weight problems, possibly caused by RT on my thyroid. I lost my hair 3 times during treatment, but this did not bother me too much (and I never wore my wig, because I didn’t feel it was part of me).
I still feel that I got off lightly, as medication has got most problems under control, especially when I read about those affected by GVHD.
@Erica @Pisces56 Thank you both so much for being so open and honest about your experiences, it sounds like you both went through so much.
I am wondering how much support either of you got with coping with such changes? did you find anything helped you?
Su, my consultant was upset when he realised about my hearing loss, and I was seen by ENT within a week, and that same day had hearing test and moulds taken for aids. Staff arranged for me to be taken from the ward to the appt., where I also saw one of the doctors I worked for who had had a bad fall and was waiting to be seen! Since having the hearing aids I am seen regularly by the audiology dept and also had some one-one lip reading sessions
My haematologist also referred me for counselling (which didn’t work for me) and to a cardiologist when heart problems were getting worse.
My GPs have been fantastic referring or medicating where necessary, and are very understanding when I go into panic mode when I have something wrong with me. I am so lucky having had mostly good care (although I have also had some bad experiences too)
Weird one…
My left ankle joint got ‘lazy’ during diagnosis & treatment in that when walking I had to consciously lift foot so I didn’t constantly drag my left foot. Not sure if relevant/related but came on just around diagnosis for a couple of months after treatment. Did try explain to consultant who was a bit bemused… 
All good now. That was all really, got off lightly compared to others.
Having no ‘common symptoms’ I think was in some way useful in raising awareness… In that not all treatments cause hair loss and chemo causing nasty side effects, which is contrary to people’s general perceptions.
Su, I have had a number of challenges as a result of the blood cancer. Firstly I have lost 6inches in height as a result of collapsed vertebrae caused by Myeloma. I also developed osteoporosis so have a curvature. During treatment I did lose my hair and did wear a wig outside though often took it off at home. When it grew back it was curly and darker than it had been as I had started to go grey before I became ill.
The biggest change I suppose has been that as a result of the Myeloma my kidneys failed. As a result I am on dialysis. I chose Peritoneal Dialysis over haemodialysis because I could do it at home and go travelling too. However this means I have a permanent catheter protruding from my stomach which at first I found really challenging. However no one can see it and most of the time I don’t think about it. I am just happy that the dialysis has worked and that I still lead a very busy and active life.
Hi Joan and @SuBloodcancerUK, Joan, I see you have also had collapsed vertebrae, osteoporosis and curvature of the spine. No, Su, I was not offered any support, in fact the medics kept saying I had pulled muscles every time when I had fractured vertebrae for a while, it was the eventual x ray that picked them up and the consultant said that I must have been in a lot of pain, I was. As for the hair loss, I was told it was because the CLL was taking all my ‘inner strength’ coping with it and in this country, with it’s temperate climate, the thing that first gives is hair growth. Whether that is true or not I do not know. As for the ‘bald crater’ on the top of my head, and my thinning hair, well, if I thought about that and/or my spine visually I would never leave the house, but the wonderful thing is that now at my age I just don’t care what people think. I suppose I might have appreciated the offer of counselling to help me come to terms with these, but I wasn’t and I just got on with it. Joan how have you coped with your ‘challenges’ emotionally?
Did your left ankle cause you practical and emotional issues?
It was more just a bit wierd… Could understand other physical issues due to the condition I was in but the ankle was odd. I soon had other more concerning issues to deal with due to a couple of bouts of neutropenic sepsis… But that physical issue took a while to mend.
I think I have been blessed with a very supportive family and husband. I worried initially that I was no longer attractive to my husband but very early on he reassured me he loved me for me not so much how I looked but the person I am. My daughters tend to compliment me if I am wearing something new and look smart and never refer to the curvature or anything else. Indeed they seem proud of the way I have coped. I think the hair loss was the thing I found worst but got used to it. Anyway I think I accustomed to it all now. Like you I was not offered counselling. However someone told me of a cancer centre in South Manchester and I went there for a few weeks and had both the opportunity to talk and have some complementary therapy and that helped a lot. They offered the same to my husband and I think it helped him too.
Hi Joan, I am really impressed that your husband was offered the complimentary therapy as well. The ‘carers’ are so often forgotten and they have gone through the fears, thoughts, emotions and practicalities as well. I have a husband and son who don’t show their thoughts and emotions and appear to carry on as normal. However I have some very supportive friends that I can offload my thoughts and emotions with. Years ago I worked with an incident situation and people that had affected were offered complimentary massages etc. and so were all the helpers and it really boosted everyone. I was also taught that in that sort of situation you should have luxury boxes of tissues, biscuits etc. to help people to feel valued. I have never forgotten that. Take care and keep posting.
@Erica it was so moving to read through your post. You make such a good point about, how when you find yourself in a place where you no longer care about what other people think- it can be so powerful! What do you feel helped you get to this point?
@Joan it’s so lovely to hear from you, I hope you are well? As you say, Joan, it does sounds like there have been multiple challenges for you. It sounds like coping with both the changes people can see and the changes which are a bit more hidden were equally tough on you- which is so understandable. How did you find it all? And the people around you at the time, did you find you had support there?
hi @dmquinlan hope all is well with you? it sounds like you had so much going on, with the neutropenic sepsis episodes and the ankle issue. You mentioned the physical issue taking a while to end, what was that like for you?
Just took it 1 day at a time. It was a couple of months before I was back running & attending Yoga classes.
What a wonderful combination, running and yoga.
It was a few months later before I got back on the bike… Then this…
Hoping for a ballot place this year too.
Yes, great memories of a fantastic achievement. Let us know about your Prudential Ride London place, please, fingers crossed for you…
@dmquinlan it is so good to hear that your perseverance paid off, and I agree with Erica, what a brilliant achievement!! it sounds like for you, trying not to think too far ahead helped you? well done again 
