Happy Friday!
What are your positives of having blood cancer?
Please share, whether its having a closer bond with your family or friends, becoming more healthy, meeting new people, taking up a new hobby or even having a new perspective on life.
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Hi Bav, thanks for sharing this. A sad situation, but a really inspiring way of looking at things. I often think Hugo’s cancer has changed me, but it’s hard to articulate in what way. I definitely think it has brought us closer as a family and I’ve realised what a great team we are. It’s certainly given me a new perspective on life. I’ve seen how very kind people can be and how rewarding it is to give back - which we try and do a lot more of now.
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How lovely to say that it has brought you closer as a family and that you are a great team. It seems so true and you and my mate Hugo have done so much to raise awareness of blood cancer in children, yes, it does feel rewarding to give back.
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A cancer diagnosis does change your life, and although at the beginning there may be dismay, anger, even an element of denial, eventually there has to be acceptance and finding a way of working with the illness. I speak as someone who has had blood cancer, and for a parent and carer it will affect in other ways. I was fortunate that when I was eventually diagnosed I had a team that I could place my faith in, and even though I had lots of complications during treatment, I still felt that they were all doing their best for me.
After treatment I no longer had children living at home, and I could no longer work. I was no longer able to enjoy many of the leisure activities that I had previously, and had lost my confidence. I had to learn how to go out by myself, get used to crowds and be on busy streets again. It took me 5 years, and a spur of the moment decision to buy a Fiat 500, to get me driving again. I only drive about 500 miles a year, but it allows me a little independence.
I’m thankful that I am a glass half full gal, as dealing with anxiety and panic attacks after treatment eventually finished was difficult, but I was determined to make the most of the second phase of my life. Having a great family and many friends has also been a great help. My cloud had a silver lining, still being around to see my children settled and having time to enjoy the four grandchildren that I never dreamt I would see.
Like @MrsGriff, my volunteer work with Bloodwise has also been a lifeline
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Hi @MrsGriff, @Pisces56 and @Bav.BloodCancerUK I think my positives about having blood cancer are the self insight I have gained into how I tick emotionally, thoughtfully, practically and physically and looking after myself as opposed to everyone else first. I now try to exercise, who would have thought I would have ever stepped inside a gym or take pilates and Zumba classes, the joy is I now don’t care what I look like. A weird one for me is that I now spend some money on myself say for my gym membership and going out with friends for lunch or a coffee etc. I will have a nap if I need it and I believe in having the odd treats. As Rod Stewart sang Live the life you love and love the life you live.
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@MrsGriff @Erica @Pisces56 good morning! 
it has been so lovely and moving to read through your thoughts on this. Such different experiences, but all so inspiring! what would you say helped you get to a place where you were able to see more positives? Was it reading about other peoples’ experiences like Jessica’s above? was it talking to others? or anything else?
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Su, @MrsGriff and @Pisces56, I think it was the self insight I have gained with time that helped me see the positives. Initially it was the ‘why me’ and ‘poor me’ and I think I went through a sort of bereavement or loss process. However I think I am quite a glass half full person anyway and realise how lucky I am in life anyway.
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I was filled with relief when I saw a consultant who realised I was seriously ill after 11 months of symptoms, and admitted me straight to the cardiology ward, and arranged for loads of tests that afternoon (and also had a multi-disciplinary meeting with other consultants) Even when a doctor (who was not one on my case) came with four students and told me that I most probably had cancer there were no tears. The shock set in after I had had my operation and six months of chemo.
I relapsed quickly, and it took another year of treatment (chemo, SCT and RT) before I got rid of my visitor for good.I was on anti-depressants for a while as I had anxiety and panic attacks.When I was able to take small walks it helped, and then meeting other people through LLR (pre-Bloodwise) and getting involved with the charity really built up my confidence. A turning point was when my daughter told me I was going to be a Granny for the first time…I felt useful again, especially as I used to help look after him, and later his sister, when my daughter was working
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@erica @Pisces56 so interesting to read about your experiences both 
@Pisces56 ah, that must have been such a lovely moment finding out you are going to be grandmother
From listening to other stories like yours, and our other forum members, it does seem like a big part of getting through a tough patch or patches, is how positive you feel about yourself?
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Definitely. I felt as if I had lost my reason for being, and for a time wondered whether it had been worth coming through all the treatment, but once I started to feel useful again I felt so much better
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Hi Su and @Pisces56, I definitely felt a disconnection with the world after I was diagnosed and for a while, it was as if I was travelling through life in a parallel isolated path, still in my bubble.
I also think I have got so much from having the opportunities to give something back to Bloodwise and especially by supporting others. I wonder if partly that is because I wish I had had the support when I really needed it, but things have moved on so much since then in the right direction.
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@Erica It’s so wonderful to hear how you were able to turn what was such a tough experience for you into something more positive, and use everything you had learnt into helping others - you have helped so many people!
@Pisces56 same for you! 
Just thinking about what has been talked about in this thread so far. We often do have people getting in touch with us, expressing how being treated as they were before their diagnosis makes a positive difference. For example, still having opportunities at work if they are able to carry on working, or being asked for their help or input on anything from friends and family versus being treated differently in any way.
Can anyone relate to this?
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Hi Su and @Pisces56, to add to @Pisces56 bit. It was really great when people did not see me as ‘Erica, with leukaemia’ but just good old Erica again. I did carry on working for 5 years, but I found all the fulfilling, responsible, proactive parts of my role were taken away due to perceptions of leukaemia as being a killer and alack of communicating on both our sides.
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Like Erica I had nobody I could offload on when diagnosed, although my consultant and the nurses were brilliant. I made some friends on Macmillan, but nobody with blood cancer. I didn’t realise that my panic attacks and the fatigue were normal until I got involved with this charity (although my consultant told me that my recovery would take time)
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You are right, we were so isolated when we were diagnosed and I was brought up not to show ‘weakness’ so not in touch with my feelings and emotions that I never talked to anyone on that level. Nobody in the medical field talked to me on an emotional level either. Also the connection to my symptoms and how to manage them was not talked about. What a difference less than 20 years hopefully makes in support and medical developments.
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@Erica that must have been so incredibly tough for you, the experience you describe at work and having responsibilities taken away from you. It is so positive to hear that you were able to get to a place where people saw you as the Erica the person rather than Erica the person living with cancer. What would say you helped with changing people’s attitudes?
@Pisces56 it must have been such a relief to finally be connected with people who could relate to. it definitely sounds like having the right kind of peer support played a big part in helping you feel more positive?
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Hi Su and @pisces, I think it just takes time and interactions with each other that lets shock and fear emotions to come off high alert, not just for me, but with the ripple effect my family, friends and fellow employees. In hindsight I think good communication really helps.
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@Erica I think you make such a good point about good communication. We sometimes have people get in touch to express how difficult it can starting that conversation with their friends and family. Was there anything you found that helped with encouraging and keeping discussions going?
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Hi Su, I was absolutely useless at communicating with family, friends or work, I think it is because of my upbringing where we didn’t talk about things or say our needs, I was brought up to see being a coper and martyr as being qualities. I was also watching other people’s behaviours and not my own, sorry !!!
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A generational thing I suspect…the stiff upper lip. I was also the oldest sibling, so had to be the sensible, responsible one
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