Living with and after Blood Cancer

This space is for you to talk to others about the practicalities of living with or after blood cancer, and share your story and experiences.

I was diagnosed with CLL in 2003 and I have been lucky enough to have been on Watch and wait ever since. I think at diagnosis and for a few years afterwards I felt just a blood cancer patient and perhaps it was for the 5 years I worked after diagnosis as the diagnosis meant my employers panicked and felt as I had run my department efficiently and effectively that they did not know what I really did. The result was all the proactive roles were taken away from me and I was left with a reactive desk job. It was so sad as I had loved and was proud of my role. For that 5 years I worked, ran a house and slept. After that time I joined some groups and did other things where people did not know about my diagnosis and then I think I became so much more than just a blood cancer patient. I am also very good at hiding my feelings and putting a mask on when the yukky feelings of anxiety came before and during medical appointments. My mind was filled with other things. In a weird way since I have become a Bloodwise Ambassador and re-connected with Bloodwise it brings being a blood cancer patient back into my mind. I go to the gym most days and I nearly always wear a Bloodwise tee shirt which is a great advert for Bloodwise and a talking point so I suppose more people know about my diagnosis, but that does not define me at the gym and certainly does not give me any special treatment in the pilates or Zumba classes which are the main classes I take and love.
I still have the symptoms I was diagnosed with but they are just part of my life today and I manage them, the main one being fatigue. Today I realise that my fatigue can set in up to 24-48 hrs after the event. My fatigue can be triggered by physically overdoing it or emotionally. I do not deal with stress well and I try and organise what I can. I choose not to go out in the evenings, I am partial to the odd nap and sometimes make the choice of something I want to do and know the fatigue will set in. Life is good today, I appreciate life and everything I have, I love my music, I try to eat more healthily, but also have the odd treat and spoil myself. The other priceless thing I have in my life is my friends.

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Didn’t have much to start with, so from zero to zero ain’t difficult! I’ve always been involved in these sorts of activities, so hard to know how to advise newcomers, but the simplest activity to start must be walking. Most centres of population now seem to be doing what they can to encourage physical activity and have usually got walking groups aimed at different sectors of the population. Local papers, libraries etc. usually have details and general experience suggests that any additional physical activity has many benefits, social, psychological and physical. No need to go mad; even the so-called Park Run events don’t have to involve running - a steady walk with company is perfectly acceptable! Slightly tongue-in-cheek, but getting a dog can be a wonderful spur to becoming more active and can give an intro into a whole new social circle, with their waterproofs, leads and poo-bags. Just don’t try to start with a Kelpie-collie such as my daughter “lends” me from time to time. Twenty kilogrammes of hyperactive muscle is a bit too much for a beginner. Our local Bloodwise support group used to organise annual fund-raising walks; we’ve not had the numbers to do this recently, but again, joining in such a walk could give you the boost you might need to get going. Unless you have already been a cyclist, it’s probably not something to take up when you are feeling below par. On the other hand, even if you don’t have a garden, there may be folk with allotments who would welcome a bit of assistance, as do the stalwarts who get their communities into Britain in Bloom or similar competitions. These can offer companionship and whatever level of physical activity suits you. The opportunities are there; it’s undoubtedly the first step that’s the most difficult. What’s the saying " a march of 1000 miles starts with a single step". No need to aim for the 1000 miles, but do take the first step if you possibly can. Dick

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@Erica thanks for sharing your experience with us. We really appreciate it sounds like fatigue can set in and can leave you drained after your diagnosis. Do you have any tips to tackle fatigue? Or how to cope with it?

@DickM Thank you so much for sharing pieces of your life with us! I think your advice on walking as a starting point is very useful. For people who are new, would you suggest them to start walking first a few blocks? Or would you recommend signing up with a walking group to meet some friends in the same process?

Depends very much on the individual; if you are confident you can walk a few hundred yards at least, but don’t like to do it alone, or don’t have the motivation, then a group is definitely a good place to start. Up here in deepest rural Aberdeenshire, NHS Grampian encourages the setting up of walking groups, and used to have an outreach person who facilitated this. I think they’ve had to cut this now, but it’s always worth asking GP or whatever health professional is approachable, if they know of such a person.
If you are really unsure whether you can walk even a short distance, then it’s probably best first of all to try things out for yourself, or better still, with someone you know who can help you if you can’t do as much as you thought. Then when you join a group, you can be completely candid about what sort of walking you think you could manage.
Hope this helps and isn’t teaching grandmothers etc.!

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Hello @DickM,

That sounds like some great advice to start with. In your area before the cuts, did they have many walk groups? or was it just one? Are there other outside groups besides the NHS Grampian in your area?

Ther have always bee quite a lot of different groups here; almost every town/village has a walking group, ranging from the small and very informal, like our village, to bigger, well organised but usually “more 'ard-core” ones that head for Corbets at the very least! Not sure of the situation in England; we, of course, have the scenery to encourage people out, even if the weather isn’t always reliable, so maybe have more groups. NHS Grampian contracted the guy to work with one of the umbrella organisations, the Grampian Over 50s group and with others such as coronary rehabilitation to help them with publicity, organisation, insurance etc… One small word of warning; almost every walking group (and probably every community group!) seems to have at least one wannabe dictator! Won’t say any more, other than try to ignore them!
The other umbrella group that seems to be spreading around is Park Run; despite the name, it’s not just a running group, but is trying to get people of all levels of fitness to start moving. My daughter is one of the organisers for Park Run in a nearby town and says that the absence of competitiveness is very refreshing, as the fitness freaks can so easily put off the rest of us. Park Run must have a website which would give details for each area.

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Hi Josh, I find tackling fatigue is not easy as it just envelopes me. A nap, chilling out with my music and a book and a good nights sleep helps, but I also find that fresh air and a short walk can help. I try and de-stress my life, but sometimes I find it feels better to me to achieve something than having something on my to do list going round in my mind.

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Hi everyone,
I thought I’d share the link to my #BloodyCancer blog where I share my 12 month treatment journey and reflect on my time with Chronic lymphocytic leukaemia (CLL) since diagnosis in 2014. I have written it with honesty, hope and humour, so I’d love for it to be a useful source for patients, their families and healthcare professionals. Also, I’d love your feedback or for you to ask any questions you may have! Hoping it makes a good read and is supportive for other forum members.

https://www.mybloodycancerjourney.co.uk/

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HI. Not been on here for awhile but finished 6 rounds of Chemo O-CVP on 17th February, got execellent results from the PET scan for my NHL Follicular lymphoma. Maintenance for two years has started and I had the first one last week, and my next one will be in June. They will be every two months for two years. No obvious side effects. My main bug bear is still my leg {particularly the back of the knees} it’s a funny feeling, but they don;t seem right and a bit achey, I am presuming this is all due to chemotherapy. My legs were really unconfortable throughout, but I exercised as much as I could in the way of walking, doing stairs etc.,as I was told this would help my recovery - which it has - my legs improved 100 per cent but still with the niggling feelings around the knee area! I am hoping this will improve as well in time. I was wondering if anyone on here is doing maintenance chemo over two years? I am out and about as normal, avoiding crowded areas, etc,. so far but maybe towards the end of the year would like to book a small holiday - but I am very unsure of travelling. ie would it be ok for people on maintenance, can I swim etc., not necessarily for holidays, but I miss going with my little niece occassionally but I was told it was not a good idea to do so? I feel well in myself at the moment, and I know I have to be careful, but I would love to hear what others do how they live their life during maintenance.

Thanks

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Hi @jackalanna great to hear from you again, it’s been a busy time for you.
I cannot answer your questions, perhaps your medical team can answer some as they know you medically and we are all individuals.
It sounds as if you have done brilliantly especially exercise wise, which I personally think is so important.
Yes, wouldn’t it be wonderful to book a small (or big) holiday and also to be able to go for a swim. Also I bet your little niece is growing up so quickly.
I hope others can share their experiences and you get the answers you need.
Please let us know how you get on, look after yourself

Hi Erica!

My questions must be asked millions of times…but it is hard to get responses. When I finished chemotherapy I made an appt to speak with the CNS and asked those things…can I do school run occasionally, can I go to my stepson 50th in March etc. And the response was positive…so I did those things last month…but It felt emotionally challenging…but I did them and now fèel i will just do my normal day with obvious risk assessments .I went clothes shopping yesterday masked up…but the shops were fairly empty…and then my friend and I had lunch in the park …outside table…so I guess this is what I will continue with. Medicine wise I take an anti viral and an anti fungal tablet daily and an antibiotic 3 times a week…so are these helping to stay safe? I spoke with a buddy service on Lymphoma Action who had a similar condition and maintenance for two years but that was 11 years ago for her and she never took any tablets or was not given specific advice re foods to avoid etc. So protocols must obviously changed.! Yesterday my little great nephew hugged me around the waist and asked me did I check with my doctor when I could take him swimming…as he says swimming would be good for my legs!! So cute it was and brought a tear to my eye as it reminded me of the vulnerability we all have to live with. So think I will carry on and try and get on with living my best day to day! I will keep updating…!!! Keep safe

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Yes, @jackalanna the first time I went out socially was very challenging for me too, but the more I do it, the more ‘natural’ it becomes, does that mean that I get less careful, perhaps it does,
It is all about weighing things up for me and I have realised how much I had missed social interactions, they are priceless.
However I have lost a lot of confidence as well, I do not think I will drive again, but there again I am a great walker now and I live somewhere with good transport links, if I should need them…
Your great nephew also brought a tear to my eye, wise beyond his years and I bet so cute.
Living your best day to day sounds great to me and keep safe out there xxxx