Living with and after Blood Cancer

You are so much more than just a blood cancer patient. 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.

1 Like

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

1 Like

@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.!

2 Likes

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.

1 Like

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.

1 Like