Hello, I decided to set up a new thread on the forum to encourage people to share their stories about running and how it helped them cope with blood cancer. I am going to share my own recent experience, I am passionate about the power of running (and exercise more generally) to help fight blood cancer. This is how I originally got involved with this amazing charity and also how, ultimately, I became a Blood Cancer Amabassador. So for me, blood cancer, this charity and running have always been inexorably linked together and therefore something bad has generated something good. But it is not easy, and I also want to share the difficulties and my tips for how to deal with these. So I am also interested to hear if you are struggling just doing exercise in any way and whilst I cannot promise solutions I can try to offer advice. I am going to start this with some advice - You might be aware of the NHS ‘Couch Potato to 5K’ programme. This is highly recommended. However, I have heard from people who found it difficult and so were put off running. So for those people, I would like to recommend another programme called ‘none to run’. This starts you off more slowly. I will share a link with you in the next message and also (if I can find it) a link to the BCUK webinar on exercise which I participated in. Sorry got to go but get back to you soon!
Wow… I am also a massive advocate for exercise. I am actually a 2 times Ironman which is a long distance event done in one go 2.4 mile swim, 112mile bike ride followed by a 26 mile run. I have ET and do other long distance events mainly cycling as well. At the moment I am undergoing treatment, and I am unusually tired, but I don’t let it stop me, I always go out the door and if I don’t feel it after a short while I have the option to turn back, but as yet once I am out I find the vigour, or perhaps it is my love of being outside in the fresh air doing something for me that does it. I’ve done a lot more easier rides recently as I am finding the longer ones are leaving me very tired but for me an easy ride is still 2-3 hours cycling. I’m just starting to lead a ladies beginner cycle rides for my local club to try and get other ladies involved. I won’t let an illness dictate who I am, or the way I live my life, I may have to adapt but I will not be defeated.
Hi @DavidAmbassador, thanks for this post. I am not a runner because I have osteoporosis in my spine and the last time I tried it last year I fractured (yet another) vertebrae, but I am a great advocate of fresh air and brisk walking. I have a cordless Walkman with all my music on it, mask on, hat in the summer, as I have re-occurring skin cancer on my head, and off I go often without a clue of where my walk will take me, absolutely wonderful.
Wow, @Joanne, is all I can say and what a great example you are of knowing yourself and your body and what is sensible exercise depending on how you are feeling.
You also have such a great philosophy for life.
I look forward to hearing more about what exercise you are doing and how you are feeling.
Look after yourself.
Thank you Erica. It’s amazing isn’t it how a bit of fresh air does wonders for the body mind and soul. I probably take the level to the extreme when I can but life is for living, who knows what is round the corner and each day is there to be lived. I have youngish children who are in the children’s triathlon’s and sometimes I take them cycling and it is nice to be able to do it as a family. I just wish more people would get out even if for a little walk however slow it may be round the block taking in fresh air etc.
@Joanne, that is truly amazing, inspirational, you name it! I really love to hear stories like this, which is partly why I started this thread, so thanks for sharing. I am sure it will be massively helpful and the stamina and endurance you have built will help so much Of course, be careful while you are on treatment but it sounds like you are. ‘Just’ 2-3 hours. I love that!
Hi @Erica - sorry to hear that, I did not realise you had this condition. It is tough. But you have a really positive attitude. And if we cannot do one type of exercise doing whatever you can is precisely the correct thing to do. My attitude is a bit like that. If I cannot run I will walk. If I cannot walk I will hop. Whilst I cannot run properly at the moment I consider myself as lucky since I have been given a path to recovery. If they told me that I would not be able to run again I am not sure how I would have handled it, but I can now at least empathise better with those who cannot do the exercise they want. Due to my enforced lay off from running I have rediscovered the joy of walking.
Running for BC Patients Part 2: Tips for Beginners
Here are my tips: Some were discussed at the webinar but no harm in repeating - please add something if you have another tip not mentioned here.
- Check with your medical support that there is nothing preventing you from running. If there is, whether illness or injury, consider getting a referral to a physio who can help find form of exercise appropriate for your situation. You will usually need a referral from a GP. But if you have discussed it with your clinical support and they agree then it should not be a problem. Of course most are doing telephone only appointments. Recently I have benefited from this as I cannot run and am trying to get back (Long story). I was given online exercise programme to follow with videos and the possibility to record progress - all from the amazing NHS. I will share my experience further in later posts on this thread.
- Find a suitable exercise programme and make sure you start slowly. Too many people get put off running by trying to be too ambitious at the start. Be patient and you will notice improvements over several weeks, not days (Sorry). But this is part of the joy. Compare yourself afer a few weeks to how you were at the start.
- Make sure you have a good pair of running shoes. Visit a specialist shop as they will take time to check how you run and provide shoes that suit you. E.g. whether you are an “overpronator” (your feet tend to move inward, or a more ‘neutral’ runner. Wearing cheap, unsuitable shoes is a surprisingly common cause of injury.
- Once you have developed your confidence and feel you can run for at least 10 to 15 minutes consider joining a local running club. Most clubs welcome new runnners and all abilities (but check the details on the club website as it could be rather dispiriting to realise you have joined a club of young, potential Olympic Athletes. On the other hand, you could have a chance to meet others who can relate to you as a new runner and will be more than happy to provide support and encouragement. Unfortunately, I only learned the joy of running club after running alone for 12 years. I still love running alone but am now also missing the social side of seeing my mates at the club. I can thank them for helping me to do my first marathons last year.
- Do not get stuck in a rut. Vary your running as much possible by trying new routes.
- Safety is king: Do not run alone in any ‘dodgy’ neighbourhoods. If running at night wear a high visibility jacket and a head torch for areas with poor lighting. Always bring a phone.
- Listen to your body. Yes, you want to challenge yourself a little but if you get any pain there is no shame in stopping right away. You will learn eventually how to push yourself just enough to improve and not so much as to cause injury. Be flexible with your training plan - if it is too hard find another or go back to an easier week.
- Never, ever compare yourself to others. Yes you will meet plenty of people who are fitter, can run faster, longer than you. Only compare yourself to you and congratulate yourself for running despite your blood cancer and proving this is not going to stop you.
- Do supportive exercises - you need to build strength and develop muscles that will support your running and help prevent injury. A good plan will include this. Some cross training (e.g. swimming or cycling) can be good.
- Once you have completed your training plan the 5k Park Runs are a fantastic way of further developing your running and introduction to the amazing world of running events. There are hundreds of these throughout the country and so there is a good chance you have one on your doorstep. (Once this covid nightmare is over).
- Talking of running events, entering one of these and running for charity (BC UK!) is an amazing way of providing motivation, particularly if you have been struggling to get out of the door. But do not be over ambitious and if you do decide to do a longer distance one (e.g Half marathon) give yourself plenty of time to build up to it. I would recommend at least 8 months to train for a Half. Best to start with a 5k though.
- Do not be afraid to look for advice - there are a lot of running forums, Youtube videos, you name it, that can help and answer questions you might have.
I have not always followed all of my own tips all of the time, but, for sure, I know I should have!
Finally. as promised, I have put the link to the “None to Run” programme below.
As mentioned, this is a much gentler way to join the world of running than the couch potato to 5k which I think is much harder for anyone who has not exercised for a while. But have have a look at both and see which suits you better. They both have merits.
Thanks David. I did do Couch to 5k but it was before I was diagnosed. I would be very interested in the no running etc. Will wait for the next ‘episode’.
Hi David, I’m not a fan of running, but at age 73 I guess that’s not surprising. However, I am a huge fan of brisk walking and as a sufferer of MF I am convinced that this form of exercise is good for my mental and physical health.
Many thanks for your positive post and tips.
Hi @Jstubbings, thanks for your comments, happy walking!
Sneak preview of Part 3 @CLL6, it is on “Returning from illness and injury”.
Hope you will find it of interest but as usual hoping to get other people’s experiences since every contribution is valuable (and I usually learn a lot from these as well). Hope to put this up by this weekend at latest (work etc permitting)
Hi @Jstubbings, I am 70 yrs old and a brisk walker at a steady pace as well.
I agree with everything you say and it also gives me the opportunity to be nosey and appreciate nature.
I look forward to hearing more from you on this topic and others.
Hi, absolutely brilliant, it is definitely the way to go, exercise however you can! I have discovered youtube exercise classes since lockdown and have never been fitter, ha (apart from the follicular lymphoma which has relapsed slightly, starting treatment in the new year). It keeps you sane and definitely helps with those not so good dark day, take care everyone xx
Hi @Loulou, a great big welcome to our forum and you seem to be likeminded to people on this thread. Yes, I think it does keep me saner and I feel so much better mentally and physically.
Please let us know how your treatment goes in the new year and how you are feeling.
We will be supporting each other on this forum over the holiday season and beyond.
Take care and stay safe.
Running is something I think wd be good for me, but as well as CLL I have ataxia so I trip myself up even if I break into a brisk walk
Hi @BobK99, I think a careful gentle stroll is still exercise and when you are walking slower you can be even more nosey and also appreciate nature etc more.