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Thinking about the upside

I am sat beside a beautiful lake pursuing my lifelong hobby of angling. I have been here since Monday pretty much on my own.
I have Myelo Fibrosis and am in the intermediate stage. Apart from some fatigue and moderate symptoms I feel quite well and capable. However I have a very low antibody count and take the advice regarding immunosuppression and vaccine response seriously.
I have a wife, 3 children, 5 grandchildren and an elderly father as well as siblings and their children living locally. My youngest son lives with us and is a front line worker in a supermarket. They have all been fantastic in supporting the approach we have taken so far. However I have reached a point where I want them to get back as nearly to normal as they can.
Soooo! I go fishing in a tent for a week (believe me this is not a hardship, I have all the gear I need) and they do all the things they should be doing. After five days they get back on the shielding horse and do tests, if they are clear I return 2 days later. I even catch some fish
Not for everyone I know but hey! Ive been trying to work this for 50 years. I don’t think I have ever managed to keep everyone happy before. And that includes me.
Next plan, some long distance walks I’ve had my eye on for years, maybe, but then again the fishing is very relaxing.

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How amazing that you’ve found a way to work through these challenging times so that all of you can get back to doing some of the things you love and enjoy. Felt happy reading this! X

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Oh @Lance I feel so relaxed after reading your post, thanks so much.
It sounds as if you have a really loving, supportive, multi generational family around you
I think what struck me is that ‘the best things in life are free’ and before diagnosis I was far more materialistic and went through life on autopilot not noticing nature and wildlife or so many other wonderful things.
I am also a walker, but also like to have my music playing in my ear whilst doing so.
All I shall say is enjoy life, it is so important, and really look after yourself.
Does anyone else relate to this and what do you really enjoy doing?

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Your life sounds idyllic and you’re certainly in a positive place @Lance . Hope you catch some big fish. I’ll settle for a walk as I’m squeamish :slight_smile:

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Hello @Lance. Thank you for your post ‘thinking about the upside.’ This is a very helpful reminder to grasp the unexpected opportunities that a change in health can open up. The September sunshine has been perfect for me this year! I have been for my first post-SCT swims in the sea this week because the beaches have been so quiet. I managed to find a complete rash suit, like a wetsuit but for sun-protection, in the sale and I have been putting to to good use. I think it protects a little against the cold as well. I recommend it for anyone who loves outdoor swimming but has to be careful in the sunshine. Normally I would be starting a new term at work or at university. This is my first September with no plans. I’m glad you have been enjoying your time fishing by the lake. (I am new to the BCUK Forum and finding it very confusing so apologies if I am writing in the wrong box etc. I’m sure it will get easier…)

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Hi @Coastgirl, I think your name describes you rather well
Welcome to our forum and although you can post wherever you like it seems you have done it perfectly.
Your first post SCT must have been so wonderful and yes, haven’t you been lucky with the September weather this year.
I am also a girl for a bargain and it sounds as if you got one with your rash suit and you have had good use from it already.
My walking boots were supposed to be waterproof and quite cheap, I have to say they are not waterproof and they are starting to fall apart.
I also have to be careful with the sun as I have had skin cancer on my head.
A September with no plans sounds very liberating to me, please let us know what you choose, or not, to do.
I am still isolating, but I love my early morning walk, wet feet and all… I also do a Pilates DVD every day.
It does get easier as you get more familiar with the forum, There is also good information on the Blood Cancer UK website and if you would like to talk to someone the Blood Cancer UK support line details are at the top of each page.
Look after yourself and I really look forward to hearing more from you.

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Hi @Erica,
Thank you for your kind welcome. I’m sorry to hear that you have had skin cancer on your head. We (blood cancer patients) all seem to encounter so many challenges.
That’s a very good idea to do a pilates DVD. I try to walk each day too and I enjoy that very much but some kind of indoor exercise programme sounds like a good idea as well, especially for the autumn/winter months. I wonder if you or any other forum members have suggestions of good exercise websites (ideally free ones…) Is it best to ask that as a separate topic or thread?
For some random reason I thought that shielding might end this summer once most people were vaccinated but it’s not really looking terribly safe yet. My immunoglobulin As - the part of the immune system that wards off respiratory diseases, if I’ve understood that correctly - haven’t appeared to come back after my second transplant, so catching Covid would be a very bad idea for me. I’ll see what my consultant advises in a couple of weeks’ time.
Thank you again for replying so quickly. I am a member of another cancer forum but fewer people seem to be using it these days so I thought I would give BCUK a try.

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Hi @Coastgirl I find the advantage of doing a Pilates DVD is that I can do it when I want to, it comes up on my big TV screen and I can pause when the washing machine finishes etc. The disadvantage is the repetition, but you can turn that round to an advantage because I can see the improvement I make over time.
I have 8 DVD’s and rotate them. What I would advise is that you have a basic understanding of the moves, core and breathing before working with them.
I know a lot of people use You Tube videos and as you say I am a girl for free ones too.
Yes, it sounds a good plan to ask your consultant every question that is on your mind, I always need to write a list so I ensure I ask everything.
Look after yourself and who knew we would still be isolating after 18 mths.

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Hi @Erica, that sounds like a good plan and great that you can see the improvement since you started. I used to do Pilates classes when my children were young so I did learn some of the basics then. I might give it another try via video as you suggest. Many thanks for your suggestions :slight_smile:

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