Hi. My fiance was diagnosed with Chronic lymphocytic leukaemia (CLL) in Oct 2018. He had fibromyalgia but I recognised that his fatigue was much worse. At that time he was working full time but really struggling. In 2019, they cut his hours in half. Spinforward through pandemic times and his employer wants to mdeically retire him but despite his GP and consultant saying they can’t see him returning to gainful employ,ment within 3 years, the employer got an OH report ignoring that and saying he could…which would mean buttons for a pension. He is only 54, I am 62 and apart from PIP all he gets is SSP. So it’s all on me to keep earning. I work freelance in market research which is never guaranteed. I just feel so worn down, I don’t know anyone else who I can speak to. I see other people talking about going back to work then look at my other half who spends most of the day on the sofa. Then he ant sleep at night. My Mum died 10 years ago but I really wish could just go see her. Just feel like having a good blub. I don’t know how much of his inactivity is depression but I can’t see how being so inactive can be good for him. I’ve tried encouraging him to get a bit fitter so when he needs treatment he will withstand it better.
Hi @masueuk i can only speak from my perspective. I was diagnosed with non hodgkins lymphoma jan 2020 on watch and wait. I decided to sort my life out and am now probably fitter than i ever was. I have a treadmill and walk briskly 5 miles a day, have cut out processed food. I feel this has helped withy mental heath so much. I still work full time over 4 days and look after my grandson 1 day. Could you go out for a walk with him on the excuse of you both having more excercise. Its hard isnt it because you have to want to do it.
Have you spoken to any of his friends about this… it sounds like he massively needs to get out of a routine but also give you a break too… I know with covid it’s tough to socialise and join clubs but it seems he needs a project or revisit a hobby or start a new one anything that involves getting out the house and being with people.
So sorry to hear about your current situation but know this is a safe place to express how you’re feeling.
He doesn’t really have friends apart from a chap from Macmillan who calls him. He also has kept knee arthritis so walking is very painful. The GP has referred for physio and also mental health so fingers crossed they help. I worry that I enable him to be so withdrawn, I have always been someone who makes things happen but can’t get this done somehow, but thanks so much for replying
Hi @masueuk, I am more concerned about you, thank you so much for having the courage to post, You can lead a horse to water, but you cannot make them drink and all that and I find the more I try and get my hubby to do something the more he digs his heals in.
Firstly, as you show above you have probably been on the same rollercoaster of thoughts, feelings and practicalities as your fiancé since his diagnosis, plus I expect working, looking after your home and his needs. No wonder you are absolutely exhausted and missing your mum. Your batteries are probably completely depleted.
Probably a really good blub is what you need as well.
If you have told your fiancé exactly what you are thinking and feeling and the financial pressures you are under then that is all you can do.
Do you feel you might benefit from some external help like counselling, it is not for everyone, but it really helped me in the past. You might know of local services or your GP may be able to help.
The main thing is that you look after yourself, you have and are going through so much.
Please do keep posting, you are not alone now and perhaps here is the one place you can be really honest how it is for you and if you would like to talk to the Blood Cancer UK support line their details are above. Take care
Absolutely echo what the amazing @Erica has said… it’s so easy to shelve how you are feeling and neglecting yourself by looking after others, that you kind of need that stop moment (often when you breakdown or meltdown) to realise that if you genuinely want to help others in the best way you can, you need to be 100% physically, mentally and emotionally.
It took me years to realise that I needed a part of my life that stayed mine. Where reality, daily routines and people were just background noise. Even if it was going for a walk, listening to music with headphones or watching a programme uninterrupted but the most important thing was not to feel guilty and seeing it as being selfish.
You matter too
It’s me again @masueuk and what a good response from @Rammie18.
I also love my early morning walk with my Walkman music playing. It gives me a chance to forget about yesterday, and not build up resentments which I am prone to do and is not healthy. It clears my mind for the day, gives me a chance to decide what I need and want to do.
I love the changing seasons and what they bring and I appreciate that the best things in life are free.
I also enjoy a big bath full of bubbles, again ‘me’ time.
My luxury is a bedtime hot chocolate.
I was medically retired after developing the rare lymphoma, Mycosis Fungoidies, and after it got serious leading to an amputation it was very hard to get the work doctor to say I was fit for for work.After the second serious attack by the lymphoma I had little choice but to take medical retirement and my pension still hasn’t been sorted out and this happened about 10 months ago.Luckily I have enough savings to tide me over and part of the medical retirement was about a years pay and I have paid into the pension for about 28 years but I don’t know what happens to people who have only worked in a job a few years?As I understand pensions many of them have a clause saying if you are taken ill with a serious illness that effectively stops you doing your old job your pension is paid as though you had paid your contributions up to the retirement age.
Is your partner a member of a union? I know they aren’t fashionable these days, but, while a lone voice can be ignored, the voices of strong unions can make a difference. While my wife was working, her employers refused to let her join the superannuation scheme, as she worked part time. With the help of our union, she took the employers to an industrial tribunal; employers huffed and puffed until they got to the tribunal, at which point they caved in completely. Her pension now makes thousands of pounds a year difference to our family income.
So it’s well worth while getting a union involved if at all possible. They have specialists who know their way around the law and I suspect his employers have been sailing very near the wind in their treatment of him.
If he’s not a member, it might be worth consulting an employment lawyer, or the CAB. Easing his position would then give you some more flexibility.
DickM (still a card carrying member!)
Hey! Tough choices.
My diag Chronic lymphocytic leukaemia (CLL) 2015, 2018 FCR in remission. Getting fit is essential and will make a huge difference. I have a P Trainer with an interest in fitness in chronic disease. Largely do my own thing now tho.
Hi @JohnP it sounds as if your personal trainer has been good for you.
It sounds as if others have had a battle with their employers first.
Yes, tough choices.
Take lots of care of yourself and keep letting us know how you are.
A warm welcome to you @masueuk I’m so glad you found this community. So understandable you’re feeling worn down, although I’m sorry to hear it. It all sounds very stressful for you. You might find ACAS useful to speak to as they give free, impartial advice on employment- Acas | Making working life better for everyone in Britain
Also, you mentioned that you’re encouraging your fiance to get fitter so I wanted to just send you the link to our keeping active page as it has some different tips on there for people with blood cancer - Blood cancer and keeping active | Blood Cancer UK. We also held a Q&A on Keeping Active with blood cancer, which is still available to watch, here.
It’s really good to hear that his GP has referred him for physio and mental health support.
In case it can be of any help to either of you, we have this page on Mind and Emotions which talks through the little things people can do to help them cope through challenging times - Blood cancer: mind and emotions | Blood Cancer UK, as well as this panel discussion which you and your partner may find useful to watch - Self-care tips from a clinical psychologist - YouTube
Really glad you found this forum! Take care and remember we are here to support you.
in spite of everything that you’re going through @masueuk , I think you’ve got a good grasps of things and keen see clearly even if your partner can’t. Others have given you some very good practical advice but do check in with us and let us know how you are doing. Stay strong.
Thank you so much everyone, all great advice