My dad was diagnosed with advanced-stage DLBCL in late June. He started chemo with a positive mindset - like most people on this forum he’s an extremely resilient and optimistic person! Prior to getting cancer, Dad was active, working - he’s 74 but seemed 10 years younger - and showed no signs of slowing down. But months of pain, sleep deprivation and multiple infections (3 bouts of E.coli / sepsis and now shingles) have taken a huge toll on his physical and mental strength. He’s now barely able to walk and feels very down a lot of the time.
Dad’s approaching his 6th round of RCHOP and 3rd dose of Methotrexate. We’ve been told that his cancer has an unusually aggressive presentation, but our approach is cautiously optimistic.
My question is: what are the best ways to help someone improve their well-being after treatment? Are there any types of exercise or activities which people can recommend? Is there anything family or friends did for you which made all the difference?
Hi @rockbear a great big welcome to our forum and I can hear how much you care about your dad from your post.
You ask a great question.
I can only say my personal experience and I think I would have liked to have been asked what I feel I might like to do.
Treatment can be horrible medically, physically, mentally and practically and really take it out of the person, so perhaps give your dad time and just enjoy your time together.
Months of pain, sleep deprivation and multiple infections must, as you say, take their toll.
I always say that my batteries can deplete very quickly but it takes me a long time to build them back up.
I do not know what your dad’s appetite is like but if he is not eating, he is not getting his fuel so give him time on that side.
Perhaps your dad has other side effects which might not be helping.
The exercise that helps me is fresh air and appropriate exercise, it is baby steps and slow and steady wins the race. I love my music too and laughter is the best medicine.
The best thing you can do is to really look after yourself.
So I think what I am saying is communication with your dad, be led by him, ask him how you can help or is there anything he would like or like to do, everyone is individual.
I look forward to hearing more from you, be kind to yourselves.
I wish i had some words of wisdom for you but i dont. I just didn’t want to say nothing. Im going through similar with my own dad (a different cancer, non blood) but empathise and send warm wishes. Watching our dads shrink in the important ways is devastating and all we can do is be there, encourage, listen and act as advocate as needed. Look after yourself too as you surround your dad with care
Hi @rockbear, welcome to the forum. I can see that you’ve been welcomed in with some lovely and supportive responses already. It sounds as though your Dad and of course you and your family have been through a lot, and it’s normal to feel down as a result. I just wanted to say that if you’d like to talk anything over at all, you’d be very welcome to call our support line (0808 2080 888) and we’d be happy to support you.
I also wondered whether our webpages ‘After treatment’ might be helpful for you and your Dad? You can access this here- After blood cancer treatment ends | Blood Cancer UK. There is some advice on things that can help, with links to other pages such as on eating well, exercise, relaxation, and so on.
Thanks so much for your replies. I was surprised to feel quite emotional reading them.
I haven’t been able to see Dad as often as I’d like, due to living a few hours away and juggling work with raising a young daughter who’s at nursery (i.e. a germ magnet!) while my husband is away. My role in Dad’s small but dedicated support system is to handle the logistics of living with cancer and communicate with the Haematology team between appointments - which has been pretty frequent due to ongoing infections that result in hospital admissions through A&E.
What you say about being present and ready to listen really hit home, because as Dad has become less and less able to talk on the phone, I’ve become more focused on trying to ‘fix’ problems and support my mum who’s been a rock, but is beginning to feel very run down herself.
Just reading your messages of support has been a huge comfort, so thank you!
Hi @rockbear I think it is so natural to be focused on trying to ‘fix’ problems and supporting your mum.
You obviously live a few hours away and are juggling work with raising your young daughter with your husband being away.
It must be so, so difficult for you.
Perhaps you and your mum really have to look after yourselves as well otherwise there is no way that you can look after your dad.
Perhaps as a way of supporting your parents you might send them little pictures from your daughter and/or little cards from you.
A zoom type call, a telephone call, a text.
I know how lovely it is to receive such things. It just made me feel thought about and cared about.
But who is a support for you, you have so much on your plate, I find a soak in a hot bubbly bath with music playing works wonders for me.
We and the Blood Cancer UK support line is there for you to just say how it is for you.
Please keep posting.
Be kind to yourselves, treat yourselves and spoil yourselves.