So, a year on from a post I made and yesterday someone else had read it and asked me if things get better. If I hadn’t read my previous post I would’ve almost certainly said no. I would’ve said I still feel the same and it’s just too hard. But actually, that one question really made me reflect on me - something I find really difficult - especially looking at the positives and not the negatives. What with conversations with you all, friends and in counselling sessions I think I’ve definitely made headway. It all feels very emotional and even as I write this I’ve shed a tear or two, but for different reasons than normal. They are not negative tears. I’m not beating myself up but recognising how far I’ve come and if I’m honest that’s even more emotional. My counsellor talked about the fact that if anything positive had come out of the lymphoma it was to the fact that I had realised that I needed to look after me and she was right -we don’t do that enough. Who would’ve thought I ever would’ve said something positive had come out of this, I surprised myself! So, that’s what I will work on now. More regular reflection, looking after myself and realising that there will still be hard days and that’s ok. It’s not just going to disappear but it will get a little better, easier and more manageable each day. I’m not putting any time limits on anything and I’m just going to keep trying my best. So, I owe a really big thank you the person who asked the question. I’m sure when you asked you didn’t realise that it would’ve helped me so much X
Hi Nichola. Thank you for a lovely post. Cancer is hard and sometimes I think “Why did they put so much effort into getting rid of my lymphoma?” This is especially true because of the side effects I now suffer. That is a bad day, when I shed a few tears and sometimes throw a tantrum. The good days do outweigh the bad though, and I can think of many things I have gained.
I have made many friends through MacMillan and Bloodwise, and I have learnt who I can really depend on. I am also no longer afraid to say ‘no’ and am more able to prioritise what is important in my life. It is difficult when a wife and mother to put ourselves first. Look after yourself xx
We have to let ourselves go with those bad days don’t we because it’s such a difficult journey and they are to be expected. It’s a great thing to identify some positives and that’s my biggest learning this week. I hope someone is there to give you a huge hug today. I’m sending a hug to and hope tomorrow is a better day X
Thank you so much for sharing Nichola, I am sure lots of people on watch & wait or living with a chronic blood cancer will relate to what you have written.
We all have bad days but I think you’re post shows one thing very clearly that people in our position are able to show an inner strength that they never knew they had. You certainly have that and you’re doing much better than you think you are. Stick with it. We’re all here.
Franco, I really agree and the self insight I have gained is priceless and helped me to make positive decisions, like who I really want to spend my time with. How are you doing and feeling?
Thank you Franco. We definitely do!! I hope you are well? X
Such a lovely insight, thank you for sharing @Franko - do you relate to Nichola’s post at all, or has your experience been different?
I remember the early days before my diagnosis when no one believed and yet I was in terrible agony. When the diagnosis came it was actually a relief to find I wasn’t imagining it and actually had something to fight so I was able to face it with more fortitude and was keen to get on with the treatment. I minded more about being stuck in bed and not able to get out and do things like everyone else and enjoy that heatwave. When I got home I adapted very quickly and soon was out and about with restrictions. It made me more determined and battle-hardened. If I needed an off day I’d play music and level my mood out. Now I no longer take doing stuff for granted and things that used to cause me worry or irritation, I can put in perspective.
Hi Franko, I am so impressed at how you manage to put the things that cause you worry or irritation into perspective, I struggle with this in practice, any handy hints would be very welcome. I also feel better and then overdo it and then feel worse or fatigued, I don’t learn.
Hi Erica. I think after my horrific experiences last year I came to the conclusion that it wasn’t worth getting upset over a late bus or train or by someone standing in my way with their face buried in their phone (all things that used to infuriate me). I realised I’ve got bigger battles to fight and that I should reserve my energy for those and that really there’s not that much in life worth getting upset over and I should cherish the things I’ve got and make the most of them. Also to find some time most days for me and to do something I like to have a better quality of life. I did a mindfulness course at King’s recently. I don’t I really bought into mindfulness as a concept but it seemed to help someone of the other people on the course. What I did gain strength from was meeting other people who had been through similar experiences and being inspired by them.
Hi Nicola, it sounds to me that you have really got so much personal insight in a year and probably changed what you thought was really important in life for you. You sound so much more relaxed and realistic about your life too. Thank you for your post you have really helped me think about myself. Take care.
Yes - definitely some positive changes which were well needed. Glad you made some time to think I about you X