thank you, my kids are pretty uncaring unfortunately. It’s just the way things are I think these days with adult children they’ve got their own lives but you feel so vulnerable. It’s like what on earth? I’ve been on my own for 20 odd years so I’m used to that and quite like it LOL but I didn’t think I would have to face this. The worst thing is I moved out of the city to the coast and having my treatment in the city because it’s better and now I’m stuck for places to stay. How do people get on with long drives do you know?
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Re your question about long drives @Twighlight222 it really does depend on the journey and how you’re feeling.
Sometimes treatment can be exhausting.
It’s worth checking with your clinical team if there are places nearby where you can stay as there might be arrangements with some places for people in your circumstance
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Hi @Twighlight222, just wanted to check in and see how you’re getting on - hope things are going as okay as they can be.
Ceri - Blood Cancer UK Support Services
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i’ve had my second cycle of chemotherapy, the first antibodies really gave me itchy eyes and ears and they had to stop and allow it to go slower. The second session was awful. My throat began closed and my tongue felt swollen. I got quite distressed because I knew I needed treatment but if I was allergic to it, how could they do it anyway? I’ll have the second block and it was pretty awful. I still feel very very very very much alone alone and still in shock over my diagnosis,financially things could be a lot better also… it is what it is I suppose and we have to just keep on trying. When I read on Saturday that the rugby player died of non hodgkins folicular lymphoma and complications absolutely terrified me. I’m not very good at expressing how I feel, but I do appreciate the email thank you.
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Wondering if you have spoken to a MacMillan Benefits Advisor to check that you are getting all the support available to you financially.
I know a lot of people don’t think it’s worth doing but there are benefits that aren’t means tested.
Sorry to hear that treatment has been challenging. Take care
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Hello @Twighlight222
So sorry to hear that you experienced some negative side effects from your second cycle of chemotherapy. We can imagine this was quite scary for you and it is normal to feel apprehensive about further treatment when you have had an experience like this. Please do let your team/ clinical nurse specialist know how you are feeling, so that they can support you as best they can. Did they mention perhaps prescribing additional medications to prevent this from happening next time?
In case it is useful we have a page on mind and emotions - Blood cancer: mind and emotions | Blood Cancer UK this includes some suggestions on ways to look after yourself and your mental health as well as where to get more emotional support if needed. As mentioned, do keep your treating team up to date with how you are feeling as they can also provide support and additional resources.
It can be hard to read about other stories at times and can be overwhelming to hear negative or upsetting news, so please do take care and if it feels too much, perhaps there is something else you can do to take your mind off things such as puzzles, going for a walk or grabbing a hot drink with a friend.
We do also have pages on money and work Blood cancer: money and work | Blood Cancer UK which includes information on types of benefits and other financial support. They also contain sections on other help you might be able to access, such as one-off grants and help paying bills.
I also just wanted to let you know about Lymphoma action’s buddy service they offer - Buddy Service | Lymphoma Action which gives people the opportunity to speak to someone with lived experience of lymphoma. The buddies may have the same type of lymphoma, and often will have had or about to have the same treatment, in case this is helpful at all.
Do take care & keep us updated.
Warm wishes,
Emma (support services nurse)
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