She is not eligible for a transplant and it is not an option. She has lots of blood transfusions and platelets and chemo and that’s it for her. As we are not near her we get very little info. The chemo and transfusions are keeping her alive.
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I am so sorry. What a difficult situation for you all.
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Hi @Vickyt - it sounds like a very difficult situation for everyone, especially given that her illness is terminal (I’m so sorry!) so you must want to see her very much. I wanted to give you a bit about my situation and how I cope with things. I’m also still shielding (as is my Aunt, who has a different blood cancer to me). I totally understand people wanting to visit me on their terms (inside, hugs, etc) but it’s difficult bcos they’re not in my situation and it isn’t their life that is at risk. The sense that people we love may be judging us about wanting to protect our lives can feel quite heartbreaking (I’m not saying you are judging, I’m just hoping to convey something of how that can sometimes feel).
I absolutely understand you desperately want to see her and have those interactions and I loved one of the answers given above about costas etc. I have regular zooms & cuppas with friends, some of whom also come for garden visits - I either chat to them from my window or sit downstairs at my back door with them in a chair outside, both of us masked and at distance, with them having to have done an LFT first. I don’t get many garden visits lol, especially in the winter (and I personally prefer zoom/skype since I can see their whole face and everyone is warm!) but maybe you could suggest something like that? I also run film nights with friends, chat via voice messages & phone & set aside particular times for particular people for online chats. The key, I’ve found, is to get creative and think outside the box, looking at all the incredible options for non-physical ways of connecting and keeping communication going. Those will matter to her immensely and you may find it helps to build her trust that you really do understand where she’s coming from and value how she feels about her own risks and how she needs to manage those.
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Thanks so much @Chapsticks i really appreciate your perspective xx
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Hi @Sandra have you started treatment yet?
I wonder how you are now?
Take lost of care
Hi all, hope you’re all doing okay. We just wanted to mention on this thread, our new podcast for carers, relatives and friends, just in case any of you may find it a useful source of support to hear other people’s experiences. In episode one, ‘From partner to carer overnight’, you’ll hear Gail and Kayleigh talk frankly about how life changed when their partners were diagnosed with blood cancer, and the advice they’d give to anyone in a similar situation. We hope to bring you more insights from loved ones later this year.
Here’s where you can listen:
Amazon Music
Apple Podcasts
Deezer
Google podcasts
Podcast Addict
Spotify
YouTube
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It is a brilliant very honest podcast and well worth a listen to by everyone, especially a family member, carer or patient
A great big thank you to Gail and Kayleigh
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