Hi, my partner was diagnosed with Lymphoma 3 weeks ago. We know its in small intestine and has spread to liver. we saw a Haematologist 3 weeks ago, he put him on iron tablets, referred for PET scan and liver biopsy. He has had those and we are in limbo. He is 60 two weeks today and has just retired. Was a very fit mountain biker and hill Walker, I’m watching him fade away in front of me. No date for future appointments, no cancer nurse and no idea what we do next. He has the mobile for Haemotolgist but no out of office number. He mentioned possible Chemo called R CHOP. Wondering if he should have 4th covid jab?
I want to help and support but don’t know what best to do. Sadly I have Cystic fibrosis so my own health issues too.
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Hi @Supporter18 welcome, I am so glad that you have found us, you must both be in complete shock, you are now part of our forum family so this is the place you can be really honest about how you are feeling and thinking, practicalities etc.
The Blood Cancer UK support line is also there for you if you would like to talk to someone.
Your partner has the number of the haematologist so perhaps he could ring them to ask the way forward, if not his GP.
You probably do not need me to tell you but waiting for tests, results and appointments are the worst times, let alone not knowing if and what you are waiting for.
As for yourselves my personal experience would be to keep listening and talking to each other about your fears, questions, practicalities etc.
This is your partners opportunity to write all those things down for his next appointment too.
Another reason you are in limbo is your partner just retiring and I found it a time for reassessing your lives, what you both want out of it and balance of relationship etc
To help and support is probably to ask your partner the question, everyone is individual and just be there.
As you say you also have health challenges so it is so, so important that you look after yourself as well.
Look after yourselves and be kind to yourselves. Please keep posting
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So sorry you and your partner are going through this @Supporter18, would you find it helpful to talk things through with us on the support line? If so, our free and confidential support line number is 0808 2080 888. We’re open until 7pm today.
Erica’s given you some really useful advice above. We have a section on our website here for people who are newly diagnosed, which might be useful for you both to read through -
I’ve just been told I have blood cancer | Blood Cancer UK -
it explains, You should be given a named key worker – Someone in your medical team should act as your main point of contact for everything to do with your medical care and wellbeing. This is usually a clinical nurse specialist (CNS). If you haven’t been given a named key worker, don’t be afraid to ask for one.
I imagine it’s a really worrying time for you both - don’t be afraid to get in touch with your partner’s GP and/or consultant to chase up the dates of the next appointments.
You ask whether your partner should have a 4th Covid vaccine, so this page might be useful as it talks through the vaccine schedule the JCVI recommends for people who are immunocompromised. We would encourage your husband to ask his consultant for their advice around when his next dose should be, if he’s starting treatment soon - How to book a covid vaccine if you have blood cancer | Blood Cancer UK
We also have different information around lymphoma and treatments, if you might find it helpful at this stage? You can download/order them through the post, for free here - Blood cancer booklets, leaflets and fact sheets | Blood Cancer UK – Blood Cancer UK Shop.
We’re here for you, both on this forum and on the support line, so please don’t hesitate to get in touch.
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Thanks to everyone for your support. We had a call yesterday to say it is not Lymphoma but is GIST. So know waiting for another MDT discussion. I realise that this site is for blood cancer so will start researching elsewhere.
Thanks for your support and advice, good luck with the next part of your journey all.
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Thanks for letting us know @Supporter18 and I wish you good luck, good health and take care of yourself