Mum re-diagnosis

#1

My mum had a biopsy about a week ago after discovering a lump on her neck which the doctor believes her low grade lymphoma has returned as high grade. She is due for a PET scan tomorrow, but got rushed to hospital this morning with severe pain in her abdomen.

Unfortunately turns out they’ve discovered another lymphoma on her kidney. I’m acting as strong as I can but there’s only so long you can hold it in for. I’m just after a few words of support, obviously I have my dad, brother and friends but sometimes you just need someone else to chat to.

Could 2020 get any worse…

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#2

@bluebell99 I am so sorry to hear about your mum’s diagnosis and all that you and your family are going through right now. I can only imagine how tough this must all be for you.
May I ask how you are coping at the moment?

Also, is there any general information, at this stage, that we could send you that you’d find helpful?

I’m really glad you’ve reached out to the forum for support. If you want to talk things through with us on the support line, we are only a phone call away on 0808 2080 888. We’re available throughout Christmas & New Year period between 10am-4pm except for bank holidays and weekends, but if you leave a message we will call you back asap). Take care and remember we are here to support you.

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#3

Hi @bluebell99, a great big welcome to our forum, I am so glad you have found us.
You must feel so shocked, scared and powerless.
I think the support this forum gives me is that I know it is a place where I can really say what it is like to be me. Sometimes I find this forum understands how I am thinking, feeling and understands my practicalities better than my nearest and dearest.
Can you really talk to your family and friends?
You have the details of the wonderful Blood Cancer UK support line and it’s opening hours above.
We will be supporting each other on this forum throughout the holiday period and beyond.
Try and take care, communicate and spoil yourselves

#4

Hi @bluebell99. How are you all doing? I know the re-diagnos was really difficult for you all x

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#5

Hi best wishes to you all during this difficult time .Having experienced a similar situation ,keep positive there are so many new treatments available,I battled through such a similar scenario & now doing okay .Keep strong much love to you all x

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#6

Hi @Thelimes. Have you got any good tips or advice on how you got to where you are now? Always great to hear from others who have experienced similar things x

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#7

Hi I made a decision to ask for referral from a local hospital to a haematologist at a teaching hospital which had a good research department. This involved may hours travelling & being away from my family.but their expertise offered me greater treatment options & a wider range of expertise.For me this was a great decision but not for everyone .They treated my high grade transformation & I then had a stem cell transplant.which has given me a better quality of life .Good luck in whatever you do keep positive

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#8

Sounds like you really took control which I love! I’m glad things are better for you now. Thanks for sharing :blush:

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#9

Hi @Thelimes, there is a thread under ‘going through treatment’ called ‘local hospital or expert centre’ that you might be interested in.
It sounds as if you really made the best decision for your needs, but not an easy one.

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#10

The most difficult of decisions,a truly traumatic time but now realise that taking control was the greatest thing I ever did.Good
Iuck to everyone & best wishes for a better 2021.Dont ever give up my journey was torturous but so worthwhile.

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#11

Hi @Thelimes, thanks for the way you described your dilemma so well, yes, let’s hope 2021 is a better year for us all.
I look forward to hearing more from you soon, take care.

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#12

Hi was just wondering how things are going for your mum.Hope she has seen her haematologist & has a clear path to go forward.Above all keep positive & look after yourselves .

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#13

Hope you and your mum are doing okay x

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