Thank you, appreciate the support x
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Hi @Smurf08, I am glad that your mum has turned a little corner and that you have got some more time off work. As I have often said I believe the ‘carer’ keeps going and keeps going emotionally, physically and practically, I know I have done it, but there comes a time, and often as the ‘patient’ turns a little corner, that the toll comes out in the ‘carer’. Perhaps you have depleted your batteries and now is the time to look after yourself, otherwise you cannot care for anyone else. Spoil yourself, you deserve it.
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So sorry to hear this. Are you and your mum living together? And are you both isolated from the outside world (i.e. “shielding” or not going out for any reason ) if there is no chance that either of you could have caught the coronavirus (and this means no contact with other people for more than two weeks) then YES you can officially hug. It is really tough isn’t it. Please know that you are not alone that many of us are facing complete lock down due to our blood cancers. But it must be so hard to have such a diagnosis be given at this time. Do call the telephone helpline also if you need some help and explore the rest of this site for great information if you would like to understand more about the condition. “High grade” does sound like a scary word, a bit like the word “acute” but the hopeful news is that they have a plan and are going ahead with treatment which will hopefully make a huge difference to your mum. My father had a high grade non Hodgkin lymphoma and finished his treatment more than 18 months ago. It is looking like he may have been cured. I also have a low grade or chronic non Hodgkins lymphoma. Mine is a strange one because it is also a leukaemia and so is called CLL (Chronic Lymphocytic Leukaemia).
The NHLs are given different names and can behave in very different was so don’t assume that when you read others stories they will be the same as yours. You might also want to check out some of the blood cancer UK videos for example this one https://www.youtube.com/watch?v=TOJxRhNzrIQ which is the story of a lady who also had a high grade NHL.
Just know that you and your mum are not alone. you have found your way to a whole community of people who are experiencing similar things. We wish you all the best. It is great to read up from reliable websites like this one which has loads of great information and the telephone support line can be very useful.
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Hi everyone, it has been so lovely to read how supportive you are of each other.
And such important points made by you all, the impact such a situation can have on loved ones and that key message that you are not alone- to name just a few.
As Adrian says, please do remember the support line is always here and please do keep an eye out for our latest updates and new information here: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/
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Thank you everyone for your messages. I’m feeling much more positive and recharged now and my mum is doing well.
Keep safe and take care.
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That’s great news! X
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That’s great that you are both doing well, but please keep posting how you are, we are here for you both. Take care.
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Hi all I had cll and transformed into lymphoma been told my chemotherapy isn’t working
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Hi @John, a great big welcome to our community forum. It sounds a very anxious time for you to be told that your chemotherapy is not working. If I were you my mind would be going in all directions. I look forward to hear more about how you are doing and feeling. We are all here to support you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk if you need to. What is the next stage for you?
Thank u Erica very kind, yes head all over the place at the moment, been told I could take part in clinical trials
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Hi @John1 how are you? It’s so encouraging to see you reach out for support across the forum. We only imagine what a difficult time this is likely to be for you and we’re so sorry that you are going through this. As Erica said, the support line is always here for you whenever you feel ready to ring. But of course, please also feel free to continue reaching out on here. Have you had any opportunity to talk through further next steps with your treatment team?
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Hi su I’m ok thank u hope u are too , hopefully get onto clinical trials as I’ve had the strongest treatment they have to offer
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Hi @John1 I’m so glad to hear you’re feeling okay? that’s really encouraging to hear about the clinical trials, hope you have felt well supported and informed with this John?
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Hi @John1, please let us know when you know more about your next stage, hopefully a clinical trial, and we are here for you to share how it is to be you.
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Hopefully get a call tomorrow, sometimes feel positive then sometimes so scared about what is happening to me
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I was fine doing all my treatment until the other day when told it wasn’t working
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@John1, oh, those feelings sound so natural, they came straight back to me when I read your post, I don’t know about you but I don’t like to feel out of control. We are all here to support you and thanks for being so honest.
@John1 I am certainly not surprised, what scary news to receive, have you got any support around you?
Thank u , I have my parents and brothers whom I live with and my girlfriend and friends support, just feel helpless at the moment and scared of the worst outcome
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I thought I was so close to remission so could have a stem cell transplant
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