Hi. Iām new here. I hope this is the right place. I have Follicular lymphoma ('FL') stage 3 diagnosed in April, and just finished my Rituximab about 5 weeks ago. I think its working as Iām so tired! I see my Cancer Doc next week and Iām hoping sheāll give me good news. Iām keeping busy messing with my guitars - I have 27 at the moment and reading books and comics. I made this page on my computer as a kind of therapy. I donāt know If Iām in the right place and allowed to put up pictures but here it is. Itās me in the pictures.
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Hi @ecclesalan and welcome to the forum.
Iām sorry to read about your diagnosis and delighted youāre just getting on with life.
Fantastic you are volunteering at your local hospital.
Youāll find a great bunch of people on this forum who are always willing to help and welcome contributions from everyone.
Take care
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Hi @Greycat and welcome to the forum.
Iām sorry to hear about your diagnosis and hopefully doing okay.
Love the comic and the story about messing with guitar.
I recently picked up my acoustic guitar recently and restarted trying to learn again after a long break through treatment and transplant.
If you are into music thereās a wonderful thread called The Friday Forum Jukebox where someone suggests a couple of words and then we share songs relating to those words.
Always great fun, something that takes us away from our treatments and broadens our musical knowledge.
Iāll add a link to this thread
Link to thread The Friday Forum Jukebox Club! - #3504 by Spangleystar
Take care
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Thank you @Greycat for sharing your story and the incredible cartoon pictures! Welcome to this forum. I am very impressed with what you have created. I am pleased to hear that you are finding music helpful and that your creativity is also a form of therapy for you. I look forward to hearing more from you as and when you feel you want to share with us but no pressure. I hope you get good news from your doctor. Thinking of you. Willow x
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Hello @ecclesalan
Thank you for taking time to send your post into the forum
Iām sorry to learn about your diagnosis
I too am a Chronic lymphocytic leukaemia ('CLL') patient - having got my diagnosis in late April 2025, and i also retired juust over 3 years ago - so i feel you and I have similar circumstance
If I may, Iād like to encourage you to look for the numerous support groups you will find in your area, I live just outside York and I now go to a weekly coffee morning, have taken a rest bite break at the seaside and have just completed six session of Reiki, all via the same charity.
We all react to these things differently I feel, but as Chronic lymphocytic leukaemia ('CLL') patients are all on a similar journey to some degree and I find itās good to speak to others about it.
Please do feel free to keep in touch and let us know how you get on
Take good care of yourself
Kind regards
Mike
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Hi Mike, many thanks for your kind thoughts and advice.
Currently Iām asymptomatic, only seeing my consultant yearly, or if I need to.
Having spent 40 years doing martial arts my fitness levels are good and I regularly go to my local gym.
My partner and I take our dog out about 5 times a day, so even more exercise !!
I have a fairly pragmatic view on life, and despite my condition, Iām feeling very positive.
If things progress adversely I would probably enjoy a group connection, however Iām happy to plod along as is.
Their appears to be a lot of very caring people on this forum and I will post any personal updates.
Nice to hear from you, and my thoughts and prayers to you.
Regards
Alan
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@ecclesalan Hey Alan, welcome to the forum. I do think the people here vary considerably from those who are doing well and getting great care, to those who are very distressed and really need advice and support from others. I enjoy being a part of this forum to learn, to occasionally share my experiences, and to hopefully reassure folks that these conditions can be managed and many of us can make the best of it. Good for you for being so diligent with the martial arts and fitness. I have been away from that for several years (not related to illness, more to an overload with work and family matters when COVID hit) but I am feeling great about getting back into a regular workout routine over the past few weeks.
Best wishes,
Bill
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If you need any advice about guitar playing, get in touch. This goes for anyone on the forum. I built a lot of my own instruments and Iām always happy to help. (also Banjo, Ukulele, Bass and harmonica advice.) Just in case you donāt know it, hereās a chord you might like to try- 022400.
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Thanks @Greycat
Iām working through an online guitar course with a lovely lady who specialises in teaching people 50+.
Breaks everything down really well and Iām really learning a lot, particularly around rhythm.
Having fun and just enjoying the learning.
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Thats the main thing - to enjoy what you do. If you enjoy it youāll do it a lot, and if you do it a lot youāll get better. I taught myself in 1973 (I was a keyboard player before that as my mum taught it) and I play a couple of hours or more every day. Never sit in front of the telly without a guitar on your lap! what guitar do you play?
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Excellent you taught yourself guitar all those years ago @Greycat
My guitar is a Sigma.
Thanks for asking and happy playing
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They are decent guitars. I use 11ās on my acoustics, rather than the 12ās most come with. If youāve not changed the strings it might help on the fingers. Iāve noticed my fingers have been a bit sore again after my rituximab in June. check your action hight at the 14th fret. if its higher than 3mm you could lower it.
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Hello there @Greycat, welcome to the forum. Youāve found just the right place here and thank you for sharing, although that tiredness we can experience from blood cancer is no joke is it?!
Iāll share the great Blood Cancer UK information about Follicular lymphoma ('FL') here for your reference: Follicular lymphoma | Blood Cancer UK
If youād like to find others around the forum living with Follicular lymphoma ('FL') just use the search box at the top, and when reaching out to others add an @ before their username for them to receive a notification.
Hopefully seeing your haematologist went well, perhaps your music and art-making has been very helpful in keeping your mind healthily occupied and its own form of therapy too? I see dear @DuncanB has suggested you check out the The Friday Forum Jukebox Club! Itās active today, do feel free to share there.
If you have any medical queries or would like to speak to a specialised Blood Cancer UK nurses, give them a free call on 0808 2080 888.
Hope that helps a little @Greycat, do keep us posted about how you get on.
Hi Everyone,
I have just joined the forum, so wanted to say hi 
my husband was diagnosed with Primary Central Nervous System Burkitt Lymphoma in April, initially they thought it was Diffuse Large B-Cell until the sub-type came back from the labs. I know how rare this form of lymphoma is, so I am not sure if anyone else on here has been on this particular journey, or knows anyone else who is?
I am my husbandās fulltime carer now, he has just completed his four rounds of MATRix chemotherapy and will be having a stem cell transplant hopefully next week - beds allowing.
Hope you are all doing ok and I look forward to speaking with you over the coming months no doubt.
Bex
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Hello @Bex8 and welcome to the forum. You will find a really supportive group of people on the forum.
Iām sorry to read about your husbandās diagnosis. It will be a challenging time for you and your husband.
My diagnosis was with another blood cancer called Myelofibrosis.
I had several different chemotherapy regimes and eventually got to a point where a Stem Cell Transplant was an option thanks to an anonymous donor.
My Transplant was in April 2025 and Iām now 17 months post transplant and doing well at this point.
The Transplant was probably the most challenging thing that Iāve faced health wise.
That said I am so grateful for a second chance at life 
There are a few people on the forum who have gone through transplant recently.
@SCcoop who had a donor transplant.
@Spangleystar and @Byrnebaby who had transplants using their own cells.
Please feel free to ask any questions about our transplant journey and experience and we will do our best to share
Take care and best wishes to you and your husband 
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Hi @Bex8
I donāt know much about the many types of lymphoma (light chain myeloma is my diagnosis), but Iām sure if there are others on this forum with Burkitts then @Ceri_BloodCancerUK will know of them 
I really hope you are coping ok, especially as a full time carer for your husband, itās a lot for you both to deal with. We are here for you both 
Wishing him well through the stem cell transplant, happy to answer any questions you may have. The important thing is to take it moment by moment and go gently. Itās tough, but itās do-able. Iām very pleased to say Iām out of the other side now and on maintenance therapy.
Xx
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Hi Bex@8 as @DuncanB said. I too was diagnosed with Myelofibrosis last year. Like DuncanB I was fortunate that my brilliant medical team were able to find an anonymous donor and I had my donor transplant in June this year. Yes, it was, and at times still is, a challenging time and I still have a long road to travel before I know if all has been successful. But all indications are good and pointing in the right direction. My mantra was and is always positivity and with a good team behind you, you will get through this. Please feel free to ask any questions, if you think it will help.
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Hello there @Bex8, welcome to the forum at this difficult time. May I just say how caring of you it is to join us here, your husband is lucky to have you supporting him. I hope the forum can support you too.
You know, we recently had a couple of new forum members join who were diagnosed similarly to your husband despite the rarity, letās see if their lovely long thread can offer some ideas. If youād like to reach out to anyone on the forum just add an @ before their username and they should get a notification from you: Husband recently diagnosed with Burkitt's lymphoma
For reference here is the Blood Cancer UK information about Burkitt lymphoma: Burkitt lymphoma | Blood Cancer UK
Hereās the Lymphoma Action information about Burkitt lymphoma: Burkitt lymphoma | Lymphoma Action
And Macmillanās information: Burkitt lymphoma (Burkitt's lymphoma) | Macmillan Cancer Support
If youād like to look up specific topics/terms around the forum to locate other members with relevant experience then just use the search box at the top. I know there are many lovely members (and even Blood Cancer UK staff) who know what you and your husband are going through right now, so please know you have come to the right place.
If thereās any medical questions or other resources youād like to talk about with an expert, for example regarding a stem cell transplant, the lovely Blood Cancer UK nurses are at the end of a free call on 0808 2080 888.
Do please keep us posted about how you both get on @Bex8.
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Thank you so much to you and everyone else for the warm welcome, I very much appreciate it. I will have a look at the information you have kindly shared.
Most of what I have found online so far is the systemic and sporadic form of Burkitt Lymphoma, whereas my husbandās is only in his brain, which is apparently exceptionally rare. Due to the lack of information I have found, I have started writing about our journey on Substack, just in case anyone in the future finds themselves in the same position and can possibly learn something from what we have found so far, or feel less alone in it all. Although I am quite behind in sharing it, full-time care and all the appointments doesnāt leave a lot of free time, or a lot of spare energy for anything else.
At the moment we are both rather anxious about next weeks stem cell transplant, they are using my husbands own cells, which were successfully harvested after his third round of chemotherapy, but the Carmustine and Thiotepa (TT-BCNU) regimen sounds very aggressive and I am obviously very worried about that and the subsequent risk of infection for such a prolonged period of time.
Anyway, thank you and everyone again for the warm, supportive welcome and information, it is a real comfort to know others are out there able to share their own stories, answer questions and offer support.
Bex
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Hi @Bex8
Totally normal to be anxious about the Stem Cell Transplant.
What I will say that the clinical and non clinical teams are fantastic at the hospitals which do these so Iām sure that you will be in very good hands.
I found just taking things day by day really helped through Transplant.
Do keep us updated on how things go when youāre in a position to do so and donāt feel any pressure to do so.
You and your husband are the most important things to focus on right now
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