Pencilled in, 6 weeks tomorrow, Day -7, stem cell transplant conditioning will start. Meaning Sept 21st, Day 0, I should get my stem cells back. #aHSCT #Lymphoma #CurativeIntent #NeverGiveUp
S C O T T
@msandlymphomasux.bsky.social
Tattooed | RRMS dx2006 | Burkitts Lymphoma dx2026 | Never give up
The DWP are asking for people to contribute evidence for a forthcoming review of Carers Allowance and how it operates. Admittedly this is niche, but please spread the word so it reaches the right people. www.gov.uk/government/c...
Carer's Allowance: call for evidence
This call for evidence is being administered by the Department for Work and Pensions (DWP) to gather information and views to build on the Department’s existing evidence. What we hear will help shape ...
gov.uk
For those dealing with lymphoma. I’ve created this custom thread for us. Pin 📌 it to your home to see what the #lymphoma community is talking about. Use #lymphoma to contribute. Created with surf.social. surf.social/feed/surf%2F...
Lymphoma by Scott on Surf
Surf - To draw folk together to share, where comfortable, your stories about your progress through lymphoma.
surf.social
New PICC line in for Cycle 4 😀 No bed available in hospital for Cycle 4 😩 Some you win, some you lose. #RollWithThePunches #Chemo #Burkitts #Lymphoma #PCNSBL
Bingo! Got me in a nutshell, just like that. #PCNSL www.sciencedirect.com/science/arti...
Movement disorders due to primary central nervous system lymphoma: An illustrative case and systematic literature review
Movement disorders (MD) can result from various mechanisms: central nervous system infection (20%), trauma (15%), metabolic dysregulation (7%), vascul…
sciencedirect.com
@achronicvoice.com - my wife’s Substack through the lens of being my full time carer. Catering for challenges we both face through my progress with #MS and now added to that #BurkittsLymphoma. Hoping it might help 1 of your audience with their own challenges 🙏🏼 open.substack.com/pub/otherrol...
The Other Role | Rebecca Garland | Substack
Personal reflections on coaching, caring and being human. Written by a coach who is also a carer. Click to read The Other Role, by Rebecca Garland, a Substack publication. Launched 2 months ago.
open.substack.com
Multiple sclerosis: First drug to help patients walk now on NHS in England
Multiple sclerosis: First drug to help patients walk now on NHS in England
Fampridine boosts nerve signals to make it easier to walk, with up to 5,000 eligible.
bbc.co.uk
Just a reminder ❤️ Whatever you're feeling, give yourself permission to feel it. Be gentle with yourself. You're navigating something that most people never have to face.
@bloodcanceruk.bsky.social @lymphomaaction.bsky.social @nnhla-natcan.bsky.social I was diagnosed with Burkitts Lymphoma 2mnths ago. MATRix regimen is aggressive. Done 3 cycles & stem cell collection on Monday. It’d be great to make contact with others. I have a MS too, just to add complexity 🤦🏻♂️
I now have no lines in my arms or neck. Misaligned PICC line out this afternoon, new shiny one one back in in 11 days. The liberation is incredible! 🤣😁😂👊🏼
The next Substack write up by my wife of the chemotherapy battle we are both experiencing from differing perspectives: substack.com/@garlandcoac...
Rebecca Garland (@garlandcoaching)
Cycle one of chemotherapy. Six treatment days, three blood clots, a liver injury and a lot of googling at midnight. The fourth piece in The Other Role is out now.
substack.com
Cycle 3 done. CVC out. Home. 1 cycle to go with stem cell collection between and then Cycle 4 & Transplant. I can walk again too, without my stick for short distances. This is news! 👊🏼😁👍🏼
PICC has become unusable so have had a CVC put in. A Central Venous Catheter makes me look like something out of a horror film, I’ve tried convincing medical staff it’s new neck decoration, but they’re not buying it! 😂🤣 my.clevelandclinic.org/health/treat...
What Is a Central Venous Catheter?
A central venous catheter is a long, flexible tube that sends medicines, blood transfusions and other treatments directly into your bloodstream. Learn about how it can help you.
my.clevelandclinic.org
Chronic illness: Where sleeping is a skill and waking up is the challenge. #TiredAllTheTime
Cycle 3 starts today. #Chemo Here we go again #methotrexate, #cytarabine let’s get this done by the weekend if possible please!
Irradiated Blood Only from now on please. Health warning bracelet upon thy! 💉 🩸
A 18:30 head MRI with contrast today because someone in the NHS admin chain fucked up my appointment I was invited to yesterday morning. Wonderful. 😭
Cycle 3 delayed because I’m anaemic. Profoundly so 😩 More blood transfusions tomorrow! FFS! 🤬
July is a complete write off 😩 Week 1 - chemo Week 2 - rest Week 3 - Stem Cell collection Week 4 - chemo I’m going to be in pieces. Good luck everyone. This is going to be brutal 🤬😭
Authored by my wife, this is tough for both of us. substack.com/@garlandcoac...
Rebecca Garland (@garlandcoaching)
A phone call we'd been waiting six days for, knowing it would tell us exactly what we were facing. The third piece in The Other Role is out now, the wait between the biopsy and the diagnosis, and eve...
substack.com
Intrathecal Chemo this afternoon 😲Shiver me timbers, this is a big one and will be repeated after every cycle now! No coughing, sneezing or movement whilst that needle is in the spinal canal! 🤦🏻♂️👊🏼🙏🏼 #PrayForScott See you on the other side hopefully!
Official Cycle 2 done 👍🏼 Extras of blood transfusion before heading home today. Then back in tomorrow for Intrathecal Chemo, direct to the spinal cord and CSF contained within. Avoiding the blood brain barrier completely. Big things. Brutal things. Needed things.
Back in. Cycle 2. Dr has suggested taking #Rituximab dose of the front and possibly #Thiotepa at usual stage 4 to promote stem cell mobilisation for transplant after! Could be a shorter cycle, just hoping my liver doesn't freak out so much this time! 🤦🏻♂️ Good luck everybody 👊🏼 #Chemo #NeverGiveUp
Hair is falling out already. Beard has now gone for the first time in decades 😲🤦🏻♂️ I look 25 years younger! Thanks #Chemo
I am rare! - AB+ blood type - 2% of the World has it - I'm one of them 👍🏼 - only 8 people where I am are treated with PCNSL a year - yep, I'm one of them 👍🏼 - Only 2 people a year, with Burkitt lymphoma sub-type, where I am, are treated a year - yep, that's me too 👍🏼 - MS too - yep, that's me 👍🏼 Fuck!
MRI conclusion: Marked treatment response following cycle 1 MATRIX chemotherapy with near-complete resolution of the previously demonstrated CNS Lymphoma lesions "Couldn't have asked for better" is the commentary from the haematology consultant this morning. Absolute ripper mate!! 👍🏼😁 🎉🍾
Neutropenic and septic. Platelets at 4 as well, Bilirubin at 50 and ALT at 600, which is better news. switching regimen to R-ICE to avoid the risk of needing a liver transplant. In the back of an ambulance yesterday with a 40 degree temp. Infection due to significantly reduced Neutrophils. #FFS. 🤦🏻♂️
ALT down 400+ to 1396, platelets at 35 and bilirubin to a much more, important lower level. Pee doesn't look radioactive anymore, which is great news 👍🏼😂 We're on the right track folks, let's keep this going #NeverGiveUp
#ALT level over 2500. Acute liver damage due to toxic #chemotherapy treatment. No one warned me of this! 🤬😩