DLBCL - in a very dark place due to NHS wait times

Hi Bumblebee and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your journey to date.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)

Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are over 60 types and sub-types of Lymphoma so it is important to get your type correct….. this unfortunately can take time to get all the jigsaw pieces together.

If it is DLBCL…… it is indeed a fast growing High-grade non-Hodgkin lymphoma……. Much the same as my second type of T-Cell NHL……. But Lymohomas like these respond to treatment very well with great results.

The waiting is challenging…… but unfortunately very common when it comes to Lymphomas….

This is the time line when my second NHL started showing its face…..

25/10/13 Was at a follow up appointment with Oncology following Radiotherapy at the start of Oct…… and the CNS flagged a lump on my neck as a cause for concern.

21/11/13 ENT appointment 

3/12/13 CT Scan

4/12/13 Biopsy under general anaesthetic 

17/12/13 First meeting with Heamatology at 9am and started treatment later on that day.

By the time I had my first chemotherapy it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film.

My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale.

I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.

27/12/13 Started my first cycle of R-EPOCH…. This specific regime required me to be in hospital for 5 nights/6 days in my 2 IVs 24/7 for over 120hrs.

My story is rather complicated (See my story) due to me having 2 rare toes if T-Cell at the same time……….. but I am over 9 years 8 months out from my last treatment, I turn 70 this year and I doing great.

You do need to keep pushing the system to ensure that you have not fallen through any cracks in the NHS…… my GP was great and on 16/12/13 at prearranged appointment I had with him he phoned Heamatology and demanded to talk with the Senior Haematologist…….. it turned out that an appointment had been set for me to be at the clinic on 15//12/13 but I had not received the letter……. So the appointment was set up for 9am the following morning.

Always around to chat.

Thank you for taking the time to reply Mike. It’s reassuring to know that things were so advanced but you are doing so well. It’s hard to maintain hope right now. I feel so so scared. 

You mentioned your treatment started on the same day? Is that typical? I’m a bit worried I’ll be left without plans in place for my child. 

Oh there is lots of hope when it comes to Lymphoma…….. if we were talking about many other cancer types…… the story would be rather different.

I would say it’s not normal to start treatment that quickly but I was in a bad way…… and the normal first line treatments for DLBCL are normally done as a day patient…… with the possibility of an overnight stay on the first cycle just to monitor how you are doing.

Are you in the UK?

Hi Bumblebee,

Thanks for sharing your story. I also experienced alot of waiting already here in Ireland. Here's my timeline to date:
13-12-2024 I found a lump in my groin area

01-01-2025 I had appt. with GP who referred me to Wexford hospital for an Ultrasound.

24-02-2025 I had a consult scheduled at Wexford hospital, was examined, and they referred me for Ultrasound.

31-03-2025 I had an ultrasound. Was called later and they scheduled a CT Scan. They then biopsied the lump and sent to Waterford Hospital.

30-04-2025 had the CT Scan. 

06-06-2025 I had the bone marrow biopsy attempt and the consult.

16-06-2025 I had the PET Scan

26-06-2025 I had a follow up consult where I learned more about my treatment, the staging of my lymphoma, and signed the consent forms for treatment.

14-07-2025 will be my heart scan date. (I had to call Wexford hospital TWICE in the past two days asking after what date my scan is scheduled for because I hadn't received a letter yet. They said they sent it but they likely messed up my mailing address.) 

25-07-2025 will be my first R-CHOP treatment.

I am not good at waiting but I do a few things. I meditate and practice mindfulness. I stay active and have varied tasks in my day. I check in with friends and family, and support groups. I stretch every day also, and I have now taken up walking on days that I don't have work (which will be every day once I start treatment- I won't be able to do my job at all). I call and email when I need an answer and I feel it has been too long since a referral had been made or when I sent a query that hadn't been answered. 

I hope this helps. I am fortunate that my lymphoma is localized to one area and I have no other symptoms, though I still have to go through 3-4 cycles of R-CHOP and then radiation in the area where the cancer is. 

Hang in there, and be good to yourself. Self care and having support have helped me so far. 

WHOA! JUST STOP RIGHT THERE BUMBLEBEE! NOW!!! Take a big deep breath and breath out!

OK, let's begin. I've been there BTW. Stage FOUR, 3-5 months to live (without treatment) blah blah blah! LISTEN TO ME (I'm ex UK Special Forces by the way..so LISTEN UP...OR I will hurt you!!!)

It's NO BIG DEAL! WHAT? I say again...STOP Flapping like a budgie on speed ..its NO BIG DEAL!

Here's what's gonna happen. You will get Chemo, it is incredibly effective. AND works better IF you calm the f*** down! SERIOUSLY. you immune system will HELP YOU...if you CALM the F*** down!!

Highlander knows me well btw. Hey buddy Hi!. He is brilliant btw, and absolutely top bloke!

So here's the deal, calm down. Chill out and listen to us. We will hold you hand and guide you. I will check in everyday. And watch your back OK?

I said OK??? You got that!!! You are gonna be fine! I say again YOU ARE GONNA BE JUST FINE!

seen you in 24hrs!

Ohhh btw, my treatment was delayed ...due to a f*** up by 6-8 weeks! No big deal! And I had tumours growing that I could see getting bigger every week!

Trooper56

I've already responded BUMBLEBEE...but I wanna add some psychology. I note you are horrified. Terrified and in a dark place. I've studied psychology and hypnosis for over fourty years and can tell you this. What you FOCUS on...YOU WILL GET! 

What do I mean? Well the conscious mind is not very complex, it says I'm terrified! The subconscious mind (IS INCREDIBLY POWERFUL AND CONTROLS EVERYTHING!) HAS to do what the conscious mind asks.

Ohhh you are terrified? Subconscious OK I will make you experience that!! And hey Preston you are TERRIFIED. IF Instead of being terrified...you were let's say fascinated...The subconscious would go ahhh OK let's make THAT happen.

So RULE 1, STOP USING NEGATIVE  WORDS TO describe how you feel. JUST CHANGE the words you use...it IS THAT F**** SIMPLE!! (It's called transformational vocabulary btw)

WHEN I has 3-5 months to live? I was FASCINATED NOT FRIGHTENED! So the most incredibly powerful part of my brain made that a reality in my mind!

BUT here's the best part. Your immune system cannot work or help you if you have negative thoughts...its paralysed!  BUT BE positive and Your incredible immune system starts to fight your corner! Without your immune system you are screwed..SO GET IT ONSIDE TODAY...RIGHT NOW!!

I didn't just beat cancer...I SMASHED it out the park! You can too...Its a temporary illness!! See what I did there??? Tell me you noticed!! Ie its a temporary illness AND YOU are gonna be fine!

 KotC_Gorey I am so sorry you’ve had to endure so much waiting. I always thought if you got cancer things happened really quickly and I’m shocked to read people’s experiences. It takes a lot of strength to live with that uncertainty for so long. It sounds like you’ve found ways to keep yourself sane and I think that’s what I really need to work on now. 

 Trooper56 Your post made me laugh and there hasn’t been much of that going on these past few weeks so thank you! 

I was really worried just like you, it took from Feb to 31st July 2023 to get my diagnosis' I was Terrified and thought the worse ( wish I’d had trooper56 around to knock some sense into me, but I was that overwhelmed at the time I prop would have just cried. Anyway he’s right it was a temp illness and I’m still here with no sign of lymphoma I did 6 rounds of Pola r Chp and 4 weeks radiotherapy, my big mistake was not maintaining my fitness, So my advise to you would be keep moving, as that’s my struggle now starting to get fit again.

That's made MY day BUMBLEBEE!! Do take note of the points I mentioned! It will make a difference. Always here help and advise if needed. I had six rounds of R-CHOP rat poison, sorry I meant chemo!! Every three weeks. Plus two week long methotrexate sessions in hospital. 

I was in great shape physically and aged 62 at the time. I walked my two dogs EVERY day and whilst walking did 3x 20 pressups and 3x 20 squats. it did get a bit harder the more chemo went on but I did this regardless. 

Please keep us updated regarding your temporary illness!