Awake

I got my diagnosis just 12 hours ago and I'm now wide awake feeling scared.

I don't know what stage I am yet as I'm awaiting another CT and my first appointment with haematology but this may be another two week wait.

And this is the thing that's frustrating me the most, is the wait.

Everything is two weeks! Saw my GP via 111 the day my swelling on my neck appeared yet I'm 14 weeks later and only now have a diagnosis and waiting again. I've been sent from pillar to post and fast tracked at every step, but each step is another two week wait.

I've always listened to my body and understood what I need but to get the NHS to listen has been hard. Please reassure me that things will speed up soon. I know my tumour has trippled in size within 4 weeks and can feel it has grown again. The pain is getting worse.

I'm a scared mum of two and full time carer and educator for our eldest. I was in high spirits but now feel low

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I don't have DLBCL but was diagnosed way back in 1999 with a rare, incurable type of Skin NHL Stage 4a so although my Lymphoma ‘type’ is different I understand the challenges of this journey well.

    Getting a Lymphoma diagnosis, indeed any cancer diagnosis is such a stressful and challenging time. but there is lots of hope.

    Lymphoma is the fifth most common type of cancer in the UK (after Breast, Lung, Colon and Prostate cancers) but the good news is that Lymphoma is general very treatable. DLBCL is called a type of high-grade lymphoma so does grow quickly but unlike my type of low grade lymphoma the aim of the treatments used for your DLBCL is to cure you...... my type is incurable.

    Your journey to get a diagnosis is unfortunately very familiar as Lymphoma is actually very difficult to diagnose at times with my medical professionals unable to clearly see the signs.

    There are a number of jigsaw pieces that have to be put in place to get your clear diagnosis and staging then with this your treatment plan can be put in place.  

    My GP was great and looked at all the areas he could go - this took 9 months then my Consultant took a further year, 6 biopsies and 2 CT s before I got a clear diagnosis for my rare type. I live in Scotland and the referral time from GP to start treatment is 62 days...... for years (not just covid times) these timings have often not been meet.

    Staging is an important part of the jigsaw but it's very important for you to understand that unlike Breast, Lung, Colon and Prostate cancers where a high stage number is a poor prognosis, in Lymphoma it's completely different with the Stage level used to identify where your Lymphoma is presenting, what the best treatment is and for how long........ in late 2013 I was stage 4a........that was over was over 8 years ago and I am still around doing great.

    I won't hid the fact that the treatments used for High Grade Lymphoma is normally strong but is very effective in its job. You may find this link helpful as you prepare for future appointments Questions to ask your medical team about Lymphoma.

    By the time I went for 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 starting to be restricted. I had an initial 15min blast of chemo 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.

    There will be lots going round your head but the group is here to walk this with you and answer questions as best as we can ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi there

    I was diagnosed with DLBCL at the end of 2019.  I have been in remission for 2 years at the end of this month.

    Blood cancers are not the same as solid cancers, which means that stage isn't as important.  Because your treatment will be systemic, it will reach everywhere in your body.

    My haematologist started me on steroids prior to me starting R-CHOP (chemo) and there was a significant reduction in both swelling and pain within the first 48 hours.

    I know how incredibly painful the neck swelling can get and would urge you to push your GP for adequate pain relief.  There is no excuse for it not being prescribed before you see the specialists.

    You will probably need a couple more tests before you actually start treatment, and it's possible they will be done very close together.

    The "hurry up and wait" aspect of being a cancer patient sucks, as does everything happening on someone else's timetable.  Feel free to vent here whenever you're feeling frustrated by and angry about it all.

  • Hi there

    My experience was pretty similar, got a phone call on the 4th May 2021 to say I had cancer.  Couldn’t tell me what stage, etc. I then waited and waited…this is by far the worst part of the journey. I started my first R-chop on the 28th June 2021. I was stage 4, however, it doesn’t really mean anything with dlbcl.  The swellings in my neck and groin were large by the time my first chemo session arrived and the one in my groin was making it painful to walk, however pretty soon after the first cycle the nodes had reduced dramatically.  Got the all clear in Dec 2021.

    Take care,

    Sarah x

  • Thank you for replying, that gives me hope. May I ask how you felt during your treatment? 

  • I felt fine for the first two treatments.  I developed hand and foot syndrome following the third dose of intrathecal methotrexate.

    From my third dose of R-CHOP onwards, it got tougher, with the side effects only abating a few days before the next cycle.

    I highly recommend booking in for a Look Good, Feel Better workshop (either virtual or in person) as a pick me up.

    lookgoodfeelbetter.org/