I started my first course of RCHOP on 29 May and had 4 treatments before they stopped due to me feeling really poorly. In and out of the ward for sometimes weeks and other times days at a time it seemed to be endless in August when things were not going well. The first 3 rounds of chemo were not too difficult, treatment day, a few days of nausea and then a gradual increase in feeling better and better up to the next treatment day. Then after round 4 it all went wrong. Really bad reaction and in the ward for weeks again. The team then stopped chemo at 4 due to me condition which was disappointing as they had told me a scan after 3 rounds showed a really good reaction to treatment.
Anyway, a few weeks later and the lymphoma has jumped into my T10 spine so off I went for a biopsy which I have to say was all done really quickly and well even if it did involve ambulance moves around the country to somewhere that could do the biopsy. Then then uncertainty kicked in and what next. I have to be honest and say the few weeks around the biopsy were the hardest simply not knowing the future or even being given any hint by the doctors when asked.
Now 3 weeks after the biopsy and I’ve had radiotherapy on the T10 and a really positive meeting with a new doctor who told us exactly how it is which has been a huge relief if not what we wanted to hear. At last we feel like we can move on and get back to pushing the original team for answers on what course of action for the next round of chemo on the original lymphoma.
During this whole process the one thing I have learnt is that some medical staff are open and honest and others just don’t want to be open with patients. Hugely disappointing and frustrating when you ask repeated question and just get smiles and nods and nothing else. But we are where we are and I’m back with the smilers and nodded again today.
I suppose we have to accept that they all want the best for us but some have a strange way of showing it. Ward staff are absolute diamonds who put up with all sorts of moods and are the true hero’s in our hospitals as are our family and friends who support.
Always here to to off load on if you need to grump at me for my grump.
Hi Tall bloke sorry to hear about your journey and the bumps in your Lymphoma journey.
I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from yours I do appreciate the challenges of this journey rather well.
Do come and join and put up a post in our dedicated Non-Hodgkin lymphoma support group as this is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support from others who have walked the Lymphoma journey.
To connect in with the group click on this link> Non-Hodgkin lymphoma then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
