I loved having good health and limiting my contact with the medical profession. An occasional cough, cold or flu was as serious as it got and I liked it that way. No dratted needles or doctors and I didn’t even know what a hematologist was. But then the Hodge arrived and changed everything.
When I was first diagnosed navigating the NHS was simple. The months of AVBD* and monitoring at one hospital were routine. Then HL2 arrived and it got complicated: ESHAP* and BEAM* chemotherapies and an autologous stem cell transplant* involved four different hospitals. It became chaotic – especially when two hospitals booked ‘must do’ appointments on the same day. The system can be disjointed and difficult to navigate but more so when you’re in the middle of a chemo crash.
After HL2 the next stop on my tour should have been a routine screening. It got out of control! Suspicious lumps and multiple biopsies filled the months of October and November. December’s ‘false alarm’ brought a sigh of relief and a couple of hospital-free months.
After five hospitals in twelve months, I was tired of the NHS. But while I was making plans for a quiet life my malfunctioning immune system was making plans for HL3. PET results are in and it’s not the best of news. On the up side, the hardly noticeable lump didn’t glow. On the downside small areas in my chest and neck did.
Dr C choked as she broke the news. She explained the very small chance of a false positive causing the cells to light up. However, the likely culprit is The Hodge and she outlined the Hodge murder plan – complete with diagrams of exploding cancer cells and a process map for an allogeneic stem cell transplant* – last chance for a cure. She wants me to be hopeful but we’re getting short of plans now.
So a new NHS tour begins. The next stop will be a biopsy at a new (to me) hospital to confirm what she expects. The venue, date and time TBC.
*If you want more information about Hodgkin lymphoma and its treatment please visit The Hodge information page.