Off on the train to Treliske to meet Dr Kruger in the Haematology/Oncology department. It’s been a long 13 day wait for the biopsy results.
There’s been a muddle with times of the appointment but I’m now expected at 12 midday.
I feel ok. I’ve got my list of symptoms and hope we can discuss these alongside the biopsy result. I’ve no idea what to expect today. I’m prepared for the worst (I think!) but the sense of unreality about it all, the limbo land of it makes it hard to really know.
I’m going up on the train and Alison will meet me after 1pm.
I slept ok last night but in shifts falling deep asleep at 9 on the sofa after eating and then going to bed at 11.30pm waking at 3.30am getting up taking cocodamols and eating rice flake porridge staying awake til almost 5. Then sleeping more til 7.30.
Text from brother Dan wishing me well sent at 5am! He must be jet lagged from Tokyo or wherever he’s come home from.
Dad called to send love too…
A sweet text from Richard BB. And Billy called yesterday. And a text from Jane L.
The Haematology Department waiting room is large and spacious and light. That’s good if I’m going to spend a lot of time here. A nurse called Caz comes to get me and take me into see Dr Kruger. I like him. I explain that I’d like to record our meeting and that’s fine. He’s brisk and to the point and enthusiastic, and older than me which is good!
However, the neck biopsy is no good. It confirms that it is Lymphoma but doesn’t pinpoint the strain. Kruger says he is 90% sure it’s Hodgkins Lymphoma with what the limited biopsy and the CT scan have shown and considering the symptoms list I’ve given him, including the unusual alcohol triggered back pain symptom.
Kruger explains that Hodgkins is known as a curable cancer – many people respond well to treatment and are not revisited by the cancer. He also introduces the possibility of putting me on a clinical trial for a new drug. I don’t get the name but he draws an interesting diagram which shows how the new drug targets a particular protein called CD30 on the surface of the lymphoma cells and zaps it. Its a cell-specific drug unlike the other chemo cocktail drugs which attack all fast growing cells in the body including the cancer cells. I follow the explanation keenly and obviously ask to go on the trial. I’m thinking – great, send in the SAS and reduce the carpet-bombing of my body…
Dr. K gives me a physical check over too.
Caz comes back in and is introduced – she is my MacMillan nurse and my main point of contact in the department. The three of us have a discussion for a while, at its confirmed that a PET/CT scan will be booked, and that a further biopsy operation is required to identify the strain of Hodgkins before treatment can begin. There are two options for this – either another attempt at a neck biopsy, or because the CT scan shows enlarged nodes in my chest a chest biopsy could be done at Derriford in Plymouth. The latter sounds preferable to me given the failure to operate on my neck last time. I don’t want any more delays.
Then Caz takes me off and runs through a few more things about how they will work it. It all seems good and pretty clear. I’m happy to be here at last.
Coming back outside, it feels a bit different. Along with the fresh air the significance of what I’ve been told hits me and I sag a bit. I call Alison who is waiting in the van with Milli nearby, and go to meet her. When I see her I can’t hold it back for long, and she hugs me as I weep against the side of the van. Dammit dammit dammit what does this mean now?
Dr Kruger confirmed that average life expectancy for Hodgkins is 2 years without treatment and I’m a good year into it exhibiting Stage 4 spread and symptoms.
Ali and I go to Marazion for a walk on the beach. It not easy to talk in the van so we’ve just been in our own head spaces on the drive back. Milli needs to run and I need some sea breeze and air and sky. We talk it over. I’d worked out I had Hodgkins already, we’d guessed at it on Day 1 and the reading I’d done since had convinced me because of the symptoms. We decide to get a drink in the newly refurbished Godolphin Arms overlooking St Michaels Mount. I opt for a smoothie but could do with a proper drink, my aching back negotiates otherwise though. I feel and look pretty thin on the ground…