Awake at 6am it’s overcast but silvery through the skylights. I went to bed at 9.30 last night after falling asleep on the sofa after supper. I’d taken 2 cocodamols for my back and had a hot bath as I felt pretty sore. Simon had come to see me very sad and tense but couldn’t express his feelings til he left when he hugged me at the door and we spoke a few broken words with tears in our eyes.
Last night I woke at 3.40am and got up to drink water and cut into a large pineapple which I had with goats yoghurt and seeds delicious! Can still taste it now. Reminds me of the Canaries sailing with Joff last October and all the luscious fruit in La Gomera. I then read some more about NHL but quite calmly this time. I’m going to list my thoughts on this later as I wait in Treliske for them to take a swollen lymph node from my neck.
But first I’m going to call The Dog & Rabbit where Alison will already be cooking with the radio on…
On the train to Truro and Treliske now 10:20 I’m running early because I want to look at iPads at PCWorld just next to the hospital. If I’m going to be unwell and spending time resting in bed then one of these might be good. I can write these notes and tinker with the Seafront Forum website and keep in touch with the world.
I called David this morning to tell him what’s going down. Easier with him because of his early onset Parkinson’s and he knows the score. He’s also an Apple man so good to get the lowdown on iPads from him… I find I’m pretty calm today and able to talk about symptoms and where those and the NHS seem to be taking me. It’ll be good to get the results of this biopsy even though I expect the worst, just so I don’t have to speculate. It’s funny, everyone hopes for the best but I feel I know whats coming at me.
Ok I’m in the Newlyn Wing ENT lovely people here and Dr Anyanwy from my last visit being big and gentle and another Dr Natelie who is nice and careful. The nurse takes my blood pressure (low as always) and we inventory my possessions and get a wristband. Try to rate my back pain on a scale 1-10. I opt for 4/3 when I think back to the excruciating pain at night a while back, the two doctors both feel my neck but can’t locate the lymph glands. They go and check the CT scan on a computer but come back and try again – no result! They decide to order a radio scan for about an hours time so that can pinpoint the gland (stick a needle in it for them!). We discuss there’s no point in cutting me open if they can’t pinpoint the gland. It’s deep buried as Dr Anyanwy discussed before.
Dr A goes off and Dr Natalie asks if health otherwise is well. I tell her about my increasing awareness of Lymphoma and it’s symptoms and mention my back pain and that I’m getting nervous about going away with no result. She reassures me they won’t leave me not knowing… There’s nothing simple about this.
Billy calls my iPhone on silent. Asking about going to Sean’s Diner for lunch I expect. I could eat a fried breakfast goddammit!
I spend the afternoon waiting reading dozing in a comfy green chair. My back’s sore and my stomach cramping with no food. Waiting for the radiologist whose not expecting me on his already busy list. Eventually I get called and walked round to the CT Radiology waiting room by a male nurse, hand over my notes and wait again, this time feeling the novelty of being in gown and pressure stockings sitting amongst ‘civilians’.
A long wait. Separated from my bag and book I leaf through some terrible fashion magazines. What total drivel! Who reads this crap?
The radiologist is great. It’s an intense darkened room and he’s particularly bright and animated. The two Drs come in to see what can be seen of my lymph nodes. I get a glimpse of the screen all grey swirling patches of dark and light I think I see what the nodes are, dark spots but my view angle is obscure. They talk technical and pinpoint the best looking node which is 15mm diameter near my collar bone I think. Photos are taken by the machine to guide the surgeons. The radiograph sensor feels weird as it’s pressed against my throat with a cool jelly smudged around to make a good contact with my skin I guess and to stop it rubbing me…
Back to Newlyn Ward. Wait. A new Dr in surgeon blues comes to talk to me. I didn’t get his name but he’s in his 60s maybe. He explains there are complications with taking out a complete node – they are too deep – actually only 1cm deep but what they mean is deeply surrounded by other tissue and arteries veins whatever so getting to them is a bigger operation than they were expecting. They are considering taking a needle biopsy guided live by the radiograph. So eventually this is what happens. I get seen at 6pm once the radiographers list is complete. Happily once this decision is made I’m offered tea and toast. I’m ravening and it’s a great relief to eat something. But I must remember to take my own food next time…
Alison kindly picks me up and had a Cafe Dog & Rabbit ham sandwich for me! Home feels good once the wood burners lit and some soup is on…