Tuesday 4th March
Pot count is up to 28. Slept quite good apart from waking self-up for the toilet, agh. Slept with the door shut and window open, which although felt cold when I came out of the steamy wetroom (always really hot in there!) was just right. Managed to read a fair bit of the Swedish book. M and D arrived just when I was going to start on the radio (I think). Around 10.
Dr A turned up asking if anyone had spoken to us – he said that there had not been any results up yet but that the oncology team were on their way round – luckily Sister1 (?) wasn’t here because there were soo many people! There was the SHO (?) who was to do a bone marrow, the SHO Liam?, a student doc (or 2?) and Mai, one of the oncology nurses who knows someone who M works with (and through her also knows H who M works with?).
M n D had to go as M had to go to college but Sis1 would be turning up after dropping Sis2 at the station.
Sent B and R message before rents left. Great responses:
Me “Unfortunately xray not good, I am in Southampton and have possible lymphoma and am awaiting diagnosis and treatment. Feeling bit better but last few days haven’t been great – come visit!!! Xx”
B (exact) “Oh geee, I’ll have to look that one up, sorry to hear that, I am glad that you are being seen too , well have another pancake day when you are better if not will bring you some X”
B (exact) “Holy shit, I hope it’s not that!!!!!”
R (exact) “bloody ell wasn’t expecting that thought it was a cheeky cough” “how long u been in hospital for?”
Me “Since thurs, was in Hospital then ambulance transfer – might have to txt me instead – no free WiFi! 😀 they need to get on it.”
B (exact) “Fuck man, when will the results come back ?”
R (exact) “When do you find out diagnosis??”
Me (exact) “next few days, treatment will most likely involve chemo”
B (exact) “I don’t know what to say .Just I hope that it’s not the case. Sorry to hear it X”
Thing is – now they weren’t really listening, I have to tell them again!
Had message from SElf, Rosie, Iceman, Shb, J, Len, Giulz, Baz, Mir, Carl p, Chris, Abee, Fi, Hugo, Loz, Bec. I had asked J to email/facebook Loz, Bec, baz, Jz and H – funnily enough the olive branch hasn’t worked yet…
Sis1 got here just after I had finished watching the Pines? Was told when the other docs left that Prof would be back in the afternoon (I think?) well he arrived when Sis1 was here and then we debated whether to wait and see if he could come back later when M and D were here or just kind of get on.
He said (I think) that they were 90% sure it was Hodgkins Lymphoma but they were still waiting on the histology and path results. Most likely (proceeding on that) that it would be 6 months chemotherapy. As outpatient – one cycle every 2 weeks? Dunno, something like that. They needed to do a bone marrow biopsy to determine staging and treatment. Mai nurse would come back with some info and talk to M & D around 4 when they got back. They also mentioned a trial to use a specific targeting treatment. Most likely staying in this room at least until the weekend and will have first lot of chemo. Still full on the oncology ward and less likely to have a side room!
Food turned up, just as well – soo hungry. Stuffed down the mac n cheese.
Afternoon delight was the biopsy with lots of on lookers! Emma (thoracic nurse hadn’t seen one so sat in too!) had about 5 others including Sis1 in here when they did it? Had to lie on LH side, needed pillow under tummy because it is still hard/bloaty sore :/. Local anaesthetic, gas and air and then some morphine afterward. Had to take 3 samples as he first two slides weren’t good enough (I think!) First bit of air felt like you’ve had 3 or 4 really quick drinks or shots or something. Then it just felt like they were wiggling inside the top of my leg. Ek. Sis1 took lots of pics to send to Sis2. – HAHA sure she appreciated them with her lunch…The biopsy sample is like honeycomb they slice?
Sis1 went and got some Ribena and some SUGAR – mmm choc eclairs.
M and D came back around hour after and spoke to Mai – she had already gone over some bits with Amelia and I, I’d had morphine by this time (I think). Next step is to have a PET scan where they put slightly radioactive glucose molecules in which shows up where the lumps are on the scan. There were originally some lumps in my lung. This is going to be done down in pomp but I had totally forgotten! I am blaming the morphene…
They stayed for a bit and then M took Sis1 home. D stayed until I had food (around 8) Stuffed that in too! Sausage n mash with gravy n (supposed to by syrup pudding!) but was apple n ruuubarb mm. It was funny – there were two trainee docs who came in – they wondered if they could do a practice examination – I thought they had told D that one was practising and the other knew what my notes said but turns out neither did! We threw them off guard with that 😀