It has actually been a year and 17 days since the last cheem. I had to look it up. Glad no one else remembered these things ‘cos wooha, awkward. So this time it’s different. Easier but harder too. Last time I facebooked everyone and lost people that way. This time I’m going for minimal. So day after biopsy – Sis1 came home last night, Sis2 went to Reading fest for the day today and we went on a walk with Date and L and the pupster. Hardly any blackberries to be had on the downs which had been the whole point. Before we left, had rang nurse specialist to see where d’at with Edinburgh and rang her back. Treatment is R-ICE (vanilla ice soundtrack) and Edinburgh is set for the 15th. At least this time, it’s not gunna effect the fingers with neuropathy! Watched a long way down – ‘fun’ film about suicide! Cheery for the relapsed and anorexic (Sis1)
Thursday 6th March
Keep waking up REALLY HOT. Very quiet (bad) like removed from the main desk – don’t get to see many people go past. It’s also really hot, so fan on all the time, window tiny and no little fishy picture. The sinks are really low down which is a pain for my back where I have had the marrow biopsy. Just seems more squished down here. View isn’t great, window TINY no air flooooowwww. It does have a TV but it’s actually really bright. Espech when it turned itself on… I rang for some painkillers at about half 6 but didn’t get any till about 7.30 – owtch – should have asked for el double strength! I have a clock at the end of my bed so will always know the time. Not sure that’s a good thing. Either today or tomorrow having a PET scan (which is funny because they just had one in BBad!) down in probs pmout. Then will start treatment and go home. Cant get comfy though pillow wise. Finished watching World’s End? Watched The Heat.
Signed form for trial with trial nurse Sue and Doc Haley
Sis1 in bed, M went over to Date for coffee and Dates mum fell over 😦 . D bought some nice bisquits from fortums! Had some olives and blueberries. Stupid messages from B.
Watched some crufts, txt the sisters! Good Wife and Nashville
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 😀
Friday 28th February
Had Weetabix and toast – toast came with marmalade – thought of D! Met Doc who was to perform the biopsy. He spoke to Mum on the phone after I had signed the consent form – possibility of a collapsed lung, 4 samples taken – 2 dry and two in solution just in case the pathology department needed more time/samples. He mentioned that afterwards that someone would be checking my pulse and heart rate every half an hour. I said that It was ok – it had been the same when I had my jaw op. He asked if it had been a…mdgfugdhfvplasty and I said maxillofacial and indicated the four breaks. He said that was a one up on his son who had only had his bottom jaw done and was now a Durham graduate looking at doing xtype medical research (I kept quiet about my qualifications!!!).
Had biopsy around half 11 although I had just got onto the table in the cath lab when I was desperate to use the toilet (TYPICAL.). Luckily I didn’t have to be wheeled passed the reception again – four people behind the desk! He showed me the CT scan which had marked up measurements on for him. He said – I’m going to use my nail to mark the spot as pen rubs off.
When the local went in, he said “I’ll put lots in, a bit at a time so it holds before the next lot goes in…” on me wincing “Ooh sorry, that’s just your RIB CARTILAGE, I’ll put some more in underneath” “ok” (through gritted teeth!!).
The bit of paper with the hole in was large! It had tape on one side and pretty much covered my face. This was probably just as well. He had demo-ed the noise of the tissue sucker clicker and it was really surprising how quickly it was over. Told to keep the dressing on for 24hrs and then not to wash it for the following 24hrs and to stay in bed for 4 hours after the procedure (no complaints here!)
When M and Sis1 got here in the afternoon, M said that they had to take Wid to the vet which is why they were a bit later than planned. He was in the hands of our best vet – and Sis1 said that she had sympathy illness – she was having breathing difficulties. M said she had got up but then her legs had gone, she wasn’t eating and was very smelly.
It was awkward because she had left a message asking Sal to look after her before they decided to take her to the vet. So then when Sal rang, she had to explain what was happening and where she was… She had also just told Sis2 to come home a day early without trying to tell her that I was in hospital and that little Widdle was in the vet. I was very upset about how Sis2 was going to feel. Date had also offered to look after the Wid as she knew Sis2 was coming in here and that she would need looking after so she had to find out about Wid. She very kindly offered for Sis2 and Sis1 to go in for a cuppa.
Dr A came and showed M the CT scan. Sis1 was able to tell me about her job. M got the doc to show D when he got here a bit later. He had a jeans and lovely jumper day. D had seen Sis1 leaving in Baby as she went to go and pick Sis2 up from the station and go to say bye to the wid. D missed the text to go there with them as he was already on the way here.
Prof J the oncology specialist (known by S and P) came in to say that at the moment it was like someone had taken my life in a snow globe and had given it a massive shake. Yup, certainly seems about right! He said that I would stay on this ward until Monday when I would be moved around to his ward which is luckily just around the corner, so won’t be moving far… He mentioned that now, before we got the tissue results that I would need to have steroids, a tablet to prevent the gout which the steroids may cause and some blood clotting meds. M mentioned about the pill in terms of clotting. He misunderstood and went on about fertility and women coming back into the clinic with their children. WHAT!! Don’t think we are at that stage quite yet!
M and D went for a walk whilst I ate tom and basil pasta with choc pudding and custard. D came back and said that M had just gone to meet sisters. When they got here, M said Sis2 had a good story about the Wid – she was so excited to see Sis2 and then Sis1 said she then kind of gave up after this. I am so glad that they were both able to say good bye to her. We spent ages laughing – Sis1 told us about Ste and attention seeking status which had been the first thing which had come up – said that she felt like saying “AW POOR YOU! MY DOG HAS DIED AND MY SISTER IS IN HOSPITAL” She also said that Bas had sent her a nice cowshed product set and that all her friends knew about her issues – they were M, D, Sis2 and me! And that her only other friends were the ladybirds! (infestation in her room…!)
M had funny convo with Cindy earlier on in the day.
I emailed Uni to defer all exams – copied in M and D so that they would have the right email address.
Carlos rang and left a missed call.
Watched the last Breaking Bad series 1. MISSED JONATHAN CREEEEEK, ah boy.