So, why write a blog about my cancer? Surely the answer is – why not! For a start this is to document what happened as quite a lot went on in a very short amount time and if I hadn’t written about it, I would not be able to remember a thing. Thank you brain. I think another reason is that lots of people (myself included) do not know about Hodgkin Lymphoma (HL) even though it is common in my age group – so I figure that a bit of awareness is not a bad thing!
Monday 10th March
Can’t really remember – read, watched some BBad and had shower. Waiting to go for PET scan – “Ray” turned up late (10.15/30). Had been was expecting an ambulance and chair but it was just him – volunteer driver in a Honda jazz! Took ages to walk down the corridor, in my pj trousers lolz (had been told to have/wear outdoor clothes to the scan so asked if I was ok in my PJs…he said that was ok, probs thought it was a strange q!) We just swapped numbers as he said would take a couple of hours and that I could ring when I was done. Listened to woman’s hour in the car on way! Got there, he didn’t know where to go so went asked in recept whilst me in car. Then walked to scanning n Xray which was wrong place and had to walk around to nuclear medicine. At their reception we weren’t on the list…? Then rang though, I sat down and Ray left. Went though, sat in bay with massive chair. With CCTV camera in front too.
Asked lots of questions – when last had a CT, been exposed to asbestos, any surgery, had TB, when was last period…. Errr all days rolling into one! No ideas about dates and things – I’m in hopsitalll…? Really old lady turned up in bay next door, she seemed confused a bit and was French – referring to her “cahier” 😀 she was having issues with bloods or the cannula – bruised.
Had cannula in, bloods taken (he was ok at that but managed to get the tape stuck to his glove and not me! Left the ends of the tape folded which was annoying!) and blood sugar test. Sat there reading for a bit – stupidly left my headphones – couldn’t read properly and block out Heart radio. ear pain! ARRGH. Was loud. Then he came back and put a metal canister with normal plunger on the end (which had the nuclear injection) in. Didn’t feel anything going in, as soon as was in, cannula was out. Had to sit there for another hour or so I think and drink water as it went around the system. Another guy had come to give me the water. I don’t know if I was out of it or what, or they were talking quietly but I did keep finding it hard to understand them. Was told to keep warm so was wearing long sleeve top, hoody, scarf and my coat. Apparently so that less body turns up on the scan. Said that would go though scan 3 times or something, 2 shorter and one longer one taking 30 mins. Had to keep arms above head for the whole time, arm went dead, was really hard to keep still!! M said looked really swollen when then came over later when I had got back. Worst bit was having to listen to radio 2 OMG. Soo boring. Was interesting that they had an interview with Ray Mears BUT at the same time he chose the jungle book song – OMG really. Felt like an orang-utan with my arms above my head.. Some quiet spa music would have been better.. no water drips though . It was quite loud too, don’t know how it would have been for the older lady. Think scan took longer as there was someone infront of me. Got worried half way though when I remembered that my phone was on in my bag haha! Oh well…
Old lady worried about necklace, had been to toilet and then got told she needed to take her bra off. Could hear she was getting a bit worried. Funny sign in toilet – sink not suitable for radio active waste. Got given letter to give nurses about patient contact and not ideal for pregger ladies to come near.
Sat waiting after. Nurse said that she would ring my driver as they don’t leave us alone and there was nooo signal. She came back and said he was going to to 13 mins haha was longer! Lady in next bed had had tumours removed and wanted to know if she should keep the cannula in for a test she was having tomorrow but they said wouldn’t need to.
Read their leaflet which would have been helpful to have had beforehand as it said why to bring outside stuff n clothes!
Lucky Ray came and took me back, was slow walk but quicker route to the outside. Stupid double lot of rotating doors – I started to head for the normal open one but just followed Ray. Nice weather still but hazy. Saw really fat lady in strapless dress sad, very fat wobble. Boy/20yr old electric micro scooter no helmet, on road almost went in ront of the car. Listen to classic on way back, had to detour as bit of traffic and went around and saw the ordinace survey building.
Got back about 3, had MASSIVE PICNIC. Shoved soo much food in. they had given me a sandwich to take so I could eat after but crumbs and hospital :/. Mum n Sis1 showed, Sis1 made princess cake! Was very white and had raspberry jam and pink icing. She’d used the kitchen aid :D. Jess and nurses liked it. Watched lots of rubbish TV – the colours on neighbours looked weird! Sis1 and mum made tea, dad showed, Sis1 read Elle from the common room as did dad J funny pictures.
Missed calls Drs and surgery RANG say WHAT!!!!!!! Dr Better –“ missed your telephone appoint” WTF. Pharmacy “ringing to see about your inhaler” WTF!!!!!! Pharm had rang again later with their number so I rang them back and was like ERR not using it, I’ve moved. Mum said she would talk to better (doucheEEE). Nurse jess said unlikely that anything happen today – but that research nurse would be up after clinic. Vicky (pregnancy test nurse!) came and said that Dav would be around tomorrow but nothing this eve as everyone needs to check compare the PET.
Watched and caught up on Silk. Morph before bed, winner.
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 😀
Monday 3rd March
SLEEP yeah!!!! Was able to lie quite flat but no on side. Too noisy with weather and breeze with window so just had to keep fan on and then off when it got loud. All night heard the phone ringing and them trying to organise beds – phone is SOOO LOUD!
Wooozer proper rain today. Ness asking me questions – what goes in to the heading of a witness statement in Civil (had to look it up to double check – PD 32) Chatting to Get about TEEV – he said to catch up on the musketeers, I said I hadn’t seen JC or the Goodwife yet!
Got given the Hibi MRSA wash and a gel to stuff up yer nose also for MRSA.
Thoracic Dr came in – said they would find out the results and then pass me over to the other team – his main concern is over my breathing which is its recent normal self…
Thank you Woman’s Hour. Jane is the best. Managed to get cherry yog on me – luckily not the t shirt or biopsy scar! Just straight down the v-neck! (ew) Also then found some on the sheet hahah!
Left arm does look really bruised and druggy, I now have 3 bloodclot shot marks but M’s didn’t hurt, its also a lighter red colour – had it after food and after pain medication.
Sis1 had made rocky road! This was funny because D had also bought some so we had LOTS. She got me a smoothie from Costa – innocent smoothie with the same amount of sugar as 4 (?) krispy cremes? Sis2 did lots of knitting and I swear when we were asking what Sis2 was making that Sis1 said “a wig” and I said “it’s a bit premature for that!”
Sis1 has decided that instead of getting a nose piercing that she is going to rescue a guinea pig which is going to live inside. Sisters were then going on about this story on ITV “Woman gets eyes scratched out by dog at bottom of stairs in own home” EWWW. We all decided that this wouldn’t happen with either a house rabbit OR guinea pig..
M contacted P to sort out all the Uni stuff. Hopefully all course stuff and accomo will be ok/easy to do for him.
Lots of people in contact – abee, Lace, Fiona, Baz, J, Mir, Chris, Ash, Kat… M spoke to Manda corgie & D and Manda went over to tell Cindy. J sent a video of otters she had seen at the Cotswold Water park today. abee told coffcats. Kat is giving a talk at her old Uni so may come visit today or tomo.
Had a doc from oncology come in to say that prof J and Doc Ivan would be in today. Sis2 is going back to Exe tomorrow – I think she has to prepare for a practical for Thursday/Friday. Then walked up the corridor a few times. I keep forgetting that Dr Ivan did my biopsy! (don’t actually know if it was supposed to be him, think he said Dr Adam? Who works with Prof, all very confusing – too many names!)
I must have been confused though because M and D arranged to come in early tomorrow to see the Drs.
Signed EPA with a nurse called Charlie as witness – so that bank account deets can be controlled, in terms of keeping loan monies and accomo DD in my account!
B sent message at 7.30pm, direct quote/spelling – “Hey Al, how are you? Have you heard anything of your xray? X”
Watched some BB then most of beyond the pines film.
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.