Clocking in

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

In the basement

Wednesday 5th March

Think they had someone new admitted last night and it was loud. Kept waking because of the dressing from the biopsy – very sore, accidentally slept on it! Dawn chorus was SOOO LOUD too – had to shut el window. Might need to have a shower today! Hahaha eww. Have been told might be swapping with someone on the oncology ward who is on the thoracic surgery list. No idea about Pomp. Had nice big long shower but because the water was soft, really hard to get soap off!!

Watched BBad then M came in around 4. Little Liam and possibly nurse Clare said that they had a bed in c4 and that we would be doing a swap. Little Liam also said that someone might be around a bit later. He listened to my tum but no probs so that’s ok.

R and B sent stupid messages about the food. I told Ness.

M around 4pm, bought presents which had been left on the front door from Kat, Gem, Loz, J, Baz and Bec which was very wonderful of them!

SHO Haley and Dr D came in when M was here and we had just finished reading the letter about the trial. New info was that on the trial last year that 100% of patents showed signs on their PET scans that the cells had stopped taking up the gluscose?? Don’t know. Was a 26 person sample and was for the new drug on the first hit not on second hit (i.e. had tried conventional method first, then the new med)

ANYWAY

Started to pack up to move but porters came really quickly so they said they could come back in 10/15 mins – was more like 40! Got pretty hot. M disconnected the bed and we were ready to go. Dr Amar poked his head in and said good luck etc. GP had already rung Mum earlier in the day.

D messaged to say on his way but stuck in traffic. He turned up bout 5 mins after getting onto the ward. It feels like its in the basement. Had missed food – Think it was on the trolley on the way out of D ward! but had sweet n sour chicken with rice and a choc sponge w custard which was super tasty. Probs because I was so hungers. Email from Marc about rep stuff! Put him straight on some of that :D. Saw had email from fbk about an invite to R birthday thing. HUH that’s not gunna happen….14th March though, need to remember in terms of moving out shiz. Watched Line of Dhuuuuutayy and Restaurant man and some of Worlds End (Monsieur Pegg).

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Basement room view

basement

basement!

Biopsy-me (inc. pictures!)

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 😀

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Rocky Roads

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.

Hibi!

Hibi Hibi scrub!

Dob and Date, fruit and cake

Sunday 2nd March

Really? RADIO 2? D’oh! Someone had a cardiac arrest this morning, don’t know what the outcome was (unrelated to the playing of radio 2). Doc is supposed to come around but not yet… Dob and Date will visit. I sent quite a few people a message about me being ill when I couldn’t sleep. Still no message from M or R. I’ve also now started to collect the medicine ketchup pots! Current count stands at 14. No reply from Chris or Mir yet.

Think I will stay in bed and not change until Mum gets here with washed clothes! No way can I be arsed to shower. POOHEEEY! Yeah, ROCK on. I have matching blood blisters on my tum from the clot shots – painful!

Sis1 sent me a message about Sunday Brunch although I misread it as Simon (the rabbit) making curry. This makes sense because he is a very clever rabbit and it didn’t cross my mind that her message meant anything else (blame steroid sleep i.e. NONE)

Finished James Bond, William Boyd Solo. Weather RUBBISH, no sun.

Sis1 had bought some coffee walnut cake and some baklava (MMMm). M had a message from Date to confirm that I knew what the storyline for Breaking Bad was (LOL – he has terminal lung cancer and turns to cooking meth to provide for his family when he dies) Sis2 had ironed all my new clothes which was lovely

Dob and Date bought lots of very welcome fruit – I stuffed in a whole pot of blueberries. Dob sat on the floor and had to cover his eyes and ears when I was explaining about my biopsy and other various medical bits – although he did threaten to go with Sis1 (to be back up) and Sis2 (as get away driver) to go and get my money back off R and collect Chimpy.

Managed to work out the celling light dimmer switch – soo much better! Also really good that I have Sis2 laptop lock which I can lock around the table. I can see a flaw with this though – the table is very mobile…

I had a shower just using face wash – thinking though, I may not need to worry so much about stuff to wash hair…? Was also nice to have proper toothbrush.

Tennis ball – forget the law.

Saturday 1st March

Slept really well being able to have the window open to cool me down.

A nurse came in first thing to shut my door as the window was making a draft for someone else. And then the next thing I think that happened (apart from the lovely people coming in with breakky, tea and to clean) was two healthcare assistants to take my pulse and temp. One was very stern “Just because you are in hospital, doesn’t mean you should stay in bed” I had said that I had been moving around. So I sat in the chair…had to put my feet up which made me cough more…result? Had started the blog was watching The Wire – even though she had been bit rough, she picked up the wire boxset which was on my bed. (I win!)

Text Carl p back – just saying “sup?” just in case it was a fishing call from B and R. He said he had done his first jump that it was really amazing.

Sent Dr B a Happy Birthday message but no reply.

I moved money across to cover accommodation fees.

Nurse Claire looking after me.

M had gone to see Dob and Date and CnL – hopefully borrowing some more DVDs, they have also offered to store my Bristol stuff in their garage which is really good. Manda corgie won’t know until she comes back from her Birthday hol and then followed by Cindy – should be interesting!

D went to get me some books (The Disappeared!) and some toiletries whilst my food came. This also included “ a present for me but you can have it if you would like” Autocar with lots of Audis… M said that they both thought they had heard the Wid this morning.

Sisters had gone t’shops to find me some clothes – traffic was really bad so they arrived just as I had finished the mac n cheese and was attempting the rhubarb and apple custard. Food makes me cough – lots! They bought tops, tees, trousers and some lovely shorts with pelicans on and some new nix!

Apparently I was supposed to have been seen by the oncology team but they didn’t know and that the chest and thoracic team thought that they were not supposed to see me… I went for a walk up the corridor. When I got back, neck had swollen more and hard to move  – SHO doc (?) looked like Rosie, asked how big the lump was because she hadn’t seen the CT scan – M said large/huge 15cms and later to me, about the size of a tennis ball. Mr A had said to her when she asked if he could go though it with dad that he had all the time in the world for me and hard to have any (time) for the patients who won’t stop smoking after having half a lung out. She said that I wouldn’t be doing any law for a while – 6 months to a year to get back normal. What is this going to mean? Plus also, that is quite hard not to think legal…

Discussed who to tell and concluded that RnK could visit but they would need to come in their own car so we could tell them when to buggy off.

Went on a walk up the hall with M because had feeling like I should have gone for a run in the sun today. It was really hot out of the room and my voice had got really gravelly. Had to wait ages whilst it was discussed what needed to be done to sort my neck out. D was going to drive sisters home because they wanted to go but he didn’t have his driving glasses so came back – I had another ECG then it was decided I should have an extra load of steroids and another painful shot of blood clot med. So painful. Was also suggested that I would have some mouthwash for sore throat. Was also suggested that I should have bloods taken… neither of these has happened so far! The steroids did make me a bit angry – was getting annoyed over what the response to the Wid was going to be. Saying that, now dive mag isn’t helpful! Can hardly breathe deeply – strange when I used to have such a deep lung capacity (for swimming and diving). I also said he should definitely send me some wine – mum mentioned that it would also fall under the category of something not being able to have! I wasn’t able to sleep very well at all, although I was coughing less when I did feel more tired.

What I don’t get – How do you get it? Why do you not know you have it and how long does it take to grow? Hmmm. Rosie’s look alike said she would find me an info sheet.

Symptoms include – Cough [Check] breathlessness [Check]… this qualifies for HOW MANY OTHER MEDICAL THINGS????

Biopsy, Wid, Snow Globe, Exam

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.

The best thing, the small things…

Things which are most enjoyable (that weren’t before when I was really ill) at the moment are being able to sleep on my side and having a shower (even though I have to use ye olde cling film to cover my PICC line!)

Even though my hair currently makes me looks like Gollum. Takes an age to put posts up – I’ve written so much but who wants to be inside editing when it’s very sunny or hot. Saying that, I would do more if I wasn’t feeling crap (sick, wrist pains and strange arm pains!) most of the time so when I am feeling ok, I want to be outside and doing things! Talking of small things puppy definitely helps (even when she’s not helpful!)

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On the move

Thursday 27th Feb

Big cup of tea, missed call on my phone, then home phone. Mum spoke to home GP and I think, going down to hosp for tests. Finding clothes and PJs should I be staying over!

Emergency Medical Assessment Unit (EMAU) / Acute Assessment Unit (AAU) wing – serious stuff! Dr called S (who had worked with a consultant hub Mum knew), another lady, Sisters called Mandy and Hermione.

Line put in arm. Arm promptly swelled to twice the size and couldn’t move it without using the other arm to lift it. Had to have it out and put in my foot! Nurse who took bloods and did cannula… thought my address sounded lovely…ah no. Bloods, temp, ECG – ultrasound, CT – iodine through the foot was fun! They had said beforehand I wasn’t going to have contrast then I had contrast…feels very strange.

Strange people being loud in the other bays – diabetic trying to get a kitkat off the trolley, man “had to drop my trousers for 4 females already” with sores (EWW) “partner” and her kids who were home-schooled, noisy, annoying and also had impetigo or something and man – “I now only smoke 5 a day” – all the emphasis on the “once a week swim”…

Sweating – Changed tops a lot, like Saga Noren!

Got moved to side room whilst they spoke to chest and thoracic to see whether I needed to go down there tonight. Turned out that they did and via ambulance between 7.15-9.15… Dad and Sis1 turned up when I had finished eating a remainder sausage and mash (ONION GRAVY). Plan was that Sis1 would go back to sort the supper and wid, Da would also go home after a while and then come back if heard nothing from us, to follow down  – take Mum home.

D went straight there to get there for after 9.15 – problem was we got there at 1am… got internet before we left and tried but couldn’t get internets to work sufficiently to watch The Goodwife.

Ambulance guys “you can walk???” t’was more of a hobble…called Christian and Matthew. Got there in 34 minutes. Was funny because even though I was sitting backward, I was able to tell when we had just come off the motorway and had reached the big roundabout.

Christian had been to PSC (for 2 days!) and his parents had lived in Fish Ponds. He commented on the lack of my Bristolian accent!

Was a really hot and sleepless night.

Ness had said re exam that most people ran out of time and spent longer on certain questions. She said that at least I now had time to re-order my notes and keep everything up-to-date.

Tree

Tree view

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first room

The Shocker

Wednesday 26th February

Exam T-minus 2 days

Wids woke me around 7.30. Got up when Da left, Sis1 door still shut. Big bowl of cereal (oats, coco pops, granola, shredded wheat, currants and rasins!) and tea, listened to Woman’s Hour. Watched Mad Fat Diary – great part about walnut whips. Sis1 came into get goggles for swimming (was quite random). Mum messaged to say that she was getting a call back from Bristol surgery.

Got books out looked at various bits. Had a shower, then had missed call from Bristol GP “I can see that you haven’t had your xray or blood test” ERRR, yes I have! Couldn’t get blood test ’til next Tuesday! Da rang – I asked why Sis1 was here, if she was working – found out she had been signed off for a month and she’d also got the Anthony Nolan job! Yaya!

Rang Mum, rang surgery to say if Bristol GP could ring her, still lots of missing calls – her ringing me not Mum.

When she got back at around 4pm, she rang home surgery and got ok to go there, they thought my Bristol address sounded lovely…. Mum had managed to talk to Bristol GP and then rang home surgery back – spoke to home GP who said just come in.

He did all checks, couldn’t really speculate as I was under Bristol GP. He was indecisive but then followed up x-ray, really wanted to know what it said. He easily managed to chase it up and get someone to look at it.

There was lots of “That’s what I thought it might show” “Just using my eyes and experience” kind of comments. Uh oh. He got them to scan a copy over.

He said that they had seen a lump in my lung. He said to me “It’s not the end of the world” and then took down the box of tissues – which I was hesitant to take from him and gave it straight over to mum.

Doc “Have you got anything on this week?”

me “Exams in Bristol” home GP “You’re not going back to Bristol any time soon..” “OhhhhhK”. He said he would talk to home hosp to have some investigations.

I went to re-register whilst he spoke to Mum.

Receptionist “We won’t be able to register you today, it is between 2-4pm and you need ID” I said I would just fill in the form whilst I was waiting for Mum.

Some mood appropriate slow song which I recognised, must have been Radio 2, these places are always tuned to that station! I only filled in part of the form before Mum came back. She handed it over – “You need to fill in the rest of the form” Mum “No, its ok, please just talk to home GP” Apparently they ripped up the form before asking him. OOohh. Annoying but luckily home GP sorted it out.

I found the song!