Fringing

I’m well aware that I haven’t done very much on this recently. Sometimes when I know I have things to do, it makes me feel physically sick!

However, moving along now –

August 2016

After much rearrangements of packing due to strict cabin baggage measurements and restrictions, I got flight from Southampton to Edinburgh.

I got Mal a Toblerone from the duty-free. I also got a BLT from Costa which I paid through the nose for but it was quite good. The bottle of water was Scottish and I wasn’t even there yet! The plane was delayed in boarding gate for some reason which confused me as it is only a tiny airport.

The plane was one of those small ones with scary propellers. I was only slightly apprehensive – first time on a plane since BC. The lady who sat next to me needed to use a magnifying glass to read  and she also got her a big suitcase under the seat in front of her. Before she had sat down, she had the suitcase in the foot well of the seat – it then fell on me and then she had to sit down because of the people needing to get past so she pushed the case against me which was not very great. She then put it under the seat and I was hoping the cabin crew were going to make her move it but no such luck! Generally it was okay but the seats were quite small and I was next to one of those panels where I had to lean forwards to see out of the window lean back to see out the window behind.

I read my book for most for most of the flight – it’s a book I’ve been trying to read for ages but I seem to lack the concentration for any book reading recently. It’s also a book which I can never remember the title properly but it is called The narrow road to the deep north ( I had to look it up) When we landed, it was difficult to get my bag out of the overhead locker and then a bit precarious down the tiny steps from the aeroplane to the tarmac. We all then walked straight through right through departures to arrivals.

When I walked through the airport, I spotted some guy who I recognised – he looked like this guy who has a beard and does funny vines. He was sitting in the cafe but it may not of been him (although this is the time of the Fringe!). I withheld my snigger at the variety of kilts on offer in the airport shop.

I hung around in arrivals and as soon as I was going to send Mal a text, I got his! We went and picked Nic up. He was impressed that he hadn’t taken the wrong turn to get on the bypass and there was a long queue on it. At this point it was around 5 o’clock and getting busy on the roads. There had also been an accident on the other side of the bypass, which didn’t help.

We went through the city and as we were pulling up to the barrier where she works, a group of people in various states of fancy dress walked past – it was funny because the guy at the front of the group looked like he was wearing what could be relatively classed as eccentric but essentially not abnormal clothing (a French Renaissance/musketeer hat and a long brown coat). I thought it was strange but passable getup and only realised that they were fringing when I saw the stick on moustaches and deer stalkers on the rest of the group!

We got to the flat which was in an old tenement type building in Morningside. We had homemade chicken pie then chatted and played with the cat.

That first morning I felt strange. Feeling sick with apprehension as to wether I could ‘do this’. I looked up what was on and realised I had missed ’10 things I hate about UKIP’ which I thought was a very promising title!

TBC

Advertisements

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!

Freezing

Wednesday 19th March

Got worried about cancer spreading and infertility. One of those things that I focused on because I didn’t have anything else to concentrate on at the time. Turns out that you can have eggs frozen etc. but takes 6-8 weeks and you have to have it before chemo. Will just have to wait and see. They say you shouldn’t try for a baby for up to 2 years after you’re fixed as if it is likely to come back, it is within that time scale. So…26 ½, 27 ½ 28 ½ geez!!

Turns out Richard Harris (Dumbledore) died from Hodgkins Lymphoma! Who knew.

Think Len came to visit?

Bye Hollies

Friday 14th March

Plan was to go to Mayfly for lunch with D. Got there and they had rubbish food on the menu so went to the White Hart – which had just stopped serving :/ so some guy had said to try the Grosvenor. It was spot on for the food!!! Shame it was inside though – I had RUMP STEAK AND CHIPS AND TOMATO AND MUSHROOM AND PEPPERCORN SAUCE!!! Omggg mmmmmm. THEN we went to Thyme and Tides and had tea and cake –  I had peanut butter cake t’was amazing and D had a salted caramel millionaire shortcake. Mmmm. He’d also gone to the butchers to get pork pie, sausages and then we also got some bread, brosh and I got a scotch egg.

M and Sis1 had gone to Bristol to pack up stuff. R, B and CK were in – mills showed M kitchen bits but then had to go and R and CK were asked to help move boxes when they were packed.

CK was so rude to them. Unbelievably so. Someone needs an attitude adjustment… I think he was hungover but even so – he wouldn’t offer any help and grudgingly threw my stuff around and went off in a huff when Sis1 told him to be careful. He is one of the most selfish people I have ever met – this latest offering confirmed it! I should have reported him at the beginning when he first lost his keys the twat. M asked him about the rubbish and he said “Oh the bin is in the kitchen” and M looked and said “It’s full do you know where it goes?” And he vaguely waved a hand “Oh, it’s out the front where you come in” …so… no offer of “Its fine, I can do that for you” or “leave it here and we can sort it…” more likely that he left it for R and B, the pain in the ass. OH and he documented EVERYTHING on twitter #HELPFUL. WHAT EVER there was noo need to be rude.

They tried to send R off to get my money but he had lost his keys or something (too hungover!) so he messaged me to say if he could do a transfer? So I said that was fine, gave him my bank acc deets. Still waiting….

Chris came over around 7.30 was really good to see him! He has got a flat in Bishopstoke.

Sis2 came back too.

Dreamy

Thursday 13th March

Strange dream about Keira Knightly – I blame reading Em’s trashy mags she got me! Was wierd – like a Wreck it Ralph volcano and I had to sit on the edge and shout down to get a partner for this event or something. And it was also like the bit in Mulan with the snow when the Hun is coming over the mountains. Was crazy. Had to try and write in the sand. There were also horse riders (looking like they were going on a hunt) Then was awkward as someone possibly M talking to someone saying oh yes, A knows so and so and then about the Joses, and then there was a lady standing really close behind me who M kept looking at sideways and it was mum Jose – then it was like that awkward situation where she can hear and know what your saying. ANYWAY. Kept waking up – first time was pain in tum but felt like was in Pomp hospital but it was the last bed before TCT and I felt like I was attached to a line. Had to keep shifting in my sleep as felt that on side everything was collecting on one side. Got really hot and had to get a sheet.

Kicked out, Chemotherapy and Flora

Wednesday 12th March

Finished my book. It was ok but frustrating as there were those kinda hint bits in which make you go “WHAT ARE YOU DOING – GO AND CHECK THAT OUT RIGHT NOW!!!!”

Holly nurse in early – “Oh we need you out of here, need the room for someone else. going to day ward for chemo.” I was like WHAT??????????? Was confused – did she mean they needed the room for a few hours and I was coming back? Nope – they were sending me home after! So had shower and packed up. Chemicals on the ward by 11 and could start by 12, I think she said.

Haley came in so I could sign consent form.

Took loads longer. So hot in the bloody day ward. Sweat sweat sweat. No air, massive windows, sun, luckily had the frozen water to put on my neck. Had to ask for the curtain to be shut – I was in pjs but others sitting in the chairs opposite weren’t!!! Nurses nice but main one, Claire, was dealing with me as she has to do the teenagers and it was annoying – she wasn’t actually listen to me or registering my mood I don’t think. Nice nurse called Dinah put my canula in but was funny as laptop was paused on BB when some guy had been shot!

M and D turned up – no space around the bed – it was the first one on the ward right by the sink. Was difficult. D had eye appoint at 2/30.

Took ages for all drugs to do. First one the line needed re sorting. Luckily I hadn’t realised you could drink and eat all way though so had popcorn and coke as distraction with BB. Fiona had given me a lil binny!!!! Sooo cute 😀 She is called flora and has a heart shaped nose and flower fabric lining in her ears. Jellycat. She sat on my lap the whole time.

One guy opposite only just 18, one 23 yr old josh? Just had bloods. Two others as well a bit later on. Irritating other staff coming to ask them questions. One of the guys saying –“ what am I here for again today? I never listen to what the doc says” irritating writing sign in the patient toilet.

Finally finished but had to sit around for meds from pharmacy. TOOK BLOODY AGES. Was handy though as was able to have to food I ordered!!! Haha. I just was soo hot. When D had come back for his appoint and they were taking bits to and from the car, he found the chair we had used on Sunday. Due to his drops (he also had to go back and hand his bit of paper into the eye clinic!), having to wear his sunnies and there being no space around the bed. He bumped the chair into the bed. TWICE. SOOOO painful – they had just taken my canula out. Pain reverberated up my arm.

Told M about la/brand/her friend sarah/Den/han boyf/Hor/P/J…incest is best!

Claire nurses – helpful comments “Oh you only need to measure your temp 3 times a day” I was thinking one LOZ I was like sure yeah, not worried no probs. Irritating. They also just needed to give a list of stuff you needed to get – luckily already have a themom.

Met A – 26 with leukaemia, had been 6 weeks isolation at beginning in Jan. Lives IoW but was working in LDN – luxury shoe franchiser job and was supposed to be going to Dubai/east to open stores and do training! We swapped numbers – she was fed up of the kids. (we were chatting with her mum in the “social space” whilst trying not to say how annoying the 16yrs old were – the batman trouser and purple head girl were in there eugh. She had been put up in hotels and stuff. She was on c6 which wasn’t nice and they’d had the window break and stuff and some of the beds flooded (which I why I think I got moved around too)

Finally got home. Soo many drugs got given. Lots of pizza and good line of dutyaaaay!

wall art

wall art

IMAG1113

Wall art

View

View

annoying sign

annoying sign

Pompey whats!?

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.

Radioactiv

Radioactiv

People watching

Sunday 9th March

Slept through til 6.30, had crazy dreams about some Disney land thing? Not sure, very strange. Was able to read book, watched JC catchup, watched bit of Clarissa, knitting, Meet me in St Louis. Nurse said that my blood pressure is low (this is not news!). Went got cup of tea from the kitchen in the common room. Asked about retainer. Back is a bit sore. Not sure if going to go home, D on way. messaged loz, j and kat – J in London, loz DIY-ing her new house! No rep from Kat. Iceman crufts-ing! D came over for the afternoon, sat outside in sun for ages, nice. There were some annoying kids – well the kids weren’t annoying but the two guys looking after them were! Not sure if relatives or they were together or minders or what! But they wouldn’t leave the kids alone. Helicopters going up and down. Got costa tea and amazing pecan slice thing, D watched rugby – England got the 3 match crown. Watched midwives. Told Vix who had just got back from skiing.

Chaplain off

Friday 7th March

Hot sticky eugh. Waited til around 7 to start reading some book. Put on some BreakingBad, watched Wreck it Ralph. Dr D came in and Mai and said about booking scan for Monday, they would get that sorted and have the neck CT scan today. They would be happy for me to go on day release for the weekend, would aim to have first lot treatment after scan on Monday.

Blummin religious lady came in too – she didn’t quite use the words spiritual counselling but almost did… should you need anyone to talk to, chaplaincy service etc.

Other trial nurse Vicky came in took bloods for trial. M said trying to sort Bristol, accommo contact didn’t sound like he knew what was going on haha.

Dr liam/adam came in to say CT about 3, kept dropping off before people came in! Watched a bit of Wonderlust, nurse looitta (?) coming in back and forth to ask qs about the scans – funny pregnancy q. “what’s your pregnancy status…?” (was around 2.30!) Aussie girl called April radiographer had to have canula put back in for the iodine etc. for CT. Had massive shower after? Had blood sugar test, A guy called Tim came in to make arrangements for the travel on Monday.

Iceman may come visit later, abee may see tomorrow! Told Get who was funny as usual! Monday will be nil by mouth for 6 hrs before the scan at around 11.30, need transport/outside clothes for it.

Got moved to the TCT ward up on D6(?) not sure. Maasive room looks like a boat cabin! Free tv wifi, xboX common room, massive bathroom, spare bed, imitation fishtank fireplace!

Iceman came for a bit, really nice to see him, had bought a Warhammer figure (Bless!) which he said was a cancer fighter and blasts it whenever he sees it. He is going to Crufts on Sunday with Trigger. He is planning to get a tattoo for his birthday and is thinking about proposing to the gf! Her family are still quite unwell with lots of various hospital visits, Paws is doing really well. Iceman is on a lower dose of meds but probs not helped by the drugs  :/.  He had bought snacks and D some salty nuts – needed really bad! D and Iceman went about 8.30, D gave him lift to station and went to pick up Sis2. Watched JC!! Wooo. Managed to get Wifi – B sent strange picture of CK – y??

TCT sunset

TCT sunset

Fishtank!

Fishtank!