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 Рfirst 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 Рit 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

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Mini

Small update – officially not on any meds now that I’m 6 months post transplant. It’s funny how you can slip so easily into things and forget what it was like to be taking an assortment of meds everyday! So I guess I’m now into the new normal (again).

(Have a horrible looking toenail infection and “ovarian insufficiency” symptoms)

…and my eyebrows are falling out ūü§Ē.

Abandon hope all ye

I am angry. This doesn’t happen that often. I cried. This also doesn’t happen often (last notable occasion was on June 24th). Turns out that being a student and getting cancer isn’t helpful – who would have thunk it.¬† BC (Before Cancer) I was a student on a one year self funded law course. I had to withdraw from the course for that year and re-enrol for the next. I was able to do a few modules last year but cancer struck again (of course!) so now aiming for September. I have quit¬†the course several times¬†but¬†crucially (it seems) not fully ‘abandoning’ it i.e. having¬†no wish¬†what so ever of taking it up ever again, at any time you care to mention. In not abandoning, I am classed as a ‘student’. This has an impact on the types of benefit I can claim. I never wished to be on benefits and having being put in a situation where they are¬†essential and being where I am at this point and age in my life – it hurts. Do not get me wrong – It is a great system and I have had to jump through many a hoop as I had expected but having done so, I am unable to have access to what I may be entitled to because of a¬†system unable to cope with situations which are not the norm. I do feel entitled to it and I am very respectful of the benefit I do get – I have had many a job and paid taxes before so this is a situation where, since I have paid in, the system should kick in and help. Obviously there is lots more to this and this is an extremely simplified version but I have been working up to a certain goal for many many years and my course is¬†key – it now may be a road on which I may not be able to continue on.

So in conclusion – Don’t¬†get ill when you’re a¬†student. As if this is was anything you could possibly have control over.

 

Jet lag

I’ve decided to stop worrying about not blogging and just blog. I can’t do it when I feel awful and then when I feel ok, I want to be up and at them and doing, exploring and seeing. Recently I’ve had a great weekend in Cambridge at a friend’s party, had a lovely few days in Exeter (met BBC R1 Greg James who is THE best) and a baby shower in Essex. Don’t get me wrong, these sound like and are normal things to do but the consequences when I’ve got home have been noticeable. I have been wiped out, exhausted for the rest of the week but at least I’ve now reached those milestones. The being able to go further places and with other people. It’s funny how quickly you forget what’s happened when you feel lots better – I keep having to remind myself that ICE plus high dose chemo plus transplant is going to require longer recovery than just AVBD. Time wise from last chemo, I’m feeling 2-3 times worse than if it had just been the AVBD and a whole week of throwing up has set me back too.

I feel like I have jet lag every day.

This is because the high dose chemo pre transplant has caused chemo induced menopause, mainly hot flushes and sweating ALL THE TIME. Like being in the middle of the humid rainforest. (Even as I’m typing, I can feel it dripping EW) Being one ovary down probably doesn’t help either. I have not slept properly for 2-3 months and it’s now hitting quite hard. I would say though that if is the only thing I’ve got to complain about then that’s ok. It’s minimal. I can deal and I pretty much put up and shut up IRL like we all do.

But who knew I’d have so much in common with older women and pregnant ladies (in terms of nutrition and infection aversion techniques) at the same time??

A little while later…¬†

Today has been the first deliciously warm day without a hint of rain. 

I had my autologous stem cell transplant (me own little ones fed back to me) in the middle of January and it’s now just into May. Trying to beat off the fatigue in order to go over my transplanty blog notes (there’s a definite bit in the middle where I lost it – temp of 39 degrees and vivid dreams of Trabants, white horses and some kind of chocolate factory…) 

Current post transplant symptoms – getting tired and almost breathless easily, chemo induced menopause (damn you! No doubt made worse by minus one ovary!) hot flushes galore and disturbed sleep. 

However very grateful not to have had any hospital stays since Feb and last appointment was March! 

Pretty eye watering to think of how much this treatment costs – Something like ¬£3000 for a transplant. 

Agenda

Busy times ahead –

Day one – CT scan, consultation

Day three – bone marrow biopsy with possible overnighter in prep for…

Day four – Hickman line in then impatient chemo x3/4 days

Anyone want to swap?!

1st Dec

Currently live blogging from El Hopital! On almost full stretch charger – be afraid for my data! Yet another ward with no WIFI – first world cancer problems. Unexpected overnight stay to have some red stuff pushed in me.

Needed to ring the Acute Oncology Service (AOS) last night as my PICC line wasn’t flushing. This can mean there’s a clot or blockage in the tiny line leading from my arm to my chest and thus v. Important to make sure it’s clear. They suggested pushing a tiny bit of saline down to see. We tried but no budge. Then rang back in the morning and they suggested trying again before resorting to more drastic measures (eg having line out or some enzyme in to clear the block – magic!) Line was super fine this morning – flushed like it should do! Next issue though was that during the convo with my special nurse, we’d mentioned that I’d had heart palpitations on Friday – this may mean that the line had moved and was tickling my heart… Imaging Mr Tickle’s arm as my line. Nurse said would talk to AOS and probs arrange a chest X-ray. I put some bread on to mix and took the pup out for a short loop walk around the field. Got the call from AOS whilst on way back – wanted me in for ECG and when could I come in? Earliest was gunna be 4pm as Mum at work.
Got to hosp at around 10 past 4, chest X-ray, bloods and ECG done by 6 and results were that haemoglobin levels were .6 and going to stay in to have some blood bags. Nightmare! So here I am – surrounded by older ladies and no laptop this time! Luckily had put the “hospital” bag in the car. Had dirty dirty Burger King for supper (judge me) which was great as was super hungry!

11th November

So this time it really is d√©j√† vu because the I had to get rid of the puppy who kept wetnosing me meaning that I could not use the keyboard! But so I am back to where I was which was that it felt like d√©j√† to was sitting in the living room watching Game of Thrones with the puppy on my lap. And I have also dug out my headset so I can do dictation instead to avoid using the keyboard as my wrists have been really painful and let’s hope it will also prevent puppy wet nosing – shall see how this goes!

Okay so back to the quick summary -so one ICE chemotherapthy down and the next is due to start next Wednesday. Well – that is when the bed is booked whether it will be the same as last time and we will be waiting for bed for two or three days, who knows!

A couple of days before I was due to start chemotherapy I went up to Oxford and had my right ovary removed for quiet preservation. This is obviously a dictation mistake which is hilarious! Cryopresevation. I’ll definitely be doing a separate entry about FERTILITY.

I was officially re-diagnosed with relapsed HL back in October after I had noticed a small lump in my neck as far back as May – which they were keeping an eye on – and had prompted several scans, one which I had one in June and another pet scan after my holiday in July, which led to having a needle biopsy and a chest biopsy…phew! More on those to follow!

D√©j√† vu 9th November 2015

So here I am, typing whilst one eye is on Game of Thrones and the doggy is trying to do a wet nose nudge! Bloody déjà vu or what Рjust like last summer.
Quick summary, will be adding more details later! I have had one round of ICE chemotherapthy from Friday to Monday. 1 bag of 1 hour joy and 2-3 12 hr bags including some called Mezna to reduce liver and kidney lining irritation. I was assessed as ok to leave at 9.30 am on the Tuesday and got home after 7pm due to waiting for my discharge drugs. A whole day. Extra.

By Timothy!

October 2015
So it’s currently quite confusing (understatement) I’m possibly re-cancerous but after a CT scan, PET scan and a needle biopsy there was no conclusions and I needed another bigger biopsy. 

Originally told that it would be on Monday or sooner if they had space, rang the Thursday before – I wasn’t on the list for Monday! And then I was… So went in for pre assessment last Friday which included going down into the hospital depths to the blood taking room as the oncology one wasn’t open.

 It operated with an actual supermarket counter ticket system and a female and male voice which shouted which ‘booth’ was free when the number changed. I would have called them cubicles and why did they need a name? You couldn’t really work out which number booth was which anyway as the numbers were behind the curtains. The voices pronounced booth with an RP extended “boooothee”. Very Paul Temple and Steve! http://tinyurl.com/qg7g99m