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!
This is an update about the lack of updates…. I am still not really in a place to write properly about my STC even two years down the line (TWO). I am now old (30) six weeks into a job (NEW JOB) and am so tired (JUST CAN’T EVEN) it’s 20.45 and I’ve already been in bed 10 mins (WAITING FOR THE GOOD FIGHT ON MORE4). Fatigue is shit, no one wants that. I did however manage to go to Iceland for a friend’s 30th #ICEICE30 which was amazing but I suffered for it when I got back obvs.
I spoke to someone recently who had asked what is like to have a stem cell transplant and I couldn’t really say very much because it’s so awful (not the stem cell bit but the killing off your entire immune system bit)
Number of people I have told at work about CANCER = 0 (apart from bosses obvs because I have organised late start mon, early finish Friday! For reduced pay yay)
Many things have been preventing me from writing or posting. I came up with ideas for several posts and never got around to typing a single word.
I needed a catalyst and I decided that this was something amusing.
I got a sheewee today. I got one for Em when she was doing her big cycle and camping so I thought I’d give it a go. I am going to my festival next week which has significance for me (you definitely don’t need a sheewee for the toilets there, lots there are white and water flushing ones!).
It is my 5th year of going, the first time I went was before I was starting my law course and before I was ill, the second time I went was around a month after I’d finished my AVBD, the third was a few weeks before my relapse was confirmed and last year was 8 months post auto stem cell – I even saw one of transplant co-ordinator nurses there! I wasn’t feeling confident enough to speak to him but I will this time if I see him.
Through working as a Champion for Trekstock I have met and made some great friends and perhaps (I don’t want to say this but I can’t think of a more appropriate term right now) envitably (makes me think of that stupid Brad Pitt perfume ad) we have lost people and I won’t forget.
It is what makes it hard to answer someone, just about to have an allo transplant (donor transplant, not ‘Allo ‘Allo), what it is like – 2 out of the 3 people I know who have had one are not around anymore.
I was discussing this at the meetup on Friday, how I cannot answer that question because even if you explain what happens to you during the intenstive pre transplant chemo, there is nothing which can match how you might feel. I went for most of a week feeling so sick I couldn’t eat anything, I couldn’t move to even do something simple like putting my glasses on, I couldn’t get up to the loo and back without almost fainting or that even when I got given anti-sickeness meds, it made me throw up…
I have finished my law course though (finally!) so SOUND THE TRUMPETS!
I wrote a piece for CRUK which was published by Huffington Post UK for World Cancer Day 2017. See here
Stoical. I went for my three month oncology appointment today and that was the outcome. That and the fact I am not super human – so that’s ok then! Saw one of the lovely doctors I have seen before who was wonderful.
I also saw lots of Trekstock posters in the waiting room! There was one young guy in the waiting room (it’s a mixed clinic waiting room for heart problems and oncology) otherwise there was a gap between us and everyone else of about 40 years.
I also went to have the HRT sorted – hopefully a standard HRT tablet will suit better and not end up with banging migraine. Wasn’t a good start when the doctor didn’t introduce herself but at least they were not overrunning too much with the appointment times. She went to go off and fetch the HRT Queen (aka the consultant!) and when the consultant came in, she read something on the desk and then called me by a different name…. hmm!
The rest of it was fine this time (phew) so forward march.
It’s been over a year since my right (?) ovary was removed, sliced, diced and frozen. Tucked up in Oxford for future use. I won’t even try to find out what the name of the procedure was but Google will help you should you need!
It was possible that I was going to be flying to Edinburgh for it but thankfully oxford had availability.
We had to get there quite early and I remember being one of the first there. We sat in a wait room which was more like a conservatory attached to a corridor.
Then we went trough to a bay with chairs in and the girl opposite plus bf and mum were doing cheese jokes so I think I chipped in with the explosion in a cheese factory… I had a chat with the head doctor who was lovely and had previously rung me from home at a weekend – now that is service! So great. We spoke about her son and his training contract and his girlfriend doing the LPC. And then spoke to the surgeon (Harvard lanyard wasn’t just for show….) and the anthestist. The nurse looking after me was called Holly and the anthetist assistant Anna had learned English in my hometown.
The surgeon had said that they would make incisions both sides and through my belly button but only take one out. They usually take the right(?)
I remember coming to in recover, being moved and then hearing Bear’s Den playing on the radio – which was surreal as I was supposed to be going to their gig that evening! I had great chats with the guy looking after me in recovery who got me some tea I drank though a straw.
Later on, the surgeon came around for a chat and then commented on my pink pants (neon pink so yes they were pretty obvious…) and then later I was told to get up off the couch to go home and I almost fainted. I had never had that happen to me before but now I am all too familiar with the rushing sound. It was also the most painful thing – trying to get off a couch which didn’t move up or down and no steps to reach the floor. Tricky. Opposite the girl’s sister had turned up to take her and mum home and the sister almost fainted! Just as well my mum had been there to be nursey and tell her what to do (lie down, legs up!)
Trying to get off that couch was one of the most painful things I have experienced so far – surgery in your lower stomach and you have to try and bend! Other than that, it was one of the simplest things. Future fertility trust is the one.
So flying forward and following on from my previous post – after the stem cell transplant in January, I was experiencing horrible hot flushes. It took til about June/July before I got referred to a specialist dealing with early menopause caused by cancer treatment. Symptoms made worse, not just with the chemo interference but by “ovarian insufficiency”. Totally strange to be relating to older women in this way.
Thankfully tablets solved the problem until Friday. I had felt that the initial consult was rushed – considering I have had to wait for long periods (hahahah no) before to see doctors, I have never felt that, especially for my oncology ones, I have not had their time and attention however late clinic is running. I have always seen the doc and then a specialist nurse (auto corrected to socialist – I don’t know but I can ask her!) and they have given me more than enough and I am so grateful.
This other one however – over two hour wait (and this has happened twice now!) for a less than 20min (and around 4min) appointment has felt rushed. And annoying now as because of this I have to go back to them. FML.
There has also been incorrect asking for consent to have a student in on the consultation- as far as I understand you should ask the patient before hand (I.e out of the room) if this is ok – not offhand and not whilst they are in the room “oh I have a student with me if that’s ok”. Well it was ok but it would have been difficult if it hadn’t been – she was talking to me as we walked in and hadn’t mention the student but (and this could have been critical for some patients attending this particular clinic) he was sitting there and she didn’t mention him until we had sat down…
At the first appointment, the doc said I needed to have sex. For my health. On the face of it great, I suppose. But be realistic and a bit more understanding – this was with hardly any questions and on the initial appointment – should I have felt insulted? Or something? I think I was just a bit taken aback and felt “Oh GREAT, rub it in why don’t you! Young adult cancer strikes again – ruination whirlwind of life!” Can you think of anything worse than this when you feel like crap, feel you look like crap, have no life as you live at home and and still find it difficult to have any confidence whatsoever. DING DING DING.
So back to Friday – had the second appointment last Monday – I’d mentioned that I’d been having headaches on and off for about a month but wasn’t sure it was linked to the tablets. She paused and I waited for her to ask further but she didn’t. So it pretty much went – tablets working? Yes no symptoms i.e. hot flushes, bone scan looks fine, are you in a relationship? Errr no. And then pretty much here’s an appointment for a year and come back to us if you have any concerns….
Friday was massive migraine with aura and GP said don’t take the tablets. I couldn’t do any work all day.
Boys have it easier.
I have a cold and I caught it from Prince Charles.
I got to Green Park at half 10 almost on the button. Luckily there was a Clarence House exit. I saw Emma who I just about recognised! She was on her phone and then introduced me to Jane lecturer and law teacher of the year 2015. Emma said Tom was running late and would catch us up. Justin came over to say hello and then went off to get a coffee. Jane walked with Emma and I, and we walked further than I thought we should to find the gate but luckily there was a policeman guarding another gate so we asked him. He said to go to the gate we had walked passed and then around the back of the building to the pass office. Jane left us at this point. We walked through the gate and then in front of a building covered in scaffold and hoarding and around the back to the right. Emma said something about Joe having an interview- I think I understood that he’s her husband. Not sure.
Had our ID checked in the pass office where we met Martin plus daughter, David and Rebecca (assistant) there was another guy there but I’m not sure he was with us! There was a woman with a clipboard.
First room had plates, pictures and a large silver ship, then the kitchen, then up a few stairs then down a few stairs where we were greeted by the head butler (who I believe was called Leslie) we went down a plush corridor and into the morning room. It is a pale green and there are so many paintings and pictures to look at. Emma says about the smell -and it does, like National Trust house (she says it’s the polish). Martin’s daughter Sarah goes off to find the coat room as she needs to set up the badges and things.
Butler guy speaks to Martin whilst Emma goes to find the toilets and he puts numbered posts as per martin’s instructions around the room.
One of the table has a collection of photographs – queen and great grand children, Charles and Camilla at the front, queen on some steps with corgis, a drawing of corgis, a great head shot of Harry which he must LOVE.
There is a Claude Monet picture on the wall behind.
I spoke to the lady which had been sent by one of the companies as her boss couldn’t attend and had to explain the charity to her.
Spoke to Stephanie Mc who I met at the awards show before. Paul turned up from Cambridge.
He thought me and Emma were trustees – He said that it’s good to have the charity as he gets so many letters asking for help and he can send them our way!
We spoke about HS2 and he said there’s a good transport guy in cabinet at the moment so grab on to him in case he gets moved.
The guy next to us said that If he recognised his address that’s because he used to be the land lord at 39.
I spoke to Diana, I spoke to Lord W, I spoke to Fiona at the paper.
What have we been doing since Gilmore Girls was last on tv with new episodes in 2008?
All 3 of us have finished uni, two of us finished a further uni course!
Sis 2 with Anorexia and me with the cancer delights
We are all Rory
Alright Paris – little one pushed herself during uni – amazing sport, extra curric and degree during our illnesses and the dog…
It’s been quite strange going through temporary early menopause due to ‘ovarian insufficiency’ and I have felt that I did not get much help with this at all in the beginning. No information from the docs, no preventative action – funnily enough (and as usual!) Woman’s Hour have been the best. Who would have thought that the items aimed at women my mums age would be really helpful – it’s too hilarious.
The most funny not funny thing was when I finally did see a specialist was her saying that I needed to have sex. OH WELL THANKS, THAT IS JUST FANTASTIC. Just what you want to hear when you have been though a really great time recently and feel so marvellous about yourself, oh yes and you have a boyfriend. Perfect.
So – in light of the above, I am going to make sure that future cancerous personnes get the information because frankly no-one needs to have this bundled on top of them. Boys have it easy in terms of fertility preservation!
I am wondering some long, lonely halls and corridors at the moment. With a terrible sense of dejavu.
Everyone is there, no-one knows. They talk about it without knowing. They know so much and so little. A balancing act between the share and over share.
I walked into a bathroom today which was painted a certain shade of pink. I have been in here before I thought and then I looked in the almost full length mirror and remembered. I had gone in there to check my suit before my practical exam, a week or so before I was diagnosed.
I have support and I want others to have support as anyone effected by any severe illness does. Trekstock is a good one!
For CB and AJF
I think this is where it might show most. Whereas my classmates were settling into a day or two of uni work or work work, I was in the hospital for appointments.
Friday – DXA bone scan, a baseline to show how my bones are and whether they have been affected by osteoporosis (as a result of ovarian insufficiency) It was the quickest oppointment EVER. Despite the car park being snarly. I jumped out with sis2 and we went on ahead. Sat in the tiniest waiting room (more like a sub wait) with two grannies. I got asked to fill in a form (pretty much didn’t). They spotted mum from way down the corridor (being of appropriate bone scanning age). I then went straight in without filling in a second form. Lying on a table with a wide arm over it and the woman in charge of the computer put a block under my legs (back scan) then strapped each leg (one at a time) to a triangular block. Whole thing took 10mins and results at clinic on Monday.
Monday – car park horrendous. Just me and mum we were even earlier than had planned as I had some Trekstock posters to put in various locations. Went straight to bloods. Took forever. I’d put a heat pack on my arm – TOP TIP! The nurse came out eventually but had to go send the bottles off in a tube. The next guy went in but the air on was on (v glad for heat pack at that point!) Met one of the women who’d been next to me when I first went in back in October. Saw my specialist nurse go past. My blood taking was quick and pretty painless. Went and had height and weight (standard).
Will fill this in (currently at uni so have some work to do!)
Whole exercise took 5 hours 😑
So how do people with or who have had cancer cope with university life? I will tell you next week! Following on from this – Abandon all hope ye, I did some #lawyering and got the result I wanted. I am now going back to classes starting Monday. Help!