Update - since its been such a long time!
It always gets to a point where I think ‘oh man I have no idea what has happened since I last posted’ that I shy away from writing something. But I had a nice moment of clarity this evening to want to sit with a really lovely cup of herbal tea in my bed and reflect on what has happened over the last 5 months or so.
Though it is now taking me so long to write posts, I feel like they give me a time to process what has actually changed over a normal period of time, rather than how quickly things would move and yet remain so repetitive in groundhog treatment phase. I have more to say, more that I have achieved, more that has had a slow and perhaps nasty effect on me.
As a matter of actually updating on medical activity, there have been a few developments. First I suppose is with the UTI. I am as ever still suffering with that demon and on continuing prophylaxis. I have had every investigation known to man on it and am now waiting for the slowest hospital in the world to send me the first appointment for my 6-week stint of bladder instillations. I will go in on the Wednesday each week for about an hour, have them fill my bladder with a concoction of stuff that will help relieve the cystitis, caused by the damage the chemo did the lining of it, leave it to sit for about 30 minutes, and then I wee it out. This is not meant to fix the problem, but hopefully it will help. But, as ever with kinda rubbish hospitals like York, I am stiiiiill waiting on the appointment. If this were through The Christie I would be well informed by now. But, I have to wait for now before I start chasing people. Second, I also had to deal with my first smear and the results of that badboy. I had a mild abnormality and am HPV positive. Along with everything else, I really didn’t need that. In the end it wasn’t anything to be concerned about as confirmed by the biopsy from the colposcopy. The middle of my body is just a complete and utter shit show! But we persevere. I also had to reassess my PIP benefits which was pretty scary because I had to meet with someone face to face this time. The last time I was in hospital way too often to be able to make it in/want to go in, so they did a telephone consultation for extra info. The money has been so useful for keeping me afloat, especially with how much petrol costs me to get to and from Manchester so much for appointments, and still get on with a degree. But the decision is theirs to make and hopefully they will be able to still provide the support. Finally and perhaps the most important for me, I got some scan results back last week and the oncologist told me they are completely fine. I was less worried that usual about them, as the last one I had was a year ago and I wouldn’t say anything felt any worse. But. There is always that horrible underlying anxiety and dread that that bitch is gonna be cooking in my back again.
I find that I get affected really badly by the stress of it, and I sleep way too much and shut myself down. Which, when you have a PhD to get on with is really really not okay. I don’t know how to get round all this fear, or if I even should, but I feel like I don’t have the luxury to get into the state of mind I do when I get scared about the cancer. It’s difficult to admit, and I sort of hope that it’s just me that reads this, but I will sit and cry on a regular basis about all of it. Not just the worry of it coming back, but what even happened in the first place. A few months back someone on the radio was giving a report on how PTSD needs to be recognised to happen beyond just wartime occurrences for example, and recognise that any traumatic experience, like a miscarriage, is exactly the same thing with the same effects on the person. Until that point I don’t really think I had considered that that was something I might have, but it now feels like there is an answer and a validation to how I act as a result of the whole process. That doesn’t stop the thoughts and the nightmares but I feel more grounded with my emotional responses. I think the tears also come from a place of not being able to sound any of this out to anyone. The only people I know would fully listen and take in what I was saying without getting sad or dismissive are those people who have been through what I have at this time of their life. I am never more comfortable than when I am around friends who have had cancer. It’s a community none of us ever asked to join, but we are a merry band of broken people. Broken and yet some of the strongest you will ever meet. We live now, we live because we know what staring death in the face feels like. But in doing so we are compromised and no matter how hard we want to forget and move on, we are regularly reminded of why we are where we are today - be it a chronic pain, a prosthetic, an implant, a crutch, a wheel chair, not being able to exercise properly, excessive fatigue, scans, tests, prods, pokes, a new ailment, the list goes on - none of us can find a way out. Sometimes I find that something difficult to come to terms with, but I then have to remember the volume of good and happiness in my life.
I have had the opportunity to be able to do some amazing things that I can find a way around my broken body and have such wonderful things: I have a fantastic family and incredible friends; I’ve managed a concert; I went to see Harry Potter, & The Cursed Child; I am part of a book club with wonderful friends; a good friend has got engaged; lots of lovely people have got married, had babies or other engagements; I have been able to attend training events in and to go on an archive trip to London (despite still super hating the train - ironic I know); I have been able to meet amazing academics at events; I have been officially registered on my PhD; I had the utter pleasure to speak at a conference in Sweden and then visit Denmark (my heart is completely set on Scandinavia now!!); I have papers coming up to keep showing people that I can do this and I am worth listening to; I have an internship; I helped at a CATS event to help train medical/nursing/pharmacology students in spotting cancer in young people; I had an article published about me; I wrote a post for the Teenage Cancer Trust about why it is so important to teach young people about cancer in their years in education; I have seen my mum and dad, and my absolute best friend reach a new age; and I even reached my 26th year which there was a point I didn’t know if I’d see. This will continue as long as I keep pushing for it.
As it is getting a little late I suppose I had better wrap up this insane rant and get to sleep. Tomorrow I am at an event set up by my funding body about Wellbeing for researchers - one of the highest groups of people to have mental health issues are academics and I can vouch for that. It is therefore so great that they are holding an event to help us think about how we can put mechanisms in place to try and reduce the stress we are under. It has come at a great time as well as I try and get my head back into my research after the scan fear blip!
To those of you who still manage to keep up with the madness, thank you. I know I tend to have rather a lot of negative to write but I mean to use this as a tangible way to figure out what’s going on in this messed up head of mine. Though he is still happily assumed to be dead in there I will still sign this off from the both of us. Goodnight all, and I hope you can all reflect on what makes you unhappy in life, and how it can be so easily negated by all the massive amounts of good.
PS if some of this is garbage writing I apologise - I wrote this while sort of half asleep with no edit!!
