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Okay so it’s been rather a looooong time since I posted here but some news on Facebook today got me thinking about the community of people we meet as we go through and past our treatment and how we have to come to terms with a percentage of those people entering and leaving our lives rather quickly. This is not to suggest that older patients don’t feel this sort of grief, but for a twenty-something year old, having new friends pass away who are usually younger that you is a massive punch in the stomach.

So today, after finding out that a fourth person I have known through The Christie has died due to cancer this year, I found myself sitting against the wall in the disabled bathroom at work balling my eyes out, and eventually calling my mum to put into words how I was feeling. For one this feels very selfish, I don’t feel I have the right to be so upset when I have known this amazing girl for less than a year - her friends and family are the ones that need the most support here. But really what I feel most selfish about is that this grief is not only about the loss of her as a friend, but as a young person, having to think about someone your age in the past tense this many times over the course of 3+ years is draining and very difficult.

There isn’t the fear that this is coming for me next, I don’t worry that I will be finding myself back in that place for more treatment. What I can’t handle is feeling this hurt over and over again as brave and incredible young people aren’t allowed to live out their lives because cancer says they can’t, and feeling that my right to bereave their death isn’t justified. This isn’t something that needs to be thrown into some kind of therapy situation, but I wonder if there will ever be a point where this becomes ‘normal’? And if anything I don’t want it to, because really these good people deserve others to cry in a bathroom stall about them.

So, small rather sad post over.

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I wouldn’t say I was overly vain about my hair but I am so happy with the progress it has made over the past 19 months. Mainly because it is a sign that I am 19 months past finishing my treatment and I’m still here bitches! Procrastinated doing work this morning by properly straightening it for the first time since it all fell out in May ‘15 and it’s doing pretty damn good! My hair: the symbol that blob is still a stupid dead bastard in my back… I win!

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💪🏽🤡 #fuckyoucanceriwin

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New face gear 😍

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Love having this kid in my life #bestie

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Hair progress - ringlets 😍

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Hair hair everywhere!!

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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.

Sophie and Blob

PS if some of this is garbage writing I apologise - I wrote this while sort of half asleep with no edit!!

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So insanely happy with my hair progress over the past year and a bit. Starting to feel more like a real person again.

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The best attempt at putting my hair up so far 😂I sorta love it though #hair #hairgrowth #yaaaaas #tinyponytail #cancer #cancerhairgrowth

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Roasted Cauliflower Salad with Lemon Tahini Dressing

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Am delighted you have done an update post,Sophie, as we often think about you and wonder how you are getting on. Pleased you are nicely settled in your flat and enjoying life. You look fab. Lots of love, the Lords (Sophie's parents) xxx

Thank you! I am so terrible at keeping up with how stuff is going as it is day to day let alone trying to remember the last 5 months. I hope you are all doing really well 😊x

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Well it has been rather a long time... oops.

So first I have to apologise for anybody that still reads this (I mean its probably only me by now and tbh I am happy with that. But today I had a phone call from a lady at The Christie saying that she was going ahead with a press release on my Proton treatment, and said she had used quotes off my blog. Well then I suddenly felt a rush of guilt - mainly towards myself - that I had been exceptionally bad at keeping up with this. I suppose as a disclaimer, I have been enjoying my life so much right now that I have been more concerned with living it that writing about it. But then with that, there have been some issues that are still present thanks to old Blob. Before I begin on my rant, I am a year on from my first check up I had post-treatment in January 2016, and so far nothing particularly worrying has happened since between when I last posted and now. But I had better describe what has actually been going on. Are you sitting comfortably? Then I’ll begin.

Regarding my fertility there have been some good and bad developments. I had a few trips to the fertility clinic at St Mary’s in Manchester, and met with a really lovely consultant to begin with. She said it was a good sign that my periods had come back, and explained that when you have chemo, it kills off all the eggs that are on a 6-9 month-long conveyor belt. So when you are off chemo, they have to go along that conveyor belt from the beginning, and so it takes a while to come back to normal. So I can an initial scan of my uterus to see whether it looked healthy, which it did. She said that had I had full radiotherapy it would have totally messed it up, but the proton probably meant it was all good :) I also had a blood test, which is a very accurate way of checking your egg count from the amount of Anti-mullerian hormone (AMH). So it turns out my periods lulled me into a false sense of security. My AMH levels are really low, which means that in the near future I am going to be out of eggs. Between now and when my periods stop I may be able to conceive naturally, but that doesn’t mean (a) it will work or (b) I will want to. So they also checked the lining of my womb to check that if I did want a donor egg for example, whether it would be a habitable enough environment. I had to be pumped with oestrogen for a month which was interesting to say the least. They then did a scan again and found that my initial thickness was 3mm and had gone up to 6.8mm when stimulated. The consultant said that they would recommend 7mm for a donor, so it’s very promising and that if I did ever want a donor I should check again. I have since come to terms (again) with the fact that I most likely won’t be able to have children and I really am okay with it most of the time. I think it’s when the broodiness appears like it does sometimes, and I remember that I probably won’t be able to have a bunch of my own weirdos. Which is maybe a good thing, since I am obviously totally insane and don’t have the best genes :P one day it may come to adoption and I can teach those awesome people how to be more awesome. But as I said at the beginning of this process, I would be no use as a mother if I were dead. And that is always the bottom line. I am here and I may make someone else’s child my own one day and hopefully make them very happy.

The next things I have been having a right mare with is this stupid UTI. I have been on and off antibiotics like there is no tomorrow. In fact the last time I almost posted something was while sat in A&E waiting to be seen my a nurse about it. Turns out that is just not treated, BUT the last time I had a urine sample taken and sent to the lab it wasn’t resistant to a load of antibiotics that it had been before. So it’s clearly not some dormant little shit that is just waiting for me to come off the prophylactics! I am now back on a prophylactic dose of one that has worked really well, and after an appointment with a consultant at The Christie at the beginning of December, they decided that I should have a cystoscopy (which I sort of pushed for) since it would be nice to know if there is something going amiss in there. So I am having that a week today at the beautiful time of 8:30am, waaaa! I just want an answer. Even if its that I have to stay of prophylactics forever, so I don’t think its okay to come off them and then all the major pain returns. So fingers cross it all goes well.

My last couple of appointments with my oncologist have been good, with nothing much to report. More than anything I haven’t had any scans/investigations but there hadn’t been a need to/I haven’t been concerned with any pain. I am now in the adult clinic, which I went to for the last two appointments. I really hate it. They’re not not friendly, it just isn’t the atmosphere I want when I am waiting for my meeting about devil cancer, and they tend to be super late which they never were in the TYA ward (happily due to the lower level of patients than adults). So my last clinic wasn’t with my oncologist but with another consultant who helps him when his clinics are very full. She was lovely and was happy to help with what I needed (including another month’s dose of the antibiotic I needed - though I am now running out again). My next clinic is in April and I think we sort out the next scans I need then.

We also had a meeting with some Proton patients a few months back to talk about how The Christie could best manage the patient experience. It was really handy and hopefully will be useful for the overall output. The designs look amazing, and we even got to walk up in the skeleton of the building so far which was fantastic. They said we will have another meeting sometime soon to discuss new plans as well :) as I mentioned above as well, a lady from The Christie is also writing up a press release which she will be sending out to relevant newspapers (including the York and Macclesfield local ones) about my experience of the treatment, which is really exciting!! Hopefully it may help people reading my experience - or the opposite but lets hope not, eh? I was also in The Christie annual report with a cheeky little quote of mine and a photo which was jokes :) poster girl for odd things apparently!

Regarding the personal and work life, I taught first year undergraduate history students in their first term on a skills-based module. It was A LOT of work, but I enjoyed it (plus y’know bit of income as well) and I got some really good feedback from students and the lecturers overseeing it. I have just finished up marking their assessed essays and there was most certainly a range of abilities/effort put in! I am both glad and sad that it’s over now, but more than anything it will be good to get back into my PhD!! That’s all going okay, and I had my TAP a few weeks back now which I passed. The next big meeting is my upgrade which is to determine whether I am actually down as doing the PhD rather than attempting to :P we also got the conference I was organising most of last year all sorted and I was really impressed with how it turned out. Everyone worked so hard and it paid off massively! I have been in the flat for just over three months now and I couldn’t be happier. Mum and dad have been amazing not only with helping my with the purchase of it, but also with making it look beautiful. I don’t think they quite know how my happiness level has been affected by having a space that’s mine so I don’t feel like I am living by someone else’s rules and can make somewhere I want to be (and I can be a crazy disinfector if I want to be, ha!). Speaking of that though, my friend Rach is finally moving in today (some of her stuff is already here), which I have reeeeeeally been looking forward to. As much as I like having the place to myself, it can be quite lonely in the evenings. I do need to remember to not just walk around naked or go to the loo with the toilet door casually open anymore though, ha! Finally (though I am sure there are things I have forgotten) I went to two beautiful weddings over the summer. Seeings two sets of friends get married was just so great and was a really great opportunity to catch up with people. Though slightly annoying that were both London way which ages away from anywhere I have a base :) but that obviously didn’t matter. 

Before I ramble on way too much more, I guess I am just happy that things are going so well. I hope more than anything I manage to keep up with my PhD. I have two trips down London way next month (both PhD and fun) which I am excited about, and after that who knows exactly. Thank you if you do continue to read my mad rants. I really only do this for myself more than anything. And since I am a year on post-treatment I am thankful I have made it this far. I still worry a lot of the time about the bastard coming back and spoiling my happiness, but I just have to make sure those are fleeting rather than lasting concerns. So until next time (which I promise won’t be like 5 months) I hope you are all well and that you have found a little happiness in amongst the madness that our world is now completely full of!

Sophie and Blob

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Since its been a reeeeeeally long time since I posted anything, I thought an updated photo was also necessary to show hair progress :)

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Yep I could do this more often #London #view #amazing #park #primrosehill #primrosehillpark (at Primrose Hill Park)

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Sorry its been so long

So I have been in such a weird time blast that I thought that this was the end of week four not week five! Anyway I won’t bore you all too long - mainly because my brain won’t be able to go that far back I reckon. So since I last posted there have been a few developments. First I went for my meeting with my oncologist on the 22nd. When we discussed the results of the scan, he was talking around in circles a lot which worried me. It said that the mass had remained stable/got smaller, but appeared to be active. So he was like ‘is it inflammation, maybe. Is it the proton stuff, maybe. Is it cancer again, maybe’. This hadn’t worried me (him saying that it was actually fine), but then I panicked later waiting for some stuff for my UTI in the pharmacy. So my dad gave the registrar a ring later and she confirmed that it was normal for it to be like this as a result of to proton so she wasn’t concerned. I wish that he would have just said that in the first place. Anyway, dad also got sent the report and it says all that, but also that I have a couple of slipped discs which just adds more crap to my back, eek! Anyway I just know now that I need to be even more careful than I had thought I needed to be. And I need to find more low impact stuff to do - like yoga if I can get past thinking I can’t do it :P

The next week I then had a million things on, including a very promising meeting with supervisor, and sorting out silly things on my car. I then went to Newcastle for a friend’s hen do. It was brilliant but totally knackered me out! I would go more into detail but there seems too much and a lot of inappropriate stuff as a result of watching Dream Boys (which was hosted by a fab drag queen called Emma Roid :P). I then on the Monday went to the funeral of the incredible Anne Powell. It was a beautiful service and so good to see so many people there. I have also had a couple of lovely days with my friend Ruby - one just out and about in York and the other where we went to Rivleaux Abbey :) and as ever I annoy other friends on the reg such as my soon to be housemate Rach! One night included a very accidental night out out, along with a two day hangover eek! On another note, it appears that my period has started back up! I cried with happiness that I might not be infertile, I honestly thought it was the end of me being able have children, but lets wait and see. Ruby also made a hilarious card for the occasion!!!! 

Finally, the flat business is coming to a head - I may actually be completing this Friday which is amazing and scary all at the same time! I had a mega argument re the standard of cleaning in the flat, but I don’t really want to go into it for fear of getting mad about it again :P my room in the lovely house I’ve been in is now up again which is sad but makes me happy that I’m so nearly in my own place. I am hoping to be out mid-next month at the latest once everything is in place at the flat - getting all the utilities set up etc. 

Anyway so the new plans are to go to Wales this weekend with the lovely Stuart and some other friends, and then next week the sister is visiting me, and I am seeing a lovely uni friend I haven’t seen in a long while at the weekend with Ruby. So for now I am getting on with getting on and trying not to get too stressed. I hope those of you who still have the time to read through this rubbish are well, and I’m sorry it takes so long for me to put anything up. I do want to keep this up because I feel that although my treatment is over its important to show what life is like afterwards. So please bear with me. I will write again when I next have time. Love to you all.

Sophie and Blob (having a little dying party in my back still)