#reeeeeeally pushes these skills to the test

[bunny-bunny-boing-boing]

i don’t know how much distress tolerance and radical acceptance i’ve got left in me

[blob-and-i]

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