Discharge

I re-read my discharge letter from the Royal Marsden. It's quite bleak. 

This happens a lot, I read something but then go back to it and I re-read as something completely different. 

Essentially I've been told any new side effects will be managed by the hospice, though I can still request appointments at The Marsden.

I also still get GP phone calls and prescriptions. 

But yes, the 'sorry we can't help you until you need help' letter feels a bit more "you're dumped" than I thought. 

Which I'm not, really, kind of. But I sort of am too. 

It's so confusing being me. I might also feel a teeny bit upset for the first time too. 

Argggghhhh

I think it may have finally happened. I am getting so many appointment letters, so many alerts on the app, so many texts asking me to book appointments that I no longer know what I'm doing any more. I have appointments I didn't know about and ones which I thought I had logged which no longer exist. 

Fortunately I have a neuro phone call tomorrow so I'm going to go over what I have to make sure I've not missed anything - or logged anything twice. 

The upside of all this is the appointments are in the new cancer centre, Sutton Oak Cancer Centre which is nice and spacious and bright - and it seems quite efficient in there too. 

Anyway, it took nearly a year, but here I am, confused. Ready to work it all out! 

Then the scary stuff is popped into your head...

I'm back at the hospital next week, and they want to check out my cough. It might be nothing or it might be something. The most extreme something is a blood clot. 

Given I'm going to be having a chest x-ray I'm now making sure I'm looking after myself. Especially when someone posted on a cancer FB group about their parent dying because of their blood clot which was recently detected.

So yes, getting checked out for that. 

So let's hope for a nothing result... 

Answers.

I always get answers when I'm face to face with my consultant who knows I have a need for information so I can process all of this. So it was a good morning to go to hospital for my weekly "can I have chemo yet?" check in. 

By the way, the answer is no, I am not yet able to have chemo. My platelet levels went even lower this week to 60-something. Apparently the levels can be different throughout the day so there's still a chance this next stage could happen. There's also, as the gap gets bigger, the chance that it might not happen at all. 

I've also had it confirmed that if my platelet levels were to go lower when on chemo, the treatment would be stopped. Though on saying that, the chances of that happening are quite slim - though it could happen. But they won't know until I start taking the tablets, I won't be taking the tablets until I'm healthy enough to. I'm currently not... so I'm in limbo. 

It's "very unusual" having low levels like mine too which don't seem to be moving. Diet doesn't help - so there's no supplements I could take to help boost things. 

The whole hospital process is becoming a more efficient use of my time - I get there, get my blood test done (which for the last two weeks has involved no queues), get my blood pressure, weight and temperature checked, then before you know it I'm called in to my Neuro Oncology appointment - usually slightly earlier too. Then we check regularly during the appointment if my blood test results are in (they never are) to find out the levels and whether chemo can start. Sit in the cafe with a cappuccino and wait to get a call for the next steps. 

I am a very patient person, so I'm fine with waiting though know it won't be forever and could be abandoned if there's too big a gap. Which also makes me wonder, as the chemo I'm on (TMZ) responds well to the MGMT in my head in killing off the tumour and is a positive thing, it'd be annoying if I don't get any extra help in that respect. Sod's law, isn't it? 

Oh and my consultant is fairly certain my rash is a reaction to antibiotics. So there's another one I'm probably allergic to. 

Chemo Evilness

I guess this journey into the unknown was due to bring up all kinds of oddities along the way as the toxic medicine makes its way out of my system, leaving behind little things to make sure I don't forget it. 

Because, ultimately, if you've never had chemo before, you don't know what to expect as you stop taking it. There are lists, long long lists. "You might have this happen" "You're less likely to have this happen, but you might" and so on. 

So let's do a new list. I have completed Phase 2 of this treatment (Phase 1 being my original craniotomy, Phase 2 being the steroids/chemo/radiotherapy for six weeks). Phase 3 is on the horizon but only once my body has recovered from Phase 2. So let's go into my Phase 2 side effects.

Hairloss. Predominantly around the area the craniotomy/tumour is, though I've noticed some from my hair overall. I used to have lovely thick hair, now I'm rocking a seventies prog look and am being indecisive. Not too worried about this one as it should grow back. Hats are my friend! 

Mouth Ulcers. A new one to the list. I developed the most evil of ulcers in my mouth, fortunately was prescribed a good mouthwash and a week later they've pretty much disappeared. This feels like a chemo side effect so I'm ready if more appear during Phase 3. Which they probably will. The worst two things about this was not being able to eat properly, and not being able to say my name properly when checking in at the hospital. Annoyances!

Blood in my mouth. Another new one - possibly related to the previous one, it has only happened once, possibly from me giving my mouth a good clean maybe? One to keep an eye on anyway.

Itchiness/electric shock feeling. Still going. Sometimes it likes to keep me awake most of the night, sometimes it gives me a night or two off. Definitely chemo related. Poison, be gone! (and please take away some tumour at the same time if that's not too much to ask, ok?). I've had MooGoo products approved to use on my skin so they're slowly arriving and making me feel happier. Feeling happier is a good thing and so much of the fight with this. 

Tiredness/napping. This cranked up a gear when Chemo stopped. Maybe Radiotherapy makes you tired, I think it does. Anyway, proper daytime naps are happening at the moment, usually for an hour or so. I'm not used to it, but I need it. 

The rash. Related to the itchiness/electric shock feeling, my skin is covered in hives (apart from my face) and they disappear at bathtime, reappearing further into the night as I'm trying to sleep. My only happy thing to say about this is I'm not leaving the house at the moment so if I need to sleep, I sleep. If I need to itch I slap a load of cream on my skin so I don't. If I get the electric shock feeling then ditto. A chemo side effect almost definitely. Willing to put money on it - 5p, mind. 

Here's a new one. My fingers do the typing, though sometimes they type something completely different to what I think I should type. I feel like it's something learning a new pathway, I can still type normally and quickly, it's just a weird one to keep an eye on. It's like forgetting words and that being a lot better, it's just a different part of the body. 

ANYWAY. That'll do for now. I do not feel sorry for myself in any way, I am getting on with things, but listening to my body. I have my Radiotherapy mask which I will take a photo of at some point because when you complete your treatment you're given it at the end. Daughter is horrified I am thinking about making it into a plant pot, whereas the Radiographers requested I send them a photo when it's done....

Forgetful Focus

Maybe it's because I'm well into the flow of hospital appointments and amazing friends (and family) taking me there, so I have other things to focus on. I'm getting a bit forgetful again. Nothing alarming or anything - just a general brain fog sort of thing. I'm not concerned. 

So, for example I think "oh this would make a useful blog post" - I get the laptop, I open Blogger and I start a new post. 

But that took too long - I've already forgotten what I was going to post about. It'll come back I'm sure. Probably while I'm mid way being zapped by the radiotherapy machine.

OH! I've remembered! 

I've been having low-grade CT scans this week. The monitor in the room has kept the scans of my head visible, so I've been going over at the end and admiring it. I'm no expert here, but you can see that the treatment is helping and the tumour is smaller, though I don't know which image they're comparing it to (as if it's before the main operation then of course it'll be smaller). 

But it's a nice positive. I've also had a couple of friends tell me about people they know with the same tumour I have who are still around four years later, back at work and living a vaguely normal life. Now THAT is a good positive thing to focus on. 

Anyway, I then thought maybe nobody knows what a radiotherapy machine looks like, so here's one from the Marsden. 

Let's Time Travel

 Let's time travel; not too far back, but back to a period I've thought a lot about lately. Not for any great reason, it's just lodged itself in my head - much like the music from ads on tv I'm not paying attention to, but who have lodged their earworm status successfully. 

So... back when I was at St George's and I had the operation, I was initially on a ward where I had to stay in the dark thanks to the dye injected into my head (so they could get bad tumour out and keep good brain in place I think). I got moved to a new room suddenly, with no reason at all. Two porters turned up and said "Okay, let's get you to your new room" which was a bit of a surprise. 

I didn't actually have to do a lot as they wheeled me there but it was yet another occurrence where there was no pre-warning, it just happened. I got used to that, most things were absolutely fine things. 

My new room was me and one other person - and once I was settled we had a good chat. Eventually we found out we don't live far from each other and as things move to the present, we're meeting for a coffee this week, so being moved was a good thing. 

We had an idea of what happened when on the ward based on noise and smell. I could only smell potatoes for a very long time - we wondered if it was a side effect of the operation as I can't imagine people on wards eating potatoes for breakfast (though it does sound good). The noise was different though, beeps and nurses coming to you for various tests and monitoring. 

Every morning at 6am a nurse would come to me. "Time for your blood pressure" "time for blood sugars" and the rest. At first I was the nice polite patient, sat myself up and lots of please and thank you's because it was the right thing to do. THEN I realised it was way easier to stick my arm in the air and they can do what they need to, with me adding a sleepy thank you at the end, which they probably didn't hear. 

It wrecked any sleep patterns I was trying to have, although being in hospital does that a bit anyway. Noise through the night, lights I couldn't work out how to switch off.... alarms going off by patients (like me!) and giving up in the end and making do as my needs were very little ones. 

I should add, everyone at St George's was brilliant - I'm not in any way complaining about any of this. Everything came back as a quite focused memory this week - and how I dealt with it. This could have been one of the first times I was aware of times of day, even if I didn't know what day it was. The not knowing which day being a side effect of the operation and tumour which is slowly sorting itself out now we're further down the line. 

St George's had an interesting food selection - different menus too, and fortunately my roommate had one. So when the nurses came to take our food orders I was able to choose diabetes-friendly food - which was usually an omelette and handful of wedges - which was, quite frankly. heavenly. 

If I was to compare their selection to St Helier, then St Helier wins hands down. They even mark low GI options on their menus and healthy choices. The selection there was way easier to navigate. Although maybe my memory is failing me again and they're all the same? But anyway. I looked forward to my food every day, except the day my eyes swelled up so much (an operation thing) that I couldn't open them so a nurse had to feed me. Fortunately the swelling went down by mid-morning. 

So yes, my general memory of this time is being wrapped in a blanket and sheet, sticking my arm out of it for the nurses and trying to get some sleep but failing.I eventually caught up when I was discharged - I got so much sleep - more than I'm used to. Then the radiotherapy and chemo kicked in and I wake up at 7.30 and that's it. I still get enough sleep which is good - and I know things will get worse as the treatment goes, so I'm taking my moments while I get them!

Where Did it Start?

 Laptop time again so it's easier to type and keep up with my thoughts - though also difficult to keep up with my tangents. 

There has been a lot of time to reflect on all of this, I'm five or six weeks in (if my sense of time is keeping up) and I'm looking back at things in the past that could be more of a brain tumour thing than a general day to day one.

For example, back in July we went to Australia. There are chunks of the visit I don't remember. It's very strange - looking at photos I try to place where I was and what I did. I get there in the end but it's not immediate - it's like looking back on a holiday that happened ten years ago. 

When we were in Australia we went to Rottnest Island and hired bikes. My bike was the worst, and also a bit lopsided as I only hired one bike rack. Obviously I fell off, husband found me with the bike on top of me trying to get untangled, and while that could be put down to the bike rack, it was definitely something I found a bit more difficult than normal. I switched bicycles with husband right at the end and cycled fine, so I think it might be the mismatch of machine and me a bit as well though. Bike rack? The thing you carry things on the back with. Can't think of the name. 

The journey to and from Oz I didn't sleep. That's not like me - I get little naps here and there but instead played a game the whole time. I had no patience for a film despite wanting to watch  'Belfast' . Little things like that make me wonder how much the tumour was already squeezing what was in my head. 

The key things which led to action were things I was saying in the week leading up to being taken to A&E. Disagreeing with things I knew were completely wrong. Saying things that were just bizarre. The people around me were worried, concerned, asking if I was okay. Of course I was okay, it's just menopausal brain fog, right? But as we know, it wasn't. But I had my answer. That was until husband phoned the GP and they told him to get me to A&E.

I suspect a lot of this is repetition, I'll go over it again and again looking for answers. Where did it come from? How long has it been there? How long before it grows back? I don't have any answers and I doubt I will. But my spirits will be kept up and that helps. 

I have also accepted that for the forseeable future I'll be taking steroids to keep the brain tumour from swelling too much (I think that's why I take them). So because of that I will have diabetes, though it is managed well. So if I accept it, then I don't have pizza or chocolate for a while apart from in moderation (like, a slice if I'm lucky).

You've got to pick your battles, and I think when I'm ready for the next round I'll choose it wisely. I'd rather have low level battles than higher as they feel easier to pick and choose. 

Radiotherapy started today and was quite painless and quick. Suits me right now.

And so it begins.

 Well, tomorrow morning it does anyway. Those lasers are going to blast away the roots and buy me some time. We've had good news today that the roots should respond to the chemo which is good and helpful. See, when they do tests for all the various things, you don't get everything back straight away. Sometimes it takes weeks - like now. Finding out that things have a good chance of working is a good confidence boost when you're hitting that feeling that it's going to be a really tough slog. 

Which it is - that doesn't change - but it's a bit of good news, and I'll take every bit of good news I can get. 

Overall I feel positive, a bit nervous and ready to start. Support is in place, lots and lots of it from everything everywhere (it definitely feels that way anyway). I'm nervous but once I've done the process the once it'll be time to get into a routine which will be easy enough. I'm lucky in that the radiotherapy shouldn't take longer than 10-15 minutes though tomorrow will be a longer one with it being the first session. 

I guess I'm moving on from the patient who was half asleep stuck in hospital, raising my arm for blood pressure/blood tests/diabetes tests when the nurses came into the room, to the patient who can escape but still has stuff pumped into her to kill off the tumour as much as we can. I'm accepting of that and that makes everything a lot easier to deal with. I'm sure as side effects of the treatment kick in around half way I'll start feeling sorry for myself and will wish for healthier days.

I also found out a few things yesterday and alas, entered the world of Dr Google. Never a good move. 

There's a good chance with this treatment I could end up incontinent. Oh joy. Well we can deal with that can't we peri/menopausal women? Let's just hope it's not too horrid. It brings back pregnancy reminders but of course I'd get the signal to my brain that I needed to go, so we'll have to see what happens there. Keep everything crossed oh toilet gods wherever you may be, and please don't make it too much hassle. Please. 

I'm likely to lose my hair at the front. I can deal with that, and if somewhere further down the line I'm rocking a good Dave Hill from Slade hairdo I will do it in style. (or at least, try, might be too tired)

The fatigue is the one I think will get me. I enjoy being tired and sleeping because it makes up for the YEARS I've not been able to sleep properly. New parent? No sleep. Obvs. Teething baby? No sleep, obvs - although to be fair she was always really good and only had a bad night a week before a tooth cut through so I think we got lucky on that front. The colic, lesser so. 

The one that won't leave my head though, the boyband The Wanted. Their singer had a brain tumour. So I went to see what type it was - a glioblastoma. He had 18 months. He deteriorated quickly at the end not long after his tumour had started to shrink a bit. So in some ways it's a wake up call - I know that if things seem positive that doesn't lead to the same outcome. Everything I'm doing right now buys me more time. People can live for 10 years (a very low percentage, but it does happen). I just need to keep strong and have lots of support. 

I need to read more information. Knowledge is power. It's also too much information and I might become irritating. I'll really try not to. Pinky promise.

Thoughts

I have asked the hospital the obvious. This is going to kill me eventually. Fortunately we have time, all being well.

So I'm not dwelling on it, as I know the outcome, just not when it will be. I can live with that. 

But just in case, I'm blogging it all so I don't forget anything - as the previous post says, I'm very forgetful at the moment.

The sense of time and how wrong I've been getting it says I've healing to process and I must be kind to myself. Easily done.

But within these thoughts are all the practicalities. We bought a house, shared ownership four years ago. So our mortgage covers 30% of the house for the next 25 years. 

That's a bit annoying. So I'll stick around a while, thanks. 

The good news is they're basing my treatment on ten year old data, so there's every chance that things have changed. 

 

But it's really scary.