I've got a Broken Face

Today's "uuurghhh" moment is my face swelling up.

Under my eyes - I think my days of using the MooGoo eczema cream may have to stop - underneath each eye is what looks like a roll of skin which is swollen. 

Fortunately I have plenty of creams I can use from the first chemo/radiotherapy sesssions so I'm not panicking in any way. 

Yet. 

I was on a lower dose of TMZ the last time which is why I'm not sure how I'll react this time. Keep everything crossed that nothing plays up! 

Ring, Ring....

We all got a bit lost in translation yesterday. Fortunately it wasn't a pain for us (probably moreso for husband as he was working) - we gave up after hanging around the hospital for a further hour and headed home.

This was actually the sensible thing to do as the doctor who had told us we'd get a result in 30 minutes meant we had to phone and check in to see - but we weren't told that. 

Which is fine. I don't do 'being angry with other people' very well. 

Husband phoned the hospital but nobody was picking up (they have a new system that they're breaking in), and eventually I got a call from our Neuro contact who explained everything which made a lot more sense. 

So we decided to go ahead and start chemo today rather than yesterday - and that I'll take a tablet on Saturday to make up for it. 

So we're all set, it's all fine. 

I'm waiting, waiting, waiting, waiting....

Here I am after another Monday at the hospital. Today was a bit different to the usual - aside from the waiting involved.

We arrived at the hospital, checked in and grabbed my blood test forms, to then wait for two hours to be called to have my blood taken. By this time my veins were no longer playing ball, after three attempts we got there. It hurt though, it really hurt. 

Back in the waiting room and we sat and waited for me to be called for my blood pressure, weight, all the other stuff I can no longer remember as I'm SO TIRED. Which took forever. Another hour? It felt like it. Maybe not. As luck would have it, I bumped into Nikki who I shared a room with when I had the operation, so it was nice to catch up and see how she's doing. Chemo really does take it out of you, though it looks like she's doing okay overall. 

After that I sat and waited to be called to the Neuro Oncology appointment, and was called, ushered into a side room and then sat waiting for a WHOLE HOUR. Which wasn't doing my already tired head much good. 

Anyway, the good news is that my various levels are now at the level the hospital are happy with so I can start chemotherapy. 

Except I was told I'd get a phone call. Which three hours later still hasn''t happened (I'm kind of glad we left the hospital, it was making me tired). Fortunately we're close enough to the hospital we can pop there when we drop the teen at Guides. Except it closes at 5.30pm. Will I even get a phone call before then? 

Adverts

Every other advert on tv is a cancer-related funeral care one. 

Every other advert on tv is a bank. They'd love you to leave some money to a charity (in your will) when you die.

Every other advert on tv is a chocolate one. This wouldn't be so bad if I wasn't fighting off a cold with higher blood sugar levels so chocolate has gone back on the not-a-chance list until things calm down again. 

Every other advert on tv is a takeaway service - like Just Eat or Uber. I get so many emails every day from Uber it's getting a bit silly. Uber, cool it down a bit, eh? 

I tell you what I could do with some adverts for - chemo-friendly eyebrow reconstruction people, hairline growing fast shampoo (as I could stuff several cushions with all my hair that keeps falling out). I had the most hair fall out today which actually did enough to block the plughole - that was a first. 

Today is also the last day of me taking all my medication unless it's decided that I need to go back on anything (and of course there's starting chemo whenever that happens). So I'm also wondering if this means my diabetes days could be coming to a close. That would be nice - if only to have a break thinking about what I'm eating... 

Forgetfulness

Okay, forgetfulness is well and truly back. My short term memory isn't great. Longer term is - though it's a bit weird. For example, husband asked what I'd like for lunch today - I said I quite fancied a croissant with cheese (as that feels quite a treat right now). 

At this point husband says I asked if we needed anything else and he said "bread" - though I don't remember asking it, but I do remember wanting to make sure we got some. So it probably happened, I'm just not sure. 

I would add as an additional "this might be why" as I've had this awful cold and am trying to stay away from everything - though I've hit the night 'cough-all-night-long' thing which is really irritating. I'm up several times in the night - mainly when the coughing won't stop. Being upright usually fixes it. 

I've actually got to the stage where I insisted husband sleeps downstairs so I don't disturb him in the night which might have worked. 

But my lack of sleep might explain why my head isn't retaining much at the moment. So do hurry up and recover, body. I mean, the last thing I want is to start chemo, but it's also exactly what should be going on. So let's get it underway with me feeling strong and ready to fight. 

Cold

It has taken over three months but I've finally caught a cold. My voice is croaky and deep, I have an annoying cough. I was up quite a few times in the night. It's not fun - though I'm pleased I haven't been ill before now. 

I'm also annoyed that I'm ill now and hope that my low platelet levels don't stop me from getting better. Meh.

Anyway, I'm taking it easy for a couple of days in the hope this'll sort itself out. 

Levels

Still not high enough. I knew this though, I'm happy as my levels were higher. Let's get to the next appointment and see what happens though.

We had a pretty long wait in the hospital though that was to our benefit. I've found out the reason I have to go on Mondays is due to them having cancer/chemo meetings on a Monday (I always thought it was a Thursday/Friday though). 

So we get to the hospital for around 9.30am in the hope the blood test room isn't too busy. The last couple of times we've got in straight away, though that might be due to hospital staff being on strike the previous week maybe? I don't know, just speculation there. After 30 minutes waiting I was called for my bloods, fortunately there was a vein found quickly and I was out of that section quickly.

So you queue for a second time in the outpatients part so the nurses/doctors can then see you. We had an angry lady we dealt with - she couldn't hear me. "I've just had a blood test, I just need to make sure the doctor knows I'm here" I told her - she looked at me with a bit of an angry stare and told me off. "Why didn't you mention that you've had a blood test?" when I quite clearly had - and had to get husband to speak for me. I am genuinely wondering if I've lost some hearing recently so I'm talking quieter than usual and not picking up on what people are saying. Or maybe it's them! 

I then asked about free parking. I got an angry stare again, not sure why. "are you having three treatments per month?" she asked, to which we both confirmed that I am. It eventually got sorted out. 

Anyway. We then waited until around 11.45 for the neuro appointment - so we've been waiting nearly two hours - and finally got called. We saw the male doctor we've seen a couple of times who confirmed my levels aren't high enough but he's happy with how things are progressing. While I hated waiting, it was quite good as we had the results through. We eventually left the hospital over two hours later. 

So actually, being made to wait was beneficial, I'd rather not be around hospital germs, though fortunately we've all got face masks on. 

Planning Ahead

The single most frustrating thing about all of this is that I can't plan anything in advance. I don't know when my treatment will start so I don't know if I'll be on a treatment or recovery week. 

So, for example the teen tells me that "Heathers is going on tour soon" - I can't commit until I know how I react to the treatment, so it's a "you're going to have to tell your dad" moment. 

I had a look at the Annie dates on tour, so far we can get reasonably priced tickets and we want to see Craig Revel Horwood as Miss Hannigan (as we haven't seen him in the role yet, just lots of other people) - but yet again I can't book - though there are two or three options here which aren't too far. 

Uuuhhhhhh!

Fortunately, Come From Away is on tour next year so I'm not thinking about it at all. Plus there aren't any dates announced yet. 

I want to go back to watching football matches (Spurs Women of course) - I'm not quite in the headspace to go now but when things get warmer if dates match up then I definitely want to try. 

I want to do what would have been normal before all this happened, I know my limits and I know I can't just book and go - it's annoying. 

I get the feeling my platelet levels still aren't playing ball. I got slightly annoyed the hospital wrote to the GP and said my throat had swelled up with my new antibiotics allergy (as it didn't, at all and it's guesswork by them as nobody tested me for it). BUT this means that chemo won't start until it does. It's annoying. 

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. 

Side Effects Check In

I guess a check-in is due on this - though it's better news than previous updates. 

Hairloss. Still losing hair though it feels like it's slowing down. Previously in the shower I'd have quite large amounts of hair fall out whenever I wash my hair, whereas these days it's a much smaller amount. My hairline is about 2cm higher, you can't see the scar from my craniotomy unless you look really hard so it all looks vaguely normal - though my hair is much thinner everywhere - especially underneath where I have the smallest of ponytails thanks to the lack of hair there these days. 

The rash. That has gone now - though I'm still taking a sleepy antihistamine at bedtime so I fall asleep quickly - and a bit of a rash appears then but disappears quickly (like it's reminding me that it hasn't quite gone yet). Nothing some aloe vera/good moisturiser doesn't fix anyway. 

Dry skin. Where it was just around small areas it's now around my body - but no irritation, I'm just making sure to drink lots of water and put lots of decent moisturiser on the area which seems to help. It's very dry, flaky skin which is a bit like dandruff, there isn't a huge amount of it but enough you notice it. One to keep an eye on.... 

Platelet levels. I've gone on about this one over the last couple of posts on here, but they're low and I'm wondering how low they're allowed to go once they're high enough to commence phase 3 of treatment. 

I think that's it right now - I'm almost a month since my last Radiotherapy appointment (how did that happen?!) so it's a good indication how I'll deal with the next phase. Whenever that starts... 

Platelet Levels

Okay, so here's my next question. I've been thinking about it way too much.

As I've gone on about for the last few weeks, hospital got concerned about my platelet levels and I was taken off chemo a week early. That was okay as I benefitted from the time I was taking it. All I had to do was get my levels up again and hope the evil rash would go away sharpish.

Alas, the rash loves sticking around and does still make an appearance (it's easy enough to make it go though), and I'm still taking antihistamines last thing at night to help me sleep and to help the rash disappear (it's probably the former than the latter here though). 

SO. If my platelet levels raise high enough that it's fine to start phase 3 with the chemo, that's a good thing. However, if being on the same chemo then lowers my platelet levels (and I should add here, I'm being put onto a low dose to see how I go with it before it gets to the more powerful one), what happens next? Because if my levels were low and only just recovered I feel like they're likely to go low again rather than keep raising.

Unless it's the antibiotics I've been allergic to all this time. But I don't know that because nobody tested at the time. Sigh. And I didn't ask because I didn't think about it. 

So this is why I've been thinking about it way too much. Will I start and then it doesn't work out so we go onto a different plan? Does anyone actually know? 

Steroid Reduction

This morning I've had my first steroid reduction, down from 2mg to 1.5mg. This is going to be a long, slow, gradual reduction as if you do it too drastically you can end up having to increase your dose back to what it used to be. It's a week by week thing, which quite frankly if you're me, each week is flying by but now we're talking about reducing medication it feels like everything is a million years in the future. 

I'm twiddling my thumbs waiting to see if my head wants to have a headache or just get on with things - so far it's the latter. Keep it up, head. 

I've noticed over the last week my appetite has gone back to how it was before all this happened. On Saturday I ate so much more than usual I felt uncomfortably full - and that was the first time I had done that since last October. My appetite was fine, I just couldn't eat a lot at once - whereas this was a proper stuff your face I-NEED-FOOD sort of thing 

The only thing which makes sense is the chemotherapy and radiotherapy leaving my system - that's another one to look into. 

One thing I'm mentioning now, I'm becoming a bit forgetful again. Random words, chatting and stumbling over words. I think it's tiredness rather than anything more serious, but we all know what happened last time when I thought it was menopause rather than a bloody brain tumour. 

Holding Pattern

The MRI scan results from last week weren't completely in, just partly in. So we don't have all the answers, we have some. 

Plus we realised we never asked what the objective of all of this was when the journey started all those months ago. My little brain of storytelling felt that we'd be told the tumour had shrunk when they compared it post-operation to now because that felt like the obvious conclusion. We found out today that the tumour is still the same size as post-op, hospital are happy with this as it hasn't grown and my side effects are the ones I keep going on about on here. 

So I'm meant to feel happy knowing things haven't got worse. Oh, and to add to that, what we called my chemo rash might be an antibiotic rash actually - it wasn't tested when I was having all the blood tests of the last few weeks so things are vague there. Though I won't be having antibiotics this time so if I come out in a rash then we know it's chemo related. 

So I'm feeling a bit in limbo, stuck in a holding pattern. Waiting for things to start moving again. I had a blood test this morning and my platelet levels are still low - too low to start chemo right now. I'm that aeroplane trying to land but being told to wait a bit longer until it really is time to start the next part of the process. I'm not frustrated by this - I felt like it might happen, that there'd be a delay. So I'm back next week having another blood test to see if I'm able to start the treatment or not. 

I'm looking into extra ways to increase my platelet count. One way is folic acid though you have to be careful not to have too much as it can interfere with B12 levels. Seeing as I'm enjoying a lot of Nooch at the mo, I'd like to think my B12 levels are doing okay, though I do feel I should have more. 

ANYWAY I have good news (this sounds like I don't think the brain tumour news is good news, I'm still processing it, okay?). I am being weaned off the steroids. It's a slow four week process which may or may not work, the only thing I could say was "I'm celebrating with a WHOLE PIZZA" which probably sounds like I'm not taking this entirely seriously (I really am), I just miss pizza. So that's good news - hopefully. I'm not banking everything on this as things have a habit of going wonky, I'm keeping my fingers crossed and that'll be that. 

I've also been promised I'll get a copy of my head scans on a disc. I joked "amazing! That'll be a fun movie night" because that's how I'm still dealing with this, humour. Got to keep it going for the sake of my sanity even though I feel a bit shellshocked with it all. Time to reflect a bit probably. 

Antihistamine Reduction

I've reduced my antihistamine tablets to one per day (in the evening) and things seem to be okay 

I still get a rash on my legs though it disappears quickly (especially in the bath) - so I'm not too worried.

One of my other issues is my low platelet score. Now I have my scores I can see how much they dropped by. I can also see a huge great whopping bruise on my arm where a cannula was fitted yesterday. 

And I can't help wondering if that might delay things. Or then again it might not.