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. 

Books

So I have a cold. I cough all night, so much that husband slept on the settee last night so he'd get some sleep. Me and colds never get on well and this is no exception. 

It's so boring though. I get tired - I spent a lot of yesterday napping and fell asleep on the settee last night, waking up at 10.30pm and being really confused as to where I was. 

Today I've had a bit more energy so decided it was time to sort out the bookshelves because that's a really sensible thing to do when you spent most of the previous day sleeping. Obviously I've got half way and I'm really tired. BUT! I have bookshelves which have books with the same coloured spine and it looks so much nicer. Let's not mention where I missed a few books, I'll work on that another time. 

This was all inspired by me knowing I have a book on pancake recipes. Except it's nowhere to be found. I am putting it down to delirium induced by this cold. It's bumping up my blood sugars again so maybe I'm hallucinating and it never existed and was just a knitting book. 

The plus side is I've found loads of books I forgot I had. 

The down side is I've got to put the books back on the shelves. 

The biggest bonus is I've got a load of books to read so I can't complain! 

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. 

Cancer

The teen told me that both myself and her dad didn't say I had cancer. We had been protecting her so much that I guess that slipped our minds - we'd refer to Greebo as "my tumour" but that doesn't really say a lot. 

Heck, even I've learned about my tumour and stages over what I thought I knew. 

So we're sat somewhere (probably a National Trust cafe having a baked potato) and mentioned "my cancer" and my child kept quiet for several months until mentioning it late last week. 

There's me thinking I had been quite open talking about it too. 

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. 

Performance Status

This is a new one. Got a copy of the latest letter from the hospital to my GP (always make sure you get copies, you learn a lot about yourself) and it has a Performance Status for me. 

ECOG Performance Status 2

Karnofksy Performance Status 90

These are both excellent - an ECOG Performance 1 means things are really normal.

Karnofsky Performance 100 the same. The fact my scores are so close is a good thing - if it was the opposite things would be way more serious. This gives me another question to ask at my next hospital visit too. 

This has given me a much needed cheer up (I wasn't too miserable though) - I feel like there's some hope or light at the end of the tunnel.

Legs

Okay, this is interesting. Since I started this journey way too long ago I've had a heavy, cumbersome feeling in my thighs. Walking upstairs has been difficult later in the day - I've previously described it as like wearing a diving suit and being held back by the weight of it. 

Every Tuesday I've cut back by 0.5mg of the steroid I'm taking - and one of its side effects is making your leg muscles feel as I've described above.

This week I'm down to 0.5mg, the lowest I've been on since all this started. Last night I went up to bed and made it upstairs like I used to - there was no heavy feeling in my legs. It felt normal - pre-tumour normal. I got to the top of the stairs and felt like things were how they used to be.

If things go back to how they were (which is possible), I'm glad that I could feel 'normal' again so quickly on a lower dose of steroid - that makes me wonder how much my blood sugars could be affected too. 

I've described this as being like the triangle with taking photos* - you change one bit of medication and the other two parts need to be looked at as well so things don't get really wonky. 

I know this is a positive thing overall but doesn't really change anything, I'm taking the positives though, it's a good mental health thing. 

*technical term there

Stuff

Oh you know, there's only so long you can go on about missing hair, thinning eyebrows and flaky skin before you run out of things to ramble on about. 

That's okay. I guess if anyone read this and came across it in one day it'd be a bit repetitive. 

I'm finding that my thing at the moment which is really getting to me is loneliness. Which considering my sister and nephew came to visit us at the weekend is a bit ironic - we were busier than usual but I wasn't really - I sat watching. 

On saying that, they had a house-wide game of hide and seek which was very funny - husband and I were both amazed there were that many places to hide here. I didn't join in as I felt tired, but supervised (and apparently looked quite guilty like I was covering up for someone hiding - I wasn't) and laughed at my sister hiding behind the door as she wanted to watch tv rather than join in with them. 

The loneliness is weird. Teen is on half term and needs time to decompress after six weeks of school - I get that - whereas I'm on my fourth month of being at home and hoping that I can go for a walk down the hill to the local cafes at some point (which I'd talked about with teen). I'm definitely needy because of this. Teen did actually tell me to stop being like this - I am now worried I'm making her feel guilty because I don't want her to feel that way, but I'm pleased she was able to speak up. 

Ultimately, all I need is someone to walk with me to the bottom of the hill as my confidence levels are pretty low - the last time I did it was on Saturday and before that it was December (mainly due to the bad weather). It's the coming back up the hill which gets me - my legs still aren't great from being on dexamethasone (now weaned back to 0.5mg!) and I have to stop as they get wobbly - I feel better being with someone than on my own. I'm also a lot better walking where it's flat - so once I'm down the hill it's much easier to deal with. 

So yeah, half term is a bit weird right now. Hopefully tomorrow and onwards things will be better. 

Rashly, Flakily

Oh. Interesting. I forgot my evening antihistamine last night - the only one I take these days.

This morning I had no flaky skin. No "hello, I am a rash" on my skin. 

Which is quite interesting. 

Hairy

It feels like a hair-focused week this week. 

I've been doing a bit of Googling about my situation, as I'm not sure if my hairloss is permanent or not. Some sites say yes, others say no. The consultants say it'll grow back, the nurses say it might not. You see how this gets confusing now?

I've learned not to take anything to heart and that I'll probably get a few different answers to the same question. This seems to work quite well as that way I'm never disappointed, or at least if I am it's short-lived. It wasn't that long ago I was being told I'd have "total hair loss" with the chemo I was on. While I'm not a member of the medical profession, the site of my hairloss is where my radiotherapy beams were targeted - nowhere else. (oh and the exit site too) 

You can end up taking so much from someone's words and ultimately, there will be statistics that this is based on which they'll tell you which you then find out aren't your statistics. 

So it's actually easier to go on a day by day basis and have zero expectations. It works a treat for me - and the pressure is also off. 

Whether things change in the future as the treatment goes on and the next phase starts is another matter altogether, but we'll cross that bridge when we come to it. 

Anyway, it's half term now. I get to hang out with my child for a week if she'll let me - apart from on Valentine's Day as she's going to hang out with her friend as they're both "Single Pringles" apparently. 

Hair We Go

Last night as I was getting ready for bed, I was in the bathroom with my reading glasses on - something I often do as I'm tired and actually just need to be able to see. However, reading glasses are stronger glasses so I can see a lot more than if I was just using my regular ones. 

My H&M long cardigan wasn't looking its best. As in - it was covered in grey hair. My grey hair. So I removed the cardigan and stroked it gently where all the hair was. There's still quite a lot... so I'm still moulting. I'm wondering if the hairloss gets worse when I wash my hair - though I'm still using very gentle baby shampoo rather than anything which could react in some way - even though my scar on my head has healed. 

Anyway, there were clumps of hair all woven into hairballs, serving no purpose other than to remind me my hair is getting very thin (after years of glorious thick and fine hair). Which is something that I'm more than aware of... and again, I am accepting of and it isn't a problem. 

Teenager's favourite thing to do right now is rub my back and collect loose hair then show me just how much there is. We might as well stuff toys with it there's that much! 

Although I'm not sure what the toys might look like..... 

Steroid Reduction Update

BTW, decreasing to 1.5mg last week was fine, so I've decreased to 1mg this week. No headaches in the last week, I'm hoping for the same this week. 

If I get a headache then the Steroids will have to be increased again. 

Chatting to my sister on the phone and I compared this to learning how to take proper photos on a proper camera and the triangle rule where the three main parts of the photo have to balance to get the right picture. So they have to balance my medication so I don't have a seizure/hypo/anything else that's possible with these chemicals. 

My Memory is Working Too Quickly

It's irritating. I can't keep up with my thoughts. 

I think of something, I'm mid-scroll. I stop what I'm doing and log onto the rest of my phone. I look blankly at my phone. Which app was I looking for to find the answer? I only thought about it a few seconds before. 

Most of the time I remember or the memory comes back eventually. Sometimes it doesn't - but I figure it can't have been important. I mean, daytime tv googling is probably what was going on rather than anything deep and meaningful. 

But I can't remember if it is! So I'm just assuming. Which is fine - less pressure. 

This has been the last few months of my life - it was a lot worse before the operation - which I put down to menopausal brain fog - and possibly still would now. It's only when I get irrational and arguing against something I know is wrong that alarm bells should ring. But then who knows when that's the case? 

I'll almost definitely deny it if things are as bad as right before I had the operation. How difficult? 

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. 

Let's Have a Dry Skin Update

Firstly, I'm not worried about it. I can see that dry skin is a common side effect when you stop chemotherapy and radiotherapy. 

Up to now I thought it could be something else (HELLO DR GOOGLE!) but now it feels more like a condition called 'Topical Steroid Withdrawal (TSW)' - which also doesn't feel like a fit as I'm still taking steroids, but feels like we're in the right sort of place.

Evidence!

 - the rash. This is part of TSW

 - my skin is flaky - a dandruff like sort of flaky. I collect dandruff-like skin parts in my clothes, amazed at how much my skin flakes actually create. To help counter it I'm putting on plenty of MooGoo Udder Cream which helps. ALSO - "Our Skin Milk Udder Cream is also used in Oncology hospitals and clinics across Australia as a moisturising cream for dry and damaged skin following radiation treatment and chemotherapy." So when the time came to check creams with the Oncology department this was approved quickly - and I had an order placed for the following day. 

So this is what we thought was probably a chemo rash (taken a few weeks ago), though could be an antibiotic rash - maybe it's TSW. However, now the rash has gone the skin where there was a rash is flaking, dandruff style. It's the skin healing and getting back to how it was, there's no indication how long it will take before it gets back to normal (which is normal). 

Now for the grim bit. My body is so good at collecting all the flaky skin that I can see it in the bathroom on our mats and on the floor, so can imagine it's just as bad in other places (under t-shirts, pants, trousers, etc). Nothing a wash/vacuum of the area won't fix, but I'd much rather not be doing that - it makes me tired anyway. 

A lot of this feels like guesswork, so that appeals to my 'must know everything' nature. 

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? 

Eyebrows

 "Mummy, I hate to have to tell you this but your eyebrows are looking really thin these days"

said the teen. She's right. I'm not vain enough to do anything about it (yet, I'm still admiring my new hairline which is 2cm higher than it used to be) but I have noticed how thin and shapeless they look. Of course, one of the questions I should have asked is "when can I have tattooed eyebrows" although going on what the hospital said about proper tattoos I suspect it'd be at the end of the treatment anyway. 

Which would mean I should do without because the idea of me drawing my eyebrows on fills me with many comedy laughs as I can't imagine I'd be very good. I mean, my hands are REALLY shaky as it is.