Saturday, 22 August 2015

Quite frankly

I think having cancer has toughened me up. I think people who know me would agree, I was a bit of a push over BC, too soft, this has changed, or is rapidly changing should I say. Something else I wasn't warned about was my new found intolerance of people, quite honestly I find myself becoming very irritated by certain things and situations and I'm finding it harder and harder to keep it in. BC I would smile and then have a moan to myself after, not so much anymore. Don't get me wrong, my most used sentence is still "I don't mind" and when I say it now I genuinely mean it but I'm not as meek as I once was, is that what cancer does? Does it make you cut out all the crap? Bye bye people pleaser, hello new life- MY life my way?

Just over 3 weeks ago I was dying. I'd started thinking about, well sod it I will just say it, I'd written down instructions for my funeral, not something I'd ever thought about before, not seriously, but why would you at 32?  things have obviously changed, well my whole entire life as I knew it 3 weeks ago has changed. I never ever expected this and  I can't even write how elated I am, but, there's always a but, it's a huge thing to try and get your head round. I'm waiting for this bubble to burst, every time a hospital letter comes through the letter box my heart starts pounding, unknown numbers on my phone send my anxiety into overdrive. 

Shouldn't everything go back to normal now? Surely it's all done? Until I'm told otherwise I'm ok? Isn't that what happens? Isn't that what's happened to me?

This is what happens or this is what some people believe, mainly people who have lived a so far fabulous life and have no idea, not the faintest idea of what C does to you. 

Actually the aches and pains that I had whilst having "bone mets" are still very
much present, that didn't disappear just because I've been down graded to stage 3. I could still quite easily stay in bed all day because quite honestly some days it's an effort to go put my lenses in and walk downstairs to the make a cup of tea, that is of course after I've put my lymphoedema sleeve on because just accidentally turning over in my sleep and lying on my left arm even for a few minutes makes it begin to swell and ache.

I can't even begin to write about how this has taken its toll mentally because I don't even understand it myself.

Yes I would love to be back to normal, that's all I want, but quite frankly it just doesn't happen like that.

Tuesday, 18 August 2015

Cancer Treatment - the things they don't tell you about chemo

Right so you're here, in the gang no one wants to be in, let alone someone of your age, I'm guessing that you're friends are either settling down, getting married or having babies, whatever they're doing it couldn't be any further from where you are right now. This is shit, I get it, but hopefully, just hopefully I can shed a light on some of the things the hospital don't tell you..... Deep breath girls...some of its not pleasant....

May as well start with chemo...

Hairloss and sickness -this is what you've been told to expect? We wish. We wish this was the worse part... Sorry girls

Manky bloody mouth- you need difflam, You probably won't automatically get this prescribed this but it is THE ONLY thing that sort of worked for me, oh and salt water, which isn't as bad as it seems, as you will have ZERO taste.

Do not wait until you start feeling ill, have aches or pains-start taking pain relief ASAP and do not stop. Don't be fooled that you actually feel ok, that's just the meds doing what they need to, and you don't need pain on top of everything else -DONT BE A HERO.

For anyone in Tax or having filgrastim injections you may need to speak to your
Oncogist about increasing the pain relief, I was told to expect "a little bit of discomfort" in my pelvis, hips and back. By cycle 3 I was lying in a hot bath with a bottle of oramorph -don't be afraid to ask for something stronger.

Yes your hair will fall out, maybe not as dramatic as you see on TV but it will
come fairly quickly, and it's a massive pain in the arse, it gets EVERYWHERE, in the bed, all over the carpet, in your food and in you drinks. Then there's the pain of your hair follicles clinging onto any last hope they may have, and yes you guessed it, this is rather uncomfortable. Think tying your hair up tight all day and then letting it down, remember that feeling? Well that's what your head feels like 24/7 after the first chemo. If you are told like I was "ooh don't shave it, it'll be painful" the chances are that they 1)don't have cancer 2)have never had cancer and 3)haven't got a bloody clue what they're talking about. Shave shave shave, that's my advice, yes you look like a prat (or your boyfriend in my case) but once it's done it's done, it's actually fricken bloody fabulous if your in the menopause and you can literally have a 3 minute shower -and loosing hair means loosing hair -EVERYWHERE!! Probably the one bonus of this, throw those raizors away -you won't be needing them. Oh and don't panic if your nose feels slightly weird -that's your nose hair falling out - can be quite cold...

GO TO THE DENTIST before you start treatment as you can't have any dental work whilst on chemo. I didn't, (I'd been 5 months before as I always do) but no one told me to go get checked, and to be honest going to the bloody dentist was the last thing I was thinking about. I wish I had thought about it, my god, there are no words. Two weeks after my first chemo I had the mother of all tooth infections, it makes me shiver thinking about it, I even contemplated pulling the dam thing out. And so I was given codeine (and then constipation) anti-biotics and my 2nd chemo was delayed for a week, oh and I was walking around the streets at 4am like a crazy lady.... Please, go to the dentist!!

Paint your nails. Apparently UV light does something to your nails and teamed with chemo means that you could loose your nails. So painting them a dark colour is meant to help prevent it. In my blonde mind I thought that this was a good excuse to have gel nails. gel nails where you have to use UV light.... But in my defence I only did this whilst on FEC, once on Tax I just painted them black/dark red etc and I didn't loose any! Well I lost my big toe nail but that's because I decided to go to my cousins wedding in stupidly high stiletto's.... Don't do that, it's not big and it's not clever.... Oh and as with anything related to chemo, there's the pain, similar to trapping your nails (and toe nails) in a door......

Eating and drinking can be quite tricky, but do not eat anything that you usually love because you will never ever want to eat it again. For me it's Greys Herbel Tablets, they were my all time favourites, now they taste like chemo, urgh, oh and summer fruit squash, I can't even have it in the house. Actually this can be said for smells ie don't wear a perfume you like either...

Save you veins. Keep hydrated, especially when having bloods or anything to do with sticking a needle into your vein, the more you drink the juicier your veins will be and therefore easier to gain access. Oh and get some hand warmers or heated mittens, or just sit on your hand to warm those bad boys up, because let's face it, no one wants a needle in their foot....

Taking steroids after midday should be made illegal. How anyone can take these for "fun" is beyond me. Take them as early as you can. Put a reminder in your phone, write it down and stick it to the fridge, tell your husband/partner whoever you have to, to make sure you don't forget to take them. Do not take your steroids late at night. Well you can if you want to stay awake all night, climbing the walls, eating everything in sight and well, generally acting like a maniac, steroids are not fun, and they most certainly don't make you look cool. Steroid moon face is inevitable, there's no way around it, just try not to punch anyone who tells you that your face isn't massive... They're obviously lying, (and probably laughing at you), hello "Roid Rage"

Weakened bladder. This was 100% NEVER explained to me. And so teamed with sleeping pills and pain meds, I'm sorry girls, this puts you at a high risk of wetting the bed. Highly embarrassing and no talking your way out of it or blaming anyone else... I guess you have to weigh up the pros and cons, I love to sleep, I'd sleep all day if I could, I love a nap, a Sunday snooze, afternoon nap, post meal snooze, disco nap, rainy day sleepy time, duvet sofa days, I even take a pillow with me in the car. But thanks to cancer this all came to an end. Sleep became something I used to do, along with a huge list of things that cancer took from me. So when my doctor suggested something to help me sleep I could have kissed him. So what do you do? Sleep like a baby and risk peeing the bed? Or stay awake all night, every night and think about nothing but cancer for hours on end, oh and cry. So I choose to wet the bed, there I've said it. The hospital won't tell you this but it's honestly one of the most embarrassing things that's ever happened to me, and trust me, I do a lot of stupid things. The first time it happened I burst into tears, I was absolutely mortified, I'd never even farted in front of my boyfriend Arron, I don't think there was anything he could say so he just laughed. I don't think he finds it as funny anymore, well actually I think he's just used to it now bless him. Sexy isn't it? I think he's rather happy that I can no longer wear my onsie to bed, that is a massive no no - way too much work trying to get that off in a hurry, but so are play suits, and they're so pretty (sad face). A positive I guess is that you get the bed to yourself when you go away with friends (thanks 7 Bitches) -no one wants to share with piss pants.... It's a tricky choice but I'd take sleep everyday, I'm just not allowed to cock my leg over Arron when I sleep anymore....unless he's in the bad books....mmwwhahaha 

Zoladex - the massive eye-watering monthly implant that turns off those bastard ovaries that contributed in trying to kill you. Firstly it's not an injection, well it is, but it's an implant with a massive bloody needle that you have to have for 5 years, 10 if you're "lucky." Whilst knowing that your ovaries are shut down is nice, menopause at any age let alone early 30's is not. I find that week 4 is my worst week, hot flush central, raging hormones, spots and achy body.... Sadly because this is a chemically induced menopause I don't think that the side effects ever go (cheers cancer). So if like me you go through menopause with your mom chances are that she will be symptom free a long time before you are.... To be honest I've not really tried alternative medicine but I do have a silk pillow case and a chillow pillow, they go everywhere with me, oh and also my fan -animal print of course!

Tax mental breakdown - tax chemo is bad-ass. It's harsh. It attacks your entire body, mainly your bones, but you can take meds for that, nothing can prepare you for turning into a mental person. That's the only way I can describe it, at the time I couldn't see it, "luckily" (there's that word again) a couple of my gang members just happened to be bat s**t crazy at the same time and we put two and two together. Again, this was not explained.... So a fair few arguments and smashed plates later I could laugh about it.... Just prepare yourself if your anything like us you'll be crying well sobbing like a teenager because your friend hasn't replied to your text message and so obviously it's because she doesn't like you.......

Chemo brain or as I put it down to blondeness aka "Aimee-isms." First thing do not panic you don't have dementia,so when you realise that your empty plate is in the fridge and the butter and marmite are in the sink this is completely normal. Also repeating yourself time and time again is to be expected. On occasion this can be advantageous as you do genuinely forget things, now if that's things you didn't necessarily want to do or go it's not your fault it's chemo. Don't be alarmed when you're telling a fantastic hilarious story and you forget what your saying halfway through a sentence this does not mean that the cancer has spread to your brain you have chemo fog. And for all the haters out there it's listed on the Macmillan webpage so it's real.

Obsessive buying - i'm not sure this counts as a side effect but it seems to happen to everybody I've spoken to who is going through chemo. The fact of the matter is that you can't stop buying things. You have a lot of time of time on your hands but fear not for the times when you can't leave the house there is the Internet. No I'm not condoning buying shed loads of things but if you need new shoes then you need new shoes, I'm also not condoning lying but if you were to wear your new shoes outside just to mark the bottom then technically they're not new and you've worn them once, chemo brain can also play a big part in this "side effect" as you may not even remember buying them… 

So before this turns into a degree dissertation I will leave you with a list of programs that got me through my summer

Breaking bad 
Orange is the new black 
Grays anatomy
Peaky blinders
EX on the beach
Mob wives
Downton Abbey
Keeping up with the Kardashians

Happy viewing xx

Oh and PS you WILL get through it, as tough as it may seem now, milk it for all its worth!! This was me Xmas day -23 days after my 8th and final chemo - bald and bloated as you like but I had THE BESTIST Xmas ever and was able to eat, drink and defo be merry....

And 9 months on I feel like this.....

Sunday, 16 August 2015

Time Hop -the big hair fall out

Tonight I saw something on my Facebook time hop from 15th August last year. It was about getting to that point where I needed to shave my head. 

Bloody hell, Two things -
1. Was that 12 months ago?
2. How on earth did I get through chemo?

Ok so 3 things -why the hell hasn't my hair grown back already??

Wow, I can't believe it, I have no idea how I even got here. Someone recently asked me what advice I would give to someone who's just had that devastating news and was about to start chemo. What would I say? I would probably start with a big sigh, and say that they can do it, you don't have a choice and there isn't anything that can prepare you for it. Ask questions and join a support group. And then sigh again and probably well up.

My little coven (aka 7 bitches) have been discussing this tonight, looking back at last summer, old pictures, most of my treatment has been recorded with pictures, I still can't work out if that's a good thing. Sometimes they make me realise just how far I've come but then other times they provoke an unwelcome emotion. Having my coven helps, today both the girls and the pictures help. 

So this is it, my hair diary....

30th June 2014 -just washed, dried and straightened my hair for the last time.
After I took this photo I burst into tears. There was no going back, everyone I knew would now know that I had cancer, the fear of the unknown was setting in, in less than 24 hours I would be having my first chemotherapy.

1st July 2014 - Dreaded Cold Cap and 1st Chemo.
At this point the cap had been on for a few hours, before this point I'd cried, felt unbelievably sick and wanted to take it
off. The pain of the cold cap is torture, I did it once and it didn't work, I lost my hair anyway (secretly relieved), I have no idea how people manage to do this 6,7,8+ times, (Sarah Perry you're baddass).

This was taken on the night of my first chemo, Arron said that he could tell that I was starting to fade as I was sinking further into the sofa and was starting to become very spaced out...

Behind that smile I was terrified, probably the most scared I've ever been in my whole life.  This smile was now to become my mask, on the inside I was crying hysterically. At around 2am the next morning I felt the full effects of my first chemo, it's a very strange feeling, it feels surreal almost out of body, the sickness is nothing I've ever experienced before, ever. It's nothing like a hangover, stomach bug, gastroenteritis, it's indescribable, vile. I told Arron that I was done, I didn't want anymore.

22nd July 2014 - The fall out begins
After chemo 1, I lost a fair bit of hair, it was everywhere, Arron tried to hide it and I would often catch him scooping it up when he thought I wasn't looking. My sister Hollie had the unfortunate task of washing my hair for me as I didn't have the energy to do it myself. This was heartbreaking, I'm crying now just thinking and writing about it. Her hands were visibly shaking, she was terrified that it would all come out, I never thought that my little sister would have to do this for me.

In order to try and save my hair I could only wash it once a week, couldn't blow dry or straighten it, couldn't tie it back, and may as well forget about brushing it. Sounds strange but I was very conscious of it, not particularly how it looked but about it falling out. I would try and sit up straight and not have my head resting on anything, this made my neck and shoulders hurt, I couldn't sleep because I was conscious of moving my head of the pillow and pulling it out, was hair that important? Part of me wanted to just shave it off but having had long blonde hair for most of my adult life this was very scary. Hollie then asked her friend to cut it for me.

I insisted on keeping my glasses on because I looked bloody awful.

Over the next week my 2nd chemo was delayed due to the mother of all tooth infections, second to Tax bone pain this was one of the most horrendous pains I've ever felt, probably because along with this I had a number of other things going on too...

29th July 2014 -2nd Chemo 
There's that smile again. No more cold capping for me, I'd lost too much hair, (secretly relieved). But by now the pain had started to set in, it's almost like when you've had your hair tied up all day and then you take it down, but imagine that all over your head, all day, all night. Plus of course the other real side effects of that particular chemo -mouth ulcers, thrush, tonsillitis, nausea, vomiting,UTI...

That day I also picked out my wig, from a book so couldn't try it on, the options were very limited for someone my age as most were what I would call typical old school wigs -think 80's short slightly curly... Maybe ok for someone in their 60's maybe? I was 31. Luckily I managed to find one called Stevie, but he had to be ordered so I couldn't take him home that day.

28th August 2014 -enough is enough
Everyone around me, including the hospital kept telling me not to shave it off,  I'd be too upset, it would be more painful than at the present time. I woke up that morning brushed my teeth and couldn't believe what was staring back at me in the mirror. This was the first time I'd noticed just how ill I looked.

I just stared at the mirror, and at 10:49am I shaved my head. There were no tears, no pain, just relief.

I didn't like it, but it was more comfortable, the pain had completely gone, it was the middle of summer and bloody hot, plus I was in a chemical induced menopause and having hot flushes every half hour, ok maybe not that often but it felt like it, so being bald was actually quite comfortable. Something else that no one seems to tell you is that when you've shaved your head you stick to your pillow like Velcro!! Amen for my silk pillow, not only could I glide my head through the night but it actually stayed nice and cool.

Then I had an impromptu wig party. Well basically everyone wanted to try on my wigs, I say wigs, because I developed a new obsession -buying shit loads of wigs, some would arrive in the post and I had no recollection of ordering them...

Wig party

Its amazing how different you feel once you're wearing a wig, for me clothes seem to look better, and surprisingly not every outfit goes with a bald head...

Stevie -my NHS wig

The wig that JoJo picked 

Brown hair don't care...

Grey matters....

The obsession continues 
Whilst wearing a wig is nice at times it can be a massive pain in the arse. Itching, sweating, unbelievabley hot (teamed with the sweats is not a good look), having to be weather conscious at all times, having to designate someone to be on "wig watch" for any minor (or major) mishaps, constantly checking the mirror (if wig watch person is AWOL or if your on your own), body contact with others must be kept to a minimum -I've lost count of the number of people who have gone in for a hug and have pulled my wig back...

When in the right frame of mind I felt ok going bald, this was mainly before I lost my eyebrows and lashes, I don't think that I ever went out in public sporting the generic cancer face, and this is why -

 The times when I did go out or let people see me bald took a lot of planning. As I've already said, not every outfit goes with a bald head. To people on the outside they might claim to be jealous that all we have to do is put makeup on and get dressed, ie no washing/drying/styling of the hair. Little do they know that it's actually taken twice as long, a lot of tears and many outfit changes, plus when you get home it looks like you've been broken into for all the clothes thrown around your room.

The final head shave was on Xmas day, my head was a ball of fluff, even Arron suggested one last shave, and bless him he shaved it for me -Happy Christmas!

Since then it started growing fairly well, not as well as I'd hoped -it didn't grow down my back overnight with soft blonde  curls, but it's growing. 

2nd May 2015 -first hair cut

And so it keeps on growing, slowly. I've been asked if I've had it highlighted, sigh, but that's just how it's come back. The ends now look lighter, and Ive achieved the 14 year old boy look of the 90's. Is it the end of the world? No. Do I like it? No. But at the end of the day it's only hair... Eyebrows, however are a completely different matter ...