Wednesday 26 November 2014

The one where I feel ok about losing a boob...

When I started writing this blog I knew that I wanted to portray my story in a positive way, I have made it through the worst year of my life and I've coped so much better than I ever imagined.  I know I've moaned a bit about chemo in my previous posts but even that was so much easier than I expected, I felt poorly for about a week after each dose but I still had two weeks of feeling pretty normal and I could get out and about, see my friends, go out for dinner, all the normal things.  My mastectomy operation posed a new set of challenges and I wasn't sure how I was going to deal with them.  I knew right from the start of treatment that I would need to have a mastectomy, as I was having my chemotherapy before surgery I had about 5 months to get my head around it.  I felt sad about it but that was about all I felt, I had a lot of time to think about my emotions and how I might feel after the operation, but even then I still didn't feel anything strongly. Some people feel angry at their body for letting them down, some people can't touch or look at their boob, but I never felt like this, I just felt a bit sorry for it, as if the cells in it had just got a bit confused.  I didn't feel an overwhelming urge to have the cancer cut out of me, it all felt too abstract to get my head around, that this lump was trying to kill me.

During chemo my Oncologist was so happy with the way my lump was responding (getting smaller) he sent me back to my surgeon for a consultation to see if she wanted to operate sooner than planned. She was happy to let me finish all my chemo first before operating, but it gave me a chance to get a date agreed for my operation: 22nd April 2014.  I was to have a mastectomy of my right breast, all my lymph nodes removed in my right armpit and an expander implant inserted into my chest, on the right side where the breast used to be. The expander implant was my surgeon's suggestion, this meant that I'd have an empty implant inserted and then once my scar had healed the implant would be slowly filled up with saline to help my skin expand and give me something that looked like a normal breast.  The expander implant can only be kept in as a temporary measure so the ultimate aim is the stretch your skin sufficiently to enable the expander to be replaced with a silicone implant at some stage if that's the recon option I choose.

I was fine with all of this, I was happy to have all the surgery I needed to give me the best chance of recovery and the biggest lesson I have learnt through all my treatment is to trust my instincts, how I felt before my operation was exactly how I felt after, nothing had changed, bits of my body had been removed and it looked different but it didn't make me feel any different.

The night before my operation I was scared, I was going to be under general anaesthetic for about four hours, I've never had an operation before, this frightened me.  I was scared of not waking up, or waking up and feeling so poorly or in pain that I wished I was still out of it.  My Mum (as usual) was a brilliant support, she has had several major surgeries in recent years and she reassured me that I would be OK.  I think I just needed to get it off my chest that even though I appeared to be brave, I was actually pretty scared. We were at the hospital the next day at 7am, I hadn't even been awake before 7am in weeks, let alone up and dressed!  That was probably the worst thing about Tuesday 22nd April, having to get up at the crack of dawn because the rest of the day could not have gone any better.  The first lady on the list for surgery hadn't turned up that day as she was poorly, I was second on the list so it was all systems go to get me ready for theatre.

First they gave me those those horrible surgical stockings to wear, then a Doctor came round to draw some lines on my chest to make sure the surgeon chopped the right boob off.  This is where my Mum got upset, she found it hard to watch me getting marked up for surgery, I am young and healthy(ish) and it broke her heart to think that my body was never going to be the same again.  So they whisked me off at about 8.30am, my Mum was crying when I went but I was hard as nails, not a tear in sight, this took some determination but I'm very proud to say that I didn't cry.  I thought it would be silly to cry about having life saving surgery, I'd got it out of my system the night before.  It would have made my Mum feel worse too, knowing I was on my own getting prepped for the op, sobbing my eyes out.  The anaesthetist had 2 big syringes to inject into me ( I was very used to big syringes by now and I watch every needle that goes into my body with enthusiastic curiosity) he told me the first one was a painkiller that might make me feel a bit drunk...he was right.  Then I asked what the next one was, 'anaesthetic' he replied, that was the last thing I remember for four hours...

Until I woke up in recovery.  The memories of everything post op are very vivid and very funny... I was obviously high as a kite on painkillers. I could hear everything going on around me perfectly but I was still so groggy I couldn't open my eyes or speak.  I was wheeled back onto the ward and my parents came to the side of my bed, I could hear them, my Mum was holding my hand, I still couldn't speak or open my eyes so I just smiled, as wide as I could to let them know I was OK.  In my drugged up state I knew that this was my way of communicating silently to them not to worry, but I just looked like an idiot, it didn't help that they had put my headscarf back on after theatre and it was a bit wonky.  My Mum said I looked very funny! I didn't feel sick, I wasn't in any pain at all and I just remember thinking how lovely and comfortable the bed was.  I never asked what it was they gave me but it felt lovely.  As soon as I was awake enough I wanted to see what my boob looked like, I looked down the front of my hospital gown and was amazed, I was very unprepared for how normal my chest looked, it was as if they had taken all the stuffing out of my boob, cut the nipple off and sewn it up again. All the skin was still there, I didn't have a big crater-like wound on my chest.  I got my Mum to have a peep down the gown to see, my Dad couldn't be persuaded to look...

My surgeon came to see me, she said the operation had gone very well and that I could go home that evening if I wanted to. I had to fulfil some criteria before I was allowed to contemplate going home, I had to get up out of bed to walk to the toilet and eat something a bit more substantial than a biscuit.  I never believed that it would be this easy, major surgery in the morning and skipping out of the hospital in the evening, except that I had to work out how to manage at home with a drain in.  I didn't notice the drain until later on in the afternoon, the tube was poking out of a hole under my armpit, I had never even seen a drain before and now I had one, it was a bit horrible to look at, draining off the extra blood and fluid my body still making for the space where my boob used to be.  I had to take it home from the hospital in a special fabric bag that was purpose-made for carrying drains, I even had a choice, checks or stripes? (I went for stripes). The drain stayed in for four days until I went back to the hospital to have it removed. Very slightly annoying trying to get dressed, wash, go to the toilet with a tube poking out your armpit.  For once I was so grateful to not have any hair to wash.

I've just realised that I've written this whole post about my mastectomy without a single mention of pain, that's because I didn't suffer any pain, just a weird dull ache.  After I came back from theatre the nurses came round to check my pain levels, I didn't have any pain, I kept asking if this was right, was it about to start? Not only had I just had a mastectomy, I also had all of the lymph nodes in my armpit removed, all 13 of them, so there must have been a bit of rooting around in there too but nothing really hurt.

I couldn't wait for the dressings to come off so I could see what my scar looked like, I'm not a squeamish type of person, I have a few scars already so my new one was going to be in good company.  I had read up on line about different women's reactions to having surgery for breast cancer, I couldn't relate to it at all, I couldn't imagine feeling 'mutilated' and not being able to look in the mirror at the changes to my body.  It never bothered me remotely, I was fascinated with the whole process, it saved my life and I still looked like I had a real boob.  I was honestly amazed at what my surgeon had done for me, I was happy to show anyone who expressed a passing interest.

I went back to the surgeon for my results two weeks later, they sent everything they removed to the lab for testing after the operation and they found that the tumour had shrunk from 5cm to 2cm, although there were still active cancer cells in it, of the 13 lymph nodes they removed only one showed evidence of disease and there was no lympho-vascular invasion, meaning that cancer cells had not penetrated the blood vessels in my breast.  Good news all round!! Phew, the 6 rounds of chemo were worth it in the end.






Monday 10 November 2014

One year on

Today is my 'Cancerversary' it's exactly one year to the day since I was diagnosed with breast cancer.  I have felt emotional about this recently, going over the memories of that day when I got the news.  I knew I would feel this way, I could feel it bubbling under the surface for a while now, since the summer finished and November approached.

I decided the only way to combat the feelings is to turn this day on it's head and celebrate, this time last year I didn't know the extent of my cancer, I didn't know if it was curable or incurable, I didn't know if I would still be alive right now.  Even in the last year whilst having treatment I actually thought twice about buying a 2014 diary, I wasn't sure whether to waste £70 getting my passport renewed. But here I am, still standing after 6 months of treatment, sometimes it feels so surreal, like it all happened to somebody else.

A few months ago I met Sarah, a brilliant woman who writes the best blogs about what it's like to experience a cancer diagnosis as a young person.  I'll quote directly as she describes it so perfectly:

It's "Not a journey. Not a rollercoaster. It's a whirlwind. 

It's unstable, turbulent, dangerous, damaging. You'd like to think that there is some sort of predictability to what will go on, some sort of pattern, but actually the whole experience is very unpredictable. And the whirlwind itself is accompanied by various other storms too. Your world, that you spent your life building and creating, is suddenly ripped apart. It happens out of the blue, and fast. Before you've even had chance to comprehend that a whirlwind just struck, you're seeing a ground zero in the place that used to be your world....


So now you have a choice. Sit around, helplessly looking at the mess, mourning everything you lost. Or, occasional meltdown and tantrum aside, take it as an opportunity to build a fucking ace new world. (I am going with the latter. Obvs.)

Rebuilding is a big job, hard work, takes time, and of course there are points when you're tired, in pain and overwhelmed. (That's when you need those friends with the first aid kits, blankets and cups of tea.) But it's also a really exciting challenge. You get to create a new world. One you can design from scratch, that is perfect for you, that you love to be in. It will be stronger than the last one - you've learned from experience that whirlwinds can strike so you can be much better prepared for any future storms. It will be fit for purpose - you have a much clearer sense of what you want from life and what is and isn't needed for that. Most importantly it will be a beautiful and welcoming world with plenty of room in it for all the other people that you know will make it even brighter, warmer, happier. 

As for yourself... A few scars. A few lessons learned. A bit stronger. A clearer perspective. A bit more faith in yourself. A lot of love for a lot of people. A precious life... and this time with an understanding of just how precious it is"


You can read the whole of Sarah's Blog post here, she writes some brilliant stuff.

So today I'm celebrating life, and love, and family, and being alive. Tonight I'll be with my sisters, parents, nieces and brother in law; drinking champagne and setting off fireworks. Living in the moment, appreciating every hug, every smile, every tear.  Having been faced with my own mortality I am now incredibly grateful, grateful that my treatment has been successful, grateful for everyone in my life who has helped me through it, grateful to simply wake up every morning.  I don't know how many more times I'm going to get the opportunity to celebrate 11th November, so I'm going to make this one count!




Sunday 9 November 2014

The one where my hair falls out...

Exactly two weeks after my first chemo my hair started to fall out.  I knew it was definitely going to happen but the prospect of losing my hair didn't bother me, which is weird as I'm a pretty image conscious person and I love my hair, although I have changed it a lot in the past, long, short, brown, blond...perhaps it was because I wasn't scared to rock a different look for a few months? 

I didn't really have much of an idea how it would happen when it did, until I got out of bed one morning and saw that there were quite a lot of hairs on my pillow, not a lot, just a few more than normal.  During the day I noticed that more hairs were starting to gather around my collar, and if I pulled a few strands of my hair they came away without resistance, it was a very strange feeling.  The next day it was a bit worse, when I brushed my hair, loads came out in my brush, if I washed it even more came out.  All this shedding happened in the space of about 4 days, so I stopped washing and brushing it, straightening was also completely abandoned.  After the 4th day I decided my hair looked so shit I decided to take control and shave it all off.  (This is where I have to thank Stephen Hayes, who kindly lent me the clippers with which the deed was done).  I sat on a chair in the kitchen and Mum started by pulling out clumps of hair, a fistful at a time because we thought this would make it easier to shave, then my sister took control of the clippers and shaved my head so it was nice and even.  That was it, the one and only time I had to shave it whilst on treatment, until about May this year I had no hair, I had a great collection of hats and scarves that I wore out and about, and a very realistic looking wig that we nicknamed Polly.  This is me the day we shaved my hair off.




After my first four cycles of chemo my Oncologist switched me onto a different drug, this came with another load of horrible side effects.  But what distressed me the most was that this one made my eyelashes and eyebrows fall out.  Up until now I had been able to scrub up OK with some make up and my wig on, if I met up with friends or went out for dinner I looked pretty normal.  The picture below is of me with my sisters, after three cycles of chemo.  Looking OK!!



I now looked like a cancer patient and I hated it, I had to spend a long time with liquid eyeliner and eyebrow pencils trying to create the illusion of normality. I didn't want the tell-tale signs to show, and the looks of pity when people notice.  Once my chemo finished I was on constant eyelash watch, inspecting twice a day for any signs of growth with a bright light and magnifying mirror.  Not a day goes by that I put on my mascara without rejoicing in the re-appearance of my eyelashes. 

Obviously, hair loss isn't the only side effect of chemo, there are so many weird and horrible things that happen as a result of the drugs.  Some last a few days, some last for months afterwards.  The first week was always the worst when you have no energy and all the side effects are at their peak, then you gradually start to feel better.  I always thought it so cruel that just when you feel back to 'normal' is when you go back to the hospital for another dose of the nasty stuff.  I would have all my energy back, I could taste again, I would be bounding up the stairs to the chemo suite for my Oncology appointment the day before chemo, sad in the knowledge that in a few days time I would hardly have the energy to get out of bed. 

OTHER WEIRD SIDE EFFECTS

  • It's common knowledge that you lose your head hair as a result of chemo, but you really do lose ALL your hair.... armpits, eyebrows, eyelashes, nose hairs ...lady garden.  I felt like a baby; bald and chubby.
  • Some chemo drugs can cause your nails to fall off, the second of my big toe nails has just come off and I'm 7 months post chemo.  
  • The anti sickness drugs have their own set of lovely side effects,  you're sent home from the hospital with a massive bag of drugs to take for several days...they caused chronic indigestion and constipation, you then need more drugs to make these go away, I had to download an app to keep track of all the tablets, potions and injections!
  • Taking a whole pharmacy's worth of drugs on top of the chemo means you can't concentrate properly, I imagined on good days that I'd be happily working my way though Breaking Bad or some other gritty box set.  Some days I didn't have the energy or motivation to change channels on the TV let alone anything else.
  • Everything you eat tastes like hairspray for about a week.  Even cups of tea! You crave savoury food as a result, like when you're hungover.  I think I ate my own body weight in baby bels and mini cheddars. 
  • I had tingly hands and feet, (posh word for this is peripheral neuropathy) it can last for ages. I still have slightly numb feet months later.
  • The drugs that made my whole body ache have left me with creaky knees, so no more attempting to 'slut drop' on the dance floors of Leicester, believe me, I tried it and had to bail out halfway down!

The worst I suffered on chemo was when I had new drugs on my fifth cycle, the chemo gave me such bad stomach pains and joint aches I could hardly eat or sleep for two days, at least I was able to plan my weeks of hibernation after each chemo so that only my family saw me when I felt really bad. One morning really sticks in my memory from that time, I looked awful, with my bald cancer patient face, I had shuffled my aching body downstairs to the kitchen, I was sat at the table eating my breakfast when my nose started bleeding, I just grabbed a tissue and carried on eating... I must have appeared so sickly and pathetic, I don't know how my Mum looked at me that morning without crying. The photos below were only taken a couple of weeks apart after I finished chemo, what a difference a wig and a bit of make up can make!