Tuesday, 30 December 2014

Escaping Rock Bottom

Recently there was a final straw and I crash landed in the place known as Rock Bottom. I spent about a day and a half there. It started in the night. I was waking up several times an hour with hot flushes. Each time I woke up to the same thought on repeat. I don't like being alive, I don't want to be alive if this is what my life is. I'd briefly fall back to sleep, but soon wake again, boiling hot and with that poisonous mantra running through my mind.

I couldn't shut the thought out. It was there every time I woke up, ready and waiting for me. I didn't know what was happening to me, and it was frightening. Not because I was at risk of harming myself - I wasn't (this wasn't about wanting to die, it was about being exhausted and burned out from a life that has been dominated over the last four years by death, illness and other stress) but because I was in such a dark and oppressive place and I didn't know the way out. Have you read Touching the Void by Joe Simpson? (If not you must, it's excellent.) I felt like my rope had suddenly been cut and I had plummeted into a pitch black crevasse: alone, exhausted, empty, broken, hopeless.

While I was at Rock Bottom I had a hospital appointment for an ultrasound scan to check the size of my tumours after chemo. I'd requested it because I didn't believe the oncologist had really felt a "hole" where my tumour was when she examined me a few weeks before. I knew of a couple of people whose chemo had not been having the effect it should and I was worried. The appointment was almost two hours behind schedule and I spent that time sat in the corridor waiting area, gown on, cold, doing all I could to not start sobbing like I had been at home. Finally I was called through and I lay there on the same hospital bed in the same ultrasound room where I'd laid five months before for the "peace of mind" ultrasound scan that diagnosed me with cancer. The woman doing the ultrasound scan (sonographer?) scanned away. She kept going over to the big screens to check my original scans. Scan, check, scan, check. She had the nurse turn the lights on so she could see the scars and check exactly where my original biopsies had been taken. She scanned some more. Then she said "Sarah......." and paused. My heart stopped and my stomach turned. "You've done really, really well on chemo. I can't find anything at all." I burst in to tears. She showed me the images - the originals and the new ones. The tumours were gone.

Back in the corridor and more waiting for my next appointment which was with my surgeon. The tears stopped and I knew I should be relieved and excited about the scan but I felt numb. Despite that, the appointment with my surgeon went well. We discussed and agreed what surgery I was having, and I found out my surgery date. I stood topless in front of him and he got a marker pen and drew all over me and took photos. He reassured me about surgery, about time in hospital, and about recovery at home. We said goodbye - the next time I see him will be the day of surgery.

When I came away from the hospital, I soon realised I was still in the crevasse. The crevasse was my reality and the time in the hospital with the nurses and my surgeon were a temporary dreamlike escape. I felt guilty. My chemo had obliterated my cancer, and I didn't even like being alive or feel that I had anything to live for (beyond "possibilities" or "opportunities" or "hope"). My friend on the other hand had just found out a new tumour had grown while she was having chemo. She has a family, a husband, children. She was the one whose cancer should have been obliterated by the chemo, not mine, because I didn't even care any more. Things should be different. This wasn't right, or fair.

I went to the doctor feeling like I'd lost my mind. It wasn't my usual GP so I had to explain everything that had been going on. Turns out being diagnosed with cancer, spending months being injected with loads of chemo poisons and other drugs like steroids (some of which seriously mess with the hormones and chemicals in your body), stopping and starting medication because you're forgetful, along with being ill and stuck at home, hearing bad news and being in other difficult situations, would catapult anyone to Rock Bottom. The doctor didn't think I'd lost my mind, she thought I'd been through too much.

Chemo was finished and the drugs should be working their way out of my system, I was getting better from the cough/cold I'd had, and I'd already signed back up to counselling at Coping with Cancer (and thanks to a miracle, with the legend of a counsellor I had before) so the doctor told me to be nice to myself, and to see and talk to my friends asap, even if I didn't feel like it, and tell them how I was really feeling, and not worry about making them worry about me.

I did just that. I offloaded to a few of my close friends, and also on the YBCN (Younger Breast Cancer Network) forum - these are the women who really understand the crap I'm going through. I hoped for understanding about how hard things had been. I got bucket loads of that, but I also got a surprise. People started saying really nice things about me that I didn't expect. I had been feeling completely shit about myself and my self esteem had nosedived to zero. Suddenly and unexpectedly I was feeling loved, appreciated, worth something. I can't put in to words how much some of the things people said meant to me.

I kept busy over the following few days, including meeting up with some of my YBCN friends for lunch and drinks, and having the annual Christmas eatathon with some of my oldest and bestest friends. And then I was adopted by my amazing friend Emily and her family for Christmas. I spent a week as part of a big, warm, loving family and it was incredible. I had a good time, I met some people who inspired me, I learned things. 

Rock bottom already seems like a long way away now. But if I end up there again, I know how to escape. Tell the people who care about me where I am. They will help me get away.

Monday, 22 December 2014

I fucking hate cancer

Why do the worst things happen to the best people anyway? 

I hate cancer. 

I have made the most wonderful friends as a result of my cancer diagnosis. I count myself so lucky. Now one of them is facing an indescribably difficult time as a result of an incredibly aggressive cancer. 

I hate it. 

I cannot put in to words how much I hate this, how much my heart hurts. 

Thursday, 4 December 2014

Chemos and calendars

Number of days since I was diagnosed with cancer: 139
Number of chemo's left: 0
Number of chemo blood tests left: 0
Number of chemo related cannulas left: 0
Number of hours left to sit with a -4 degree head freezer on my head: 0.

I did it!

Lots of people that go through chemo make a "Last chemo" sign for their last session and have a photo. I wanted to do the same! I got carried away with glitter, and stars, and stickers and feathers and forgot to write "last chemo, 3/12/14" on it until I realised there was no space left... but here you go:

Last Chemo, 3rd December 2014
(I might have forgotten the key facts but let's be honest... it's a brilliant, sparkly sign innit.) 

Along the way I've been fine, not been fine, and pretended to be fine. I know I've been lucky compared to most in terms of side effects - really lucky in fact. But it's been hard, and I think that's more mentally and emotionally than physically. I've had my share of blues and tears. I've felt weak and scared. I've been irrational and negative. There is something about chemo that is so sinister. You're being injected with poison every 3 weeks that is actually designed to kill you. Luckily it only kills cells that are in the process of dividing, and the healthy (non-cancerous) parts of your body can recover (unlike the cancer). But still, you're being repeatedly injected with poison that is killing parts of you. It's not a nice thing to go through, and I am so, so, so relieved it's over.

I'm still not sure what to make of what my oncologist said yesterday after examining me. She said there's a hole where the tumour used to be. I just can't let myself believe that, but I really do hope that it's true. I'm much happier with the thought of a hole where the cancer used to be, than the cancer still being in there.

Anyway, I've celebrated end of chemo with some bubbly and a massive Chinese takeaway with my friend Laura (this is after going out for all you can eat Chinese with Amy last night. I appear to be craving Chinese food. My body must *need* it). Laura made my day. She brought round the three most thoughtful presents ever.
The first was labelled "Because you can" - Some nude nail varnish (I don't need goth nails any more to block out the sun!)
The second labelled "Because you'll have to" - a razor! Haha! But yeah, the hair's growing back all over already so I'm gonna need to shave if I don't want to evolve in to a hairy beast by new year (Diane, if you're reading this, you need not comment....!)
The third labelled "Because it will be" - this was my favourite....

It struck me, is there any present more meaningful than a calendar? Most of you have probably never thought about it like this before, but when someone gives you a calendar for the next year, that's based on an assumption that you're going to be around for that next year. What an amazing assumption to make!  I'm going to write everything I do in this one, and keep it forever. It's not so much things or places that I want to see in there when I look back, it's the names of people I care about who I've spent time with.

Anyway, despite the steroids, I'm getting tired and it's 1.30am and I am actually going in to the office tomorrow afternoon, ha! So I'd better try and get some sleep. I'll try and dream nice things about 2015 when everything is going to work out just fine.

Night night xx

Tuesday, 2 December 2014


I've just been for my appointment with my oncologist in advance of my final blast of chemo. She said my blood levels are all fine, so chemo can go ahead on time tomorrow. This is a massive relief - I get to be well for the run up to Christmas.

She also wanted to examine me. I told her that when others have examined me, they couldn't feel the lump anyway, but she insisted, so she did, and straight away she said she felt a hole. Not a lump, a hole. Where the tumour used to be. She had a big smile on her face, and told me the chemo had been doing its job. I didn't believe her, and she got me to have a good old grope of myself but I couldn't tell what she meant. But she was convinced that there isn't a tumour there and that she can feel a hole in the place it used to be. I don't know what to think. If she's right, this is obviously incredible news. But the oncologist having a good manual rummage round isn't the same as a scan. So I have thought about it and decided to not believe her. Why get my hopes up. In my experience that doesn't tend to work out well.

I told her I was prepared for chemo to not make any difference, because mine is a grade 1 tumour, and I thought that grade 1, slow growing tumours, didn't respond so well to chemo. She said my tumour might look grade 1 under the microscope, but it's in my lymph nodes, so the "grade 1" is irrelevant. It isn't behaving like a grade 1 tumour. I guess I already knew this but hearing it frightened me.

She said that when I meet with the surgeon I should consider delayed reconstruction. Lob the cancer out, have radiotherapy, and then further down the line have reconstruction. Better cosmetic results apparently. This frightened me. I'm scared of one surgery. I don't want multiple surgeries.

And then she said that after all that, I will go on tamoxifen which is a drug that stops estrogen fuelling any estrogen receptor positive cancer cells (this is the type of cancer I have - estrogen receptor positive). I told her that I'd been told tamoxifen wasn't an option for me, because I have a family history of blood clots. I said that I thought if I could have ovaries out, that would do the same job as tamoxifen because that would mean there wouldn't be estrogen being produced in my body. She said that there would still be estrogen in my body from other places, and she is referring me for testing to see if I personally am at risk of blood clotting, because tamoxifen is the best drug they can give me and she wants me to have it. So this frightened me, because if I can't have tamoxifen then I guess I'm not getting the best drugs to prevent recurrence, but if I do have tamoxifen I am frightened of getting a blood clot and dying from that.

I should be happy right now. I can have my last chemo on time, and the oncologist thinks my tumour has gone.

But I am just really, really frightened. I have that small feeling again. Like I am just so small, and everything is just so scary. I wish someone could just make it better. I'm not cut out for this.