Hair today, gone tomorrow

When you're first diagnosed with cancer and you know naff all about it, one of the first questions to flit through your mind is "will I lose my hair?". And because the first line of treatment for melanoma is surgery, plus chemotherapy only has a 10% success rate, it has never been a bridge I've needed to cross. Until now.

Hair loss was one of the potential side effects of ipi/nivo and, although I blinked a little when I saw it, I just hoped that it wouldn't happen to me (it didn't) plus I always figured that I would be cool with hair loss. I've never really been all about my looks. I rarely wear make up. And if my hair is greasy, it gets thrown up in a messy ponytail, without even the courtesy of a mirror. So in the grand scheme of things, I'd be fine with hair loss.

Well, now it seems dab/tram wants to strip my hair from me and it turns out I'm very very not fine with it.

It started about 8 weeks ago when I was in the shower. I gave my soapy hair a vigorous rub a la the hairdressers, and a big chunk came out. 

When I combed it through, a handful more wrapped itself round the prongs and pulled itself loose. After that, I used baby shampoo and the lightest combing possible. It didn't matter. Even the most gentle touch would leave my hand full of hair.

After a couple of weeks, my hair loss became noticeable to me. Not to anyone else, just me. My hair looked thinner and more see through. Fine, I can handle that. I started using Mane and Tail shampoo, recommended to me by a couple of other patients, in the hope I could catch it in time. Within a month, though, it became noticeable to my husband too. He took great pains to reassure me he still loved me no matter how much hair I had, but I was horrified that it was now noticeable to the outside world. And horrified by how much I cared too. It felt vain, ridiculous, like I had my priorities totally wrong. But until January, I'd always had long hair. It was like a mask I could hide behind. 

                                            

                                                 

Having it cut short before immunotherapy was a power move, I told myself. New treatment, new me. But really it was in case it started to come out. And now it had, I felt utterly at a loss. I became scared to touch it, let alone wash or comb it.

After 5 weeks, when it was really thin, I went to the hairdressers. I was half expecting her to say it needed shaving but instead she found a way to hide it. I hated it but it looked okay and hid the thinness.

Now though, I fear it is beyond all help. My husband says my scalp is visible through most of my hair. I cry each time I have to try and brush it, and it defies gravity because there is nothing there. 

I cannot make it look even halfway reasonable. So mentally I am preparing myself for the big shave and have just bought my first chemo beanie. I've also discovered the reason my nose keeps running is that my nose hair has come out and so nothing stops the drips now. Insult to injury!

Cancer, I hate you so effing much. But I'm keeping going til one of us wins.

Post-release

After I was discharged from hospital (and during my stay) I had to discontinue my immunotherapy as the side effects were just too toxic. To someone as determined as me, it was absolutely gutting and felt like a huge defeat even though tolerating only three of the combo infusions is average. 


Syringe Driver

During my whole stay in hospital, I had to use a syringe driver, which is a small machine with a plastic needle that goes into your skin and (as the name suggests) it delivers a syringe full of medicine subcutaneously over a certain period of time. For me, it was anti-sickness drugs over 24 hours. When I got home, I tried moving onto oral tablets but my digestive system just wasn't able to cope with absorbing the medicine properly and I started feeling very sick almost immediately so May and June was spent hooked up to my little syringe driver friend which came everywhere with me, and the local district nurses came to change it every day.

Luckily, some wonderful volunteers at the Christie sew these amazing little bags to carry them around in, and I was able to nab a couple and bring them home with me so, aside from the tube coming out of my arm or stomach (depending where the needle was located), it wasn't obvious I was plugged in. Some things really make you feel like a cancer patient but when you're able to abate them with trendy little bags, it makes all the difference. Thank you so much to whoever makes them - it really does mean a lot. 

When I was discharged, I was on SO MANY MEDS. Seriously, so many. It was ridiculous. It took me about an hour a week to get everything into my pill box.

 

Happily I am down from about 60 a day to around 15 a day now.

Cancer

And what of the cancer itself? Well, the immunotherapy did start working and tumours had started 'melting' away but in May, a couple of new metastases popped up so the team at the Christie and I jointly decided to start me on targeted therapy - a two-drug combination of dabrafenib and trametinib. These are tablets that I take at home with a three hour fast as I take them - very easy. They are new drugs which have only been available to stage 3 & 4 patients for a couple of years so the stats are fairly new. What they seem to show is that in a lot of people, they work for around 10-12 months before the cancer gets 'clever' and finds a way around the drugs. I'm going to cross that bridge when I come to it. If I come to it. 

Side Effects

I've had some side effects from the dab/tram: severe joint pain in pretty much every joint, which I'm back on steroids and morphine for and waiting to see a rheumatologist about, very sore soles of my feet, and hair loss. The latter has really caught me off guard. I thought I would be totally cool if I ever had to shave my head or lose my hair but actually I have cried so many times because I am losing my hair. 

This is the current state of my hair. Very thin and patchy. I went to the hairdressers last week to see if they could do anything, half expecting to come away with a shaven head because it really is very thin and I have never been blessed with thick hair in the first place. As luck goes, the hairdresser I got used to run the salon at the Christie and is used to dealing with 'cancer hair' as she called it, so she did a fairly good job of hiding the bald patches. 

I do still hate it if I am being totally honest. I want my old hair back, down past my elbows. It's always been a good place for me to hide behind. This haircut ages me by about 10 years and is the shortest it's ever been. I know, I KNOW, that this is the least of my worries. This is one of the quirks of cancer: you just don't know what will hit you and how. If you'd asked me 3 months ago how I'd feel about losing my hair, I'd have told you it wouldn't have bothered me. I have been stunned by how upset I am. Part of me wants to just shave it off instead of dealing with the daily handfuls of hair that come out each time I wash or brush it.

Blood Clot

Sadly in June I had to say au revoir to my lovely picc line when I woke up one day with severe pain in my shoulder and a really swollen right arm. I thought I might have just overdone it in the garden and got a soft tissue injury, but when it hadn't gone down the next day and my district nurse suggested I might have a blood clot, I hightailed it down to the walk-in centre, who promptly sent me to A&E. They confirmed the likelihood of it being a clot in the vein where my picc line was, and then spent 8 hours trying to unsuccessfully canulate me in every area possible including my foot (OWWWW) so they could give me a CT scan. Eventually they gave up and let me go home, on the proviso I came back the next morning for an ultrasound. Happily, this didn't require canulation, and the scan man was incredulous that they had spent so long trying for a CT that he said I didn't need and was totally pointless. In no time, he had pinpointed the presence of a clot which had, by now, travelled up my arm and was resting in the junction of my aorta and another vein. My eyebrows must have shot up at this news because he reassured me it wasn't as scary as it sounded, and so long as I injected myself with fragmin (blood thinning) injections every day for a couple of months then I would be fine and my body would break the clot up itself. So that's what I did. As horrendous as the idea of injecting yourself in the stomach every day is, it turns out you get used to it and it isn't as bad as it sounds (not that I would volunteer as tribute for it). Anyway, after a few weeks my hand and arm went back to normal size so presumably the blood clot has gone. It's a bit yin and yang - no risk of a PE but I do have to have my bloods taken the usual way again now.

Baby Steps

Sometimes I get so frustrated by how tired I am or how little I feel I can do. I have started back at work again two days a week, but I get home and feel shattered, even though I'm just sat at a desk all day. But then I look back and think that three months ago, I couldn't even climb my own stairs in one go. Now I am back at work, I've joined the gym, I am swimming over a mile each time and can easily walk over a mile now without getting too out of breath. It's just one baby step at a time. 

My next baby step is in two days when I have my next set of scans: a CT for my chest, thorax and pelvis, and an MRI for my leg and head. They're every two months now I am on targeted therapy. On one hand, it's good that they keep such a close eye on me but on the other hand, it's crap to have to go through scanxiety every eight weeks. My last set of scans were clear but I know that could change at any time. I'll update you when I've got the results. 

Five things people don't tell you about cancer

Five things people don't tell you about cancer

1) Recovery is so hard, man. So hard. The side effects from the drugs that are supposed to fix you are often so much more debilitating than the cancer itself. After I was discharged, I still had a lot of pain from my tumours (I had around 60-80 internal and external at that point) but the side effects from the drugs were so much worse. 

2) The fatigue. Oh, the fatigue. How is it possible to be THIS tired? Where going downstairs to get a drink feels like an Everest expedition that required a 10-hour recovery period? Being in hospital for so long means you don't get to climb stairs for ages so when I got home, even getting upstairs was a huge challenge and required a stop halfway for a breather. I was sleeping 17, 18 hours a day easily but it wasn't a refreshing sleep. It was the sort where you wake up and still feel bone tired, where even smiling requires more energy than you possess.

3) Friendships. It's a funny thing, cancer. It's like a magnet. It either drives people away or pulls them in. A few of those who are driven away will stun you. Close friends who you think will be there for you drop out of your life and are nowhere to be seen. They get very busy all of a sudden and find every reason under the sun as to why they can't come and see you. But, at the other end of the magnet, people who weren't close friends before step up in ways you could never see coming. Unexpected people, those who you would never have guessed would be there, are suddenly your angels of mercy, bringing food, offering to come and clean your house, sending you flowers, hampers, cards, lovely messages or (on one particularly bad day) coming round just to give me a hug. Words will never be enough to say how much these people mean to me and how grateful I am. They know who they are and I hope they know I would go to the end of the earth for them.

4) Loved ones. Boy, is it hard on them. I think possibly even harder than on us at times. All they can do is sit back and watch helplessly and silently pray we don't die. And if we do, they are the ones who have to grieve and suffer the loss. They silently and tirelessly work as carers, bringing us this and that when we need it, sitting through countless appointments, driving countless miles to visit us in hospital and so much more. And the uncertainty for them, such as the call I had to make to Alex in the middle of the day telling him the doctors thought my intestine may have ruptured (it hadn't, thankfully, but he had to drop everything, leave work and rush to the hospital). Thank you, carers. You are so appreciated, even if we don't say it as often as we should. 

5) It's an emotional rollercoaster. Not in the way you'd expect though. When you first get diagnosed, your brain goes at a million miles an hour working out what to do next. You go from disbelief to horror to dispair to determination to grief back to disbelief again in the space of about 10 minutes. But eventually, when you accept it, you focus on what's ahead and get stuck in. And weirdly, during treatment, there simply isn't time for many emotions. So I, like a lot of people, tend to get hit by everything once my treatment has finished. And it is a very weird feeling. To be told that you are NED - No Evidence of Disease - and to feel absolutely nothing positive, no joy and jubilation, is totally at odds with all logic. When you tell people your 'good news' and they hug you and say "you must be over the moon!" it's horrible to have to plaster on a fake smile and say "yeah, of course" while holding in the tears because the reality is you feel devastated for reasons you simply can't place. And all you can think is "what if it comes back? Why can't I enjoy this moment? Why can't I stop obsessing? What's wrong with me?". But the reality is, nothing is wrong with you and it is totally normal to feel flat after treatment. It is almost like PTSD. The shock of it all catches up with you finally, and post-treatment is a good time to consider counselling if you haven't already and think it might help. Macmillan and Maggie's Centres both offer this for free.

So yeah. Cancer totally sucks. Like we didn't know. But I strongly recommend everyone gets themselves a Doctor Cat who insists on following them literally everywhere, even walking slowly behind them on the stairs to make sure they don't fall over.

Offical Best Doctor Cat

Picc line

I had two different picc lines done in the end. First a single, then a double to replace it. For the uninitiated, a picc line is a long thin plastic tube that enters your arm via your vein. It travels along your arm, across your shoulder and chest, ending just above your heart, and it is used for both giving medicine and food (if needed) and for collecting blood meaning no more stabbings. Nice! 

It's a small operation where you're given local anesthetic at the entry point, then the surgeon guides the tubing in using ultrasound and stitches it in place. If you're about to have it done and are worried, don't be. Honesty. It's easy peasy, and the pros outweigh the cons by a million to one. The reason I had my line put in was because my veins were so awful that canulas were lasting half a day. A pic line means they can take blood every day without you feeling a thing. 

 

 No more painful canulas














Everything in and out through one easy picc line

 

Colitis and hepatitis

After being discharged from our local hospital, I got less than a week at home (most of which was spent asleep) before I started being sick. And being sick. And being sick. And so on. And so on. For 36 hours. Until I threw in the towel and let Alex call the Christie. I guessed they'd make me go back to our local hospital again so I was very pleased when they told us to go straight there and they'd find a bed for me. I packed enough underwear and pyjamas for a 5-day stay, thinking that would probably be plenty. 

HAHAHAHAHAHAHAHAHA.

Five weeks, my friends. That is how long I was an inpatient. FIVE WEEKS. 

They got the vomiting (caused by the hepatitis i.e. liver inflammation) under control fairly quickly but then the diarrhoea started. I'll call it what it actually was - colitis - and warn you that I'm about to get fairly graphic. Feel free to skip the rest of this blog entry if talking about poo in detail is not your thing!

So, the body is an amazing thing and we never really acknowledge just what an incredible job it does until it all goes pear shaped. Just one of the fantastic things our bodies does is take delicious food in through one end, work some sort of mysterious magic via our stomach, bowels and other organs that we don't even need to think about so that we get energy and nutrition, and then....yep, poo! All day, every day, without us needing to think about it. Until it goes wrong. Hello colitis. 

Colitis is inflammation of the colon. And if your colon gets inflamed, you flippin well know about it. Not least because everything that comes out is liquid but, in my case, my bladder stopped working too, so literally everything was coming out of one place. Which meant the skin down there started to break down and cream had to be applied regularly, which is hard when you are going to the loo literally every 10 minutes for hours on end. I'm surprised I didn't wear a path on the floor between my bed and the toilet.

Because my body wasn't absorbing nutrients properly, all my muscle started to break down and the hospital took the decision to feed me through my vein via my picc line (more on picc lines in my next blog). The IV food is basically a bag of nutrients and oil, called TPN, which is short for total parenteral nutrition, and it basically ensures you're getting everything you need. In my case it was particularly tricky because I am vegan, and hospital catering is not particularly geared up for vegans, although all credit to the Christie who sent up the chef to discuss how best to meet my needs. 

Being hooked up to fluids, steroids, anti-emetics, antibiotics and TPN meant I was pretty much on IV something 24/7, so unplugging it from the wall, wrapping the wires up and wheeling it to the loo in the middle of the night became so much of a chore that I eventually gave in and asked for a commode. I think you do eventually reach a point where the bar on your dignity and standards is so low that literally anything will do. 

After 4 weeks of being on top doses of steroids and no end in sight, my consultant suggested an infusion of a drug called infliximab* which is sometimes used for colitis patients. I had a dose of it which didn't work, and then a second dose a few days later which seemed to do the trick and slow everything down. If you've ever had the pleasure of filling in a Bristol stool chart, you'll sympathise with my page upon page of 7s. Imagine my delight when I finally was able to write 6 and then 5! Meaning eventually I could leave.

Those 5 weeks were the absolute pits. I was so ill at one point that, later one, one of the nurses told me they were on the verge of moving me to intensive care. Another nurse was crying because she was so worried about me. I have literally never felt so ill in my life as I did those couple of days. But I also moved to a ward and shared the room with some brilliant ladies who I still think about. One of them, Alice, has a fantastically positive but realistic Facebook blog which I suggest you check out. She is an amazingly brave lady.

*Infliximab - I later found out that infliximab is made using mice cells. To a vegan like me, this sits very very uneasy. Although I needed the medicine, I felt absolutely sickened by being responsible for the torture of mice, whose cells are continually harvested to produce the antibodies needed to make infliximab. To try to make it right, I donated £150 worth of wishlist stuff to our local rodent refuge. I know all medicines are tested on animals, not just infliximab, and to that end, I donate monthly to Animal Free Research UK who are also in my will. I hope one day it doesn't have to be a choice between animal-tested medicines or death.

How did we get here?

The next morning, I went back to the hospital for the scan to look for a blood clot. I was so ill that a porter had to wheel me to the scanning area because I couldn't walk. Post-scan, everything kicked off and I don't remember too much of the week that followed. I believe I collapsed and they rushed me downstairs to A&E where I was treated very early for possible infection and sepsis, then moved into a side room on a ward, where I remained for nine days. 

I remember vomiting a lot and having diarrhoea a lot, but not too much else of that week. The only thing that really sticks in my mind is calling my best friend at 6am one morning because I'd had a dream that I was up a mountain in Wales, woken up and was very confused about whether it was real or not. Apparently I was telling the nurse not to come near me or touch me (I don't remember that) and I phoned my friend to ask whether I was in Wales or in hospital. Needless to say I was on some fairly hefty drugs at that point. The consultants diagnosed me with hepatitis and colitis - side effects from my immunotherapy - and put me on IV steroids amongst other things. I vaguely remember having my first sigmoidoscopy that week too - a fancy word for an up the bum camera procedure. Probably a good job I was out of it. 

The face of someone who's 

had ALL THE DRUGS. And 

lost their hairbrush.

Happy 40th.

Waking up on your 40th birthday is never going to be an amazing feeling. Waking up on your 40th birthday totally delirious, spewing your guts out, with a temperature of 39C and horrific diarrhoea is not what any of us have in mind for officially entering middle age. Nonetheless, that's what happened to me on 28th February.

Being an amazing hospital that specialises in cancer, the Christie gives you a little card to carry round with you that has a 24 hour hotline number on it. You call it if you have any adverse side effects to your treatment, and that's what I did mid-morning. By 2pm, an out-of-hours doctor was round at my house and examining me. He ignored my vomiting and diarrhoea, instead honing in on the lymphedema that sits in my leg (lymphedema is swollen tissue caused by fluid retention, in my case because scar tissue and a lack of lymph nodes prevent lymph fluid from moving round and exiting my leg properly, meaning my right leg and foot are always swollen). He insisted that I could have a blood clot and that I needed to go to A&E right away for a scan. Have you ever wanted to scream because you know that you're right and someone else is wrong? That. My leg is always swollen, has been since 2012. But the doctor would not listen to me and insisted I go. It was snowing heavily outside and I had a high temperature and was vomiting on the reg. The last thing I needed was to schlep up to A&E and wait for several hours amongst other sick people. So instead, I listened to my instinct and went back to bed.

The next morning, I was woken by my phone ringing. It was my dad. The bloody Christie had only gone and called him wanting to know why I hadn't attended A&E yesterday per the doctor's instructions. Like I was a small child in trouble with my parents. Jesus. By now the vomiting had stopped and my temperature had come down a little bit. Reluctantly, now that I felt a bit better, I moped off to A&E in the snowstorm once Alex got home. Totally pointless as I guessed it would be. The scan the doctor told me to have wasn't doable. I had to wait several hours just to have a blood thinner injection for a blood clot I knew perfectly well didn't exist. And by the time I got home, I was feeling absolutely bloody awful again. Worse still, I had to go back the next morning for a scan to look for this non-existent clot. Looking back, I could slap myself for going against my instincts and going to the hospital just to please everyone else. If I hadn't gone, maybe the rest of it wouldn't have happened. 

To be continued...

Immunotherapy - ipilimumab and nivolumab

Due to an infection, I had to stay in hospital longer than expected and so immunotherapy was pushed back to 16th January. That was probably a good thing in the end, although it didn't feel it at the time - I tend to dive headfirst into everything as soon as the bell rings so it was frustrating as hell to be lying in bed looking at a leg full of tumours and thinking right that second I could be having an armful of drugs to kill them. The reality was that my body just wasn't strong enough to cope with being up and about, and I needed a couple of weeks in bed to muster the energy to face the challenge ahead. 

Walking into the chemo ward for the first time is about as depressing as you'd imagine. Row upon row of big chairs with frail people in them, attached to stands full of poison being pumped into their bodies. And I was about to become one of them. 

If you're reading this because you're about to have immunotherapy for the first time, then don't worry. It's a doddle. My only advice is to take something to read/watch, and to drink plenty of water beforehand so they can easily find a vein. 

I have notoriously rubbish veins so it took about 20 minutes 3 people and a heatpad before someone finally managed to canulate me. The process takes a few hours to go through. It starts with a saline flush, then the first infusion which is about an hour. Another saline flush for 30 minutes, followed by the second drug for another hour. That's finished off by yet more saline. You then stay in the chair for a short while, just so the nurses can check you're alright and not having any adverse reactions. 

Immunotherapies 1 & 2 were absolutely fine. They left me feeling very fatigued of course, and by now I was in a lot of pain because it was clear I had internal tumours as well as external. I had a big lump inside my ankle which was causing me a lot of pain, and I still had a lot of post-operative pain as well. But on the whole, I didn't really have too many side effects. 

I'd read that 3 combos was about average but I was determined to get all 4 combo treatments then move onto single treatments of nivo. If only my body was as determined and strong as my mind. 

27th February, the day before my 40th birthday, was my third treatment. My lovely friend Liz had offered to keep me company as I had my infusions and we had a fun old time as the drugs filled my veins. Towards the end of the last drug, I began to feel quite sick but shrugged it off and drank some water. After the last saline and the requisite wait, I made my way downstairs on my crutches and was suddenly hit by a wave of dizziness and nausea. Lovely Liz got me a bottle of water and helped me to the car where my husband was waiting for me. Never one to give up, I defiantly refused to go straight home and went to see my friend Garry before he went on holiday. By the time I crawled into bed, I was in serious need of a sick bucket and a glass of water. My life was about to change and not because I was turning 40...

My first day of immunotherapy. I 

was feeling so positive and brave!

Skin graft, skin flap, all sorts of skin fun! *photos not for the squeamish*

On December 13th, I had my wide local excision with a skin flap and skin graft, to remove the big lump of cancer that was, by now, rendering me bedbound and virtually unable to walk. 

Because the lump was so large and deep, the surgeons needed to remove a large area of flesh so opted to do a skin flap. This involved cutting out the tumour and about 12cm of skin and flesh around it, going down to the muscle and possibly having to take out the main nerve of my lower leg (thankfully this didn't transpire in the end). Then they cut a flap of healthy flesh from the inside of my knee (imagine cutting three sides of a square so it's still attached to my leg), twizzled it round to the back where they just removed the huge chunk of leg and sewed the healthy bit into place. Then finally they shaved off a big rectangle of skin from my other thigh and stapled it into the hole they'd just made on the inside of my knee. It's a pretty big operation with a long recovery time. Pictures below.

Needless to say, if you are squeamish, don't scroll down. 

If you're having this operation, make sure you have everything in place to give yourself time to recover. Take a month off work. Make sure you get to practice stairs on crutches before you leave the hospital. Make sure the hospital give you PLENTY of spare bandages and padding. I didn't get given anywhere near enough and at one point we had to use duct tape to hold a blood sodden bandage in place whilst my husband went to Boots to buy some more. Make sure you have support in place to get the chores done so you can rest. You cannot be doing things because you cannot risk knocking your skin graft out of place. It is incredibly delicate. Make sure you are given enough pain relief to go home with. The sorest bit for me was actually the graft site because the nerve endings where the skin was shaved off are all cut and bleeding. After a few days, your graft site will start to itch like crazy. DO NOT SCRATCH IT. You will make it bleed and delay the healing process. Instead, take an anti-histamine like piraton to stop the itching.

Okay, here come the pictures. 






19th December, 6 days post-op 

24th December, 11 days post-op

29th December, 16 days post-op

9th January, 28 days post-op

2nd February, 52 days post-op. Note the 
red spots of metastases on my leg.

                                                                                         

The skin flap round the back of my knee, where the large tumour was removed

                                                                                                      

My leg as it is today, September 2018. It has closed up a lot and the 'shark bite' has got a lot smaller. I doubt it will get any less than this but that's fine. I don't let it stop me. I go swimming and if people want to look, then let them. Don't be ashamed of your scars, folks :-)

Melanoma metastases

Those two little red bumps weren't flea bites. Nor were they spots, boils or anything else benign. God, how I wish they were. I don't know why I didn't realise straight away that they were mets, or metastases - little spots of growing cancer in other places from where the main cancer had 'seeded' and spread, much like a dandelion head does when you blow it and the seeds go everywhere and set down root.

I think I didn't realise because my previous metastases had been dark brown flat flecks. These were raised red bumps. Let this be a lesson that melanoma takes many forms and guises. If you have anything on your skin that you're worried about, get it checked out. Far better to be told it's nothing than to learn to late that it was something. 

After a third then a fourth appeared, it finally dawned on me that this was something, and I booked an urgent appointment to have one removed and biopsied.

By this point, I'd already decided to refer myself to the Christie hospital in Manchester, rather than the non-specialist hospital I was at. It took some doing because my consultant at the non-specialist hospital refused to refer me so I had to do it myself (via my GP who wrote an urgent fax asking for me to be referred). At this point I need to give a huge shout out to the brilliant Gill Nuttall from Melanoma UK who gave me loads of good advice and smoothed the path for me being seen by Professor Lorigan's team at the Christie. Melanoma UK is a brilliant charity that helps people affected by this illness; defo check them out if you need help and advice. 

Unsurprisingly my biopsy came back as positive for melanoma. By now I had around 9 spots on my leg with a new one popping up every three or so days. It was becoming apparent that surgery wouldn't be an option, given how fast they were appearing, and that systemic treatment such as immunotherapy would be needed as a first line of fire. 

After many many days of endlessly ringing the Christie trying to make an appointment, only to be told that yes, the team did have my information on their desk and no, I still didn't have a date yes, the letter finally arrived. 

The Christie is a huge hospital and going there for the first time is daunting (technically this was my third time after the trial stuff back in 2012 but it felt brand new). It's overwhelming to see so many people in your position, and worse. 

The day before my skin graft operation, I met with one of the lovely doctors, Sara, and one of the brilliant research nurses, Jacqui. They took me through my options and gave me a few days to decide. It boiled down to two options, both immunotherapies: a combination of nivolumab and ipilimumab, or a single agent called pembrolizumab. After much research I opted for the combo, which I was due to start the week after my op. More on that in the next post.

What happened next...

I'm sorry it's taken me so long to update my blog. Lots has happened and at the time I just didn't have enough energy to write about it. 

So, after that operation in July last year, my leg started to heal up okay. But in October, just when it seemed like it might look alright and the cancer was all caught, I started to experience really acute pain behind my knee, where the graft was. I tried to ignore it, telling myself it was normal, but then a lump appeared in the graft. I thought maybe it was an infection and left it a few days but the lump got bigger. I went to a GP at my surgery, who told me it needed steroid injections to flatten it. She referred me to the district nurse who couldn't help me. The pain got worse and it started to bleed and ooze, so I went to our local walk-in centre. They didn't like the look of it so sent me to A&E. The doctors in A&E thought it was an infection so gave me a different set of antibiotics which also did nothing. By now, the lump was massive, bright yellow and the pain was phenomenal. Easy to see why it looked infected.

A week and many antibiotics later, and the lump was about the size of a golf ball, hard, hot and very painful. By now, November 2017, I was walking with a pronounced limp, finding it hard to drive and couldn't straighten my leg. Even working was difficult as my brain could barely focus on anything but the pain. Sleep was increasingly difficult. I went back to my GP surgery and saw a different doctor who said she thought it was a granuloma. She thought it wasn't infected since my skin wasn't red but she gave me another set of antibiotics anyway which, unsurprisingly, did nothing. By now, I had an appointment coming up with my dermatologist, Dr Stewart. 

23rd November and my appointment came. I rolled up my trouser leg and showed Dr S, who immediately confirmed my worst fear - the cancer had returned. She immediately signed me off work, which was a big relief given how much pain I was in, and asked how I wanted to proceed. I said that I wanted it removed asap, meaning another operation and another skin graft. 

By now, I had noticed a couple of small red lumps on my lower leg but I was so focused on this big lump that I wasn't really paying attention to them. I was hoping that the cat had fleas and they were simple bites - something nice and simple. So I didn't bother mentioning them to Dr S, even though they were only on my cancer leg. That should have been my first big red flag...