Update

Just a quick update to say I'm on the mend. The drain is still in place for the time being, with no blood in it any more. I'm on a strong cocktail of intravenous antibiotics, and feeling good bar a little sickness and residual pain. Now up to 18 needles.

Scary scary day

This won't be too long as it's mostly just for my reference but in a nutshell, I felt a bit headachy and off-colour on Wednesday. Went for my drain change on Thursday morning and during it, started to get bad leg pain. An hour later got very dizzy and nauseous. Two hours later I had a full on fever (head boiling, body freezing), nausea, rigours, lips blue, struggling to breathe, forgetting simple words, blinding headache, very severe stabbing pain in leg and groin. By 4pm it was evident I needed an ambulance so my lovely husband stayed very calm and did a brill job of getting me help.

When the paramedics arrived, they did my vitals and they were pretty bad. Temperature was 39.3C, pulse was 150bpm, and blood pressure had dropped to 80/45. Got rushed to Wigan A&E, had chest x-ray, pelvic x-ray, arterial and venous bloods, urine sample, tests for meningitis and 3 bags of saline and antibiotics. Cancer leg was drawn on to the indicate infected area around the drain, which was bright red and turgid. Drain bag was full of blood and tissue, around 600ml since 12pm.

After a terrible night's no-sleep thanks to noisy nurses again, I got transferred back to Whiston. Needed a wheelchair for even toilet trips as I'm in too much pain to walk but vitals were a lot better. Another chest x-ray, more blood and urine samples, more meningitis tests, another bag of saline and 2 bags of antibiotics. I have been stuck with 12 needles in the last 30 hours and have officially run out of veins - they want to put a bigger cannula in but there's nowhere left. The nurse tried 3 veins on my wrists but it hurt too much and they just don't work.

Communication isn't great so I'm unclear on what's causing the infection and whether my drain will come out. I think it's the source. The consultant and drainage nurse both don't work weekends so I'll be stuck here til at least Monday. All signs point to severe sepsis. We caught it early though before the point of brain damage/organ failure.

As I understand it, future plans include a pelvic CT, an ultrasound to rule out appendicitis, maybe a spinal tap to fully rule out meningitis and daily blood tests. Embarrassment of the day yesterday - discussing bowel movements in front of my husband. Embarrassment of the day today - narrowly missing a helpful porter's shoes when vomiting from my wheelchair.

At least I have a private room this time round and over my dead body are they kicking me out of it!

The end is in sight...

I got my biopsy results this afternoon - NED, or No Evidence of Disease. Meaning none of the 11 removed lymph nodes had any cancer in them. Nor did the two removed moles, although one was classed as dysplastic meaning it was a little more likely to become cancerous than a regular mole. I still have several others on my body which I hope to have removed at some point.

I know I'm meant to be really happy, this is the news I wanted. My friends and family are ecstatic. I pictured this moment a thousand times, and in each one I was overjoyed. But for some reason I just feel numb and empty. Maybe because I know this will never be truly over. Melanoma has no remission, as such. Only NED. The recurrence rate is high and there is no real cure. Hospital visits will be a part of my life for the foreseeable future, as will constant vigilance of every change to my skin. There is no forgetting and putting it out my mind from now on. 

I know there's no 'normal' reaction to any of this, but even I have taken myself by surprise. Maybe tomorrow it will all sink in, but for now I don't feel a single thing. 

Groin dissection scar

Finally the dressings are off! The black is the line of my underwear, so you can see it goes from just above my hip bone across the groin and down my thigh. It's about 30cm long at the moment but should shrink down a little. There's surprisingly little bruising compared with the local wide excision.

Drain, the bane

I've had this drain in for two weeks now, and you'd think my body would figure out that there are no lymph nodes in my groin anymore so let's send the fluid along to the next set of nodes. But no. It seems my body is lazy and will just continue to pump out its lymph fluid into the nice convenient drain that's sitting atop my leg. The problem with this is that I can only have the drain for two more weeks before it has to come out due to the ever-increasing risk of infection. Ideally, my body should be putting out less than 50ml a day at that point, so each evening at 6pm I have dutifully emptied and measured the day's takings, silently hoping it will be lower than the previous day's figure. Sadly, half the time it isn't. I thought I'd had a breakthrough yesterday when it was 197ml - my first less-than-200 result. But nope, today we're back up to 236ml.

Also, my eyes and brain are so bored. My best friends came to see me yesterday whilst my husband's away, and that was nice but good god am I fed up with being in the same rooms. The only places I've been in the last 14 days are home and hospital. Even my daily trudges around the block have got very boring. I am a person who goes out, travels, sees things. Don't get me wrong, home is definitely a lot more palatable than hospital but it's still very very boring. Sorry for complaining. I am tiring myself with all this whinging.

On the plus side, there has definitely been less instance of nerve pain in the last 48 hours. As a reward, I have decided to entertain myself by learning the lyrics to Informer by Snow:

Telling the loved ones

My parents came to visit last night and I told them everything. 

I'd been making myself sick all day with worry, and I'd gone back and forth between disclosure and hiding it - from rehearsing sentences in my head, to taping the drain tube and bag to my leg to disguise it so they wouldn't have to find out. In the end, my gut feeling was that I would regret it if they left none the wiser so I took a deep breath and started with "You'll notice I have a tube coming out the bottom of my pants. It's a surgical drain".

They did take it quite well and I was questioning whether I should have told them sooner but this is just the way I cope with things, quietly and alone. Had the cancer been contained in my leg, I wouldn't have needed this operation and nobody would have needed to know. They're pleased I sought treatment immediately and glad that I took the doctor's advice on treatment rather than go down the route of blissful ignorance like a friend of theirs did, which ultimately claimed his life. My dad's kindly going to give me a lift to the hospital next Thursday for my weekly drain check and dressing change.

As for how I'm doing, I'm okay. The bruising in my leg is really starting to become apparent and the swelling isn't showing any sign of abating, nor is the drain yielding less fluid - averaging 230ml a day. This isn't good because I can only have the drain for a maximum of four weeks in total and really it needs to be producing less than 50mls a day when it comes out. In other words, I have two weeks for it to reduce its output by 80% or more. 

If this doesn't happen, the drain will be removed and one of two things will happen; my body will reabsorb the fluid itself or my leg will swell. Given that this has happened previously, it will likely happen again. The treatment for this is to have a large needle inserted into my leg and to aspirate the fluid out manually. Dunno about you, but I can think of more fun things to do with my time. 

I found out too that I will get my results for the removed moles and the lymph nodes on April 24th. Please please let it be good news. I am most afraid of finding out one of the moles is cancerous and having to go through all this again on the other leg. If 1-2 of the removed lymph nodes show signs of cancer, there will be little or no further treatment. If 3 or more are affected, I will undergo radiotherapy.

PMA

After waking up at 12.30am screaming due to yet more nerve pain, and having to get my lovely husband to help me out of bed a millimetre at a time, I have decided: screw this. Not only did he not sleep the entire night because he is so worried and hates seeing me in pain, but I have subconsciously really slowed down my movements because I am so afraid of setting the pain off. 

Screw it. I am not letting this affect me and my family in this way. I refuse to set mental barriers for myself because of fear.

So today I have been climbing stairs in the normal fashion rather than leading with left leg up and right leg down. I have walked a mile and made myself not have any type of limp. I have vacuumed the whole house and bent down to pick things up, and I have sat out with my beloved chickens on my garden chair instead of standing as I have been doing. And you know what? It's been fine. I had one 10-second burst of quite bad pain when I got up out the chair but that's it. I am not going to let this change the way I do things. I am f***ed if I will let it prevent my husband from sleeping. I am done with the last seven days of fear and worry over this nerve pain. If it happens then it happens but I won't be cowed by it. Positive Mental Attitude!

My top tips for hospital stays

• Bring a laptop/dvd player and plenty to watch for when you're in bed and a portable mp3 player for when you go on exercise walks. Don't underestimate how bored you will get!
• Download podcasts to listen to in the early days when your eyes can't concentrate on TV and films. Comedy works best for me.
• Bring slippers that you can put on without having to bend down.
• Food has to be bland for medical reasons so get salt, pepper and sugar sachets from the canteen to flavour it up.
• If you want a private room, just ask. They are SO much better than wards.
• Pull down your hospital gown at the front before you shuffle up the bed, otherwise you'll end up choking yourself.
• If you can't shower or bathe, bring perfume and shampoo so you feel clean and nice as possible.
• Check your charts at the foot of the bed daily.Ask that they correct any wrong information and notes (in my experience, a lot of it is incorrect and they will write down answers without having actually asked you the question).
• Ask until your questions are answered. It's your health; don't let them fob you off or ignore you.
• Ask your visitors to be specific about when they're coming. It's really disappointing to think they're arriving at 2pm only for them to get there at 5pm. To them it's not a big deal but to you it can really affect your mood for that day.
• Have a bit of spare change in your bag for if your visitor doesn't leave on time and their parking charge runs over.

Home Sweet Home

Finally yesterday I came home. I won't go into all the ridiculous details, suffice to say I found out they weren't planning to discharge me til next Wednesday when the drainage nurse was back from annual leave, and then after being told I could go at 9am we ended up having to wait 6 hours for some antibiotics to be brought up two floors.

The drain is intact and still working, yielding around 400ml a day of lymph fluid (although it periodically stops and my leg swells pretty rapidly). 

The nerve pain in my leg is getting worse both in frequency and in acuteness. It woke me up crying in the night. I have discovered through researching that its medical name is peripheral neuropathy (information here) and that it's not massively uncommon as a complication or side effect in both cancer drugs and surgery. Given that information, it is massively surprising and disappointing that I have had to find this out myself, and that the on-call doctor didn't realise it was nerve pain causing the agony during vaccing. It seems that it is one or more of three things:

1) A temporary effect caused by the placing of the drain which will be alleviated when the drain's removed

2) A side effect caused by swelling and bruising pressing on a nerve which, again, will subside as it heals

3) Permanent damage which will have to be controlled by medication or further surgery

I am trying to be positive but having a little dip of my toe into 'why me' territory at the moment as it seems again I have been very unlucky in experiencing this complication.

Also, my parents want to visit me one evening this week. How the hell do I hide that I can't get up on my own, or that I have a whopping long tube coming out of my pants into a big 2 litre drain bag. Do I tell them? How do you tell your elderly parents that their child has cancer? 

From hospital - Saturday

As I said yesterday, hospitals are lonely places and the novelty of visiting someone in hospital soon wears off on most people. In my case, barely anyone knows anyway so I'm not exactly doing a lot of entertaining in the first place. My husband is coming to see me each day but he seems to have a lot of things to do before he leaves the house. Admittedly some of them are things for me like putting new TV shows on a memory stick or buying me snacks, and some of them are household chores, but a hospital hour feels like a day and six days in here can quickly bring down even the cheeriest person.

I was feeling very despondent this morning when I realised that my prediction yesterday had come true - my drainage tube had become blocked by debris. It seemed to be the part inside my leg so I couldn't even fish it out with things I had lying around like I had done previously (if any of my medics are reading this, I absolutely definitely did NOT dismantle my drain and fish bits of flesh out myself).

As it's a Saturday on a bank holiday weekend, the hospital is on skeleton staff and minimal patient intake, and rounds were delayed by several hours due to priority trauma cases coming in. So I didn't see a doctor til midday and when I explained that a) my drain had become blocked and b) my nerve was flashing intense pain again he said he didn't really know what to do and would consult his senior. He and the nurse both thought maybe my leg wasn't producing fluid anymore and that's why nothing had emptied out, but I knew it wasn't true. It doesn't suddenly go from excreting 300ml of lymph to zero, and even a 20-minute walk didn't produce a drop. So I knew it was a blockage.

After a couple of hours of lying in bed waiting for the doctor to come back with a solution and feeling sorry for myself, I decided to do something about it. Based on the principle of unblocking a toilet (rapid pressure/depressure to create a suction vacuum) I applied the same to my drain tube - essentially squeezing and releasing very quickly. And...SUCCESS!

A big clump of tissue shot through, followed by about 150 ml of bright red fluid. After dancing a celebratory jig, I decided to keep it moving by going for a very long walk. I have figured previously that 4 laps of the floor is half a mile so I decided to do a full mile across three floors.

I moved from my floor, 3, to floor 2 (too purple and full of pregnant ladies) to the ground floor. And this is where I found a place called The Sanctuary. Far from being a spa like I first thought, it is a multi-faith quiet room complete with books of remembrance for babies and children.

Good lord, has it put it in perspective. It's mind-blowing to realise how many fetuses don't make it out the womb alive, and how many babies don't make it to toddlers, toddlers to children, children to teenagers. Page upon page, book upon book, some with photos of their deceased child, some just a sentence but all reflecting the heartbreak of at least one other person.

I am very lucky to be in this position, really.

(In the full sense of irony, as I was writing how lucky I am, I was moved out of my private room back into the ward next to a woman who is snoring and just broke wind very loudly. GET ME OUT OF HERE!).

Masterchef - the hospital edition

I will update this every day with my new meals.



The menu is quite comprehensive here and I like that they draw daft things onto your order to make you smile (I'm in bed 10C):

Also, the eggs are free-range!

Here is my evaluation of hospital food (note I did start an evaluation but I am crap at writing about food. I don't recognise meals as stodgy or rich or light. I can't identify whether it needed a different ingredient. To me, meals are either good, edible or bad. So without further a do, here is my rating out of ten):

Macaroni cheese - 10/10
Custard - 0/10  (I later discovered adding sugar sachets to it makes it a lot better)
Syrup sponge - 5/10

Omelette and dauphinoise potatoes - 7/10
Bread and butter pudding - 3/10  

Tomato and cheese pasta - 8/10
Rice pudding - 4/10

Mushroom and pea risotto - 6/10
Rhubarb and apple crumble - 5/10

Veggie chilli - 6/10
Chocolate sponge - 1/10




And that concludes this episode of Masterchef. Scintillating, wasn't it!

From hospital - Friday

Not much to say today, really, which is probably a good thing. My drain is working well now and I have been for a 4-lap walk every 90 minutes. My laps of the floor take me around 30 minutes and it is helping to bring down the swelling quite noticeably. This morning the circumference of my right thigh was around four inches bigger than my left and now it's only an inch.

I do want to go home though. My brilliant husband has been here every day during visiting hours but it's a lonely business being in hospital.

I was moved to a private room yesterday as the constant flow of people in the ward was getting to me. It is amazing to have privacy and peace once more. When I was alone, I read my chart, and found the nerve agony was written down as 'some pain around the drain exit site'. This is completely inaccurate and confirms my suspicions that nobody was listening to what I was telling them at the time.

The only thing of note is that the nerve problem is now flaring up randomly with no provocation.They're only flashes of pain across my thigh above the knee, and across the upper right side, and they're not as intense as the other day during vaccing. But they are making me afraid, and they are sharp enough to make me gasp. The nurse's advice is to keep up with the painkillers - I'm on ibuprofen.

From hospital - Thursday

The drain has cleared 80ml overnight, which is nowhere near enough. My leg is like a giant sausage-shaped water balloon this morning and it is completely numb, like how your arm feels when you sleep on it and have no feeling at all. When I prod it, it feels like I'm touching somebody else. But there is no real pain other than the nerve pain when vaccing, and that cannot be touched even by morphine, so I asked to be untethered from it this morning. I am now officially not a junkie!

My lovely physios came along just now and asked if I'd like to try some stairs. They'd brought a wheelchair along, bless them, and seemed quite surprised when I said I didn't need it. They were more surprised when I zipped along at quite a speed, and when I went up and downstairs at a near normal pace, they looked at each other, laughed and said clearly I didn't need them. I got a 10 out of 10. Yay! I feel like I finally did something right! I was hoping to get out of here today but now there's talk of it being Monday. In the grand scheme of things, it's not a big deal but I really did want to be home for Easter. 

I have to say, I am getting really frustrated now with the lack of communication and knowledge of what's going on. I seem to give the same information to lots of different people - 4 doctors and 8 nurses at last count - and nothing gets done about it. I am swelling up more by the hour and as of 3pm, nothing has been done. I first flagged it up 23 hours ago. I am lucky enough that I can physically get up and go make people listen to me. What if I had dementure or wasn't of sound mind? It's easy to see how things slip through the net. Patients should not have to explain the same thing to 12 different people. It should be written down, acted on and information fed back to the patient.

Update 8pm - After two miserably failed attempts by the nurses to attach a stoma bag to my drain, Mr Brackley came and did it himself with the help of skin glue and a dermabandage. It now drains through a small bag into a 2 litre bag which I can carry around. Not as neat as a suction drain but definitely functional. As of bedtime, we're at a fresh 150ml. Thank god for him. Also, he explained that the pain was likely caused by the end of the drain tube in my leg sitting close to a nerve. When the vac creates pressure, it sucks on the nerve and causes the pain. It turns out my leg feels dead because he removed the main nerve during the operation (it was too entangled with my lymph node chain). Hopefully within 6-12 months my other nerves will start to compensate a little. I should regain some sensation and stop feeling so much like I have a dead leg.

From hospital - Wednesday

Crappy crappy day.

I woke up desperate for toilet but I lay there for a couple of hours not daring to move. Eventually the bladder pain overwhelmed me so I decided to brave it; happily I got to the loo and back uneventfully. During their rounds, some more doctors came to see me; they knew about last night's pain although they thought it was around the drain site, which reiterates to my mind that the nurses didn't understand after all. I explained as best I could to the doctor, who said it was likely nerve damage and it should settle down. He said my drain wasn't vacced and we would just let gravity do its job - the lymph would slowly drip out in of its own accord. I got the sense again that nobody fully understood the pain I was in. Maybe nobody was properly listening because I was saying it over and over again; it made me scream at the top of my voice, it was like nothing I'd ever felt, it was unimaginable. And yet they were asking whether it was sharp or more of a dull ache. 

Despite a good 45-minute walk around the entire floor of hospital, the drain wasn't filling a jot. I could feel a pouch of swelling around my abdomen and hip, and by the time my husband arrived at 6pm, it felt like there were water balloons inside my thigh so I asked the nurse what would happen if she vacuumed the drain. She told me to push a few ml of morphine then she'd give it a go. The fear of the pain was almost like the pain itself, dreadful, like no fear I've ever felt before. Before this, if you asked me to name three things I'm afraid of, I'd have given you spiders, butterflies and heights. To combat them, I have made myself hold a tarantula, go into a free-flying butterfly house and do a zipwire from a 10-storey building. I am not a coward by a long way but this fear of the pain was making me feel that way and making me seem that way to onlookers who didn't understand.

After I'd pushed four lots of morphine, Alex went to get the nurse who she said she'd go slow and I could say stop at any time. She took the tube out of the old drain and said as soon as she put it in the new one, it would start to flow. One deep breath then I gave the okay. It flowed. For three seconds I thought it would be fine, and then it hit. An immense pain rushing through my leg. Against my will I started screaming, felt like my leg was on fire. I remember begging 'please make it stop'.  I guess she must have because the pain ended within maybe ten seconds. My poor husband looked like he wanted to cry and I felt dreadful for putting him in the middle of this. It's not something I would have wanted to see, my beloved partner screaming in pain.

After 10 minutes, with the drain de-vacced and working purely on gravity again, we went for a walk. After that, back in bed, we put the drain on the ground and slowly it started dripping. It's clearly not going to drain properly but a few drips are better than nothing.

From hospital - Tuesday

Tuesday was a good day where I didn't need any morphine, and my drain was filling up nicely. I saw the physio, started my exercises to get my lymph moving properly, and even went for a 30-minute walk around the floor. I had a blood sample drawn and I ate a little food without being sick. My two best friends came to see me, which was lovely, and all was well.

And then.

Just before bed, I asked nurse if she would empty my drain because it was just shy of being full and I didn't want it to overflow in the night:

She got a new flask, detatched the tube from the old flask, pressed the vacuum button and attached it. The vacuum sent a swirl of blood, clot and fluid swishing out into the new drain and then it began. AGONY. My vocabulary is not impressive enough to fully describe the pain. The closest image you can get is of ripping open your thigh, pouring acid into your muscles then taking a blow torch to it. I was aware that I was screaming very loudly and I was unable to stop. I knew I was making this noise but it didn't sound like me. I was aware that people came running into my cube and after a few seconds that felt like an eternity, someone de-vacced the flask so the liquid stopped gushing and the pain ended. My main memories are of the taste of blood (I had bitten my hand so badly it was bleeding) and of the nurses not seeming to understand what I was telling them (later confirmed by the inaccurate notes written in my chart). I certainly didn't understand what was happening. All I knew is that I couldn't stop crying even though the pain was gone. The pain was right across the thigh above my knee. There is nothing obvious there to hurt - it's well away from any incision and drain areas. (ETA I later found out the drain was sucking on a nerve...the agony was nerve pain).

The nurse told me they had stopped the drain's vacuum and to load up on morphine to get me through the night. I went from 45ml to 97ml that night through fear the pain would come back. It didn't but I was too afraid to move even a millimetre just in case.

Post-groin dissection - From hospital - Monday

I am writing this from my hospital bed, able to type again now my hand's not hooked up to morphine. It's not all good news, as you will find out, but I will write and post each day at a time so it's in manageable sections. My experience of going into theatre is pretty much the same as last time so I won't rehash it. The surgeon marked these two extra moles to remove (there is a third under my wide local excision scar but they didn't remove it because they ran out of time):

Mr Brackley told me just before I went under that my CT scan had come back as clear (hooray!) and I went in at  11am then woke up in recovery at 2.35pm. I had been told the operation would take 2-3 hours so I was wondering why it ended up a lot longer. I later found out it was a combination of the extra removal of two moles, and because I needed to be intubated so I could breathe properly. 

I was hooked up to morphine via a device called a PCA - patient controlled analgesia:

Basically it's what it sounds like - a machine with a big syringe of morphine inside. The syringe is attached to a tube which goes into my hand, and it puts me in control of my own pain relief although there is a 5-minute lockout between doses to prevent overdosing. All I do when I want a shot is press a button and it is delivered painlessly through this device in my hand:

The reason there's a capped-off bit is that I initially had a drip in there to hydrate me too. The morphine was making me very sick and the lowest point came that evening when I needed the toilet for the first time. After rejecting a bedpan and a commode, I decided I could walk across the room to get to the loo myself. With my husband holding me up and the support of my wheely stand, I managed to take three steps before the pain made me stop. I did get there eventually and discovered that one of morphine's side effects is difficulty to urinate. What usually takes 30 seconds literally took 20 minutes, and I had to keep shouting to the nurse and my husband that I was okay. When I had finished, I had to go the 15 metres back to my bed in a wheelchair, during which I needed a break to stop and throw up. The first day was always going to be the worst, and later that night I had an antiemetic (anti-sickness) jab which did wonders and I didn't throw up at all after that. I also discovered that I am to be given anti-coagulant injections into my stomach each night and antibiotics.

This is how much fluid had collected by the end of the day:

Bucket List

More for fun than because I plan on dying, I have decided to write a bucket list. Some people's are really weird and some websites have ideas for them which are even weirder. For example, go and sing nursery rhymes in a supermarket.


Why the hell would I do that?! Anyway, here is mine so far:

• Save a million battery hens
• See the Northern Lights (I have been on a Northern Lights sled tour but they didn't oblige)
• Learn to street dance
• Go on a segway
• Ride a motorbike
• Go on holiday to somewhere with white beaches, blue seas, palm trees and colourful fish
• Abseil
• Run a marathon
• Ride in a hot air balloon
• Go to the Day of the Dead festival in Mexico
• Visit as many countries as possible
• Go in a helicopter

This time tomorrow I'll be being wheeled into surgery. I bloody well hope I wake up from it!