The next couple of days passed in a bit of a haze to be honest. We don’t have children – other than the Ginger Prince obviously – and, as such, our lives are fairly selfish and we don’t have to work to anyone else’s routine.
With me not at work, my partner working shifts & being part vampire who does his best work at night, we were starting to stay up later & later. I’d love to tell you this was because we were doing something constructive but you already know that would be a lie. Re-runs of Auf Wiedersehen Pet were becoming our staple diet. That’s all very well when you are on holiday, but if you’re supposed to be taking your meds at the same time every day and ensuring you have 12 hours between them, not forgetting the empty stomach part; well, it makes it messy.
The side effects were coming thick & fast, each one more delightful. Cast your mind back to the worst hangover you have ever had. The one where you say you’re never drinking again. We’ve all been there. So you lie in bed wondering if today is the day you will die of alcoholic poisoning and asking yourself why Cookies & Cream vodka shots seem like such a good idea AT THE TIME. Well the side effects were starting to feel a lot like that – without the fun part first.
Pounding head, nausea, sinus pain, feeling like the flu is starting, oh and a little bit of acid reflux thrown in for good measure. One morning I woke up at 5am, the nausea was so bad I had to wake my partner who – serious brownie points here – got up, not a sigh or a moan in sight, and brought me peppermint tea and crackers. I know, he’s a keeper!
Actually, on the subject of my partner, I have decided I can’t keep saying ‘my partner’ and ‘my boyfriend’ makes me sound about 11 years old. So I am going back to twitter speak and he will, henceforth, be referred to as OH. For those of you not in the know, this means Other Half. Apart from that, it always amuses me as I read it as Ruth Jones in Gavin & Stacey saying ‘Oh’.
On the Friday of the first week I got a call from the Novartis nurse. Novartis are the pharmaceutical company that make my meds. I had agreed to let them contact me at my first immunotherapy clinic. We arranged for her to visit me at home the following Monday.
Monday morning arrived and I opened up the various bottles. The Mekinist has to be kept in the fridge – personally I think this is only to make it look more important than the Tafinlar, but I guess there probably is a scientific reason for it. Not just that Mekinist wanted top billing like film stars and when they get refused top billing they insist on the ‘also starring’ at the end.
My meds cocktail is ‘also starring’ Lecalpin, the blood pressure tablet. So the breakfast cocktail is two Tafinlar, one Mekinist and one Lecalpin. They have to be taken either two hours after food or one hour before food. Either way, your stomach needs to be empty. You can’t take them with anything else other than a large glass of water. Now, even I am not on the pop at breakfast time, but I generally take any tablets with a fruit juice or a glass of milk. No such luck with these bad boys.
I may have eluded to my occasional dramatic ways; well me swallowing tablets with water ranks right up there in Celine Dion fashion. Now I have learned to add photos, here you go with a pic of my morning cocktail:
The two big capsules are the Tafinlar. There is an extra goodie on there as a new blood pressure tablet has since been added, but that’s a whole other story!
Today, being the first day, after I took the cocktail I went back to bed. To be honest, I was feeling a bit sorry for myself. I’ve deliberately stayed away from the delights of Phil & Holly in the mornings as I know I would become addicted and never want to go back to work. When I got up at 11am – I know, the sheer luxury of it all – I was boiling hot and my face resembled a beetroot. This went on for about an hour. I appreciate a rosy complexion is supposed to be healthy but this was more the face of someone who had downed a bottle of red in the sauna. Not actually something I have tried, but there is still time.
The meds need to be taken with 12 hours in between each dose, so at 8pm I took the remaining Tafinlar and sat back expecting more hot flushes. Not so. As I was soon to discover, these meds are the gift that keeps on giving with a surprise side effect most weeks. As I sat on the sofa, my arms started to hurt. I had been warned of joint pain but expected it to be shoulders or knees. This was between my elbows and wrists and felt as if my arms were swelling. It was the strangest sensation.
My partner thought I was having some kind of pink elephant moment as I sat there, staring at my arms! But I genuinely expected to see them swelling. Of course, there was nothing to see – other than maybe more of my marbles getting lost.
That old friend nausea also came to play for a while and brought along a cracking headache with it. Thankfully neither of them lasted too long and Day 1 was over.
Two days later we trekked back to CUH but this time to the Dunmanway Ward. If you are ever lost in CUH, give me a call. I can probably direct you to pretty much any ward at this stage. But before that, was the issue of the bloods I had been reluctant to part with earlier in the week.
The Blood Room is located just down the corridor from the dressing clinic but is operated with a ticket machine – you pull your ticket and wait for your number to be called. We arrived at 1pm – big mistake! As I’ve told you before, the ladies in the blood room are super efficient and have that needle in your veins before your bottom is comfy in the chair. But I guess even vampires need a lunch break. Small tip from me – avoid lunch times at all costs. There was a huge amount of people all waiting with their little slips for the various blood samples required.
Again, I dispatched my partner to go & buy a paper (well, go anywhere rather than stand looking crossly at everyone) and sat back for a nice chat with an elderly gent next to me. He started to tell me how the English were a good rugby team, but not a great one. I could tell he was launching into a favourite subject. However, as I am Welsh, not English, he wasn’t getting much of an argument from me. In fact he lost interest in me almost instantly!
At 1.30pm there was a flurry of activity. The vampires returned and had the queue of people cleared in no time. My bloods were taken in the first attempt – they are geniuses.
The Dunmanway Ward is different again from the Orchid Centre. It has a lovely reception area where, I suspect, the receptionist will remember your name after two visits. If you are going to start immunotherapy, it’s a place you’re going to become very familiar with. It’s small and actually very welcoming.
My oncology nurse introduced herself and took us through the side effects of the combination of meds I would be taking. As I have said to you before, this is only my interpretation of how things work. So whereas normal chemotherapy blasts everything in your body, these meds are targeted. They stop proteins being formed that can become tumours.
Obviously there are going to be side effects. The main ones are flu-like symptoms, nausea and joint pain. There are lots of other terrific little bonus side effects which I will come onto in later posts.
Of course, she took my blood pressure which was sky high. Thankfully she appreciated that coming to see her was pretty stressful and left it to me to speak to my GP about the meds for that. I can’t say that I feel really stressed when I go to these appointments, but I guess I must be as my pulse races and my blood pressure zooms up, yet in my everyday life I’m a pretty laid back kinda gal.
So, if you’ve ever been on holiday in a really warm country and maybe partaken of one or two alcoholic drinkies, you might have experienced your ankles swelling slightly. I know this is the only time I have ever experienced it, until now. Because my lymph nodes are gone the fluid in my left leg is not moving as it should, causing the swelling. For all of my exercises, the lymphedema had set in and was really quite uncomfortable. The swelling was on my ankle, the top of my foot, behind my knee and at the very top of my thigh – that’s a lot of swelling on a normally skinny little leg.
I love my converse trainers but I was finding they didn’t give my foot any support so I had to dig out – from the very back of the wardrobe – a pair of actual trainers. These have been worn so infrequently that even though they are about 5 years old, they look brand new. I suppose at least they went with my sporty pants. My ankle and the top of my thigh were really warm all the time with the swelling. Watching telly with my leg over the back of the sofa has become my go-to position! I do appreciate this isn’t very lady-like, it also annoys Roger no end.
You may remember my ankle required an MRI. This turned out to be all clear and the cause for concern was probably created by a sprain years ago. It was actually the weekend of Lady Diana’s funeral. I was in a night club with friends, on the dance floor, when a fight broke out. Two young ‘ladies’ were throwing punches right next to me and one of them landed on my foot. This has come to be known as a comedy injury. If you don’t end up with one, have you even been on a night out?
We got a taxi back to my friend’s house and I doubt I gave my ankle much thought until the next morning – alcohol is a marvellous thing. The next day we went to visit my friend’s parents who were holidaying in their caravan just outside Scarborough. Her mum didn’t like me – thought I was a bad influence, which I absolutely was definitely not – but she did suggest that my ankle didn’t look great and we should maybe go to A&E. You can probably picture the A&E visit; two single women, both old enough to know better, very hungover and a young doctor. Cue lots of giggling and double entrendres, offers to listen to my chest with his stethoscope etc. I would like to think we cheered up his day.
I remember someone telling me that I would always have problems with that ankle. Well I certainly didn’t expect that problem to be a very unattractive swelling one.
I agreed with the oncology nurse that I would start to take my meds the following Monday….
When I was told the name of my oncologist, my friend immediately googled him. He had graduated in Pharmacy and, not content with that, he had graduated from the Royal College of Surgeons with an honours medical degree. Let’s face it, this chap was an over achiever. But isn’t that the very man you want on your side at tricky moments in your life?
He was relatively young and actually quite handsome. I text my friend that I thought I had met him one time in Coppers. For those of you who have never had the pleasure of Copperface Jacks in Dublin, it is an experience. A lot better for the ladies, I guess, as there are about 4 men for every woman – it’s THE best place to hear cheesy chat up lines and I doubt my over achieving oncologist has ever darkened it’s doors. But for a moment she was fooled and there was an immediate ‘oh you didn’t?’ text back. Hey, you’ve got to make yourself laugh on the dark days!
So off we went back to the Orchid Centre in Cork University Hospital. As this was my first time under the oncology team, it was a new start so everything had to be measured again, height, weight (urggh!), non smoker etc. My over-achiever turned out to be a lovely, very approachable man.
He explained that only 30% of melanoma patients had the particular gene to undergo the treatment he was suggesting to me and that I was very lucky to be in this 30%. I am not a lucky person generally – I don’t win raffles or competitions – so this was a new experience for me. Just to be clear, I don’t mean in life. In life I know that I am incredibly fortunate. I know that I was fortunate to be born into a lovely family, that I’ve already kicked melanoma’s butt once and that I will do it again and that I have a collection of amazing friends.
So I will try to explain to you, as I understand it, what my treatment will be doing. If you are about to go through this, please remember this is just how I have made it clear in my own head – it’s not very technical or medical.
The gene in question is not a hereditary gene, rather the gene of the melanoma. The BRAF test shows the oncologist whether or not this targeted therapy is suitable. In my case, it was. He prescribed two medications – Mekinist and Tafinlar. This combination is specifically for metastatic melanoma. Metastatic means it has moved from one place to another on your body – slippery little sucker.
He also explained that this medication must be taken exactly as prescribed as you can overdose on it – always nice to know. You need to have 12 hours in between each dose and you must take them either 2 hours after food or an hour before food. This doesn’t seem too difficult, but I will explain to you in a later post, it can become a real pain and definitely not conducive to a wine, cheese and nibbles night.
I would be on this medication for the next twelve months so the prescription needed to be made out to my choice of pharmacy. I wasn’t sure of the exact name of my local pharmacy so he googled it for me. Much hilarity followed between him and his nurses when a photo of the pharmacy popped up and they could see it also sold fishing tackle! Just as an aside, it also sells worming tablets for Roger, but I decided not to share that bit of information.
Before the treatment could start, they needed to make sure the rest of my organs were all working well and to give them a comparison for later on in the treatment. I was dispatched to have an ECG and an ultrasound on my heart. The ultrasound proved a little problematic as they needed me to lie on my left side. Sorry, no-can-do. They managed to work around it. For those of you ladies who have had ultrasounds for pregnancies, one for your heart is very similar. The same type of gel and machine but this time the sensor is pressed down into your chest. Needless to say any fancy underwired bra would hinder proceedings, but you are covered up to save your dignity.
Back in the Orchid Centre a nurse attempted to find a vein and take some bloods. Luckily she spotted a waste of time before puncturing me and as I would be back later that week, I agreed to see the lovely ladies in the Blood Room then.
All the tests completed and prescription in hand, we headed back home to pass on the good news to the pharmacy that I would be becoming extremely familiar with them over the next year.
I was to return to CUH in two days to attend my first immunotherapy clinic and meet my oncology nurse. It had been a very long day and by the time we got back home my left leg had started to swell badly. I did my newly discovered yoga pose which consists of shuffling your bottom up to the skirting board, putting your legs straight up the wall and your arms outstretched either side on the floor. It’s actually very relaxing and excellent for moving lymphatic fluid. But even then, I knew lymphoedema had set in.
Sunday morning came around and it was time to remove the very last of the dressings and have a full shower all by myself. This was a considerable milestone.
Where the wound site started was still very tender and slightly swollen. I wasn’t going to be modelling any bikinis and I didn’t linger for long by the mirror. I had envisaged this moment to be rather fabulous and had the posh shower gel out and the best conditioner.
The reality of the situation was, it was sore as hell. The force of the water was harsh on the wound and I was convinced I saw some bleeding. Before you start to panic and think this is a 999 moment – it was completely my imagination. There was a small amount of scabbing on the wound site and these washed off in the shower. The experience was not the magical one I had imagined.
I then had the age old argument of do I use Bi-Oil or E45 on the site to minimise scarring. Previously I have been a Bio-Oil champion but I do appreciate it can be quite greasy. The Dressing Nurse had said not to waste my money on it and that E45 would do just as well. I am genuinely torn. As it turned out, the decision was made for me. When I took out the E45 from the medicine cupboard it had a best before date of November 2017 – a tad out of date. Impressive to know that we had brought that all the way back from the UK! Actually when we looked at most of the other potions & lotions in that stash, they were nearly all out of date. Back in the day I am quite certain my parents never read a best before date, but my partner can be a bit paranoid about all of that so a big throw out was completed.
For anyone facing this themselves, I also used a gel from a local Herbal shop. The gel is called Z Gel. I found this to be fantastic. Not too greasy but very soothing. Like most things, it is down to personal preference.
Foolishly, I also thought that once I was staple and drain free I would be able to sleep on my left side. Not so. This actually took several weeks to become any way comfortable.
A small concern was that the top of my thigh appeared still to be numb and a little swollen. I had also noticed that my left ankle was starting to swell. I doubled my efforts on the exercises to avoid lymphedema.
That week the appointment arrived to see the oncologist. On a particularly bad day when I had been feeling a bit down (before the drain had been removed) my partner had said to me that I had ‘done the hard part’; the op was done and it was all uphill from there. I had the distinct feeling that the meeting with the oncologist was going to change that….
Finally, the day came when the drain really would be coming out. It had been in for four weeks. I’d love to tell you I had grown to like it, but I hadn’t. The area on my thigh where it had gone in had become quite sore and, I hope you’re not eating, maybe even a tiny bit smelly. I had become completely paranoid that I would catch the tube on something and yank it out at in inopportune moment. I had visions of catching it on the corner of a table in a café and the contents spreading down my leg for all to see – I know, it’s not the stuff of dreams.
It has to be said, we drove to Cork fairly apprehensively. I knew the collection of fluid was considerably less, it was less than 25ml each day, and it was certainly clear, but there was still an unspoken fear that the team might say it had to stay in even longer.
The dressing clinic seemed to be even busier this particular morning and a few familiar faces nodded a greeting to me, but we did manage to grab a chair each this time. Katrina (guardian angel nurse) appeared out of nowhere like the chap from Mr Benn (if you’re too young, google him) and ushered me into a bigger room where the beds were in a row & curtains drawn around each one. Not as private as the previous visit and we did have to listen to the elderly gent next door talking about ulcers on his leg from sitting too close to the fire – I know, but I like to build you a picture.
A dressing nurse arrived, removed the remaining dressings whilst discussing the upcoming All Ireland Final & we waited for the team to arrive. She was Cork born & bred but she would be shouting for Kerry to beat those Dubs. My partner was just about to share his opinion when, probably luckily, the team arrived.
In the very small cubicle, I am lying on the bed – thankfully with my sporty pants on again – my partner is squeezed into one corner next to the curtain, Katrina & the dressing nurse are the other side of the bed and in comes the consultant with not one, but three students. It’s busy in there. I agreed to let the students join the party, why not, we all have to learn. They were American and were suitably impressed with my old scars and my new one – I like to think I can consider myself International now.
Good news at last! The drain could be removed and the remaining staples could also be taken out. So remember I have spent the last four weeks convinced that this drain would drop out at any minute. I lay back and Katrina asked me to take a deep breath for the drain to be removed. I kid you not ladies & gents, I felt the tube pull as far up as my belly button! It was the weirdest sensation I have ever felt. It was over in seconds and the hole in my thigh was just a tiny spot. I said to the nurse I hadn’t expected to feel the tube so high up. ‘Oh’, she said ‘yeah, it’s a foot long’ – four weeks, four weeks, I had spent worrying I was going to pull the damn tube out – that thing wouldn’t have dropped out in a year!
The dressing nurse reverted back to telling us how Kerry were definitely going to beat those Dubs whilst snipping away at the nine remaining staples. Truthfully only removing the very top staple actually hurt but I grabbed a hold of my partner’s hand anyway as I figured that would stop him telling the nurse he was a Dub and they were going to smash Kerry.
My wound site was now completely free of staples and the nurse put on new dressings with instructions that I could remove these myself in four days time and have my first full, unencumbered shower. These were the best words I had heard in weeks.
I didn’t go out of there with a hop, skip & a jump; it was still a pretty slow walk, but it was a walk with no drains and no staples. It felt amazing and I only had until Sunday to wait to have a shower – this was a good day.
For those of you that don’t know the result of the All Ireland Final – it actually resulted in a draw, had to be replayed & then the Dubs did win it. But we don’t have to go to the dressing clinic anymore, maybe just as well.
To give you a bit of background on me, I moved to Dublin when I met my lovely partner. For all the jokes I make about him hating the hospital and handing me over to anyone who will take me (not in a camel exchange way), he is still the best thing that ever happened to me and I love, as they say here in Ireland, the very bones of him. Twenty three years, and they said it wouldn’t last!
He is a Dub and used to go into a cold sweat just visiting friends in Cork. We lived together in Dublin for ten years, another twelve years in the UK and headed back to Ireland in 2018. As a child, our family moved lots of times. It was never a small move to a town up the road. We went from England to Scotland and back down to Wales. This meant that I never had any firm roots, but from the moment I arrived in Ireland, it felt like home. I cannot explain that to you. I did have an Irish grandmother but I never met her. Having moved so many times, you learn to make friends easily and, hopefully, keep them when you move onto the next adventure.
When I first got the phone call that this lump was melanoma in my lymph nodes, we decided that we would only tell our families. This was based on the belief that once the lump was out, the hard work would be done and we might not even need to tell our friends that anything had happened. I think as well, unconsciously, if you don’t tell people, it’s not really happening.
If this is happening to you right now, please take my advice and share it with your friends both old & new. Not for some attention seeking exercise, but because people are amazing. I have only known the fabulous ladies that I work with for a year, yet some of them have gone out of their way for me. They have taken me out for boozy lunches and pub teas; taken me for hot chocolates & delicious cake, brought me funny books & flowers and shared pizza at home with me; kept me company when my partner has had to work. These things are invaluable.
As for my old friends, I know they hate that they are so far away, but every WhatsApp message, every card & present lifts my mood. Conversations don’t have to be about cancer – I love the messages that are just about them, their jobs, their children or their pets. A drunken text at 2am makes my day, well my night, it makes me feel ‘normal’ again. One of my best presents was a book entitled Penis Colouring Book for Adults – this gives you the calibre of my friends!
I also have a whole other branch of ‘online’ friends that I’ve made through twitter. Roger has his own account and has lots of dog & cat friends. It might seem mad to you, but anipal twitter is such a lovely place to lose yourself for a few hours. Those friends have become an incredible support, many of whom have now become ‘real life’ friends having met at events like Woofstock.
It took me a long time to share the news of what I was going through and this post is really to say thank you to all of my friends, but also to encourage you all. If you are thinking of someone who might be going through something similar, just send a quick text, even if it’s only about Bake Off, they will be so glad to receive it. Equally, if you are going through this yourself, in the words of Hugh Grant, you might think you’re Ibiza but you’re really not. Don’t try to be an island, reach out to your friends.
I’m not really one for feeling down too long. It doesn’t suit me and whilst it’s always nice to wallow for a short time and have everyone fuss around you, it’s a dangerous old road to go down, easy to slip onto but much harder to climb back off.
So I had two more weeks (might as well be years) living with the drain in my thigh and one more week of my sister in law. Take a moment reader, to note that not one drop of wine had passed through my lips during this period. I don’t normally even give up wine for a badly advised diet before a holiday. I figure that would put me out of practice for the actual holiday and I am sure this business of alcohol and calories is just a myth.
Having said all of that, I was incredibly grateful to her. She gave up two weeks annual leave from her job to look after me and keep her brother sane. Roger, the turncoat, also fell madly in love with her. I could hear them having a daily conversation in the kitchen. Him trying to persuade her that he needed treats and her trying to tell him to wait another hour. We all know he gets what he wants by fair means or foul – either the sad eyes & the paw in the air, or downright bullying tactics resulting in someone getting an injury.
That Monday morning we took ourselves off to the GP for the dressing to be changed. My GP had gone on hols and I then realised that he is married to the nurse, so she was also on holiday. There was a locum on duty and he appeared – I hope he never reads this – to be about 102 years old. I really felt massively dubious about letting him change the dressings. Of course, more fool me. He was very gentle and told me he had dealt with several ‘lazy S’ incisions in his time. He took time to show me where the staples had been removed and how well it was healing. He cut the new dressing down even further so they were less cumbersome on my thigh.
Having the dressings changed can be painful no matter how gently done, it’s more about the exposure to the air, I think, and the wound takes a while to settle back down. That evening I decided I would treat myself to a glass of red – I deserved it surely? So you know when someone doesn’t actually say anything but you feel their disapproval? That glass of red should have been magnificent, but it wasn’t. I felt like I was letting her down in some way. Don’t get me wrong, I still glugged the lot down, but I didn’t have a second or break out the maltesers for maximum enjoyment.
On most days, when the weather allowed, we went for a small walk. The drain hampered me slightly and the wound was tightening up so some days, it really was only a small shuffle on my part. We would go up to the sea front – I really do live on the Wild Atlantic Way – I’d sit down and she would go for a longer walk, collecting me on the way back. Nearly every day she would come back to find me on a bench with some old couple. I’m sure they wondered why a perfectly healthy looking woman wasn’t striding along the sea front. I wished I was.
She was also kind enough to cook for us, producing delicious home made soups and a variety of roast dinners. My partner was delighted. I’m pretty sure he was considering swapping me and letting her stay forever when she made him apple pie just like their mother used to make them. I’m a vegetarian and have been for nearly four years. This is viewed with suspicion and often derision by my in laws. I don’t blame them – I used to love meat and even now a steak can have me teetering on the edge of going back to the dark side – but an unfortunate incident occurred during wine free bootcamp. My sis in law had cooked up a lovely dinner and mine apparently had a quorn fillet, whilst they had chicken fillets. When I bit into mine, I cannot deny it was tasty. Now quorn products are pretty tasty so I thought perhaps this was a new line I hadn’t bought before. I checked with her that this was definitely quorn. Oh yes, got it from your freezer. I took another bite. This was not quorn. She got the packaging out of the bin and her face fell – yep, three years of never falling off the wagon ruined by a breaded chicken fillet! Not even a steak.
She headed home on the Friday and I was genuinely sorry to see her go. She had been a hero for us. Now it was just us. But only a few more days and the drain would be gone…
The following Wednesday was my first trip to the Dressing Clinic in CUH. My sister in law handed over the responsibility to my partner – he was, errrm, delighted.
The 100 miles journey there went quickly enough as were both buoyed up with the thought the drain would be coming out, maybe the staples, but I would be a lot less hampered and feel like I was on the road to recovery.
If you have never been to a dressing clinic, let me prepare you because I was certainly not prepared. My previous appointments in CUH had all been in the lovely Orchid Centre which is quiet and discreet. There’s not a huge amount of waiting around and it’s small enough for the nurses to know who you are. I think I had expected something similar from the dressing clinic.
You are advised not to arrive any earlier than 15 minutes before your appointment time. I can only assume, judging by the amount of people in the waiting room and corridors, that the majority of Cork & Kerry residents blatantly ignore this advice. There is the most patient receptionist I have ever met working the front desk. If CUH ever give out staff awards, this lady should certainly have one. Depending on the type of dressing you are having changed, the receptionist advises you where to sit – well stand, or maybe perch on the edge of a seat with a stranger in my case.
Thankfully, I will happily talk to anyone about any thing. I appreciate I am a woman of a certain age, but let me tell you, I was bringing the average age range down considerably. That made me a magnet of curiosity for the ladies & gents sat around me, especially the lady who had let me perch half a cheek on her seat!
I dispatched my partner to buy a newspaper rather than watch him squirm any further as the questions came in a flurry. Once he was gone I had a most entertaining conversation with the lady who actually wasn’t there for herself but for her husband who was sitting at the other end of the corridor, completely ignoring her.
Just as I was starting to worry that all of these people had to be seen before me, out of the sea of faces arrived Katrina (guardian angel nurse). She quickly took me off to a small room where the surgical team were waiting. A dressings nurse removed the remaining dressings and the team examined the wound site and the drain. I had kept a diary of measurements from the drain each day and knew that the fluid was now clear.
I know you can sense a disappointment coming & you are right. The team felt the fluid had not reduced enough and needed to be left in for ANOTHER TWO WEEKS. I tried to persuade them it needed to come out. As my friend pointed out later ‘so you tried to argue with the cancer professional and he didn’t agree?’ I guess it was a bit pointless. Their concern was that when the tube comes out, the actual hole is only a pin hole and if the fluid still needs to come out, it could force itself through the wound site. When you put it like that, I suppose they might have been correct.
They decided to remove every other staple which the dressing nurse did. She was incredibly gentle and chatted the whole time so that I barely noticed her clipping away at the staples. The team were pleased with the wound recovery and even through my disappointed eyes, I could see it was healing well.
New dressings were put on and I was advised to get them changed again with the local nurse the following week.
I cannot tell you how disappointed I was to be going home with the drain still stuck out of my thigh, The only thing I had gained was a shiny new nappy pin to hold it in place. I think Katrina (guardian angel nurse) was concerned I was cutting a hole in all of my clothing!
The journey home, the same 100 miles, took forever. I was in pain and being a general misery guts.
So far I haven’t mentioned the real love of my life, that is Roger the ginger prince. He is my ginger tom cat. He has owned me all of his life; 15 years. In that time he has sat on my lap approximately twice. He just isn’t a lap cat, everything is done on his terms. When I have been in hospital previously, he has always studiously ignored me afterwards as if I smell odd.
This day when I came home so down hearted, I took to my bed. Designated Survivor wasn’t going to cut it today. Roger hopped into bed and lay across me, staring into my face, purring. It was a very odd experience. There has been other times when I would have worried he was about to slash my face off, but this was different. Somehow, he knew I was pushed to the limit and for once in his life he was actually the thing he tells his mates he is – Roger Good Boy.
Since that day, he hasn’t changed his naughty ways completely – where would the fun be in that – but he has continued to lie in bed next to me and to sit next to me on the sofa. Maybe it is my imagination, but I think he knows I needed some comfort and he stepped up to the mark.
The following Monday, I was booked in to see the local nurse to have my dressings changed. Some of my best friends are nurses and I am forever in awe of the things they deal with on a daily basis. However, let’s be honest here – some nurses verge more towards tough love rather than an arm round the shoulder. I cannot deny, that might be exactly what the patient needs in lots of circumstances, but I am a signed up member of the wimp anonymous team and I was genuinely nervous about having these dressing changed. This was really based on nothing as I knew she wouldn’t be removing staples (you know, the ones they said weren’t there) but I knew that the PIKO dressing would be unusual.
My partner was delighted to find that my sister in law was more than willing to attend the appointment with me – in fact I think I saw flames coming from his heels as he left us at the surgery.
The nurse was, of course, absolutely lovely. As suspected, she had no previous experience of the PIKO dressing but the hospital had advised a normal dressing would also be fine. I guzzled down some pain killers with a bottle of water – some times a hip flask is not appropriate – told myself to be brave and laid back for the big reveal of the wound site. I know from previous operations that you should never look straight away as everything looks gory. When I had my original melanoma on my left leg the nurse specifically told me not to look. Of course, I did look and had a complete hissy-fit; the gauze was stapled onto the wound site and looked for all the world like a leather chesterfield sofa!! I’ve never fallen for that again.
Actually, the nurse had very little cleaning up to do. The wound was incredibly clean, presumably a testament to the surgical team. Exactly as Katrina (guardian angel nurse) had described, the wound was in the shape of a long, lazy S. There was 18 staples. I am thankful I didn’t a) break the MRI machine and b) get stuck to the magnets in the machine.
The nurse cleaned the wound with a cooling solution and it was a huge relief to have the pressure taken off my inner thigh. I must tell you at this point, she did comment on my white sporty pants – so they hadn’t gone completely to waste.
After the initial relief of the dressings being changed, as the afternoon wore on, I began to be in quite a lot of pain. The PIKO dressing had kept everything tight and compressed. Now, whilst there was no longer the pulling feeling on my thigh, the wound itself was able to stretch out slightly and pain killers were required (without the red wine).
The drain in my thigh was producing approx. 50ml of fluid each day. This is fluid that would normally be dealt with by your lymph nodes, but mine were no longer there. At this point the fluid was still quite bloody looking as a result of the operation. The nurses in the ward had explained that it would eventually look clear and would reduce as time went on. I told myself this was only for two weeks.
Sleeping at night was quite tricky as turning over onto my left side was impossible. Why do we only want to do what we can’t? I will now tell you a story from my previous melanoma experience that one of my friends has held over me for all these years…Whilst still in hospital I had fallen asleep and in my sleep must have leaned over onto my left side. Remember, I was bandaged heavily on both legs due to skin grafts. As I woke up I realised that I had managed to position my head out of the bed and it was actually resting on the inner shelf on the bedside locker. I tried to pull myself back into a normal sleeping position, namely my head on a pillow. I was stuck! Having laid there for what seemed like forever, I eventually had no option but to press my alarm bell which was, luckily, tucked down the left side of the bed. A nurse came to my rescue. Once she stopped laughing, she put me back into bed. It’s a wonder I wanted to sleep on my left ever again.
During the next few days the pain was bad, but held easily at bay by pain killers and binge watching Designated Survivor on Netflix – can highly recommend it.
Only one more week to go to have the drain removed…..