The opening ceremony and start of the battle

11th September 2017

Today was the day I was to start my first treatment. It was the day when I could begin my fight with some powerful weapons and ammunition in the tank. I wasn’t fully aware of what to expect however in my mind I had been preparing for this day the best that I could. Ste came with me for the appointment we had to see the oncologist first to check that I was ok to have the treatment. There’s usually a blood test involved a couple of days before just so they know everything is as it should be.

We had seen the oncologist and the nurse the week before to check everything was fine and that I was happy to go for the treatment. It was a that appointment when Ste had asked the question which probably crops up in people’s minds as soon as you mention Stage 4 cancer…. “what is my expected life expectancy if I don’t have this treatment?” She asked if I wanted to know and I said no. I don’t know why, part of it might be because I was scared but also part of me doesn’t want to have a statistic tagged to me that pre-determines how long I’m going to be around. I might change my mind later down the line about this but for now I didn’t want to know. For me whatever that statistic was I was going to defy all fuzzy logic anyway. What a statistic wouldn’t be able to do is factor is my mindset, my approach to diet and health, my overall well-being, my emotional support and general stubbornness to want to stay around for many years to come. I have far too many things I want to do and places I want to see (these may have changed to destinations like Siberia and Greenland as oppose to Florida and Australia more recently) but I will be doing my best to keep that grim reaper well and truly out of sight for a long time yet.

We didn’t get the scientific response to how long but what we did get was the response that said if I didn’t have the treatment it would be extremely serious. It was still my choice whether or not to have the treatment but I can’t understand why somebody wouldn’t want it. For me it was my golden ticket to being cancer free and I wasn’t going to waste it by drinking from the chocolate lake along the way or pissing off some Humpa Lumpa. I was going all the way in the lift to meet Mr Wonka himself.

Another question we asked in that meeting was what about having another child in the future. We were told that no-one who had, had immunotherapy had asked that question (I’m not quite sure why). Apparently if we did conceive it would be highly likely that my immune system would attack the baby. Both me and Ste had discussed having another child as the first few years with D and A were honestly a blur whilst both working busy jobs, having very little money and even less sleep we thought third time round we could all be a bit more relaxed and experienced about it all (as long as it didn’t follow the sleeping pattern of child No 2 that was). See when child No 2 arrived we were just getting our heads round being parents and how much of a joy that was. Child No 2 brought destruction, sleepless nights when you forgot how many times you had actually got up, not to mention the endless supply of vomit (he had reflux).

It was still a joy don’t get me wrong but it was chaos. I often got to work wondering how I got dressed, got there and if I actually still had a child sat in the back of the car instead of dropping them off at nursery. I remember the first day back at work and I dropped both children off at nursery. Both children were in the same nursery room which was quite rare (most normal parents wait at least a couple of years when they’ve forgotten how hard it was before they decide to go through it all again). A couple of days prior D (who is normally extremely caring and loving) had decided that she wanted to dig her finger nails into her brothers face. I can’t remember what I was doing the time it happened. I was probably counting to ten in the bathroom whilst having a wee and being put on hold to bank about some additional bank charges. A  few days later the scabs started to appear it wasn’t the best look. He didn’t fully look like hell raiser but it wasn’t exactly a first picture moment. I remember being asked to sign a disclaimer from nursery to say that he had basically come looking like that. I was a little bit embarrassed to say the least.

There are plenty of incidents like this when the kids were younger. There was the time A managed to lock me and D out of the house when he was barely 15 months old for a good while. There was the time D decided to play hide not seek in the biggest M&S she could find (full panic mode struck). There was the time when foolishly we had a lie in and awoke to a ram raided house with tipped up mattresses, toys scattered all over and two kids in the mix of it all “just playing” quietly. There was the time both were colouring nicely in the log cabin when D assisted A in painting his full leg and arm blue. I walked in to find a smurf smiling at me sitting on our nice cream rocking chair. Not forgetting the time all the bathroom toys were nicely packed away in the toilet for me but to add the icing on the cake one of the two had decided they needed to wee on them despite still potty training at the time. Yes all these moments and joys made us think let’s have another, how hard can it be!

We had put it off for some time but it was always there in the background ideally before I was 40. Now I was sat in a room being told that I couldn’t have another D or A. I know it may seem like the least of my worries but I was extremely upset. You don’t realise how much you want something until somebody says you can’t have it. If you’re reading this and are due to be treated with immunotherapy then I would suggest you ask the question to your doctors and nurses before you start your treatment. It might be that you don’t want children or can’t but things can change you never know so it’s always worth an ask. I am extremely lucky I know to have not 1 but 2 perfect children and despite the chaos they bring these memories are the best and some of my happiest. Now more than ever I look a pictures when the children were young and cling onto those moments of laughter even if at the time I probably didn’t appreciate how special they were. Going through all this has made me realise how precious this moment is right now and I am lucky enough to have a family to share it with. My children are still young and I want them to have the best childhood memories full of fun and adventures ones together as a family. This treatment is my golden ticket to all this.

So I had been given the green light to have the treatment. Once everything is given the ok they will then get the treatment and make it up ready. They don’t make it up beforehand just in case the patient doesn’t turn up for the appointment otherwise it could be wasted. What you don’t always appreciate until you are sick is how much the cost of treatment is. Not to mention all the care, test and scans. I can definitely say I’ve had my moneys worth from the NHS since being diagnosed with cancer. Myself and Ste sat in the room where I would have my treatment. We were asked to watch a dvd together about chemotherapy to try to prepare us as a dvd hadn’t been made yet for immunotherapy yet so we have to improvise. One of the chemo nurses came and put a cannula in my wrist. I don’t know why but I asked for it to go in my left arm as this was the side that predominately had cancer so in my mind the treatment would go to that side first (I’m told it doesn’t work like that but go with what you believe).

What surprised me at my first visit to the chemo ward was how many people were sat there having treatment. I was also surprised how open it was. There was only one or two side rooms and we were fortunate enough to get one of these that later we shared with an older lady who was also having immunotherapy. There was no privacy and no shame everyone was there for the same purpose. They were sat there hooked up to the machines reading or chatting with their significant others like it was an everyday occurrence. It made me realise I was definitely a rookie in this game and had a lot to learn and a lot to live up to.

I was to be given two drugs;

(YERVOY) Ipilimumab known as Ippy (https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/biologicaltherapies/monoclonalantibodies/ipilimumab.aspx)

and

(OPDIVO) Nivolumab known as Nivy (https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/biologicaltherapies/monoclonalantibodies/nivolumab.aspx)

Most people are just given the one drug normally Nivolumab but as I was generally fit and healthy I was to be given the two drugs which improved my odds by a lot (from around 40% to 60% success rate). I was to have four rounds of the two drugs together three weeks apart. This was the first round. I had Ste by my side who is generally good, he knows not to talk to me loads when I’m nervous or anxious about things, he knows that sometimes I just want someone to ‘be there’. I brought along my journal where I had written down my affirmations which I repeated in my head over and over about the medicine working it’s magic through my body. I also brought my Anti-cancer book (this is a fantastic book I would definitely recommend reading this to anyone who wants to know about foods associated with cancer and also foods to supplement the treatment/prevention of cancer). I also had my head phones and the music choice was Florence and the Machine due to me forgetting to download any mediation music or other music prior to the appointment.

I was sat there and we were ready to start. First a cold saline flush was put through to make sure the drip was working. The bag of medicine was then hooked up to the pump machine. It seemed strange to think this clear bag was probably worth thousands alone in monetary terms and to me if it was to give me my cancer free golden ticket it was priceless. Ipilimumab was the first drug to be given. From my understanding this is the stronger drug of the two and the one which may have caused me the more severe side effects later down the line. The chemo nurse set the pump for 1 1/2 hours and we were off. What did I feel…….. absolutely nothing. I don’t know what I was expecting to feel maybe some tingling or discomfort but not nothing. I just sat back and relaxed. The machine did keep beeping quite a lot of the time but this I found out was when I moved my hand and arm and blocked the line or when the battery to the machine was running low. All these sounds later became familiar sounds which spark little reaction (probably like when you hear a neighbours alarm go off and you remain seated in the sofa complaining about the din affecting the latest celebrity (non-celebrity) reality series whilst some scally is proudly walking down the road with your neighbours 50 inch plasma TV) but the first time I was all a panic thinking I had broken the machine.

Once the drip had finished a saline flush is put through again to make sure every last drop goes through. It’s literally liquid gold without the head rush and giggle fits. Next it was time for the Nivolumab bag. This again was around an hour and a half. During this time we were offered tea and refreshments but I declined both due to a recent change in my diet but also because for some stupid reason I didn’t want the food blocking the medicine (I did put a caveat at the beginning of these blogs that I am in no way medically trained). During my first treatment Ste took a picture of me hooked up to the machine (it’s the one that’s on my blog). I don’t know why he took it as were not normally one of those ‘type’ of couples and I also don’t know why but I put up my fighting fist. Now I look at this picture as key milestone in the start of this battle. I think family and friends also see it as a positive fighting approach to all this.

So my first treatment was done. We took off home with an emergency card to phone if there were any changes. Ste drove back then I went for a nap (I’m not sure whether this was because I was tired from the treatment, emotionally tired or just general working mum approaching 40 tired). I woke up a few hours later. We spent some time with the kids and sat round the dinner table. I think from memory the kids had been gymnastics so it was later than normal. We told them to go upstairs and get ready for bed then they could come down and have supper (dinner), which they both did. After they had both finished A went upstairs, came back down and said “Daddy there’s all black in the bathroom”. We both rushed upstairs to an extremely smokey bathroom with a toilet roll on fire. Now as far as I know Andrex haven’t yet developed self combustible toilet roll so it must have meant that one of the children had set this on fire. Luckily due to the thickness of the roll (it was a new one) it hadn’t fully caught fire so there weren’t loads of flames which was fortunate as we have a full height blind right next to the toilet roll holder. There was however smoke everywhere and the smell was awful. It definitely got to your chest

I turned out that A had been experimenting with a fire lighter in the bathroom that I had used to light candles a couple of days previous. Not only had he lit the toilet roll. He had left it and shut the bathroom door then gone downstairs. As you can imagine there were words exchanged but all in all everyone was ok and we think he has learnt his lesson here. There was no malice involved just an inquisitive boy who likes destruction. Who knows, maybe it was his way of celebrating with an opening ceremony of our cancer battle. As I lay in my bed that night pondering on the day’s event tears streaming down my face (not from crying but from general smoke in the eyes) I had also learned a valid lesson that day……..maybe two children were enough.