Late Octoberish – in the Barracks
After a few days in hospital this is where my memory gets a bit hazy. There were days where I wasn’t sure what was going on or what had been said to me due to a mixture of drugs and just generally being unwell. On one particular occasion I remember being led in the bed with three doctors talking to me. I felt as though I was underwater in a gold fish bowl, I could hear the words being said but it wasn’t registering in my head (I think the kids seem to suffer from this whilst glued to the television). Another occasion I accidentally tried to swallow an orange foam ear plug thinking it was one of the tablets I had to take. In my defence there were quite a few, all in varying in colour and size. The chewiness sort of gave it away in the end. I’m not quite sure what the medical term is for this haziness state but I think my friend summed it up quite well recently when she said “well you were off your tits.”
I had been on a mixed bay ward for a couple of days and had sort of ‘settled in’. I say ‘settled in’ the sense I knew where my bed was and had managed to acquire a fan and I was all too familiar of where the toilet was. I didn’t want to be settled though. I just wanted to be home with my family and I was getting slightly aggravated by some of my ‘roomies’. When I think back this is sort of how I know I wasn’t that poorly, as a few days later I was completely oblivious to any of this. All their little quirks (which I’ve mentioned before we all have) later seemed irrelevant or unnoticeable. A week or so later I came to empathise with their pain, requests for help and grateful for their company either direct or indirect.
It’s safe to say there was a mixed bag of people on my ward needing varying degrees of care. What I couldn’t get my head round at first was the number of patients who weren’t actually oncology (cancer) patients and had been put on the ward due to the lack of beds in the hospital. Some were just merely there as a stop gap until outside care had been arranged or even just signed off. From what I witnessed in some instances I honestly don’t think hospital really was the right place for them, they needed specialist care. It’s quite upsetting to think what will happen in the future as the population grows when you see what a strain the NHS is put under. They were patients though and like everyone else the nurses and doctors were doing their best to ultimately get them better and hopefully ‘home’ or at least to provide them with pain relief and care.
One of my roomies in the far corner of the room was constantly cold and unfortunately, I was the complete opposite having serious temperature spikes. When this happens, your body starts to shake uncontrollably and you feel extremely cold. The only way to stop the shaking is to try and bring your temperature down, which involves stripping the covers off, cold flannel compress to the head and switching the fan on full pelt. This poor lady in the far corner must have felt like she was standing outside a plane jet at a UK airport in the pouring down rain after spending a few weeks in a hot sunny destination. I did feel guilty but at the same time the nurses are trying make sure you’re ok as well.
There was another lady next to me who was quite elderly when I first got in she often kept me awake with her moaning and groaning. I got slightly frustrated with this until I later realised, she couldn’t talk very much and I think she may have had Parkinson’s disease. One day I helped her and took an instant shine to her. From then on, I made it part of my daily routine to go and see ‘Nancy’ even if it was just to say ‘hello’. It gave me a purpose and felt good to feel like I was helping someone else. I think the feeling was mutual as well as every time I popped in her little face would light up.
Being Transferred to the Penthouse suite
My temperature spikes didn’t seem to fade nor did my relationship with the bathroom. I was stacking up the cardboard cowboy hats for fun. See one of the main things that they try to keep a track of in hospital is the amount of fluid going in and out of your body. The only way they can do this is by you keeping a track of how many jugs of water you’ve had and by measuring the amount of fluid going out. This unfortunately means loosing any dignity and weeing in a cardboard cowboy hat (urine sample) and signing you name and the time on it with a pen so that it can go in the slush machine to be measured.
This is fine when things are ok but when your ‘off your tits’ so to speak this task became increasingly difficult. After mustering the effort to drag myself up out of bed along with my new friend the IV drip whom I had just managed to unplug and miraculously squeeze into the bathroom with, marginally escaping yanking a canular out of my hand or setting some alarm off. Signing and dating a cowboy hat full of urine that you had just spilt half of said contents on the floor was nothing short of a miracle not to mention that most times I would have forgotten to bring the bloody pen that was now left at the side of my bed.
I’m not sure if it was the volume of cardboard contents I had left about or the number of times I had been to the toilet but I was finally transferred to a side room further down the ward. It was thought I may have had some possible infection. See one of the common side effects of the immunotherapy drugs was colitis which can be caused by infection and can also be quite serious. The last thing you want on a hospital ward would be a breakout of diarrhoea so I was sent to a side ward which after my previous surroundings felt like the Penthouse suite.
I was wheeled down to my own side ward, it was great I had room for a chair next to my bed, my own shower, toilet, clock and window view. I was excited of the prospect of getting settled and more importantly a decent night’s sleep away from everyone. With all the excitement in the move I’d failed to mention my recent bed transfer to my friend Leila who was coming to visit one night. Along came visiting time and she walked on the ward only to find I had gone. The poor woman for a brief moment must had thought I’d finally canned it. Obviously, I found this highly amusing when she did eventually find the room I had been located to and just wish I could have seen her face.
I had settled in but still wasn’t feeling great but I could get up out of bed and go to the toilet and just leave the urine samples on the floor knowing they were all mine. I’d even managed to master getting to the toilet without unplugging myself that saved a good 10 minutes of bladder time at least I reckon. In the morning I could have my own shower and not worry about what I was going to find when I entered the cubicle (that’s another story). It felt good to relocate and be able to have a much bigger space to settle into. I could put the fan on whenever I wanted, open the window and not have to worry about what effect it might have on someone else. When visitors came, I could talk to them properly and they had somewhere to sit all in all things were good or so I thought.
The lonely nights
Then came the nights, visiting was over by 8.00pm and after that I would try to get settled in the hope of a good night’s sleep. Unfortunately, this wasn’t to be, see the room I was in was also adjacent to the men’s ward and unfortunately some poor soul would cry out ‘nurse!’ at the top of his voice for what felt like hours. I’m not sure if one time he was trying to escape through the window. He might have had a shock had he succeeded as we were at least one or two stories up.
I would try and watch a programme knowing that I would be on the medicine round at some point. Unfortunately, being at the bottom of the ward meant you were last on the round and the days that were painful and you just wanted something to help meant the wait seemed a whole lot longer. That clock would slowly tick away and time would pass slowly as you waited. That clock finally got the better of me a few days later and after being more or less bed bound staring at the wall wishing time would pass, I got someone to take it off the wall.
When the medicine did finally arrive, I would set up my station of ice-cold water, flannel, fan nearby ready in anticipation for what was about to come. It was strange but for some reason like clockwork I would get a pain in my stomach which would get worse and worse. It would generally peak around 2-3am and from then on getting to sleep was almost impossible. My stomach would expand to a point where it looked as though I was a good 7 months pregnant. Combined with the increasingly itchy and swollen face I was a right catch.
The doctors weren’t sure what was happening. See as usual I had impeccable timing and chosen to be in hospital at the same time my oncologist was taking annual leave. Don’t get me wrong there were many other doctors there who were all trying their best to find out what was happening but some days I didn’t actually know who had been to see me and probably could have done with a relative or friend to actually take note of what they were saying.
In regards to my stomach swelling there was concern that I had some form of gallstones. They had scanned me (I think) and were contemplating at one point about operating and taking them out. I don’t know why but I knew this wasn’t right and I was genuinely concerned that I wasn’t fit enough for it. I was determined to do whatever it would take to reduce the swelling. I remember asking one of the doctors how gallstones are caused and what could I do to stop it. His response was to cut out all fat. Well to be honest I had already totally changed my diet I wasn’t eating cheese or dairy he pointed to the coconut oil (I hadn’t even had it, the intention was to replace it for butter to have some bread with the vegan soups I was smuggling in). Anyway, I made a conscious effort and made sure anything that passed my lips contained little or no fat at all. Almond milk and nuts included.
A few days later the gallstone surgeon (not sure what the technical name is) came, thankfully she had reviewed my scan and said there was no gallstones there. They came to the conclusion with my own doctor who was still on holiday at the time emailing the doctors to help that it was the treatment that had been attacking my body. This was good news in one way but later on it revealed the not so good news that my immune system was boosted so much it was now attacking my body and potentially my internal organs.
The worst night in hospital I remember was ironically Halloween night. There was a bank nurse on duty at night and unfortunately as much as I don’t like to say this as I know how hard nurses and doctors work and how much they are under pressure I remember this lady for all the wrong reasons. See my temperatures had started to spike earlier on this night. I was having rigors but unfortunately when you’re in the ward all on your own you sometimes get forgotten about. It got to a point where I had to press the buzzer and waited for what felt like a long, long time. When the nurse finally did arrive, I asked her to find out when my medication was coming as it was really late and if I could have anything else for the pain. I also happened to mention that I had at least 6 carboard urine samples in the bathroom and I couldn’t get in with my drip so asked if she would remove them. It was obviously above her station as they didn’t get moved. I then asked if she would if she would get me some ice-cold water to dip my flannel in so that I could put it on my head. Previously this had never been a problem and if I was able to, I would have gone and got it myself but I wasn’t. She looked at me and tutted, I was astonished. That night was horrendous I had pain like I had never experienced and she didn’t come to check on me once. She had been assigned to my room but hadn’t made any visits and the next I saw of anyone was on the morning transfer at 6am.
I like to think I am tough and try not to cause any fuss but its truth be told I was petrified. I didn’t know what was happening to me and I couldn’t wait for the morning to come when I had some visitors. That day at visiting I broke down in tears as I told Ste and my parents how I felt. They were sure to voice my concerns for me and thankfully I didn’t see that same nurse for the rest of my stay. See I suppose it’s like any job you have some that choose their profession because they love what they do and some that don’t. Unfortunately when you’re a nurse if you don’t like the profession you’re in it’s pretty obvious to those that you care for.
The next two nights someone stayed by my bedside to reassure me. The first was my mum who at the age of nearly 70 with two dodgy hips, slept in a chair next to me and nursed me through the night. The second day I took a turn for the worse just before visiting was over, I was put on an oxygen mask and sent for a chest x-ray so they let Ste sleep in the camp bed next to me (the lengths people go to, to get some company). All I know is that the times I had someone in my room I knew that I would get through the night and if things weren’t right they would make sure I got the help I needed.
The next night I put my big girl knickers on and I braved the night on my own. This time the nurses came and checked every one or two hours which not only reassured me but it made sure that if my temperature or blood pressure was high, they dealt with it a lot sooner. See sometimes you have to experience something negative and let other people know for a positive change to happen and it felt like it had.
What I came to realise from this is that it was great to have all the home comforts, a bigger space, an en-suite, a window space but it’s no good if you don’t have anyone to share it with. I had been moved to the Penthouse suite and all I wanted was to feel safe with people around me in the shared accommodation (despite their little quirks). That way you were less likely to be forgotten about and literally didn’t have to watch time go by before someone came.
Bonfire Night – Nostalgia
It was bonfire night one of my favourite nights of the year. See as a child I was lucky enough to live on a street with my aunties, uncles and cousins next door and next door but one. Bonfire nights were fantastic and most of the street would get involved we would spend weeks collecting pallets from nearby building sites and literally anything that wasn’t nailed down. We would all make something whether that be spud pie (proper northerner), black eyed peas (not the band), treacle toffee, fireworks and much more. It was fantastic and it wasn’t because we had the biggest bonfire or even the best firework display (a black cat box with a roman candle and a rocket from THASDA was hardly going to win any competitions) but it was the best because of the people that were there, friends and family all mucking in to be together. It was nostalgic and every year I get that same feeling of happiness I had for many years. This year was different though I was sat in my bed watching fireworks go off in the distance and I longed for nothing more to be with my friends and family or at least share the experience with my old roomies further up the ward.
It was this moment that I knew that we had made the right decision to put up our house for sale. See it was a beautiful home, one of our dreams but what it brought in style and size it lacked in the fact that we weren’t surrounded by people that care for us and whom we came to rely on. Our kids didn’t have what I had and now treasure as an adult. They had no kids to play out with until the dark hours or houses they could just walk in to see friends and family. I didn’t know what was to happen to me in the future, but what I did know was that the kids childhood and seeing them happy was a priority. To them living in a big house wasn’t important they wanted to be kids and we needed to make sure of this before their childhood was over.