What is VIDE Chemotherapy?
Unfortunately this section doesn’t involve any funny stories so be warned. I’ve tried to block most of it from my memory as it was such a crappy experience but thought it might be informative and hopefully help someone. I’m going to talk about the daily routine of hospital life while having chemo and a few of the things I encountered. I will cover the side effects in a later post.
I had two different courses of chemotherapy and this post will be about the first and most aggressive course called VIDE (Vincristine, Ifosfamide, Doxorubicin, Etoposide). Every case is different and every person has a different treatment regime put together by a multi-disciplinary team. The plan for me was to have 6 cycles of VIDE followed by radiotherapy, more chemo and an operation.
Each cycle of VIDE chemo is 3 weeks long. The first 3-4 days in hospital receiving the drugs then the other 2.5 weeks was spent recovering at home, and repeat another 5 times. The thing about the chemo drugs is that they feel like they were slowly killing me but they are also saving my life. I dreaded having the treatment, and it was in Southampton which is 1.5 hours’ drive away. I got very anxious and short tempered each time before going back to hospital but it had to be done.
Before I starting chemo they had to do test on my heart, lung, liver and kidney function to make sure they were healthy because the chemo would take its toll on them. I’m happy to say mine were all strong and healthy and set me in good stead. I also had to visit the hospital every Monday before starting each round on the Thursday to have my blood cell counts checked, and a once over by my oncologist to ensure I was in a fit state to go through chemo again. It felt like the hospital was a second home. I hated that place and everything about it.
So my routine would go as followed. I would get to hospital mid-afternoon on Thursday and have 3 days of chemotherapy drugs pumped into me through the line in my chest. One of the drugs called Doxorubicin, is a bright red fluid that they administer manually so they can control the speed it goes in. This is what would make my hair fall out and the nurse told me if it gets on skin it can cause skin cancer and necrosis, and this was going into my blood stream! Sometimes the chemo drugs were not ready or not up from pharmacy so I just sat there in my hospital bed like a lemon waiting for hours. This really gripped my shit as the later I started, the later I finished and the later I could leave that place. Each day was the same course of drugs and I would be connected to drip for 17-20 hours each day. This was hell. The drip ran through a machine that pumped it into me at a certain speed and the machine was so loud! I felt ill and weak so just lay in bed sleeping, watching TV, eating and reading. The 4-6 hours I had free, disconnected from the drip, I would stretch my legs as much as possible, visit Costa Coffee downstairs and get some much needed vitamin D from the big shiny thing outside.
It’s funny what you associate with a bad experience. I can’t bring myself to go into a Costa Coffee now, and I struggle to eat packaged sandwiches because I used to get them daily for lunch instead of the hospital food. That’s saying something as I usually avoid bread! On my adventures outside I would get infuriated by the crowds of degenerates around the main entrance in their dressing gowns, connected to a drip, looking like death and puffing away on a cigarette under the big no smoking signs. I came out for fresh air and always got this. Imagine walking out with your new born baby and its first breath of fresh air is a mouth full of smoke. Here I am doing everything I can to be healthy, fighting cancer that had spread to my lungs and then having to breathe inconsiderate peoples smoke in. I saw the same people every time I came into hospital over months, what a life to live. No wonder our NHS is haemorrhaging money with so many people that don’t help themselves.
Now everybody knows hospitals are not known for their culinary delights. I think food is medicine so I cannot understand or believe how bad the food was in Southampton Hospital. They are feeding this shit to people that need decent nutrients more than anyone! I feel so sorry for anyone that has to spend a long period of time in hospital because the menu was the same every day. One of the things I associate with the hospital is the smell. It’s a mixture of sweaty shit food warmed up in plastic, piss and cheap cleaning products. Every time I smell it I wretch and it brings back bad feelings. However, I am forever grateful for my girlfriend at the time that brought me good food and drinks while I was in. Luckily I had my own room with a kitchen sink and a tiny fridge so we could manage quite well.
The volume of the bags of chemo was huge! There were litres of the stuff being pumped into me and I was drinking so much water to flush it out. Once the drugs had been around my body and done their job I wanted them out of me pronto! I was up to the toilet every 10 minutes wheeling my drip behind me, beeping away because it was unplugged. They wanted to measure what was coming out of me and also test it for blood as the chemo can attack the bladder and cause haemorrhagic cystitis….nice. Because of this I had to piss into these cardboard bottles that stank when urine contacted them for some reason, which was another one of those unpleasant smells I now associate with hospital. Another huge benefit of the private room was my own toilet close to my bed. This toilet would also be invaluable the few occasions someone forgot to give me my anti sickness drugs, or they didn’t work, darting to the toilet as fast as I could with the drip behind me in tow to chunder. Not fun nights.
The nursing team were all so lovely and reassuring. They were so stretched, understaffed and exhausted from doing 12 hour shifts. Unfortunately they get a lot of stick when things went wrong because they are face to face with patients. We were able to build a good relationship with them over the 6 cycles and kept them on our good side with Percy Pig sweets! I think they appreciated the love as when we needed a favour they would do everything they could to help us.
The most annoying thing by far was the wait for my drugs to take home. It was a big bag full of steroids, anti-sickness, antibiotics, laxatives and an injection to boost my white blood cell count that I had to inject 24 hours after my last chemo. This is what sometimes turned a 3 day stay into a 4 day stay. It was beyond frustrating as they knew exactly when I was in and out. It seemed like they could do the big things well but didn’t get their shit together for smaller things like this. The few occasions they got prepared and my meds arrived early was such a huge relief.
One of the things that shocked us about the hospital was the lack of cleanliness. We would always give my room a once over with antibacterial wipes and they would be covered in dirt. One day I looked up above my bed and there was what I can only guess is blood sprayed across the ceiling. It was brown but red on the wipe when we cleaned it off. The hospital was embarrassed and changed the ceiling panel there and then. But the last and most shocking thing was the amount of times we caught the cleaner using the same cloth on the sink that was just used on the toilet!
Now there weren’t many positive things about hospital but one of the few things was the Macmillan centre. Unfortunately it was closed weekends when I was in and I was connected to the drip most the time but the few occasions I got down there it was so welcoming and relaxing. It has carpets and sofas so it doesn’t feel like a hospital, and run by volunteers. They offer lots of different support, massage, other therapies and now have a new courtyard garden which I would have loved to use to get away from all the smokers at the main entrance. As well as using this centre Macmillan also supported me financially. Travelling up and down from hospital while I wasn’t working was expensive and they helped me out so when I am better I will defiantly be doing some fund-raising for them!
The one bit of advice I would give anyone going into this is try and be prepared. Take things to do as there is a lot of time spent sat in bed being bored. Also I had a fridge to store food in so I took as much as I could. My friends and family that visited did a good job of spacing visits out so I was never alone for ages. It’s all about making a very shit experience as comfortable as possible. I am so grateful for my girlfriend at the time helping me out with everything and my family and friends filling in when she was not around. I can’t even begin to imagine how much harder this would be facing it alone.