When it all went a bit Pete Tong

Round 2 ding ding!

I was one treatment down and things seemed to be fine (or so I thought). I felt tired apart from that I seemed pretty normal. Each treatment was like a key milestone I couldn’t wait to complete (help me now I’m bringing project controls jargon into my blog!). The treatments were to be 3 weeks apart and I was due to have 4 lots. After that fourth treatment I would be scanned to see the effectiveness before possibly continuing with just Nivolumab in the future.

In my mind I had a visible end date in sight. I would get through each treatment and in December (hopefully by Christmas) I would know the results. I had something to focus on and knew I had to put in my everything into these next 12 weeks to ensure I got the best out of the results. This meant getting myself mentally and physically fit. I needed to calm my mind of fears and doubts, staying positive in my outlook with faith and determination into beating this disease. I had to ensure I was in the best physical condition I could be. Exercise was on the agenda most days running and the gym, out was the alcohol and in was the green tea and turmeric. Processed foods were to become a distant memory and organic and plant-based foods where high on the agenda. I was practically becoming Gillian McKeith without a Scottish accent and the need to poo in a butty box for further investigation.

Today’s sample for later inspection?!!

The next treatment couldn’t come soon enough. There was an element of excitement to it as in, this is the thing I have to go through to get the end result I want. It’s a bit like writing your Christmas list, leaving out a mince-pie, carrot and milk and hanging your stocking on the fireplace waiting for Santa to come the next morning despite secretly knowing at the age of 33 it was really your parents who left you the gifts (sorry if I’ve shattered anyone’s illusion).

Around the second week after my first treatment I did start to get a bit of a rash, this is one of the common side effects with the combination treatment of Nivolumab and Ipilimumab. The rash wasn’t really affecting me so I left it and didn’t phone the chemo help line. In my mind if I alerted them to it then there could be a chance that I wouldn’t be able to have the treatment and this certainly wasn’t what I wanted.

Anyone who is reading this and currently going through some form of treatment please note this is the biggest mistake you can make. You need to be aware of any changes to your body however slight they might seem at the time (write them down in a diary if need be) highlight these to your doctor or nurse you never know these could be the early signs of something a lot more serious and early intervention could be key.

I went to my next appointment in which I was due to have my treatment I was asked about side effects and said I had none apart from a bit of a rash. I was asked to show this to the skin care nurse and doctor and unfortunately my treatment was cancelled that day. I was given a prescription of Diprobase to apply and was told they would defer the treatment for another week. I was disappointed and upset not only had I wasted my own time but I had wasted theirs as well. Had I mentioned this to the skin care nurse I could have had the cream earlier and it might have worked before the next treatment.  I went home and made sure I applied it whenever possible, I was taking no chances of the treatment being deferred again. One weeks Extension of Time was acceptable two weeks wasn’t (shoot me now I’m doing it again Project Controls tripe again).

The following week I went for my treatment this time my mum came along. It still felt strange but this time with a bit more understanding of what to expect. I felt fine afterwards. So far it was just the tiredness and a bit of a skin rash if these were the only symptoms I was doing pretty well as I had sort of expected it to be a lot worse than this. This was too good to be true and unfortunately it was.

 

Signs and Symptoms 

When I recall some of these symptoms I’m not really sure what came first. It’s all bit of a blur in my mind. I had the second treatment and was applying Diprobase so much I was as slippery as an eel. It worked however, and the rashes seemed to disappear. I was still working and remember saying to a few people about my vision going blurry. I kept getting moments of blurriness then white flashes in the corner of my eyes. I remember one instance I was talking to my old boss and I couldn’t even see his face in front of me. He was still chatting to me but I didn’t have a clue what he was saying. I was too busy blinking constantly and stretching my face to try to bring my vision back. Think of Jim Carrey on ecstasy and you’re probably not far off what it looked like. This continued for about a week or so and it got to a point where I wasn’t sure if I was safe to drive so I avoided driving …. to work at least.

Next came the stomach pains. I had been exercising quite a bit and thought I had just maybe strained something. We were also tidying the house ready to get pictures taken for it to go on the market. I had been moving a lot of boxes of random crap about so I put it down to this. It was a lot worse than period pains but bearable. If you’re a man it’s probably on your pain threshold of 9, with 10 being a cold (ha joking but I thought I’d get that in there). I was working from home and the pains started to feel worse. I felt really lethargic so I text work to tell them I wouldn’t be in the next day.

I went to bed that evening and the pains started to get worse. My stomach felt really bloated and did look a bit inflamed. During the night I took some paracetamol and ibuprofen hoping to take the edge off the pain. I also started to feel really hot so I took my temperature it was 39 degrees. When you first have treatment your advised to buy a thermometer and regularly take your temperature and advise of any changes (normal temperature is around 37 degrees). Whilst rummaging through the drawer to find my thermometer at the middle of the night Ste asked me what the heck I was doing (I’m not sure he used those words to be honest) so I took myself off into the spare room. That night the pains continued and then I started to feel really cold and shaky. I went to the bathroom and my stomach had swollen up so much I looked a good 6-7 months pregnant (I normally look 1-2 on a good day). I reckon if I was on a crowded bus you would have got up and offered your seat to meI stayed in the spare room that night and continued to shake and shiver. In the morning Ste had just got up and taken the kids to the childminder. He hadn’t come into my room as he thought I was having a lie in.

I woke up about  9am and couldn’t move. I felt as though going to the bathroom was like climbing Snowdonia. I phoned my parents and thankfully they came round. My mum ran me a bath and poured hot water on my back to warm me up. I felt awful, I took my temperature and it was 41.5 my mum prompted me to phone the chemo line so I did. The chemo line advised me to go straight to my local ambulatory care ward. When I got there I was seen straight away and put in a side room. What I didn’t know is that they were treating me for suspected Sepsis. I was put on an antibiotic drip straight away and had some bloods taken. For those that have never heard of it Sepsis can be life threatening. It’s also know as blood poisoning and is the body’s over active and toxic response to an infection (in my case cancer). I have a family member who has recently suffered from this. Thankfully they caught it in time but I know she spent a lot of time in hospital and recovering afterwards. If you have a high temperature and shivers it might be worth bearing this in mind along with a number of other symptoms which are detailed on the Sepsis Trust

Whilst on the drip I was sweating uncontrollably so much so we sent my dad for a spare top to put on. After the drip I was to be taken for a chest x-ray. It was all a bit of a shock but I was seen pretty quickly and started to feel a lot better. Thankfully the bloods came back and confirmed it wasn’t Sepsis so I could wait in the waiting room to speak to the doctor. When we finally got to speak to the doctor it was a bit surreal. He asked about my treatment. He confirmed it wasn’t Sepsis and said it was likely to be a viral infection but didn’t want to interfere with my treatment so I was to be sent home. The doctor also showed my mum and I the chest x-ray compared to one a few weeks earlier when I had just had started treatment and they thought I had a PE (pulmonary embolism) but that’s another story. You could visibly see a difference in the chest that the cancer had shrunk. He said he wasn’t an oncologist but I wasn’t a doctor and I could see a difference. My mum burst into tears and then so did I. She was telling the doctor how positive I’d been about all this and here we had a glimpse despite not total confirmation that maybe it was working. There could be some benefit to all this being positive malarkey after all.

See whilst you’re undergoing treatment they don’t like you to have scans unless absolutely necessary as this can interfere with the treatment. I also knew from the doctor that scans can change during treatment they can look like they’re shrinking then they suddenly get bigger. There’s so many different variables of what can and can’t happen it’s a minefield I don’t envy the oncologists. I struggle to decide what to eat for dinner let alone what to do best for a patient’s life (hence why I am not a doctor). This however was a glimpse of positive news I didn’t want to share it with everyone for fear of false hope but I was sure to mention it to the oncologist the next time we spoke. I was discharged and hopefully it would just pass over.

That night the same happened although not on the same scale. My temperature was so high though I was still shaking uncontrollably with what is known as the rigors. It sounds funny but it’s awful. You feel extremely cold and shiver and try to do anything to keep warm however you actually need to be doing the complete opposite. You should try to cool down and bring your temperature down. I phoned my parents later that morning and they came round. I made sure I was dressed properly and I phoned the chemo line. I was told to come to the Friday clinic straight away to be seen.

Checking in

I checked into the Friday clinic and went through the past few details. I was feeling extremely hot then fainted whilst having some bloods done. Now this isn’t normal for me, having cancer certainly get’s you used to having needles poked in your arm, it becomes the norm. The more you have it done the more you don’t feel it. One little tip my friend who had cancer told me recently was to rub your arm and warm it up before you have any bloods taken it works I promise.

After being checked over the doctor was slightly concerned about me therefore they thought it was best they keep me in over the weekend. Being that we were a bit of a distance from the hospital I didn’t disagree and thought it would be the best place for me. In my mind all things being equal I’d be back out Tuesday for work then ready to have another treatment in another week.  The nurses on the chemo ward rushed round to try to see if there was a bed available luckily there was a bed on the oncology ward. Had this not been the case I dread to think what would have happened knowing what I know now. So many patients you see are on wards where there are just beds available. Often the nurses and doctors don’t know much about you and it’s not their specialist ward either. It’s a sad state of affairs which unfortunately most hospitals seem to be suffering with under the constant strain of the NHS.

Thankfully I had a bed though and was checking in for weekend (or so I thought). I was wheeled down to the ward by the chemo nurse who was their way past her finishing time despite going on holiday that following day. I was shown to my bed and tried to settle in for the night.

As I lay in the bed quite daunted by it all. I’d learned a valuable lesson the hard way. There’s no reward in cancer for keeping quiet and battling through regardless. Hiding your symptoms and side effects doesn’t make things easier if anything it makes it worse. These are the tell-tale signs than can ultimately mean life or death. Now I’m not telling you to be overly paranoid and phone up for ever minor ailment but try to listen to your body. If something’s not right trust your instinct and follow it up.

8 Comments

  1. Jeanette
    12/05/2018 / 16:40

    You never cease to amaze me!!brilliantly writte….again!..honest,funny and touching…thank you Rachel.xxxx

    • Rachel
      Author
      02/07/2018 / 13:52

      Thanks Jeanette x x

  2. Lindsay
    16/05/2018 / 14:58

    Amazing Rach xx funny, real, informative and really supportive, helping others in similar situations and inspiring us all ?

    • Rachel
      Author
      02/07/2018 / 13:53

      Thank you Linds although you’d be in trouble if you didn’t like it 🙂

  3. Sarah Garbett
    17/05/2018 / 07:28

    I love reading your blog! You are such an inspiration to many people.

    Xxx

    • Rachel
      Author
      02/07/2018 / 13:55

      Hi Sarah sorry for the delayed response, thank you so much really pleased you enjoy reading it it’s great to hear feedback like this. Hope all is well with you x x

  4. Michelle
    17/05/2018 / 18:50

    I don’t know how you are remaining so upbeat and positive you truly are an inspiration to me xxx

    • Rachel
      Author
      02/07/2018 / 13:54

      Thank you Michelle I have lots of support and along with the medication it’s proving to work pretty well I think x

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