Starting Chemo…#falling off the cliff

If being diagnosed with cancer had seemed a scary word then chemotherapy was off the scale.

The first few weeks after diagnosis were filled with scans/appointments/results. The plan seemed to keep changing and we were filled with frustration. It had taken a lot out of me to accept that I was going to have a mastectomy and now they wanted to do chemotherapy first. The largest of 2 tumours was 6cms long and they wanted to reduce the size of it if possible before surgery. This did make sense, but was such a lot to take in. I started feeling like I was living for Tuesdays and Thursdays when the Multi Disciplinary Team would be talking about me in their meetings, then at about 4pm the breast care nurse would call and explain what they had found or decided to do.

We’d had our early Christmas, visited family and now it was time for the treatment to start, and for me to stop work for the time being. I had got a bit obsessed googling working while having chemotherapy, and seemed to be haunted by people who said they managed to work while having chemo….why couldn’t I do that? The nurses seemed pretty convinced that I would be sleepy for the first week, 2nd week would give me various side effects and the 3rd week I would be starting to feel better, before doing it all again.

First I needed to sign consent forms, hmmm – consent to have my body pumped full of drugs that would give me horrendous side effects, drugs that would kill good cells in by body as well as hopefully killing the bad cancer ones. Drugs that would make me lose my hair. But drugs that would hopefully stop these nasty cancer cells spreading. Drugs that would give me more valuable time to annoy my husband, it must be worth it! Dotted line signed upon.

At this time, they still weren’t completely sure of the makeup of the cancer, so I was to start with 2 drugs Epirubicin and Cyclophosphamide = EC for short. I had an appointment with the pharmacist who gave me a prescription for Antibiotics to carry around with me. I was given my cancer card…OK so it was really a card to show to A&E in case I needed to be admitted but I had heard a lot about being able to play the cancer card so it was nice to have something physical to hold!!

The day before treatment started I went in to have a PICC (Peripherally Inserted Central Catheter) line fitted. This involved a line being inserted just above my elbow and then pushed through a vein until it came out near my heart. It was done under local anaesthetic so it didn’t hurt, it just felt strange. This would become the main part of my life for the next 5 months, all drugs would be given through it and also blood tests completed through it. Once a week I would be coming back to the unit to have the line flushed out to keep it clean, so finally there would be a routine.

Over the last month I had had more biopsies, MRI and CT scans, there was a lot of fact finding but not much in the way of treatment. My life hadn’t changed much and I had still been working.

As a family we wanted to do something positive during this time and did a Step Challenge for Macmillan Cancer Support called 5 million Steps through Chemo. It was basically 10K steps each per day for Myself, Mark, Olly and Millie – only they would be doing my steps as well.

29th November 2018 and I was booked in for my first chemotherapy. I was nervous, but also just wanted to get started with treatment. We had been warned that we might be a long time in the unit as it was very busy. We both had our Ipads and phones with us but I couldn’t relax, I felt the need to keep talking to Mark. I wandered around and picked up leaflets flicking through them and reading posters on the walls. I looked around at everyone else in that waiting room, there were 2 of us whose first session it was, everyone else looked so confident. I guessed one lady was wearing a wig, but most other people had their own hair. Although I really wasn’t worried about losing mine, I had a strange fascination with it. It also hit me how many people are affected by cancer at any one time. I think I also took comfort seeing people there who had been through it all before.

Finally I was called, and followed the nurse not really knowing what was happening at all. I was weighed (note to self- don’t eat before weigh ins) and then taken to a room where I was given steroids and anti-sickness tablets to take. The nurse went through my treatment guide, advising me on clean eating which, as I have always been a fussy eater seemed quite easy, wash all fruit and no takeaways – not quite so easy. I had to keep a record of my temperature and call in if it was too high or too low, and expect to be poorly and have to come back in at various times. I was given steroid tablets to take before the next session and mouth wash for the impending ulcers.

We were taken through to the lounge area, which was dated but homely. We looked around, there were no chairs together and I had been told Mark could be with me. Someone very kindly went off and got another chair for him. I couldnt believe how many people there were, all at different stages of treatments. The nurses were lovely, but I did feel a bit like the new girl.

The first drug was bright red…administered by a nurse sitting next to me for 40 minutes and slowly releasing the drug into the PICC line through a massive (no exaggeration!) syringe alongside a drip to flush it through. It surprised me that I could feel the coldness of it moving up my arm and over my chest. I’m not the biggest talker to strangers especially when I was nervous so found it all a bit awkward. I did manage to find out it would make my wee red for a couple of days though! Mark was with me but settled into the routine of sitting with his Ipad a lot better than me! I didn’t know what I wanted to do, I was still trying to process what was happening to me. I was plugged in to the drip and got to sit for another hour while more drugs flowed into my body. I felt fine…and I have to admit it all seemed a bit easy.

Suddenly it was all over, and we were ready to leave. Mark wanted to support me walking, but I felt fine. I was hungry, what was for tea? Quick calls to both sets of parents on the way home. We face-timed my mum and dad and I could see the worry in their faces. That was the hardest bit for me, I wanted to protect everyone from how I felt. I could deal with the cancer, I struggled to deal with how it upset everyone around me.

From that day I decide I was going to stop drinking alcohol throughout treatment and possibly beyond. I wanted to give myself the best chance to recover. I made so many deals with my body at that time, I just wanted the chance to live and prove that I could be kind to it!

I didn’t realise the positive impact of steroids and felt fine all evening, updating everyone on how it went. I was in-undated with flowers, far more than vases that we had. The next morning I was tired, and slept for most of the day. Once the steroids finished I gradually started feeling the effects of the drugs. To me they felt like they were travelling round my body, down to my feet, back to my arms, up to my head and finally in my chest. Bizarre since the PICC line ended near to my heart and level with the tumour.

And so started the cycles of chemo, I was to have 3 cycles of EC with various appointments/scans as well as weekly check ups. I was settling well into my new role as ‘cancer patient’. Mark was able to work from home which was good but it was hard feeling so ill and as if I was in his office space. I couldn’t face visitors so it was just us, I know he would have preferred to have friends around etc, but as the chemo nurses kept saying, it was all about me – Oh how I do miss that excuse….

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