I am not very good at being ill but one of the most challenging aspects of my cancer diagnosis was the fact that I wasn’t really “ill”. Well at least I didn’t feel or appear ill in any way and now that the cancer had been removed wasn’t I even less “ill” ? I certainly felt it. What I couldn’t quite get my head around was the fact that the next stage of my treatment was very likely to make me ill and even if I was extremely lucky and didn’t suffer too badly with the side effects it would make me look ill. Nothing says “cancer patient” quite as much as a bald head. This frustrated me enormously but I knew that chemotherapy was a necessary evil and I was just going to have to deal with it.

As I was planning to try to get away at half term I had asked at my post surgery appointment whether there was any chance of getting to see the Oncologist before I went. Time frames were tight but amazingly I got a call on the Friday afternoon to say the Oncologist could see me at 9 am on the Monday morning but had no other appointments free that week. Brilliant! But as soon as I put the phone down I remembered that Dan had a really important meeting arranged for the Monday morning. How ironic, Dan’s work had pretty much dried up after lock down and this was the first bit of activity since then. The meeting had been arranged for weeks and clients were travelling from the West Country to attend. He had to be at that meeting. I decided very quickly that I would see the oncologist on my own. I wasn’t going to miss the appointment and Dan wasn’t going to miss his meeting. To be honest, I had attended the majority of appointments on my own so far due to COVID rules so this was just one more. Dan wasn’t at all happy but I convinced him it was all fine and we would sit down together before hand and put together a joint list of questions. I would be in charge of the notebook at the appointment and would take notes so that I could report back.

The only problem I had was getting there. Dan would need the car to drive to his meeting so I would need get myself to the hospital some other way. I initially hatched a plan that involved borrowing a neighbours car and driving myself there but I refer you back to my earlier blog post and my hatred of the hospital car park. Imagine replaying that scene with me driving my neighbours lovely BMW which whilst smaller than our tank was still a sizeable vehicle. Thankfully whilst out walking the dog with my friend Nicky she offered immediately to drive me to the hospital, do some work in the car whilst I was in my appointment and then come and pick me up when I was done. Result!! The perfect solution and I get to spend time chatting to her on the way there and back.

Monday morning came. Nicky picked me up bright and early and off I went armed with my notebook filled with questions that Dan and I had put together the night before. I was ready to get this next phase of my treatment underway. Dan had given me a bigger hug than usual before I left. I knew he wasn’t happy that he wasn’t coming with me but I kept reassuring him that it was no problem, I would be absolutely fine on my own.

It was so nice chatting to Nicky on the journey over to the hospital, we go back a long way and conversation is always easy but as we got nearer to the hospital I could feel a slight tension in my stomach. Was there something about this hospital that did that to me? I wasn’t sure. The hospital buildings loomed into sight, as usual the car parking situation was dire but Nicky was just going to drop me and come back when I was done so I started directing her to a small drop off area that I had noticed the last time I had been there. I could feel a sense of anxiety starting to rise in me. I was starting to panic as Nicky was looking for a safe place to pull over. Tears were starting to fall down my cheeks. I wanted to stay in the car with Nicky and head off somewhere nice for a coffee and a chat about nonsense, forget about all of this cancer crap and go back to how things were before my wretched diagnosis. Why me? Why did I have cancer? Life is so bloody unfair. The tears fell and, unable to hug, Nic and I held hands and rode out the moment together. “You’ve got this” she said through her own tears. I took some deep breaths and closed my eyes. I didn’t want to see the oncologist with mascara down my face! I had to get it together. A few more deep breaths and one last big squeeze of Nic’s hand and I got out of the car trying not to look back. God only knows what the group of taxi drivers watching us must have thought as they saw me emerge from the car with my blotchy face. Luckily I had to put my mask on so half of my face was covered as I headed to the Cancer Centre.

It annoyed me hugely that even via the location of my appointment I was being labelled a “cancer patient”. I didn’t want to be a cancer patient. In this world where you can identify as just about anything you like I wanted to identify as me, Kirsty Berryman, wife of Dan and mum to Jodie and Max I didn’t want to be labelled by my illness. I liked the anonymity of my previous appointments, arriving for scans and consultations where I could have had any number of things wrong with me. I hated the fact that from now on I was going to be a cancer patient and as if that wasn’t bad enough, very soon I was going to look like a cancer patient whether I liked it or not.

Getting into the Cancer Centre was no easy feat. COVID restrictions were tight and I had to undergo a once over by a nurse before even getting through the door. Once in I took a seat in the large waiting room and got out my book.read my book. Two other women about my age were already waiting. They both had the tell tale cropped greying wirey hair, regrowing after chemotherapy. They chatted with staff that walked by, clearly regulars in this waiting room. I guess I would become part of the furniture too after 3 months of regular visits for my treatment. As I waited more people arrived, a couple looking extremely unwell and needing help to their seats. My name was called by a nurse who introduced herself and took me along a corridor to the oncologists office. The oncologist was a cheery Spaniard who welcomed me in and immediately apologised for having to wear a mask. I had got used to it to be honest but it was odd to be having such serious conversations with medical advisers whose faces were half hidden by a mask.

We discussed my diagnosis and he explained that my cancer had been graded a 2/3 but that there was only a very small amount of evidence of grade 3 . Even though that was the case he was recommending treating my cancer as a grade 3 to ensure the best possible outcome. He was at pains to reassure me that the purpose of the chemotherapy was to ensure that any possible cell mutation that was already underway but not detectable on the scans that I’d had would be caught. Chemotherapy was the belt and braces to hopefully ensure that the cancer doesn’t return, He told me that he was recommending a course of chemotherapy treatment known as FEC-T. I’m sorry…….stop right there, did he just say FEC-T? seriously? my cancer treatment is called FEC-T? That’s quite amusing. I tried to keep a straight face whilst scribbling notes furiously into my pad.

What I hadn’t really appreciated is that there isn’t just one chemotherapy regime for the treatment of breast cancer, there are lots and what is recommended for you will depend on lots of things related to the type of cancer you have, it’s aggressiveness and lots of other factors but also on what they are trying to achieve. They will also look at other factors like your age and fitness levels. My oncologist told me that because I was young (really?) and very fit and well (I try my best!!) he was recommending relatively high doses of the FEC-T. He explained that FEC-T was a combination of chemotherapy drugs, fluorouracil, epirubicin, cyclophosphamide and docetaxel. I would be given 3 cycles of FEC followed by 3 of T and each cycle would be 3 weeks so all 6 cycles would take about 4 months provided there were no delays. I would also need 3 weeks of radiotherapy after the chemotherapy was completed and that would be daily radiotherapy sessions. He suggested that we didn’t worry too much about that for now but focus on the chemotherapy.

We then moved on to the potential side effects of the chemo. My oncologist started straight away with hair loss, he said that as I was a female this would be one of the hardest aspects of the treatment to deal with. He made the position quite clear. Given the drug regime I was being prescribed there was no doubt that I would lose my hair. He seemed very sorry about that, I said that it was something that I had appreciated would happen and that, whilst it wasn’t great, in the general scheme of things it was just another necessary evil to ensure that the cancer doesn’t return. He didn’t seem convinced by my acceptance of the situation and reiterated that I would lose ALL of my hair which meant not just the hair on my head but also all body hair including brows, lashes and the hairs in my nose!

He then explained that it was important that we discussed the rest of the potential side effects and he ran through the rather extensive list; allergic reactions, the drug leaking outside your veins, the risk of developing an infection (particularly sepsis) bruising and bleeding,anaemia, nausea and actually being sick, feeling tired, diarrhoea, constipation, sore mouth and throat, heart burn, loss of appetite, changes in taste, skin changes including dryness, sensitivity and rashes, soreness and redness of the palms of your hands and soles of the feet, numbness of the hands and feet, nail changes, damage to the kidneys and liver, eye problems, muscle and joint pain and headaches. Just as I thought he was finished he moved on to the less common side effects, changes to the way your heart and lungs work which would need investigation and monitoring. Fantastic! But he still wasn’t done, one more for the road, “you are pre menopausal aren’t you?” he asked, I confirmed I was and he told me that the chemo would most likely bring on my menopause and that I should expect that to be fairly brutal as it would happen very quickly rather than over time. Brilliant!! Where do I sign up?

I had been scribbling furiously in my note pad, so much to take in but what was I going to do? Tell him that now that I had heard the details of just how grim this treatment is likely to be I’d rather not bother? I had to go ahead with it so therefore I would have to take the side effects on the chin whatever they throw my way. I knew it wasn’t going to be an easy ride but suddenly the seriousness of the treatment and the diagnosis hit home. They were basically going to poison me and I just had to hope the side effects weren’t too bad. I felt numb, we moved on to talk about whether it would be worth my while using my private health cover for the chemotherapy. We discussed the pros and cons, ultimately the treatment would be the same wherever I had it but what would be different is the environment in which I would have the treatment. The Cancer Centre on the NHS, or a private hospital not far away where I would have my own room. Given the COVID risks, the prospect of privacy whilst I went through the treatment and the fact that I wouldn’t have to contend with the hideous parking situation at the hospital not to mention the mile long queues for blood tests, it was an easy choice for me. I decided there and then that I would prefer to have the treatment privately.

I was then introduced to one of the McMillan nurses who I was told would take me through the paperwork that I needed to sign and provide me with some other information I would need before starting my treatment. The nurse was from Dublin and immediately started talking to me about the FEC-T in her Irish drawl. I couldn’t help myself, “stop saying I’m FEC-T, I know I’m FEC-T” She laughed and admitted that this was a regular problem given her accent. We dealt with all of the form signing I needed to do. Signing my life away! She then gave me information about wig prescriptions and lots of leaflets for head covering suppliers. She gave me the email address for the oncologists private secretary who I would need to contact to arrange to have my treatment and to go and visit the private hospital. She also mentioned that they would likely need me to have a PICC line fitted in my arm through which t(e chemo would be given. She explained that with only one arm available for a cannula after my surgery (due to the risk of developing Lymphoedema in my right arm) it would be worth having a line fitted. I didn’t like the idea of that at all, a cannula type fitting in my arm for 4 months, yuck!

I finally made my way out of the hospital and messaged Nic to say I was done. She pulled up and I got into the passenger seat. I was exhausted. Information overload to say the least. We didn’t need to talk about it, she had picked me up a cup of tea and some biscuits so we drove home chatting whilst I sipped my tea and munched on a biscuits. I’d survived it. Another job done.