02/03/2021

I cycled into St Bartholomew’s this morning and the street opposite the main entrance was lined with paparazzi – I presume waiting to catch a glimpse of me and desperate to hear how I’ve been getting on…

The last time I wrote about treatment I was still waiting to hear my results from surgery. I received a call from Laura, the surgeon, two weeks after my surgery telling me that it was “all good news!” She told me that the tumour had been successfully removed and that it had not spread to the one lymph node they removed. I was naturally relieved to hear this and began to update my family. Tom and I decided to take Frank on a celebratory walk (how else to celebrate in lockdown?) when we started chatting about what was next. Tom reminded me that they had mentioned the possibility of needing further chemotherapy, I presumed that as Laura had not mentioned any changes to my treatment plan that I would not need it, but decided to call Hannah just to check.

On the phone to Hannah, I asked whether I would need more chemotherapy and she said that I had a phone consultation booked with the doctor in a few days and we could chat about ongoing treatment then. Unfortunately for Hannah I knew that I had been discussed at the MDT that morning and that a treatment plan would have been put in place already, so I pushed her for an answer. She told me that yes they were going to recommend another 9 months of chemotherapy. I wish I hadn’t asked.

This was really difficult to hear. I hadn’t recovered from the last six months of chemotherapy and now they were telling me I needed another nine! It felt like an even harder pill to swallow after Laura had only an hour previously said the exact words “it’s all good news” – it didn’t seem like good news.

Apparently the reason they were recommending more chemotherapy was because the tumour they removed still had some grade 1 cells left over.

So I waited a couple of days for my phone consultation with the doctor. A clinical oncologist, someone who specialises in radiotherapy, Dr Bartlett called me. He said he would discuss the ongoing treatment plan and started by asking what I understood of it so far. I told him that I was expecting five sessions of radiotherapy and had been told that the recommendation was for me to have more chemotherapy. He told me that I was actually to have ten sessions of radiotherapy as they were adding on a five session ‘boost’ due to the margin of the tumour being so close to my chest wall.

This came as another real shock – Laura had not mentioned anything about the margins? I had specifically questioned her pre-surgery about what the safety margins were and she had told me in breast surgery they work to 1mm, which I remember being shocked at because when I had worked in maxfax, a safe margin was considered to be 1cm.

Safety Margins: During or after surgery, a pathologist examines this rim of tissue — called the surgical margin or margin of resection — to be sure it’s clear of any cancer cells. If cancer cells are present, this will influence decisions about treatments such as additional surgery and radiation. Margins are checked after surgical biopsy, lumpectomy, and mastectomy.

A pathology report may say that the surgical margins are:

• Clear (also called Negative or Clean): No cancer cells are seen at the outer edge of the tissue that was removed (the tumor along with the rim of surrounding tissue). Sometimes the pathology report also will tell you how wide the clear margin is — the distance between the outer edge of the surrounding tissue removed and the edge of the cancer. When margins are clear, usually no additional surgery is needed.
• Positive: Cancer cells come right out to the edge of the removed tissue. More surgery is usually needed to remove any remaining cancer cells.
• Close: Cancer cells are close to the edge of the tissue, but not right at the edge. More surgery may be needed.

An important note: There is not a standard definition of how wide a “clear margin” has to be. In some hospitals, doctors want 2mm or more of normal tissue between the edge of the cancer and the outer edge of the removed tissue. In other hospitals, though, doctors consider a 1mm rim of healthy tissue — and sometimes even smaller than that — to be a clear margin.

The margin next to my chest wall was less than 1mm. I was pissed off that Laura hadn’t mentioned this as it was most definitely her remit. When I emailed her to question why she had told me that it was “all good news” she admitted that “In retrospect I should have discussed the posterior margin with you when we spoke” – along with a lot of other important points!

The rest of the call with Dr Bartlett was pointless, I wasn’t taking anything in due to feeling so angry. Everytime I spoke to the team they seemed to be giving me conflicting information and it felt like no-one was in charge of my overall care plan. Despite me basically withdrawing from the call, he proceeded to flood me with information about radiotherapy, chemotherapy and hormone therapy that they were recommending. At the end of the conversation he asked me if I thought I was ready to start the hormone treatment, I said a very decisive no. It all felt like too much. And it felt so impersonal to be told all of this very much life-changing information over the phone, by a doctor I had never met before (and still have not met). A couple of days later I got a text from my GP saying that they had prescribed the hormone treatment requested by my oncologist (?!) which I later found out was Dr Bartlett…shows how much he was listening to me during the call.

I felt very angry. Every interaction with the hospital made me feel as though I was on a conveyer belt for treatment, that I must accept everything that they were throwing at me and they were not tailoring a treatment plan to me as an individual or checking if I was ok. I also felt as though no-one was really overseeing the plan as a whole and that the different departments were not working together properly. My original oncologist Melissa was now off with covid and my breast care nurse Hannah had been redeployed to work in ICU.

Overall, it made me feel as though I had no control over the situation. Which in many ways I don’t. They were no longer giving me treatment options, rather just dictating a set course of treatment, so my way of regaining control was to say that I was no longer going to have any treatment. The interactions with the hospital were becoming too draining, speaking to a different doctor every time and being drip-fed information. I decided I’d had enough.

I felt like that for a long time. At the same time I was not in work and there was no sign of me returning anytime soon, lockdown meant that I could not see friends or family apart from with one other person outside when the temperature hovered around zero and there was no plan for that changing either. I used to see the funny side of things when they went wrong, I would be in the hospital when something bad would happen, and I would think how I could turn it into an amusing story to tell. Now all I could think of was how sad it was that this was my life.

At the beginning of February, Tom dragged me into the hospital for radiotherapy every day for two weeks. I received 36Gys over ten sessions. I’m glad that’s over. He also encouraged me to start counselling and managed to find someone who was still running sessions face to face rather than over the phone as I’d had enough of virtual consultations. We found her through the Maggie’s centre, Maggie’s is a charity that provides free cancer support and information in centres across the UK. We should have gone there much sooner, it turns out it’s a haven for decompressing after appointments and they have lots of great resources, not to mention the tea & biscuits on offer at a time when you can’t go and sit in a café (or bar!) to relax before going home.

I have been reading a lot about positive thinking and trying to practice getting into good habits as my thoughts are the only thing that I am in control of that will help me get through more tough times. It helps to have things to look forward to, so against government guidance I have booked not one but two holidays! If they don’t go ahead then at least the thought of them has made me feel a bit better. I have been trying to get back to work, just one or two days a week, so that I have a feeling of purpose. My old job in community said that as I had received a shielding letter last year, it it “trust policy” that I cannot come back yet despite the fact that I have been told by my oncologist I am fit to return to work. So I am looking elsewhere, applying to practices and the rare dental hospital job that pops up. Fingers crossed someone will employ me soon.

The next time I spoke to an oncologist I had my thoughts together a bit better. I told her that I had lost trust in the department due to all of the mixed messages and bad appointments and that made me not want to engage with them anymore. I felt that they had not prepared me sufficiently for what might happen after surgery and therefore it felt like they were moving the goalposts and I didn’t have the energy to deal with that now. I said that if I was even going to think about having anymore chemotherapy that Tom would have to come in with me for my appointments, I wish I had insisted sooner.

So now it is the morning of the first of fourteen rounds of chemotherapy, which will be given every three weeks for the next nine months. Tom is allowed to come in with me. If I make all of my appointments on time then my last session will be on the 1st December, less than two weeks before my 30th birthday. I am not sure if I will complete this part of the plan as my tolerance for treatment is minimal and I am failing to see the benefits anymore, but we will just have to wait and see!

Frank has been on his holidays to Tom’s parents for a couple of weeks but has now returned home, much to their dog Paco’s relief I am sure. He had a wonderful time playing in the snow and running around their garden. He is now recovering from a traumatic visit to the vet’s, about which Tom is much more understanding and sympathetic about that I am! We are both hopeful that he will return to his normal self soon enough.