General update

My last round of chemo, the fourth round, was on Thursday 1 August, and it coincided with my third Zometa infusion, which I have every 6 months to protect my bones. Unfortunately it seems that the side effects compounded each other and I had 5 days of feel wretched and incredibly nauseous. For most of the weekend afterwards I couldn't really make it out of bed, the fatigue was immense. It really knocked me back. For this reason, and because I've had so many delays this time, I was dreading chemo 5 this week. First of all, I could tell that my bloods wouldn't be good enough, so I'd be pushed back another week. And I was dreading how I'd feel, and how long the side effects were going to last. Chemo is cumulative, after all, so it stands to reason that you feel worse each round.

So on Thursday I went to my regular pre-chemo oncology appointment, but this time I was prepared for a tough conversation. When Dr M____ asked me how I was, I explained that, while I'm certainly feeling much better physically than I did when going through chemo in 2017, I've been struggling with the impact it's having on my life, and therefore my mental health is taking a battering. I have tried to avoid putting my life on hold this time, but when my chemo keeps getting delayed, it's incredibly hard to plan things. We had a good conversation about it, and we have decided to stop chemo altogether. I was so relieved I got a bit teary! There is no evidence that suggests that 6 rounds would be more effective than 4, and the cancer I had was so tiny that it's highly unlikely there are any rogue cells remaining. And if there are, 2 more rounds are not going to do anything to them if the 4 I've had already haven't nuked them! Let's face it, this chemo was elective, and my first dose was double that of the subsequent doses. As it turns out, my bloods weren't good enough anyway (platelets were only 75), so I'd have been delayed, as I predicted. But I'm so pleased we've made this decision and I don't have to go through carboplatin again.

I now have to have a CT scan (standard after a course of chemo) and I will see the oncologist again in 6 weeks' time. Then I will have a check-up every 3 months, with a CA-125 blood test (for signs of ovarian cancer) for 2 years, after which it will become every 6 months, and then every year, until I hit the magic 5-year mark.

So now I have to concentrate on getting myself stronger and fitter in preparation for my mastectomy. I have a mammogram and an MRI in October, and then I should be seeing my breast surgeon some time in November to get the results and to plan for surgery. I'm hoping that can be sometime soon in the new year. There's still quite a lot ahead but I feel as though I've passed another milestone in my treatment.

Celebrating another milestone with St John's donuts

In other news, I've been accepted as a volunteer counsellor for Breast Cancer Care, as part of their Someone Like Me programme. This is where women who are newly diagnosed can be paired with someone who has been in a similar situation, and have a series of phone calls. Before I can do this, I have to go through a training programme, and then I am mentored for my first few calls, before I'm a fully fledged counsellor. It's a voluntary position for a minimum of 3 years. I'm really looking forward to doing this. It's so important for me to 'give back' in a meaningful way, and help others going through what I've gone through.

I've also recently been seeing a new counsellor myself, through my GP, and I'm having a much better experience this time than I did with the psychotherapy team at Bart's. I see her every Thursday morning for an hour, and we've talked about so much. She has really helped me to think about things in a different way, and pursue lines of enquiry that I'm finding really helpful. I have 4 more sessions left, so hopefully that will feel like enough.

For those of you who don't follow me on instagram, I've also finished my post-treatment craft project: a baby blanket for a good friend who gave birth to a little girl a month ago. I crocheted when I was confined to my couch after both my surgeries, during chemo, and as I've been recovering each round at home. I'm so proud of the result!

The finished blanket!

A&E & Neutropenia

So, I guess it had to happen at some stage, and you could tell from my last post that I suspected the time would come soon. Yesterday we spent the whole day in A&E at UCLH (University College London Hospital, my nearest hospital with an A&E department, as St Bart's doesn't have an A&E).

I have been experiencing bone pain with the Docetaxel, including pain in my teeth and jaw, but over the last few days the pain has become concentrated on my lower left wisdom tooth, and my cheek and mouth has become swollen in that area. By Saturday evening the pain was intense, so I called the chemo hotline. The chemo hotline is a phone number I can call if I'm experiencing anything in a list of symptoms and I get through immediately to a nurse on my chemo ward. The number is attended 24/7 and they do encourage you to ring no matter how trivial you think the call to be, as they can help you decide what to do. Generally, the answer is 'Go to A&E!' but at least you feel as though it's legit.

I called again on Sunday morning and although the nurse was quite keen that I see a dentist to check out what was wrong, she was more concerned about the possibility of me being neutropenic, so advised I get myself down to A&E. Tanai and I headed over to Euston Square station and UCLH, and with my chemo platinum card I was fast-tracked through the people who had arrived at A&E on foot.

They did general observations, blood pressure, took a blood and urine sample, took jaw and chest x-rays and gave me my own room. I saw a doctor who advised that the x-rays came up okay, and I didn't seem to have an infection, but that I was indeed neutropenic. My neutrophils were 0.5 ('normal' is between 2 and 7, anything less than 1 is neutropenic) so they considered keeping me hospital in for observation. Meanwhile they gave me morphine for the pain and some intravenous antibiotics in case my tooth had an infection. They sent one of their oncologists to see me, a lovely woman called Dr O___, and she asked me lots of questions. She decided to give me my first G-CSF injection (granulocyte colony stimulating factor), which stimulates the production of white blood cells in the bone marrow. I received that and a 2-week course of antibiotics to take at home, and was discharged.

In my room at UCLH

Today I popped into St Bart's to see the team, and they have given me some codeine for the tooth pain (I do still need to see a dentist) and 5 more G-CSF injections for me to take at home, in order to try to build up my neutrophils so I can still have my next chemo on schedule on 2 August. So tonight, Tanai became a different kind of Dr to the one he's used to being, and injected me with my G-CSF. He was a bit nervous, and so was I! You have to pinch a bit of your belly and jab it sharply into the flesh, and then push the liquid in (it doesn't go in a vein). Neither of us really knew what we were doing but we googled it and then just went for it! But now we know how it's done, the next few should be relatively easy. I will now get these injections each time I have chemo, in order to boost my neuts for the next round.

Dr Cardona in the house!

As I'm neutropenic they have also advised me to be cautious and not expose myself to infection, so I'm working from home this week and trying to get as much sleep as possible, to allow my body the best chance to recover. I keep taking my temperature regularly and if it goes above 37.5 I will call the hotline. It's touch and go whether I will need to go back to A&E this week, but hopefully these injections and the antibiotics will do their job. I'm a little nervous that the tooth problem is significant, as it's generally not advised to have a tooth extracted during chemo (due to the risk of infection), but we'll see what the dentist says (if I ever manage to register with one and get an appointment!). All in all, not the most fun weekend I've had, but at least it wasn't too dramatic.