The Reconstruction era.....
...but not in the way that you think I mean it. No, not the American Reconstruction, nor the silicone variety. At least not yet. Reconstruction of my missing breast will happen eventually, but not until early next year for a variety of reasons.
It's been well over a month since I last posted, so what has been going on?
I'm talking about reconstruction in the context of my life and the changes since diagnosis. You spend your time in treatment just muddling through, trying to make it to the next chemo, then surgery, then radiotherapy, Only when you are out the other side, as I am now (with the exception of the HER2 antibodies that I have every 3 weeks) can you begin to put your life back together.
"So, what's changed?" I hear you ask? Well, pretty much everything although it may not look like it. Firstly, there is trying to come to terms with who you now are. In my case, I'm missing a breast and have a 6-7 inch scar instead. I have limited movement on my left side where the scar tissue makes it difficult, limited hair and spend most of my days trying to control my temperature thanks to the effects of an early and immediate menopause. It's not exactly sexy in a world that is quite hung up on external appearances. I'm coming to terms with it, but some days are easier than others.
There are certain things I took for granted or didn't even think about previously that have come into sharp focus now. Pensions for one thing! Do I bother saving for a retirement that may or may not happen? I'm not in a bad place about it, it's just that these are very objective questions that I now need to consider. I've also lost a lot of confidence, which is quite difficult for me to admit. For some reason on some days I do feel like I'm on the scrapheap of life at the age of a little over 40 and its not an easy place to be.
We've found a house we like and have put in and had an offer accepted. We've also sold ours relatively quickly. It will be a downsize, which both Stephen and I are comfortable with, but again, we didn't expect this to be happening for a fair few years yet and always thought our next house would be an upsize. In some ways it feels as though cancer has just accelerated my life to making all these decisions a little earlier than would have happened otherwise. It's a beautiful site about 3 miles from where we are currently - it felt so peaceful when we viewed it and I instantly felt at home there. It also allows me to fulfill a long-held dream of having some chickens! More importantly, it allows us some options as we can manage the mortgage on 1 salary should we need to.
The Shine Marathon walk was on the 22nd September and was a big event for a number of reasons for me. I was walking with 5 of the mothers from Briony's school who have been so supportive during the last year. We duly set off on the train into London looking like we were going on a Duke of Edinburgh expedition! We were due to start at 9.30pm at Southwark Park and we felt distinctly overdressed in our waterproofs as we got off the train surrounded by others in their lightweight gym gear, with rucksacks stuffed with goodies that a Girl Guide brigade would have been proud of! The atmosphere at the start was great and again everything was bought into perspective for me when Jack Johnson "Better when we're together" was played on the start line. This was the first dance at our wedding and it was also played whilst I was having one of my radio sessions, plus it is also the hold music for Aviva (my private healthcare provider) so keeps popping up when I need it most.
And so off into the night we went, bunny ears and bracelets flashing! We had agreed beforehand that we would start together and finish together and we stuck to it! There were stops every 4-5 miles and for me, the most memorable one was at around 8 miles outside the Francis Crick Institute near Kings Cross, which is funded by Cancer Research UK, which was the charity that we were raising funds for. This was also the stop where I took my shoes off as I was starting to get blisters and realised that I had got my socks on the wrong feet! Not helpful when they were padded in specific places to stop blisters!
I've never run a marathon, but I have run half-marathons and I can honestly say that this was harder than running a half-marathon. It just takes so long and is a challenge both mentally and physically. You just have to keep going. Luckily, for most of the walk the weather was on our side. However, from about 4am onwards it started raining. Just as the sun came up. We carried on. By this time, pretty much everyone walking around us was quiet. However, undeterred, we continued to talk our way through the night and early morning. As there were 6 of us we naturally kept swapping and talking to different friends which is probably what kept us going. We all had our times when we were down, but stuck together and pulled each other through. The most telling time was around 7am in the morning, where we had around an hour to go. There were a number of issues (some of which we all promised would go no further than the 6 of us walking - ladies you know who this is!), but by far and away the most poignant moment was when one of our group heard from a friend's husband to say that her friend had sadly died from cancer the day before. Sobering thoughts and again a reminder of why we were walking. The last hour of the walk was heads down, bottoms up and power through. By this point we were all absolutely soaked, despite our wet weather attire. Although I have to say we were slightly smug as at least we had wet weather gear and didn't feel as ridiculous as we did on the start line!
We finally walked across the finish line at around 8am. It was very emotional, especially as the Dad's and daughters had all arrived to watch us finish. I think the adrenaline got us through. Suffice to say there were tears all round.
I'm glad I did it, but I never want to do it again! I couldn't walk for the remainder of the day, but recovered fairly quickly afterwards.
I know that many of you sponsored me, so thank you. My total was over £4.3k (just over £5k with gift aid) and the 6 of us walking raised around £12.5k, which is an amazing effort. I'm humbled and grateful for all your contributions.
Briony's school have a value every month and in September their value was determination. As part of a condition of sponsorship from the head of prep, we had agreed to go in and speak to the girls at one of their assemblies about how we wanted to lead by example and had shown determination in finishing the Shine walk (no pressure, it meant we had to finish). Having presented to large audiences easily in excess of 300 people during my career, I was yet to face my harshest audience in my daughter and her school friends. But face them we did, all 6 of us. I was also delighted to be able to try and normalise cancer for them and was very open about the fact that I have breast cancer. We even made the school twitter feed!
What else has been happening? Well, my life continues to be punctuated by the HER2 antibodies every 3 weeks, including today. Today marked treatment number 15 of 18 (with luck). I have run to treatment 13 and 14, much to the chagrin of the nurses who clearly think I'm bonkers. For me, it's a way of proving to myself that whilst I have this shitty disease I have a choice in how I respond to it.
Cancer has a weird way of invading every little nook and cranny of your life. I've been having back pain for around a month or so and knew that I needed to mention this to my consultant. It's a double-edged sword as you know this is going to result in yet more tests and scanxiety, but my motto has always been that it is better to know. Sure enough, an MRI of my spine was speedily organised. This was yet another joy - an MRI machine is not for the faint-hearted and because it was the whole of my spine that needed to be scanned I was once again subjected to the horrific head restraint. If you have seen Silence of the Lambs and the head brace Anthony Hopkins wears then you will have an idea of how I felt!
I needn't have worried (sort of). The news was good. Or in my warped world good. Probably not for anyone else, but my benchmark is probably lower than others! I was told that there was no evidence of cancer in my spine (huge relief) but that there were signs of significant wear and tear. It turns out that all my running isn't doing my spine any good and therefore I need to find another outlet.....
And so time continues. It's now been approaching 11 months since I was diagnosed and the anniversary, or canciversary as others call it is fast approaching. I've therefore been reflecting on how much life has changed. This has been bought into sharp focus by 2 events recently.
Firstly, I have had my year 1 recall to the annual screening programme which I will be subjected to for many years to come. The letter arrived and by now I know letters from the hospital, so was fairly nonchalant about opening it as usually they are appointment letters. This was a little different, as it marks a milestone from diagnosis. It also means that I have made it to almost a year (God willing that nothing happens in the next month or so) without anything reappearing/progressing, which is a major milestone. 2 years is better, but hey, beggars can't be choosers and that will be the next milestone to aim for. Stephen then examined the letter in a little more detail and started laughing. When I asked why, he said that the letter was inviting me for a mammogram of both breasts and did I want to ring them and offer them half of the appointment back! Cheeky bugger! However, it does highlight the lack of communication between the private sector and NHS.
Secondly, I've been reflecting on how adaptable as humans we are. I thought this as I rocked up for treatment today. It has now become second nature to me. Again, this was bought into context during my treatment. I often use treatment to catch up on phone calls as there isn't really much else I can do during this time. I was on the phone to an old work colleague when one of the nurses arrived to change the line as it was leaking. I relayed this to the person I was on the phone to and said I would call him back and promptly hung up. When I called him back, he said it had made him chuckle that I had just dropped it into the conversation.
Yet in the week where we have had both world mental health day and secondary breast cancer day, this is what makes humans so amazing. Regardless of what is thrown at us, we just adjust to "The new normal". My new normal is needles, scans, uncertainty, hospitals, treatment every 3 weeks and fatigue. Yet I can honestly say I still consider myself lucky. I am still here, I feel well and my life goes on, albeit it in a different context.
On Friday I had one of the most important scans of my treatment. It is the CT of my lungs which will determine whether I have metastatic (stage 4) disease or not. It has been pulled forward about 3 weeks but that is another story another day for another post. Keep your fingers crossed. I will post the news as and when I am ready.........we see the consultant Tuesday evening.
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