I wrote previously about how much I love June, and this year did not disappoint. I’m slightly surprised to find myself in July already. I’m kind of sad that June is over, it seemed to go so quickly, but I look forward to seeing what July has to offer. My love of June meant that all my favourite things come at once and this year, June was truly outstanding and I feel blessed to have shared some of the very best of times with my nearest and dearest. I still have peonies on the desk, so July is shaping up OK so far…
From a treatment point of view, things are moving along as planned. I am in a respite couple of weeks between chemo cycles which right now feels like a great place to be. The last chemo cycle I wanted to do without steroids as I had such a terrible reaction to the corticosteroids. There was some concern, not least my own, about how the second cycle would go without them, but the first dose was OK. By OK I mean I felt pretty terrible for about 48 hours and slowly improved in to the next week and the second dose. What I didn’t know was that the dose was being increased for the second week. You can imagine my joy at that news. The theory seems to be that they will increase the dose to the maximum the patient can tolerate. So essentially I interpret that to mean if you can get out of bed without shaking and throwing up, then you are not trying hard enough. So the second dose was a bit gruesome, and I was hit with some serious fatigue that week. But then of course, I had a birthday to celebrate, so I pulled myself together.
During the resting after the second dose I was sent a questionnaire from Breast Cancer Care about my experiences of secondary breast cancer. I have written quite a lot in the past about what secondary breast cancer is and how it is managed. The questionnaire however, made me quite angry about my diagnosis and everything that surrounds it. It asked me lots of questions about the care, the treatment, the peripheral care (for me and family), the support etc etc and I remembered how much is missing from the “system”. How much of my own care, help and understanding has come because I have had to go looking for it. Let me tell you; it’s not good enough. I wasn’t told at the end of my primary treatment what to look for in terms of secondaries. I was embarrassingly ignorant and more fool me for not asking those questions at the time but I was discharged without a backward glance. The annual check-up (mammograms etc) only looks for recurrence in the breast, which is ridiculous. It was only a blood test, that I pushed for, that started the process of turning over the rocks to find what was really going on. I don’t really want to labour on this here, maybe I will write a whole separate blog about it one day. The point is, and really the whole point of this blogging is to remind you to be body vigilant. I know I have a number of readers who have primary cancers and I beseech you to push and push and push to get the right checks. The only way to secure good outcomes is early diagnosis. I wrote on my questionnaire that I am disappointed in the system as a whole, but not the specifics of the treatment I have received. I hope that by completing the questionnaire it will allow the various organisations to find better ways to manage metastatic/stage 4ers/secondaries in the future. I will end this paragraph with a few stats, most of which are shocking and for me, depressing. Things need to change. Should you be interested you can find more information from this charity: Make 2nds Count
1,000 ~ Approximate number of individuals that die each month in the UK from secondary breast cancer.
5% – 9% ~ of funding for breast cancer goes to secondary research.
And from Breast Cancer Care:
Two thirds (66%) of Hospital Trusts in England do not know how many of their patients have incurable secondary breast cancer, according to Breast Cancer Care findings. It’s estimated there are around 35,000 people in the UK living with the disease.
Close to half (42%) of NHS Trusts and Health Boards surveyed by Breast Cancer Care do not provide specialist nursing care for people with incurable breast cancer.
Quite apart from that, June has mostly been about celebrating my 46th birthday. I have truly been a birthday brat and, well, I’m not sorry. Somebody much wiser than me once said that getting older is a privilege and in my case it is certainly not a given. It’s very easy to take the passing of time for granted. I don’t do that anymore.
The birthday plans have included lots of catch ups, lunches, cups of tea and also a few trips. The first weekend away was back to Windsor for a lovely sunny afternoon then the next day a stroll around Windsor Great Park. We were stopped by a tourist who asked if there was anything interesting to see. I’m guessing he forgot his guidebook.
The following week GozFam set off to The Mumbles. We stayed in an Airbnb and were really lucky with some sunshiney summery weather. The day my sister arrived we collected her from the train station. I told her she had 10 minutes to unpack before we were going to the beach and we were going swimming. She put me to shame and ran straight in to the ocean. It was kinda cold, approx. 12 degrees. My Dad and I took a slightly more gentle approach to getting in, but the big waves kept splashing me and I had no choice but to scream really loudly. It gave me life. I love the sea so much.
We had four days of celebrating and I was well and truly spoilt. We ate very well and there was of course plenty of ice cream and cake. I am a lucky girl. We explored a little more of The Gower and met my Aunt Jill for Sunday lunch who fortuitously was also holidaying in The Gower.
We spent more time on the beach, had more swims and when the weather turned, we went shopping instead then had an amazing BBQ. All in all it was a spectacular way to turn 46. There was plenty of prosecco and, well of course, more peonies.
Never one not to enjoy excess, I am now celebrating 46 part 3 in the New Forrest. There’s no point doing things by halves… The Life of Riley indeed!
Back to earth with a bump next week, Monday is day zero once again.
For now, a huge thanks to everybody who has sent cards, messages, gifts, flowers and love in any which way to help me celebrate. I am more grateful than you can possibly imagine (does anybody want some cake…. ?).
Big Love, AG xx
THE LIFE OF RILEY : THE LIGHTENING SEEDS/IAN BROUDIE Lost in the Milky Way, Smile at the empty sky and wait for The moment a million chances may all collide. I'll be the guiding light, Swim to me through stars that shine down, And call to the sleeping world as they fall to Earth. So here's your life, We'll find our way, We're sailing blind, But it's certain nothing's certain. I don't mind, I get the feeling You'll be fine, I still believe That in this world, We've got to find the time... For the life of Riley. From cradles and sleepless nights, You breathe in life forever, And stare at the world from deep under eiderdown. Although this world is a crazy ride, You just take your seat and hold on tight. So here's your life, We'll find our way, We're sailing blind, But it's certain nothing's certain. I don't mind, I get the feeling You'll be fine, I still believe That in this world, We've got to find the time... For the first time...