I’ll cut to the chase as it’s been weeks since I posted and obviously things weren’t great when I last updated you all.
As many of you know through Facebook, text, or email the bone scan and CT scan results I got two weeks ago were as good as they possibly could be and I have joined the ‘Stable Mabel’ club – the moniker we proudly proclaim on the Secondary Breast Cancer online forum I’m a member of when nothing changes.
For anyone living with Secondary Breast Cancer (SBC) remaining stable is as good as it gets. That’s all we want (and if by some miracle there is a drug that improves things, even a tiny bit, for any one of us, we all celebrate – wildly). But we know that we are not going to be cured. I am not going to beat cancer. I am going to be living with it until it kills me (that, or I get run over by a bus!)
So for me to be a Stable Mabel really is as good as it gets – and I can’t tell you how happy that makes me J
Going forward my treatment remains the same. Three more rounds of the wonder drug Kadcyla (a combination of Herceptin and chemo) – once every three weeks, plus my bone strengthening injection (Denosumab) every four weeks, and then another set of scans.
Before each injection and infusion I have a blood test the day before to check various things – my liver function because the Denosumab can damage the liver, my white count in case it’s too low to have the Kadcyla, and then there’s the echo of my heart every 12 weeks because the Kadcyla can damage my heart, and a dental check every 12 weeks because the Denosumab can cause my jawbone to disintegrate and teeth to fall out. Throw in other appointments – oncology consultant and then the scans after every three cycles of Kadcyla and I’m at the hospital most weeks at least once. But I am not complaining. I have the most amazing team looking after me and for that I am immensely grateful.
I can’t pretend the last month has been easy by any stretch of the imagination. In fact I think it’s been the hardest since this whole journey began in November 2014.
Four weeks ago today I lost someone who had become an incredibly close friend over the 16 months I had known her. We met when I joined the local breast cancer support group and from the first moment I was in awe of Julie’s courage and beauty (inside and out). She had already been through some much but in November last year Julie was also diagnosed with SBC and we became a lifeline for each other – crying, laughing and often just ranting at the unfairness of it all. We got each other through the toughest of times and all I wanted for her was to have as much time as possible with her lovely husband and three wonderful children (4, 9 and 11).
Julie had such plans for the summer holidays, for forthcoming birthdays, and for Christmas, knowing after her latest scans and diagnosis in February that these would probably be her last. She was doing well, on an oral chemo, but kept getting dreadful headaches which nothing could touch. Nothing showed up on brain scans (the greatest fear for anyone with SBC) but Julie collapsed, was put on life support and died suddenly. I am so glad I got to see her in intensive care the night before because, quite honestly, if I hadn’t I don’t think I would have believed it and would have found it even harder to cope than I have. We went from bantering on text about when she was escaping from hospital on the Thursday, to her being on life support on the Saturday.
I am so sad and angry that my lovely friend didn’t get to do all the things she had planned – and also didn’t get the time to leave everything as she wanted for her hubby and children.
She gave me a cushion the last time I saw her which says “When it rains look for rainbows and when it’s dark look for stars.” I will and I’ll know she’s watching over us all and that she’s one of those shining stars. I’ll treasure our friendship forever and try to be as positive as Julie always was.
Julie’s death, the side effects of my treatment (mainly chronic tiredness and fluey symptoms), and one of my occasional spells of depression have made this last few weeks incredibly hard, both for me and my amazing husband who is, as always, an absolute bl**dy saint.
I gather my energy, plaster on a smile (and a bucketful of make-up) and get on with things but he is the one that lives with the reality of the situation. Of me in pieces when I get home (or even just into the car and we’re alone) when the mask slips and I dissolve into a weeping wreck. I tell him often how much I love him but am just putting it out here too. This is not just my fight, it is his too and I couldn’t hope to have anyone better or stronger in my corner.
As time goes on I realise that my life now is going to be punctuated by love and loss. Not only have I lost Julie but two other members of the local support group who also had SBC have also died over the last four months. There were four of us and now there is just me. Three ladies from the online forum have also died in the same period.
My new diagnosis has also meant changes to how we plan our lives. Anyone who knows us knows we would have holidays planned and booked years in advance (mainly to get accessible accommodation). We did have great plans for an amazing holiday to Australia at the end of this year but we have had to cancel that, losing money in the process, because I am no longer allowed to fly long haul. It’s just short flights for me from now on – a maximum of four hours – because of the progression in my lung. Long haul means higher altitude and increased cabin pressure which puts me at more risk of lung problems and DVT.
I also need to stop buying tickets for things because I have learned that I am often not well enough to go to things (I’ll watch on the telly instead!) and, because of the three monthly scan cycle, we have to work any potential holidays into that as my oncologist wants me to have had a stable set of scans and three cycles of Kadcyla before any foreign travel. Lastminute.com is going to be coming into its own!
I was so fed up of a diary with so many things crossed out (including Australia) that I have bought a new 18-month academic one and am only writing in things for the coming 3 months in pen. Everything else goes in pencil until nearer the date and if we can’t do it, it gets rubbed out, rather than remaining with lines through as a permanent reminder of something we’ve had to give up!
Apologies for this being a bit of a ‘down’ post – thank your lucky stars I didn’t try writing anything two weeks ago! I’m as well as I can be, it’s been a struggle over the last few weeks, but I’m thinking positive and focussing on the future (well the next three months at least!)
Thanks as always for your amazing comments and messages and apologies to those of you who have been in touch and who have haven’t replied to yet. It’s been tough but I’m getting there and will be respond.