It's funny how our bodies just seem to know what is best for us and where we should be. My body made a decision for me two weeks ago. And as these things often seem to happen with my life, this decision came about in a very roller coaster way.
I had arranged a spa weekend with all my best friends from school at the beautiful Hoar Cross Hall in the midlands. My friends all have families and busy jobs so they were going to come for the Saturday night. With all the travelling and general busyness I knew it would take up too much energy so my best friend, Jennie, took a day off from her family and came up on the Thursday night to stay with me until the Saturday.
We ate dinner after her arrival on the Thursday and I had a soft boiled quail's egg. Now to anyone else that would have been fine, but for me and my rubbish immune system it materialised the next day into mild food poisoning. In the end I made the tough choice to travel back to London with Jennie, missing all my school friends who were coming to see me! But sometimes being back home near your medical team is the sensible thing.
On the way home I tried to arrange for a doctor to come and see me and assess the 'damage' but blimey my GPs out-of-hours service was a nightmare! You would have thought someone phoning up with the line: 'I'm an advanced cancer patient with X, Y and Z symptoms and need to see a doctor' might jump you up the queue a bit, but NO! You have to speak to so many people explaining your predicament each time and it's just hell. After two hours of phone calls backwards and forwards, my hospital The Royal Marsden made the call to admit me as a patient.
Telling the out-of-hours doctor that one of the best cancer hospitals in the world had decided I was sick enough to be a patient while he was still deciding if I even needed an out of hours visit was rather satisfying!
I went to the Sutton branch of the hospital, which is one I don't know at all. It was very scary being there for the first few days. Even though they are the 'same' they are so very different. The food poisoning passed quickly but the sickness remained, it had a very different feel to it so that's how I knew it was caused by different things.
My blood test results came back with elevated calcium levels, which can make you sick. I had also been having these awful pains around my face for the past few weeks. Recently I broke my collar bone via that high risk activity of putting on a pair of tights, which meant a change in balance of my pain relief medication so it was no longer strong enough. So pains I hadn't noticed before, like those around my face, were coming to the fore.
So there were two things now thought to be causing the ongoing sickness, the face pain and the calcium levels. Sadly entering hospital at weekends has never been a positive experience for me and I'm a firm believer in making the NHS a seven-day service. I wonder why it's not already, as illness doesn't recognise the difference between a weekend and a weekday. Sadly the statistics around weekend hospital stays back that up.
I was very, very pleased when the main teams arrived on the Monday to take control and work out what was going on. They got the pain relief sorted to the right levels so I wasn't struggling. Pain is horrible, it affects your mood, your soul and your whole being. It makes you feel like an angry, bitter shell of who you want to be.
They booked for a head MRI and as I was there a full PET-CT scan to see what the cancer was up to. The plan previously with Prof J was to do the final two rounds of chemo and then scan, but due to blood test results showing that platelets and red bloods were not looking great, we had already delayed chemo. So it was time to look.
The head MRI was first and showed disease progression in the skull, around the facial nerves and in the skull cavity. This would explain all the head problems I've been having including the pain, the numb chin and nose. The solution was whole brain radiotherapy to just give it a good kicking! The treatment was every day for five days. So I had to say goodbye to my lovely little fluffy hair that was just starting to have some lovely growth... boooooo!
Then the double whammy: the results of the PET-CT scan. There is no way of dressing it up. It was bad. The chemotherapies hadn't worked. The soft tissue disease and bone had progressed. So what to do next? There's the rub, there isn't much more we can do. I've had all the best chemotherapies and none of them have given us the results we needed, yes they have given me time which was amazing, but the remaining options are very tough on the body and don't have good results. So we need to look at quality of life instead.
I've had 17 rounds of intravenous chemotherapy in eight months, which by anyone's standards is a lot and my body knows it. It's tired, sore, struggling and needs a break. So treatment has stopped and it's time to let nature take its course. We are still going to do bits and bobs like changing to a new bone drug and as time goes on there might be something more but this is it now.
Time to book those holidays, have fun and make memories with family and friends that will last a life time.
For more information about secondary breast cancer, please visit www.breastcancercare.org.uk/secondary
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