Posts Tagged ‘PIP’

Samye Ling

Posted: September 26, 2014 in Round Three
Tags: , , ,

Last weekend I had a much needed break at the Samye Ling with my mum.

For those who aren’t familiar with the Samye Ling it’s a Tibetan Buddhist monastery (the first outside Tibet) in the Scottish Borders. It’s an amazing place and it’s been there since the 1960’s. They do courses in things like Yoga, Meditation, Gardening & Buddhism. I’ve been there a few times before, but it was Mum’s first visit. We spent a blissful couple of days doing yoga, meditation, eating yummy vegetarian food and switching off from the outside world.

Green Tara

Green Tara

One of the best things about the Samye Ling is that there is no mobile signal and last weekend the wi-fi was broken. It was absolute heaven being uncontactable. I briefly considered chucking my phone in the river but thought better of it.

Since my last post there have been a few developments in my treatment plan. I had a rough time on Capecitabine and although the second cycle wasn’t as bad as the first, my skin was in a right old mess. Apart from losing a whole layer of skin from my feet, I’ve had eczema all over my body including what can only be described as a red, flaky beard. I’m so on trend.

I’m what is known in the trade as a difficult customer and because of the extreme reaction I had to Capecitabine, I’ve been on a break from chemotherapy whilst they decide what to do with me next.  I’m prone to neutropenia and although the Cap didn’t affect my white blood cells, I was incredibly ill during the first cycle. Mum says I have the ginger gene. I’m a delicate flower.

Although it’s been nice to have a break from chemo I feel like I’ve been in limbo for weeks. It’s been incredibly stressful not knowing what’s going on and I can’t face speaking to anyone when I feel like this. I feel like I’m in a constant loop of updating people and it really wears me down so please forgive me if I don’t always respond to your messages. I know people panic when they don’t hear from me and assume that I’m on my death-bed but the likelihood is that I’m just having a bad day.

After enduring the journey from hell (think Michael Douglas in Falling Down) on my way to my surgical appointment last week, a decision was finally made regarding the next stage of treatment. I’m having surgery next week to remove the recurrence in my lymph nodes along with the tiny lump in my reconstructed breast. I had a full axillary lymph node clearance around this time last year but they missed a bit, hence the recurrence.

Getting support at Samye Ling

Getting support Samye Ling style

I also had a CT scan last week to find out what’s going with the rest of my body so I’ve had a week of scanxiety. Yesterday I had a phone-call from the registrar to let me know the results of my scan.

You’d think scan results are quite important however the main reason for her call was to discuss my PIP (Personal Independence Payment) application. For those of you who don’t know PIP has replaced DLA (Disability Living Allowance). Pre-Tory government people with secondary cancer automatically got DLA. We now have to apply for PIP and go through a degrading personal assessment. If you are terminally ill and have less than 6 months to live you can be fast-tracked by getting your doctor to complete a DS1500. I was secretly pleased when my consultant refused to sign this.

The Macmillan lady who helped me complete my form, told me to expect a 6-9 month wait to be assessed, so I was gob-smacked to receive confirmation of my first payment a month after applying. Apparently my breast care nurse pulled some strings and fast-tracked me.

I wouldn’t have bothered applying for PIP had it not been for the advice I received from the women in my secondary support group. I didn’t think I was ill enough, but I could barely walk a few weeks ago. so I no longer feel guilty about being on benefits.

Anyway back to the scan results. The scan results show that the very small nodules on my lungs have SHRUNK. The tumours in my lymph nodes and on my reconstructed breast have remained STABLE. You have got no idea how much I love these two words right now.

At clinic today we also discussed ‘THE (mutational analysis) TEST’. It’s finally happening. My consultant agrees that now is a good a time as ever. They’ll have fresh tissue to sample and I’ll have a few weeks break before re-starting chemo. The Capecitabine is working, so once I’ve recovered from surgery it’s likely that I’ll go back onto a lower dose.

My operation is on Monday. It’s not a big operation but it took me a long time to recover from the last one. With my newfound PIP wealth, I’m hoping I might be able to squeeze in a sunshine break before I restart chemo. In the meantime I’m trying to retain some of the calm I felt at the Samye Ling. And breathe……