Samye Ling

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

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 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……

CAP or CRAP

In breast cancer world you have to get used to a whole new language. People talk in medical jargon and abbreviations. I’m still catching up. The drug I’m on now is called ‘CAPECITABINE’ or XELODA. Breast cancer ladies call it ‘CAP’. Because of the effect it has had on me for the last two weeks I’m going to refer to it in this post as ‘CRAP’. There is a happy ending to this post so please keep on reading.

Yes I’ve used this one before but it’s so apt. Thanks Mr Shrigley!

I’ve just completed my first cycle of CRAP. I’m on a 3 week cycle of this drug which means I take the pills every day for 14 days, followed by a recovery week.

When my consultant started me on this drug 3 weeks ago he said I should tolerate it quite well. They always understate the side-effects when they start you on a new drug. I understand why they do this because the placebo effect can happen. If they tell you that you’re going to feel really sick then the chances are you will, however nothing could prepare me for the severity of side-effects that this drug provoked.

The nausea, diarrhoea and fatigue that started earlier last week got progressively worse. This was combined with excruciating stomach cramps and blistered feet. I spent most of last weekend hunched over the toilet. It wasn’t pleasant. I couldn’t eat without my stomach going into spasm and I lost around 4kg in weight.

I felt so unwell on Friday that I ended up calling the hospital hotline, but was was redirected to my GP. If you’re not exhibiting signs of a neutropenic infection (i.e. a temperature), you’re not considered ill enough to be admitted to hospital. Apart from the tummy troubles, I was tachycardic (my heart was racing) and my blood pressure was very low. My GP, who could see how poorly I was, called the hospital herself to confirm she could send me home. Capecitabine can affect the way your heart works, so I was frightened that something was seriously wrong.

I was reluctantly sent home and mum came down from Scotland to look after me. You’re never to old to need your mum, even at my age. Mum tried to encourage me to eat but the only thing I could stomach was lemonade. I didn’t eat a proper meal until Wednesday.

It’s now Thursday and this is the first day I’ve felt normal in over a week. I’ve got my appetite back. I managed a walk and I was quite excited about the fact that I didn’t have a bowel movement for over 24 hours. It’s the little things that matter.

Today I saw my consultant. He’s lowered the dose to make the side-effects more tolerable and given me an extra week off to recover.

The good news is that it was all worth it. Not only have my tumour markers come down but the lump under my arm has shrunk!!! My consultant said that with this drug, the side-effects are an indicator that the drug is working, so all that time on the toilet was worth it.

I’ve had a really shitty two weeks but I’m happy that things are finally going my way. I’m one step closer to remission.

Udderly Smooth and Proper Naked Selfie’s

This is a short post just to say a massive THANKYOU to everyone who contributed to my fundraiser. With off-line contributions from family and friends I now have enough money for ‘THE TEST’. There is a little piece of Kath stored in a lab somewhere, which will be sent to the lab in the next week or so.

I’ve recently started a new chemotherapy regime (Capecitabine) and this is making me feel pretty vile. My new best friend is the toilet, I have a mouth full of ulcers, blisters all over my feet and I was admitted to A & E on Monday with suspected neutropenic sepsis  (thankfully I didn’t).  Today is the final day of my first drug cycle (day 14) before a much needed week’s break.

One of the reasons my consultant put  me on this drug was because it’s not so hard on your white blood cells so there is less risk of neutropenia. I’ve escaped neutropenia, however the other side effects have been horrific. I’m on a really high dose so they should lower it for the next cycle.

One of the advantages of this drug is that I take it orally, so there are no horrible injections. This is easier in some ways but psychologically it’s really difficult taking a drug which you know is going to make you feel so ill, especially when there’s no guarantee that it will work. This is why the Tumour Profiling is so important. It will establish whether the Capecitabine is doing it’s job. If it’s not working, it will tell us what drugs are compatible.

Udderly Smooth – great for cows and cancer patients

I don’t like feeling ill (does anyone?) and I really struggle when I’m not able to physically function. Walking is my meditation so it’s been especially hard this week not being able to go out for my daily stomp. According to my OT mate Sally, I’ve got Occupational Deprivation – I can’t do the things I normally do. I love how they have a label for everything, it makes my misery seem somehow more justifiable.

The schmaltzy ‘Think of 3 positive things for 7 days’, doing the rounds on Facebook, has been a real test for me this week. But even I have found things to be positive about. Discovering Udderly Smooth cream (for those on Capecitabine this is a lifesaver) was a big highlight of my week however the fundraiser really kept me buoyed up. It’s been quite life-affirming and nice to know that so many people care.

What started as a little campaign to pay for ‘The Test’, has now taken on a life of it’s own and I’m handing over the reigns to the ‘PROPer Naked Selfie’ team. My lovely Aussie sister-in-law came up with the idea of ‘PROPer Naked Selfies’. I’ve nearly reached my target and I’m looking a bit peaky for selfies, so I’ve asked that any donations from this new campaign go directly to Maggie’s.

For those of you not familiar with Maggie’s. This is a charity started in Scotland by Maggie Jencks. The first Maggie’s Caring Centre was opened in Edinburgh in 1996 and they now have branches all over Scotland as well as a few south of the border. Maggie’s Manchester is opening in 2016!

My brother getting his kitchen utensils out for Maggie’s

The Maggie’s centres offer free practical, emotional and social support to anyone affected by cancer. I attended the Dundee centre where not only did I make lots of new friends, I did classes in Tai Chi & Yoga; joined a writing group; did practical courses on coping with cancer; and had countless free massages. More than anything they provide a warm safe space for people with cancer to relax, away from the harsh sterile environment of hospitals. A friend of mine described the Dundee centre as “a cuddle”.

I know the extroverts among you can’t wait to do a ‘PROPer Naked Selfie’ for Maggie’s. Just get your kit off, find a prop and take a selfie: Text ‘NKED50 £2’ to 70070 to donate £2 to Maggie’s OR donate here at JustGiving.

Tips of the week (for those on Capecitabine) to relieve symptoms of Hand and Foot syndrome: 

Udderly Smooth extra care cream – they do an Oncology range for Hand & Foot syndrome. £9 for a huge tub on Amazon

Vitamin B6 – 100mg a day is said to reduce severity of Hand & Foot

Omega 3 – I’ve been taking about 5000mg a day which I think has helped reduce the inflammation

Silk gloves – these let your skin breathe and are said to calm irritated skin

Not sure which one has been most effective but all a combination of all above definitely helped reduce the severity of my symptoms.