Back from the Marsden

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So, I went to the Royal Marsden yesterday, to see Professor Nicholas Turner, a very eminent breast cancer specialist. And came out feeling rather deflated, because although I’d tried not to get my hopes up, I obviously had. Sadly, he had no magic bullet or cancer cure up his rolled-up sleeves. And he kept telling me – over and over again – how well I’d done to get this far, which may have been encouraging, but actually left me with the feeling that a) I should be dead by now and what gave me the temerity to still be up and asking him for extra options?; and b) that no matter how well I’d done so far, all I could now expect was a gradual (or not-so-gradual) slide towards the grave. To say I came out frustrated and irritated doesn’t quite do it justice – I was fuming. My oncologist has been telling me for years that his goal was to keep me well (with continued chemo) until they found a cure – so where is it? WHERE IS IT????

There was also the frustration of finding out that I won’t qualify for any Phase 2 or 3 trials, which are the ones with all the really promising drugs, because I’ve had too much chemo. Apparently they won’t take anyone who’s had more than two types of chemo after becoming metastatic, and I’ve had loads more than two – I’ve been through the lot. So that’s going to be fun to report back to my oncologist, who obviously doesn’t know. I’ve asked to be referred for trials a few times, but he always talked me out of it and into another type of chemo. I think his logic was that we should exhaust all options at his disposal before he referred me on (possibly with the view that trials are more risky than chemo, which may be true – then again, I would have been a lot more healthy to start with if he’d referred me for trials a couple of years ago). I wish I’d done more research and pushed harder, but you do tend to believe that doctors know what they’re talking about, don’t you?

Anyway, there are a couple of glimmers of hope on the horizon. I might qualify for a Phase 1 trial, which is the proper human-guinea-pig type of trial. These drugs have shown promise in the lab, but never been tested in humans before, so they have no idea what dose to give you or anything basic like that. They give you the drug and monitor you, then all cross their fingers and hope it doesn’t kill you outright. Some people have done very well on Phase 1 trial drugs, apparently – obviously, it must work for some, because those drugs will have gone on into the mainstream. The upside is that these aren’t double-blind placebo trials, so you are definitely getting the drug. Whether that turns out to be a good or bad thing remains to be seen.

Phase 1 trials at the Marsden are conducted in their Sutton hospital, which is a total pain in the arse to get to, so Prof Turner advised me to look at the Christie Hospital in Manchester first. I’m meant to be waiting for his letter and a referral from my GP, but I’m going to phone them this morning and see if I can find out anything. Time is definitely of the essence…

Apart from trials, Prof Turner also said I could try the combination of Fulvestrant and Ibrance, which has been mentioned before but we haven’t tried it yet (due to a combination of my oncologist’s enthusiasm for chemo above all else, and my fear of injections in the buttocks, which are meant to be particularly painful). However, my platelets are currently very low, due to the chemo hammering my bone marrow, so they’d need to recover a lot before I could have Ibrance, as that also causes low white blood counts. And the other option is to go back on one of the chemos that worked particularly well for me, either Capecitabine or Eribulin, although there’s a diminishing chance of them working so well again.

So, there are options. No really great options, but options nonetheless. On the upside, the last round of chemo I had dropped my blood-tumour marker by over 500 points, so that’s good, and I’m starting to recover from the side effects (terrible stomach ache, indigestion, bloating etc, plus a mouthful of ulcers and swollen tongue) which caused me to lose quite a lot of weight. The fluid building up in my stomach seems to be happening at a much slower rate than before, and I also had the stent changed in my kidney, which has allowed the swelling in my left leg to go down. All in all, I’m getting back to fighting fitness (or at least my new fighting fitness – more bantam than middleweight these days), in time for this next chapter. On we go…

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Going into the Down Deep

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Hi folks, just wanted to give you an update. It’s been a whole year since I blogged! And there’s a reason for that – well, there are several.

Firstly, this blog was meant to be about positivity and creativity, and I’ve struggled with that this past year. My health has been going steadily downhill and it’s been hard to find the positive side of that. Living with cancer is never easy, but the occasional upturn in your health helps to keep you going. When the news from the oncologist is generally bad – and anything alternative you might be trying doesn’t seem to make a jot of difference – then it’s even harder to keep the dark clouds from descending. And in turn, that made me less willing to share the bad news. I know we’re all meant to be sharing our authentic hearts out these days, but how do you do that without sounding like you’re throwing an extended pity-party? Because there’s really no upbeat gloss I can put on this – things are rotten in the state of Gab.

Despite almost constant chemo over the past year, the cancer has now spread into my peritoneum (the abdomen lining) and caused ascites and pleural effusion – build-up of fluid in the abdomen and around my left lung. I’ve also got a stent in my left kidney that needs replacing, which has been exacerbating the lymphodema in my left leg, so that’s been swollen and painful. And my liver’s in a pretty parlous state – the metastases there have been steadily growing, and it put me in hospital for a couple of days in June, in severe pain. I used to worry when my tumour marker (CA15-3) got over 100 – last night I was relieved to hear that it had dropped from 3000+ to 2392 (the norm is less than 26).

And so I’m being referred to the Royal Marsden, because my oncologist has literally run out of options to treat me with. When he prescribed this last chemo, he said that he hasn’t used it much because “most people don’t get this far”! But I seem to be made of sterner stuff (and probably my relatively young age, compared to most cancer patients, has a lot to do with it). Amazingly, I’m still “relatively well” – ie, I’m not jaundiced and I’m still upright and walking about. So hopefully they’ll have something new and miraculous down there to treat me with, because they’re always the first with the new drugs. I’m the meantime I’m going to have one more round of this chemo while I wait for the referral to go through, because I don’t dare go completely off-treatment at this stage.

I made a vow to myself the other day to speak my truth more bravely, so this is a start. If you fancy following me into the deep, dark unknown of experimental cancer treatment, I will try to be honest. I might even find some pearls of positivity down there to share – you never know… For now, I’m signing off because it’s time to get up and, as my mum always says, “Where there’s life, there’s hope.” Have a great day xxxx

Mixing and matching

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For most of my life, I’ve agonised over my style (doesn’t everyone?), but I think I’ve finally pigeon-holed myself. I’m a mix-and-matcher. If this isn’t already a defined style, it needs to become one, right now. I may have just coined it… I’m not talking just clothes, I’m talking food as well – hell, every bit of my life. I don’t like to be restricted, and when I do feel it, I rebel. I can’t have a capsule wardrobe, where everything is sensible matching tones, because I love bright colours and sometimes those mismatch with everything else in my wardrobe, but I have to have them anyway. And so trying to be a vegan – one of the most repressive, joyless ways of eating – was never going to work for me, long term.

I know, I know, plant-based eating is very in and is recommended by all health gurus, and is the basis for almost all of the anti-cancer diets out there (although vegans also get cancer, so it’s not 100% bullet-proof). And it’s much nicer for the animals, too, not being eaten or exploited – I get that, too. But the fact is that it takes a lot of determination and commitment on my part to stick to anything, and veganism is HARD. Especially raw veganism, when your diet consists of mainly salad, smoothies and juice. There’s a lot of prep involved and very little you can eat if you dare to go out. Socialising becomes even more difficult when your menu options are basically salad and going out for a drink has become tricky since you gave up alcohol. Honestly, much as I love my friends, sitting with them all after the third round, while I patiently plod away at my sparkling water (lemon, no ice, thanks), is painful.

I also have a 12-year-old son who is mainly carnivorous, which doesn’t help. Grilling him sausages while I prepared yet another “delicious” salad almost had me weeping. But I kept it up – along with all the supplements and other bits and pieces – in order to get my cancer marker under control, and when I learned that it hadn’t I went a bit mad. For two months, before I went on holiday to Corfu, I endured the raw food lifestyle as well as taking baking soda and molasses several times a day, to alkalise my body’s PH level. I got it up to 8, the Holy Grail of healing PH, and kept it there for a week at a time – this was meant to be actively killing the cancer, which can’t survive in an alkaline body (apparently). Before going to see my doctor, I’d worked out that if all this hard work hadn’t done anything at all, my cancer marker would be around 400 (I’d worked it out on a graph and everything). When he told me it was 410, I despaired. I went away to Corfu and ate souvlaki almost daily for 3 weeks, and even drank the odd beer (dreamy!). I swam in the sea every day and sunbathed and had as much fun as I could with my friends and family. When I came back, my marker was around 540 – not far off the same trajectory, and I’d had a hell of a lot more fun.

Since getting back on the chemo, I’m feeling the need to clean up my diet again, just a little bit, to help me access some of the energy I seem to have lost. But I won’t be going fully vegan or even veggie again. I just can’t – it’s not me. I need to have options in my fridge besides salad – I need the choice of eggs for breakfast, as well as porridge and avocado toast or a pint of carrot juice. I need to make my grandma’s scotch broth with homemade chicken stock – it takes an entire day to make and lasts for weeks in the freezer, and is the ultimate comfort food. The barley itself is an instant stomach-soother, if you’re feeling in need of a pick-me-up. And while Californians might be able to live all year on cold food, the thought of going into winter without beef casserole on the menu fills me with dread.

So, pick-and-mix is the way to go – in dressing and eating. And if the chemo works and knocks these spots off my liver sufficiently, I might invite the odd glass of organic red wine back onto my menu. Because life’s for living, isn’t it?

Coming to Terms

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If years were animals, this year would be Dr Doolittle’s pushmepullyou: I’ve gone ricocheting from one extreme to another, from chemo to raw food and back again. Sadly, my high hopes of beating cancer naturally didn’t work out in practice, but back before summer it did give me what felt like a much-needed break from the chemo. Because I think the mental aspect of this disease is at least as huge as the physical, and I’m still coming to terms with it, and back then (well, for the past couple of years) I needed hope more than any drug.

When you’re told that the cancer’s come back and spread, and is now incurable, the water closes over your head and you can’t hear anything for the roaring in your ears. It’s frightening and suffocating, and like a fox caught in a trap, you’ll gnaw your own leg off to be free of it. You wonder how your body became a prison you can’t escape. The thing to do is to go into those feelings and feel them, apparently. Then you get through them and over them and can think freely and rationally again. I didn’t do that. I went into denial, which was great – much better. A safe, sterile room where no feelings could get their grubby little fingers around my heart. I nodded along to what the oncologist said, but in my mind I was singing, loudly, “la la la!”, drowning out the reality.

I went and found lots of alternative options, and you’d be surprised how many there are. Friends and family helped me, because they wanted hope, too. We embarked on an amazing year of fundraising and treatments, flying to Germany, throwing parties, feeling immense gratitude as my incredible friends stepped up and showed me, in no uncertain terms, how loved I am. It was jaw-dropping and humbling, and definitely the best thing that’s come out of this whole situation. My mum has said, on more than one occasion, “You have such great friends, Gab!” and she’s right. And it’s been a privilege to be on the receiving end of all that love – so many people never get this chance to feel it, in this intensity. I have people praying for me and thinking of me and contacting me on a daily basis, just to check I’m ok. It’s quite overwhelming sometimes and I’m not sure what I’ve done to deserve it, but maybe it’s what surrounds everyone and my diagnosis has just made it come to the surface. In that way, I’ve been immensely lucky.

But life goes in cycles, doesn’t it – it’s a spiral. If you miss a lesson at any stage, you get to go round and it comes up again. This summer, the last of the denial dropped away. It was the raw food and Chris Wark’s Square One course that did it. I was sick and tired after a winter of chemo and convinced myself that this was the time to get off the chemo train once and for all, and heal myself with raw food. I signed up, did a course in Cornwall and embarked on a path of rawness, detoxification and pure health. All the while ignoring the fact that I’d had to stop the previous chemo because the cancer had progressed in my liver and my blood tumour markers were rising rapidly. It was panic, really – all that suppressed terror rising up again and drowning out my reason. My oncologist and nurses were worried, but I shrugged that off – what did they know? They just wanted to poison me with chemo. They had no prospect of healing me. The alternative community, with its promises of cures, was my friend.

Unfortunately, it turns out raw food and detoxing can’t turn around my cancer, once it’s active and on the march. Now, I’m not saying that it can’t control cancer that’s slow-growing or inactive (see Kris Carr), or when the active cancer’s been cut out (Chris Wark) or killed by other treatments, including insulin-potentiated chemo (Fiona Shakeela Burns), because all of these cancer “gurus” seem to be proving that it can. But I really think they need to be a bit more truthful about the limitations of their lifestyle approach, because to listen to them you’d think that all you need to do is change your diet and take a shed-load of expensive herbs and anyone can do it, and I grasped hold of that like a lifebelt in a choppy sea, totally ignoring the more conventional lifeboat heading my way. In reality, not every cancer can be stopped by lifestyle interventions, and demonising conventional therapies can be really damaging. How many people have been dissuaded from conventional medicine by Ty Bollinger’s epic video series The Truth About Cancer, with its ringing repetition of “chemo kills”? Bollinger has lost many family members to cancer, but he blames the treatment, not the disease – another dangerous conclusion of denial. Yes, chemo is a harsh treatment and it doesn’t always work, but inevitably it’s the cancer that’ll kill you. On the one hand, all this distraction in the land of alternative therapies gave me hope and a feeling of empowerment, but on the other hand it kept me in denial about the seriousness of my situation, and stopped me having to feel all these really important feelings – grief, helplessness, despair. It’s understandable I didn’t want to feel all that, but I needed to. I really needed to come to terms with it all.

Dying is a natural process, a conclusion we all come to, although we all prefer to live in denial of the fact. Faced with the prospect, how natural is it to turn towards the light and ignore the dark? This is why it’s so shocking when someone young dies, when the reality of nature punctures through our rose-tinted vision of all growing old happily together. Life is a privilege, not a right. Not everyone gets their three-score-and-ten years – that’s how it goes. And that’s also why it’s so important to make the best of the time we have. Cancer’s shit, but it wakes you up. Even when you try really hard to deny and ignore it.

So, where’s all this rambling going? Well, I’m in a new place again – disillusioned with my gurus, back on track with my oncology team. I’ve just had an operation on my left kidney to get it working again, after an expanded lymph node shut it down. This is what happens when the cancer is left to march onward, unchecked. Amazingly, the day after the op, I’m pain-free – modern medicine is marvellous. And after a crazy summer, I’m back to chemo in time for back-to-school. It feels quite fitting. On we go.

Saluting the Biker Boys

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On June 7th, my friend Terry and his mate Andy set off on an epic bike ride, from the South of France (Terry’s home) to North Devon (Andy’s home) and back again, in two weeks. It was originally dreamed up as a way of celebrating Terry’s 50th birthday, but he also, very generously, offered to use it as a fundraiser for me. (Although I’m not doing the German treatment any more, I still get through a fair amount of cash buying supplements and organic food, so it’s great to keep my fund topped up). We set the target as £1,000, and they smashed it! So thank you both for your incredible efforts and the money that’s now safely tucked away in my Yes to Life fund.

In fact, although 1,500 miles in 15 days sounds hard enough, Terry and Andy also had to deal with the scorching heatwave that settled over the UK and France in June (remember that?). For 5 of the 7 days they were pedalling back through France, it was 38 degrees in the shade and 42 on the bike! The roads started melting, sticking tacky grit to their tyres, and they took to swimming in rivers to cool down. Terry says he reckons they had heat stroke for a couple of days, but they pushed on regardless… Unbelievable…

Here are their incredible stats:

1,513 miles, with a total of 108 hrs in the saddle – Carcassonne to Bideford

15 days riding and 2 days rest.

Total climbing: 23,000m.

Temperature: 22-38 degrees in shade. No rain.

Thank you Terry and Andy – you rock! 🙂

Just a little green…

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Good morning, lovely friends and relations,

I’m sitting here – in a cottage in the depths of the Cornish countryside – drinking a pint of green juice (including wheatgrass) for breakfast. The birds are singing outside by the lily pond, and the morning mist is dropping gently on the grass. It’s pretty idyllic – I’m a lucky, lucky girl.

The last time I wrote, I wasn’t in such a good place. I was feeling beaten down by chemo and this relentless disease, which just seems to have had me in its grip for so long now. Aside from that, it’s been a pretty tough year for Luca, moving up to Year 7 – new school, new people, new routines – loads of new things to deal with and remember and cope with – not his forte! So that’s been stressful and then Myrtle, our dog, has really been getting old this year, so that’s been a worry too! Of course, I’m very lucky to have my sister and Tim (who whisked me away to Bilbao a few weeks ago, which was fantastic!), and my Mum and Dave on the doorstep, but my tendency to bottle things up and not ask for help doesn’t really help… But I think I’ve been getting better at that recently (I hope).

Anyway, the question I was posing last time was whether to go for the all-out natural cure or stick with conventional treatments, which don’t offer a cure, but are proven to increase lifespan in some cases. You can see my predicament – I want to be cured, not just given a few more months. And in the case of chemo, those months are spent feeling below-par, often on the sofa, exhausted. Not how I want to live!

But the thing that’s stopped me embarking fully down the natural way is the difficulty I’ve found sticking to the diet. It’s really, really restrictive… Like, no meat, no grains, no dairy, no caffeine, no alcohol, no sugar (helpfully summed up by Chris Wark as “No meat, no wheat, no sweet, no teat”)! The idea is to get as much plant-based nutrition into your body as possible, while giving your digestive system as little to do as possible, so that all your body’s energy can focus on killing and eating up the cancer cells. Raw food and juicing are important because they includes enzymes that help digest the food, giving your body more energy again. Exercise is really important too, as it gets your lymph moving and helps your body get the toxins out. Many people have cured their cancer this way, but it’s not easy. I’ve been trying to do it for ages, but never managed to keep on it properly for more than a few days – not because I don’t want to do it, but because modern life really gets in the way. Temptations are everywhere, people invite you out to eat or for coffee and cake (you never realise how much humans socialise around unhealthy food until you’re trying to avoid it), and I have a son who would gladly eat meat and sugar as his entire diet. The diet and lifestyle take a lot of time and organisation, too, so even just having to go out in the morning can derail the whole day, and feeling exhausted from treatments that give you fatigue isn’t conducive to exercising! Which is why I’m here, at The Raw Retreat, to find out how to successfully get it going in my life, and give myself a head-start with upping my energy and beating some of my cravings.

So, here are the things I’ve learned in my first two days here:

Breakfast of green juice and wheatgrass is actually quite filling! Beverley (Dr Bird, who runs the Raw Retreat) says this is because it has so much nutrition in it, your body doesn’t want more food.

I hold my stress in my lower back and shoulders. I was aching all day yesterday, but I’m feeling fine today!

Yoga is meant to be done daily (I’ve only become aware of this very recently (doh!), and I’ve had daily 1-1 yoga sessions since being here and it’s great).

Raw food is actually really lovely and tasty and can be quite varied, even within my restrictive parameters. Here’s what I’ve had so far:

When I get home, I need to stay in every morning, because the morning routine is super-important and sets you up for the day – and it’s also very time-consuming. So once Luca’s off to school I need to get cracking and get everything done before I can go out. I’ll go into what I need to do in a following post, just in case anyone’s interested.

And, leading on from that, I can stop feeling directionless, due to my lack of a career, because saving my life is now my new career! To borrow from Kris Carr, I am now CEO at Save My Ass Inc! And it’s the most important job I’ll ever have (after bringing up Luca).

So I want to thank you all again, because this retreat and these revelations wouldn’t have been possible without my Yes to Life fund, which you’ve all contributed to. It’s not cheap, but with the support of everyone, here I am! Amazing. I am so blessed. And Terry is off in a few days on his mammoth cycle ride, from the South of France to North Devon and back, and his JustGiving page has already nearly reached its target for me, so that’s amazing, too. That money will help me going forward, with any expensive treatments and supplements and food that I wouldn’t otherwise be able to afford.

Here’s a beautiful song that says it all.

I love you. Thank you xxx

Greetings from the cancer coalface

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Hi lovely friends,

How are you? I hope you’re all well and enjoying the spring. I’ve been keeping my head down recently – in reality, I’ve been feeling less than full-of-the-joys… After a few months of chemo (which doesn’t seem to have been working all that well anyway), I’m back at the horrible crossroads of making yet another decision I don’t want to face. Do I abandon the medicalised path and strike out into full-on detoxing and a super-strict diet, in a bid to possibly root out the causes of this disease, or do I go onto the next medical treatment, which has only just been made available in this country? I don’t want to look a gift horse in the mouth but – as with all the medicalised treatments – there’s no guarantee it’ll work, and for many it only works for a few months (although some have had very good results and for long periods). But it won’t ultimately cure me and it also involves monthly injections in the buttocks – ow!

The new treatment I’ve been offered is Ibrance (Palbociclib) in combination with Faslodex (Fulvestrant). You can read about it in full here, although the main point, for me, is this: “07. June 15: Further data from PALOMA-3 announced at ASCO15. In PALOMA-3, 521 pts who were treated with a combination of Ibrance and Faslodex (fulvestrant), saw median progression free survival (PFS) of 9.2 months compared to only 3.2 months for pts treated with Faslodex and a placebo. Pfizer said that this could be a “promising treatment option for women with HR+, HER2- metastatic breast cancer after progression on endocrine therapy.” Overall survival results were not yet available and the most common adverse events reported for the palbociclib-fulvestrant group were neutropenia, leukopenia, fatigue and nausea.”

Of course, this treatment is covered by my insurance, so I don’t have to worry about that, but if I choose the other path I’ll have to fund it myself – and in fact, if I decide to take the middle way and do both (if that’s really possible), I’ll still have to pay for all the supplements (which are never cheap) and organic food (you get through a lot when you’re juicing every day). Which is where we come to the other main reason for this blog post – my lovely friend Terry (husband to the wonderful Mandi Robins) is celebrating his 50th year with an incredible 1500 mile bike ride (with his friend Andy) from the South of France to North Devon and back, raising money for me! I’ve just set up the JustGiving page, so please hop over and have a read.

If I was going to start on the all-natural path (and believe me, it’s no easy option, which is why I’ve dithered at this crossroads for far too long), I want to start it off well, with all the support I can get. So I did some research into detox clinics, and the Rolls Royce of the lot is the Hippocrates Health Institute in Florida. This is where  Kris Carr went to learn how to live with her cancer, and I’ve been following her for years,  so that’s inspiring, and they claim to have really impressive results. But it’s also a 3-week course in Florida, costing around £6,000 without flights. Ouch. So then I looked closer to home and heard about a Glaswegian guy who’d gone to a place down in Cornwall called The Raw Retreat that sets you up on a similar track, but much quicker – you can do a 2-day intensive course, or a more leisurely 5-day detox, for nearer the £2,000 mark. And luckily, I just happen to have around £2,000 left in my fundraising pot from last year, so that would cover that, but then the pot would be empty – hence the renewed fundraising.

I’m so sorry to have my begging bowl out again, but if you do feel you can support me, I’d be so grateful – please support Terry and Andy on their bikathon. And any help with making this decision would be good, too – it’s a toughy, and I keep flip-flopping on it. I start with the juices and clean living, then I crave sugar (caused by the cancer wanting to feed on it) and caffeine (caused by the fatigue from the chemo) and fall off the wagon and beat myself up and it all looks a bit hopeless. But I have a really uncomfortable swollen liver at the moment (which is a very weird sensation) and I know I have to do something to change my situation… (And yes, Rob, I am considering cannabis – as I can’t drink, it would help soothe my rebellious side, if nothing else!).

Signing off for now – lots of love and thanks,

Gab xxx