Hilary Murray's Blog

…but at last I have enough oomph to put fingers to keyboard.
 
Life has been hard these past weeks and with no energy or enthusiasm and even less of an appetite the weight has fallen off me. Constantly trying to tempt me with delicious morsels of food Jas describes me as a bag of bones, something that any other time would have thrilled me. But the truth is I've lost a total of some fifteen kilo's (or thirty-three pounds) over the past year. None of it deliberately. Worse,  my hair is growing back with chemo curls! I can't believe it! All my life I've had perfectly straight, baby-fine hair. Now, with a mind of it's own, it's as wiry as a spoodle's and that's going to take a lot of getting used to.

Radiation ended up being very debilitating, so that by the end of the twenty-five blasts it had become a real effort, both physically and mentally, to keep on going. In fact if it hadn’t been for the Cancer Society’s volunteer drivers collecting me from the doorstep each day it would have been all too easy to make an excuse not to go at all.
 
Then, just ten days after celebrating the final blast I was hospitalised with internal bleeding, something I had inadvertently caused by putting too much over-the-counter ibuprofen into an already weakened stomach. Units of blood coupled with something to stop the bleeding and gallons of saline were pumped into me that night and over the next two days. But even then my troubles weren’t over, and just this week saw me hospitalised yet again with chronic pain in the lower half of my gut. This time though I was allowed home after twenty-four hours along with a course of antibiotics and the joy of more investigations to come – and I’ll leave it to your imagination as to exactly where those investigations are to probe! But no matter what the latest scan implies, I do not have cancer anywhere other than my pancreas. On this I am certain. Or to put it another way, I have stomped my foot and that's thats. So there!

...just another 20 to go!

Having to be there every day, I feel like I'm becoming a fixture at Auckland Hospital. All I need now is one of those official tags the staff wear around their necks or clipped to a waistband. Not that I go unrecognised as it is, with the blue hair and glasses, full make up and jewellery. Well, you have to make an effort!

So far radiation isn't anywhere near as bad as chemo. Yes, I'm tired and still suffer with nausea, though now with the occasional vomiting, something I didn't have to deal with before. But as far as quality of life goes, give me this rather than the cocktail of toxic chemicals we pumped into my body first time around.

I've made another change too, recently transferring to a GP in a holistic practice. Convinced my cancer came into existence through the poor performance of my own immune system, I wanted to know what bits of me might be quietly failing, and what could be done to reverse the process.  (Strange how we think nothing of ensuring our cars and homes are running in optimum condition, yet fail to give our own bodies the same attention.) Anyway, a barrage of blood tests, some nineteen or so in all, found that while overall I'm not in too bad a condition there were a few little intakes of breath and pursing of lips as we went through the results. So in addition to everything else I'm now taking daily supplements to bring about a 'rebalancing'. On the other hand I'm still behind the eight ball when I comes to diet. I'm not juicing as much as I should - well, not the green stuff anyway! I'm far better with fruit, and thanks to Beth and the delicious oranges she grows in her garden I enjoy a large glass of freshly squeezed Vitamin C most days. I'm also good with berries and rhubarb, especially in crumbles and topped with vanilla bean ice-cream! So, with bouts of nausea and an appetite that comes and goes I'm subscribing to the principle of eating small amounts of whatever I fancy. Now, where did I put that Lindt chocolate?

After the unwelcome news that three months of chemotherapy had failed to shrink the tumour in my pancreas, and  then being referred to a hospice for a follow-up call to discuss palliative care, perhaps understandably my mood went down faster than a broken lift. That was when Jas made the spur-of-the-moment decision to whisk me off for four days at the Versace Palazzo on Australia’s Gold Coast. Oh, he knows me well!! I even coped with having only a day or two to shop for suitable attire. But that wasn’t all. Working on the principal the weather would be  hot and sunny and that no one would know me anyway, I decided to leave my hats and scarves at home and embrace the minimalist hair look. Our lovely suite, the gorgeous food, fabulous spa treatments and late night liqueurs in the bar listening to the piano player made it the perfect break and a wonderful - and much needed - pick-me-up.
 
But that wasn’t the crazy week. No, it was last week. Back at the hospital on Monday for an appointment with Haematology (to ensure I was still giving myself daily injections of blood thinners to minimalise the chance of unwanted clotting) the doctor was surprised at how well I looked. And who wouldn’t after the above long weekend? The following day I had a meeting with Radiation Oncology to discuss whether or not that treatment might be an option, and once again my overall appearance was commented on with the result that it was decided to move ahead at full speed. That meant back to the hospital the following day for a CAT sim and tattoos to ensure the beam is precisely lined up for each of the twenty seven blasts. Yes, real tattoos! I had this idea they’d mark the positions on my skin with a biro, but no! It was a needle and ink. Not that you’d notice the dots as they’re tiny. Then, forty-eight hours later I was back there again, this time for a CAT scan. Lastly, there’s an MRI scan in two days’ time, and then with all that information they should know exactly where to point the high energy waves and where not to, given the close proximity of a few important organs – like my lungs and heart. Fingers crossed!
 
And the really good news? Friday’s scan showed that while the tumour has continued to grow, the rate was nowhere near as fast as before. In fact, since the last scan five weeks ago it was really only a tad larger and a measly one millimetre at one point. So what has bought about this slowing down? Could it be the medicinal cannabis oil? Or the turmeric? Or the copious amounts of broccoli I’m eating? Or does it have anything to do with getting my old self back after stopping chemo?
 
Either way, I’m celebrating!

I tend to avoid updating my blog when things get too much for me. And they do, regardless how positive I might seem most of the time. Often it's the little things, like no longer being able to tolerate coffee. Other times it's the larger issues drowning me in doom and gloom. These last weeks though have been low point after low point, starting with the news the chemo regime had failed to prevent the tumour from growing and ending with the call from the hospice I've been referred to for palliative care.
 
Suddenly the one thing I’d chosen not to dwell on since receiving the terrible diagnosis was centre stage.
 
I don’t want to die, of course I don’t. And yet we all do, and usually without any advanced warning as to when, where or how. It’s a blissful ignorance, believe me.
 
Like most of us, I blithely thought I would stagger into a disreputable old age, hand in hand with the man I’ve loved these past thirty or so years. After all, my mother was eighty at the time of her death and her mother in her nineties. Instead, it appears that unless we can find a way to stop this tumour in its tracks, at some time in the not too distant future the discomfort I’m already enduring will become outright pain and fatigue until I’m finally allowed to drift off in a haze of morphine into whatever might await me on the other side. And when that happens Jas will be left to pick up the shattered pieces of his life. Even thinking about what he will go through during those weeks and months tears me apart.
 
But I’m not done yet. Not by a long way. There is so much I want to live for and so much I want to be a part of. Like seeing the grandchildren growing up and achieving things I couldn’t even imagine right now. But more than that, I’m not ready to give up on our future; Jas’s and mine. So I’m grasping the next lifeline; a meeting next week with a different oncology team to see if I’m a suitable candidate for radiation, something that was originally considered a less attractive option given the close proximity of other vital organs to the tumour.

Back in March the deal was three to four months of what turned out to be a very debilitating chemo regime in the hope of shrinking the tumour in my pancreas. Then it would be surgically removed. Well, that idea was knocked out of the ball park today. Not only has the tumour not got any smaller, it has actually increased in size. So, take that chemotherapy!
 
With that option gone, now what?
 
Well, there is the possibility of joining a clinical trial, if one is available. It’s being looked into as I write. And the sample of tumour taken way back in February will be tested to see if the rogue cells might respond to a form of immunotherapy, though we were advised the success rate for this is as low as just 5%.
 
So at the moment my survival is down to medicinal cannabis, diet, and exercise. But let’s be positive. The tumour is still a primary cancer, i.e. one which has not spread to other areas of my body. So as far as I’m concerned until that happens we’re in with a chance. And looking on the bright side, no more chemo means my hair, eyebrows and lashes will soon grow back. On top of that, I should become less forgetful, not to mention a little more active.

The down side is of course that there will be no more being waited on hand and foot by Jas.

​But then I guess you can’t have everything!

So here I am, back in the Day-care Ward on a lovely bright and crisp Auckland afternoon, having my fortnightly, seven-hour infusion of PexG. Have I missed this place these last three weeks? Not one bit. Nor have I missed the wooziness, the sick feeling in my stomach, the horrible metallic taste in my mouth, and having to pee into a jug in order to measure how much of the four litres of fluid going in right now is also coming out again! But the good news is that coming off a break I’m a little stronger. Plus a number of other side-effects, like the burning sensation in my finger-tips­ and the skin on the pads of my thumbs peeling off, have disappeared altogether. I guess they’ll all reappear any day now.
 
Yesterday we met with the oncologist and discussed the results of my most recent blood tests. All good but even better, the tumour marker reading was down a little. Any amount of ‘down’ is good as far as I’m concerned!  And while it’s only an indication of what the tumour might be up to, and we can’t get too excited, it does imply the tumour might be a little less active. Hopefully it’s suffering the mother of all hangovers, a fitting punishment for having invaded my pancreas to party hard these last months! Even more interesting, the result comes during a chemo holiday – and nearly four weeks after starting medical cannabis oil.
 
Friday 6 July will be the big day though as that’s when I’m having the all-important, mid regime cat-scan. Giving a truer picture of the current size/position of the tumour, will we be celebrating afterwards or commiserating? At this stage I have no idea. But if the tumour has reacted to treatment, then we have another decision to make. From the beginning the aim was to shrink the tumour and then take it out. But that requires a major operation and could include removing not only half my pancreas but more likely part of my small intestine and stomach, possibly leaving me with digestive difficulties or even a diabetic. Worse, while this surgery offers a longer lifespan than I would otherwise have, there is still a finite point. And this is where medicinal cannabis oil comes in, for if it turns out to be the wonder drug some say it is and can decrease or even kill off a tumour, then surely it would be better to hold off on cutting me open and give the oil a chance?
 
The jury is out for now.

Coming down with unbelievable fatigue these past weeks means I've had little energy or enthusiasm for anything other than waking, eating and sleeping. Nor does it help that getting out and about is an effort  without Jas at my side, while at times my brain has become so fogged I've lost my way in even the most undemanding conversations. And as for writing, that’s certainly in the too-hard-basket for now. So having discussed things with my oncologist, including the far more worrying issue of my now skinny legs no longer willing to carry my weight for any length of time, it was decided a fourteen day break from the daily chemo drug regime might be in order to regain a little strength and with that, a quality of life.
 
So halfway into my ‘vacation’ where are we at right now? Well, my mood has lifted, my concentration has improved, the nausea has subsided and the burning sensation in my fingertips (temporary nerve damage) has eased, meaning I can once again open containers and do up zips. Small things but such a relief.
 
Meanwhile the latest blood tests appear to show the unwanted tumour in my pancreas is no bigger or smaller than when we started out. So it’s still inoperable. Not good. On the other hand, and with the surgeon’s latest opinion that to all intents and purposes I’m now ‘terminal’ written up on my medical records at last I have legal access to cannabis oil.
 
A Class B drug in NZ, only patients with less than twelve months to live can be prescribed it and while it remains a contentious issue only one doctor here in Auckland (as far as I know) is willing to come out and do that. Even so, two weeks ago when we went for a consultation I had to sign a document acknowledging a lack of solid evidence that cannabis oil can cure or treat anything at all.  Nor is the oil from Canadian company Tilray Ltd, imported into NZ and held under lock and key, funded by the government. Rather, each 25ml bottle will be adding NZ$560 (some GBP290) every three to four weeks to our credit card. But with reducing the size/aggressiveness of cancer tumours on the list of things cannabis oil might have the capability of doing, well hey I’m more than willing to give it a go. And running it alongside my chemo regime, the hope it might also help reduce some of those otherwise debilitating side effects seems a win-win all round to me.
 
 

What could be worse than chemo brain fog for someone who likes to jot down a word or two, or complete tough number puzzles! Oh yes, having no hair is up there. So, let’s start with that one. Losing the hair on your head to chemo isn’t pretty – at least it wasn’t for me. After a gradual shedding the remaining strands clumped into matted fur balls rather like something the cat might vomit up. So out came the scissors and with me looking like a parrot that has pulled out most of its feathers, Jas moved on to the electric clippers to try and bring some semblance of style to the few sparse wisps left. I’ve also had to come to terms with the fact it will be post surgery and a second round of chemo before I see any regrowth – a stage apparently known as mouse fur in my new world - so roll on Christmas.
 
As said previously, changing my chemo-regime to PEXG (a combination of four drugs) has given me some relief from the side-effects that saw me hospitalised twice under the Folfirinox combination. On the down side, there’s no respite to my system, with two pink pills to be taken every morning and evening on a full stomach and with a large glass of water. Then as before, every second Wednesday it’s back to hospital for the big blast. Nausea and fatigue are constants and fluctuate daily, though thankfully not on the scale before, and only once this week have I spent most of the day in bed and ready to chuck in the towel given the combination of other side-effects. After all, why put myself through this when statistically all I’m doing is buying a few years? Years I would have had anyway, even if we hadn’t found this blasted tumour. And years I’ve been told to expect may involve another drug regime should the surgery to remove the cancer also require the removal of other areas of my upper gastro-intestinal tract. But thanks to a very determined Jas and Beth and their ‘bullying’ tactics we got through the low point and after that, and despite a diminshed blood count, elevated liver markers and suck-the-life-out-of-you day-time television, things became more bearable.
 
So, what is a good day for me? A day when I manage to make the bed, AND put on a wash, AND maybe do a little tidying up. Having so little energy my weight-loss appears to have stabilised and at some thirteen kilos or twenty-eight odd pounds below what it was last year when we made the trip back to the UK, I can’t be unhappy with that.

Barely making it to the end of my first infusion of chemotherapy thanks to a severe reaction to one of the drugs in the chemo cocktail, I spent that night and much of the following day in hospital. In fact, for the entire fortnight I was barely able to function, with a second trip to hospital, constant and debilitating nausea and the worst brain fog ever. Then on day 13, just in time for Jas’s birthday last Tuesday, I found both my feet and enough energy to join him for a glorious afternoon in a spa having pampering treatments and a blissful hot rocks massage (me) and deep tissue massage (Jas) to help us both relax, and for me specifically to prepare for the cycle of chemo due the following day.
 
My revised chemo regime is one down on the scale. Still specific for pancreatic cancer, but not as ‘toxic’, and while the nausea/sickness is still very much in evidence, it's more manageable. That’s the good bit. The bad bit is I'm feeling the cold - even when it's warm outside - and worse, my hair has finally given up and I’m seeing more and more strands in the shower and on my clothes. It’s all pretty miserable. I’ll be sorting out a wig next week, (thanks to a govt. grant) and meanwhile I’m going to get a little creative at scarf tying. Hmm. Could be interesting!
 
I wish I had something more uplifting to report. I have blood tests every week, with the next one including the protein marker showing the activity of the cancerous cells. We need the ‘number’ to reduce, meaning the cells are no longer as productive. I’m sure I’ve oversimplified it, but with everything else so very unknown it’s the one little hope I can grab a hold of in this world of uncertainty. That is until the CAT scan in June. Then all will be revealed, and we'll know whether I'm in a good place for an operation.
 
Meanwhile, and with all the advice on using ginger as a natural remedy for nausea I’m thinking of taking out shares in Bundaberg Ginger Beer, my go-to drink! Then there’s the dark chocolate coated glacè ginger Jas has been buying me from the supermarket and the ginger biscotti he’s making me – and for a plumber he does make the very best biscotti!

Starting to rattle from all the drugs I'm being give to combat side effects, if anyone has any other  natural remedies to share it would be very much appreciated.

Celebrating what might be the last 'normal' photo of me for a while!

The operation to insert the portacath through which the chemotherapy cocktail will be injected into a vein in my chest, scheduled for last Thursday, was cancelled at the last minute. Literally! Gowned up and prepped I was just about to go to theatre when a far more urgent case arrived. And so, reprieved for the weekend I was sent home. Yesterday the implant went ahead and today, a little tired as well as a touch battered and bruised, I'm back at the hospital for last minute checks and a 'walk around' of what to expect for my first session of chemo tomorrow.

Feeling a range of emotions, but mainly the desire to get on and do this thing. This tumour has to shrink away from the blood vessels and duct if there's to be any chance of removing it. But that would mean taking out other bits and pieces too, such as parts of the pancreas and small intestine, and perhaps a chunk of my stomach. Even then the cancerous cells may return.

So here's hoping for the best outcome. That over the next three months we blast it to death and kill it off completely. And given the toll this is taking on those closest to me, those I love so very much, the sooner this happens the better.