My life has become a perpetual merry-go-round, it seems. I made a reference to a roller-coaster last time, and I now seem to have fallen off. So, what happened to the radiotherapy, you ask? Good question. My team reviewed my lung lesions for a third time and then came to the very unpalatable conclusion that in fact these lesions were now metastasis from my tumour, which in beginners lingo means the hateful, venomous pancreatic cancer cells have marched off during my ‘treatment holiday,’ and taken occupation up north. I thought being in lockdown was pretty safe, for travel was not permitted, but no-one was checking the Carcinoma Express which was still running – ahead of schedule. Consequently, radiotherapy has retreated to the wings. Talk about up-down-up-down. So, it’s a dismal and unhappy return to the chemotherapy suite this week, but I refuse to be beaten.
There was a time when things went downhill in short order. I won’t detail all of it here, but a few years ago I had an accident which ruined one of my fingers (not great for a classical musician) and then promptly discovered I had a large bone tumour. We experienced redundancy, I lost a healthy baby to intra-uterine pneumonia, suffered professional bullying in an unexpected arena and I recall then making a light-hearted remark that nothing else could hit me unless I were ‘to get a death sentence.’ But I was so wrong. On the back of yet another heinous chapter in my professional life, I then received the diagnosis of pancreatic cancer, my parents became seriously ill and both died in short order. Of course, I didn’t coral these thoughts together instantaneously, but it did occur to me in retrospect that as a person normally robust and up for any challenge, one must ask how much a human being is expected to deal with, to take on the chin and to keep bouncing back? I am renowned for my joie-de-vivre but think I have truly suffered enough. I would like a few more good times!
I think fondly of the classic film, ‘It’s a Wonderful Life,’ (1946), based on a short story called, ‘The Greatest Gift.’ The film stars James Stewart, who feels – through circumstances beyond his control – that his life has hit rock bottom. He decides that his life is no longer worth living, and then an Angel (Henry Travers) comes down, in a very enigmatic human persona, and shows him the impact his departure will have – on his friends, his family and his children. The world is infinitely better with him still part of it, despite any human failings and faults he may have. It may be a Hollywood fiction, but it resonates with every one of us, and most likely the reason it is screened annually, to our delight. I cannot imagine what the world will be like for MY little children with my unintentional premature departure, and this is the pressing reason I am endeavoring to stay with them. I am not perfect, but then – who is?! Being a parent is a difficult job, but I love them so very much and want to be with them for many more steps of their journeys.
I haven’t been resting on my laurels to date, already taking a huge number of verified supplements, but I’ve now had to up the ante and take on further treatments. I am in discussions with a reputed medical scientist about adopting other complimentary strategies. I spend enormous amounts of time researching, and analysing data and alternative therapies because, although Big Pharma would like me just to consume their toxic therapies, often this is not enough, especially as my standard care team are not interested in anything out of the ordinary. The chemotherapy agents are so toxic, that treatment often fails because of acquired and debilitating neuropathy and toxicity, and rates for overall survival are very low.
When I read the stories of survivors of pancreatic cancer – maybe 2 years, maybe 10 – I find they’ve all been doing something a little bit unorthodox. They’ve been having alternative chemo regimes, consuming wheatgrass [Surviving the Death Sentence, Traysiah Spring], they’ve been doing offline, off-label medications, all with evidence they can make a difference [How to starve your cancer, Jane McClelland], they’ve been dabbling with plants, consuming vegetable drinks, adopting a pescatarian diet. There is an example of a man, literally at death’s door, who turned his life round at the last minute and is still here today, 7 years later. [Wallace Rose]
In the USA, most hospitals have an Integrative Care Department, which rolls lots of these therapies together, but these don’t exist here in the UK. Our physicians, including GPs, stick rigidly to conventional methods which – in my case – will not be curative and may not add quality to my life. For immune, and integrative support, you are on your own. There is lots of research and scientific papers are out there, published by NCBI, BMJ and others. I’m happy to share these with anyone if you are in touch with me through the Weekly, who will pass your message on.
Now I’ve been advised to give up red meat, so this is something that I’ve taken to heart. In fact, I never eat it – so that’s going to be easy. I am told to stay off dairy, but I don’t eat much anyway. As for the vice of sugar, that’s something I gave up early on this journey, which was quite hard, as it was my one sin. I remember writing, ‘why would I want to feed my cancer glucose, glycogen and raw sugars, when all it’s doing is feeding this ugly mutation of cancer cells?’ The downside of that is that if you deprive the cancer cells of those fuels, they re-group and find an alternative way of getting energy. They really do!
It’s unsustainable for me to walk past W H Smiths, and even look at a Cadbury’s Twirl- it does not make me want to dance; to look at a Curly Wurly – it puts me in a spin; to eat a Marathon – makes me feel I need to run one. My tumour seems to be spreading its poison regardless of my habits, so I’m getting really miffed. It needs to be hit hard with everything at my disposal.
Strength of mind, positivity, well-being, these are further attributes which evidently make a difference and most of those I have by the bucket load.
I remarked recently I would probably drink drain cleaner if it would help, but mercifully, there’s no evidence for that!! I’m not altogether sure I’m ready to convert myself to eating a diet of wheatgrass, no matter how good the reviews, but I am looking into it. I mentioned once before that I really need to exercise more – it’s something I’m deplorable at, which is shocking, given I used to be able to run 1-2 miles in a very impressive time. (Army Days, if you’ve read my online blog) Now my exercise may consist of running a bath for the children. I jest, obviously, but whatever I do is plainly not good enough. Since lockdown I take a walk, several times a week, lasting at least an hour in the evening and keeping up a good pace. I probably need a running machine or an adult hamster wheel. Or a running mate. Be in touch, any sympathetic power walkers.
Sometimes you meet a fellow pavement walker who regards you as the Corona Crusader, and they then stride purposefully into the middle of the street with oncoming cars to avoid you, in case you should purposefully cough as they saunter past. This is unsustainable moving forwards, even if the world has changed, because we need to regain a sense of normality. Let’s assume we’ve all been exposed to it and we are going to be stronger and more resilient. One cannot travel through an airport or a railway station, or be on a plane or train, and still observe ridiculous social distancing. Masks- maybe, metres – no. It’s a balance or risk versus reason. We are on a provisional route map to lift the deadlock of social lockdown, but it is still going to be a long haul.
Coincidentally I believe I had a mild viral load of Covid-19 myself, many weeks back, which I reported to my consultant. I didn’t have the classic symptoms, but I did have some very worrying new ones which put the fear of the almighty into me. They included (in my case at least) persistent unusual headache, lasting over a week, throat issues, clammy cold sweats which were totally out of keeping, (and thank you very much, nothing to do with my age!) For me, the worst thing was that my shoulder sockets felt like they had been filled with ready-mix concrete, to the extent I couldn’t pick my limbs up at all. [severe arthralgia]. These were all documented in the checklist sent from Wuhan to the WHO. I was self-isolating anyhow because of my cancer, but had never been so spooked in ages, well at least not until I then got my scan results back, prompting another month of (non treatment) purgatory, and propelling me into a bottomless pit.
Now I also have to re-plan my onward journey, with strategies new and diverse. All the afore-mentioned tricks and treats earlier on the page will need to come into play, for failing is NOT an option. I have b’H many children, and for them to have me around for a year or two more, is something I need to aim for. I realise that my 3 little girls will probably likely reach high school without having a mother to attend parents night, train their choirs or celebrate their prize-givings or graduations. I do not cry that I will not reach old age, indeed I didn’t when they told me I would die early, for we will all certainly die. I just didn’t predict a sudden downturn like the one I have just been dealt, and not when I feel so healthy. I have beaten the odds this far, and I have recently added 3 major league players into my survival kit, all of which will be continued p”G, through your incredible donations on the funding page.
I know some readers may have already helped, and I am extremely indebted to all those who have donated, helped with medication provision, and given sound medical advice in all quarters. Big ticket cancer-bashing therapies however come at a significant cost, exactly because they are not mainstream and not funded, and it’s absolutely excruciating to ask for help. With medical bills of around £1200 a week it is a massive undertaking. They don’t come with a money-back guarantee either, but I am committing to doing them: what choice do I have??
The last few weeks have forced me to realise that this gargantuan battle for my survival needs perhaps a generous donor or group of sponsors who between them might cover the costs of treatment for perhaps a week, or a month. Can we Divide and Conquer? Will you help? You might regard it like sponsoring a brick in a new building, where each ‘brick’ may represent a building block in my life. You would be giving ME – The Greatest Gift.
Thank you once again for your support
To support Jacqueline in this journey, please visit the GoFundMe page: