What is it they say? If you want to make God laugh tell her your plans? Well, I hope someone up there is laughing because I certainly am not. I am fed up. Actually that’s F.E.D. U.P. with a good half a dozen exclamation marks for emphasis. (!!!!!!!!) For fear of seeming to contradict more upbeat and positive blogs that I have written in the past, it would be disingenuous of me not to express the flip side. Living with stage four cancer is not black and white, we cannot always be the noble and exceptional patient nor are we always self-pitying and woe-is-me. Life on this path is far more nuanced see-sawing somewhere between the two; there are sunny days and there are days when dark clouds glower ominously and oppressively. To sum up, I am fed up of being fed up. And I’d like a break please.
Having a moan and a whinge does not come without a sizable chunk of guilt. I know there are people out there who are enduring much worse circumstances than I. I know that I have a great deal about which to be grateful. But that little part of me that is feeling sorry for myself just wants to be seen and heard. She wants to jump up and down shouting “It’s not fair” “I want my life back” “I want to feel normal again”.
Normal – now what does that mean? I suppose to me, now, it means not having the state of your health on your mind, or at least lurking around the periphery 24/7. It means maintaining one’s independence, not having to rely on people in order to complete simple functions that you once took for granted. It means being able to make plans without first consulting the diary to see whether you are due to attend hospital appointments. Not wincing when others tell you of their plans for later in the year, and your mind finds itself begging the question, will I have the luxury of even being here later in the year? Simple stuff – driving, walking, breathing. It’d be nice to do those with ease again.
October was the last time I remember normal. I made a six hour journey by public transport to Devon to see my wonderful friends “the poncho fairies” where I was spoilt rotten, and we enjoyed mooching around Totnes, eating naughty cream teas (I’m told it’s the law in Devon!) and strolling on Dartmoor in search of cairns and ancient stones and piskies. Of the latter we did actually spy one.
That slice of heaven was followed by a spontaneous trip with my husband across the channel to Brittany in the van where we ended up at St Malo, an old corsair town. To walk around its ramparts, or explore inside the city walls feels like stepping back in time. However, the town itself was almost completely destroyed during the second world war but was painstakingly and lovingly rebuilt in its original style. We filled our bellies with mussels, chugged around the town on le petit train, marvelled at the beautiful light cast by the stained-glass window in the cathedral, and I even got to indulge my literary nerdiness and walk in the steps of Marie -Laure the young heroine of “All the Light We Cannot See” by Anthony Doerr, the best book I read all year.
From St Malo we headed south west towards Carnac, detouring briefly at Monteneuf where there are some truly spectacular huggable ancient stones, if that’s your thing. Carnac was impressive in a different way due to the sheer number of stones laid out, there are thousands. Like Stonehenge, the more sacred ones are cordoned off from the public, to the annoyance of many who believe that they belong to everyone, but most stones are quite happy to be photographed, kissed and hugged by anyone who has the urge.
We discovered a stone burial chamber – 5000 BC the Tumulus de Kercado incongruously tucked away behind a Franco-Indian restaurant in the middle of nowhere. It would be fair to say that both were interesting in their own way.
As I write about those times, I recall the joy, the delight of getting out and about, worries pushed to the back of my mind, and the sheer bliss of normality. On returning to England, and re-entering the routine of treatment in London, life took a little turn off course, and rather than being allowed to return home, I was admitted immediately via A and E to a ward where I was treated for an infection, (I had been hacking away in France but thought that I’d shake it off no problem, just like the good old days) and slightly more seriously to prevent sepsis, for which I was borderline.
About my stay, I will say that I had a great view of the London skyline for Guy Fawkes night. I also discovered the delights of Deliveroo for the very first time, who actually deliver to your ward. I was gobsmacked and impressed. Also hugely relieved that I didn’t have to endure anymore of the sinisterly glistening and unidentifiable substances served up to me on a plate embarrassingly described as “food”. Why, why is it, that the food served up to people when they are at their most physically vulnerable is of the lowest possible quality? They can attempt to fool and seduce you with glossy laminated menus, elaborately describing meals to tickle your palate and make your mouth water. But the reality is a huge and unhealthy disappointment. During a recent stay in hospital, I ordered fishfingers and chips. Please don’t have a go, my appetite was zero and I was losing weight so figured how can you go possibly go wrong with a childhood favourite? More fool me. When it arrived, in its tepid post-microwaved state, I was disturbed to discover that my meal was actually sweating.
Please can someone consider improving the food that we deliver to our sick, and remember that healthy nourishment is a priority.
I have digressed. Diverting my whinge into NHS meals. So, I was discharged from London, only to be readmitted a few days later nearer home. This time I barely bothered telling friends and family, I was getting bored of it, so I figured they would be too. It took longer than I would have liked to get my strength back, something which frustrates me like mad. Life is short and precious and I want to be up and running ASAP, not hobbling around all weak and feeble. At the end of November, I undertook my first major outing in a month and attended a charity function at the House of Commons. And following that my health seemed to find balance again and I enjoyed two whole weeks of near normal activity, slowly getting back to full strength. Walking in the woods, planning for Christmas and writing. And then my back went. I was under the bed at the time. On my belly waving my new sooper dooper, suck-up-everything-in sight- including-the-cats lightweight (Ha!) vacuum at some sinister and unidentifiable nasties that had been there since I don’t know when.
I had to wait until my husband was free to come and pull me out by my legs, at which point I discovered that I couldn’t stand, roll, sit, or really walk. I was completely buggered. Now I figured that this was an old war wound, one I’ve had almost thirty years since first becoming pregnant. Every now and then it flares up and I am reduced to crawling around, clinging to walls, and leaning on shopping trollies and umbrellas. Ordinarily I’d have dashed off to the nearest chiro/osteo practitioner and said “get me upright!” As I’d had to one panto recently with three shows to perform and no understudy (to give him his due, he succeeded.) But now, because the cancer has caused some fractures and weaknesses in my bones and spine, it is unlikely that many will touch me. Nor would I want them to. So it was a matter of fistfuls of paracetomol and waiting it out. When illness reduces you to being “cared for”, to being dependent, to being reliant, it fundamentally changes how you see yourself. What’s more it fundamentally changes how your partner or loved one sees you too. The nature of the relationship shifts, tilts out of balance. Your loss of power is reflected in the eyes of the one who is left to “care”; where I used to see partnership and mutuality I can now see worry, fear, exhaustion and helplessness. It is so important to hold onto memories of how it used to be and hold tight to the belief that it will be so again. This is one of my BIG fed ups. I am fed up of needing to be looked after, of not being able to fend for myself. I don’t want to lose myself to a new incarnation where I no longer have the strength or will to be who I want to be, to be who I am.
Sometimes it feels like you are trapped in a cage. If only you could find the door and step out to freedom and life as it was before. If only you could wake from the nightmare: dawn breaks and you realise that it was all just a bad dream. And life is wonderfully normal again. Yes, if only.
Early January and finally, after a Christmas where I did, by necessity absolutely nothing, my back was finally on the mend I was back to tentatively trotting about the woods and driving a little. Then came the incident of tripping over the washing. Apart from labour, I can honestly say that I have never felt pain like it. So once again, there I was, as helpless as a baby. X rays and MRIs mercifully showed that I hadn’t suffered a vertebral collapse which the team were concerned about what with everything else that is going on internally. Now some of you may be thinking that its great to be waited on hand and foot, I haven’t cooked a meal in months, or done the washing, or done any housework, or shopped. I’ve barely got off my backside to get myself a glass of water. But it isn’t. And if it wasn’t for Jez I’d have probably starved by now or been eaten by the cats.
I was back in hospital again for a few days the other week. Ridiculous temperature. 100 degrees, for about ten days. They never did really discover why. Me more fed up.
Jez has been making herbal compresses for my back out of the comfrey plant. He rubs it along my spine then trusses me up in clingfilm to marinade for a few hours. Amazingly it has been helping. So at last I had the temerity to think that a corner was being turned, a vision of normality was peeking over the horizon and I could banish the Me that was feeling sorry for herself; the Me that couldn’t see the point in anything; the Me that required “caring for”, the Me that was well and truly pi**ed off and fed up with it all. Oh but that would be far too rosy. How about a scenario where they discover a little abnormality concerning my heart and want to send me for further tests. Like it or not that is the hand dealt me this week. So treatment is on hold while the cause is determined. My poor beautiful tender heart. Where it all started back in 2016 when I had a cardiac tamponade. (Fluid in the pericardial lining prevents the heart from being able to work)
My heart, which has been broken both literally and metaphorically, how I send you love and healing. How well you are doing, and how grateful I am for each blessed beat. Thank you.
It is OK to feel fed I up. Though whether it is completely wise to express it quite so publically is another matter. But I maintain that this blog is about my musings, a desire to make sense of it all, and in many ways to reach out so that I am not alone on this journey, and maybe, I hope, neither are you. I look all around me to find inspiration: in nature, in books, TV, Film, other people, art, and one thing that always lifts me is you. If, by sharing a fragment of my story it helps just one person, it can completely transform my darkest mood. I see value and purpose and meaning all around. Although private by nature, I set myself the challenge of writing the blog to open myself to taking risks and living life a little differently than I previously had done. It is an unexpectedly cathartic process. But if there is one thing that it has taught me above all else is that we are not alone, and together we lift each other up.
Meanwhile, I do not accept this is my “new normal”. I look forward to better days, and looking Jez in the eye and seeing my husband, and seeing him looking back at his wife.