Sorry if that sounds awfully dramatic as a title, but it caught your attention, didn’t it? The truth is – I did come precariously close two weeks ago. I’ll tell you about it – pull up a chair. Pour a coffee.
You know I’m fond of any image in my blogging – yep, really. I like the rickety boat image best and my little boat for a while now has felt much less rickety. I could see the safety of the shore and I knew there were people there who cared and who wanted the best for me. Also, for a week or so, the waters seemed a little calmer. But best of all I became much more aware of the Presence in the boat with me. Such a comfort to have Jesus on board. How does He help? Well, it’s difficult to explain – but He’s just there and I know He suffered far more than I ever will and yet He lives. That alone is a great comfort. He really gets me.
I do also love another image I’ve blogged about – a rollercoaster ride. Gosh, cancer is certainly that. Wretched thing! Anyway, what happened two weeks ago is as though someone grabbed my not-so-rickety boat, stuck it on the fairground ride and then a gale came along and buffeted everything about! My boat was hurtling down on the worst type of scary ride – an almost vertical one – only I wasn’t aware somehow – when a fabulous Laboratory professional hit the brakes and halted the rapid descent, just before it crashed.
I’ve been on immunotherapy for six months and no progress has been seen. There was still a possibility that it might work, even though it looked as if the tumours were growing. They call this “pseudo progression” – essentially the immune cells created in your own body, stimulated by a drug called Pembrolizumab, surround the cancer cells, making them swell as they fight back and thus look on a scan like a bigger tumour. There is as yet no reliable test of determining if the progression is fake or real. Which is quite disconcerting. I was feeling fairly well throughout, once doses of the daily drug Lenvatinib had been stabilised. I had no cancer pains and was living reasonably normal. Then after a month the side effects kicked in with a vengeance. I seemed to get everything that was on the list. Dry mouth, loss of appetite, flaky, itchy skin….more and more……and exhaustion. To the point that some days it was really hard to get out of bed. My thyroid was battered so I now take Levothyroxine for an underactive thyroid gland. My blood pressure, which was generally quite low, went through the roof so I was on blood pressure tablets. (Hypothyroidism is permanent but blood pressure is fine now). Even so, I had lots of good days when I was able to function relatively normally – for a woman with cancer. I had enough energy to go out, walk short distances and enjoy time with family and friends. I organised drama evenings at our church for Holy Week and took part. I accepted that we had to give the immunotherapy the benefit of the doubt.
How useful hindsight is! The last six weeks were murder. The “side effects” increased and particularly the exhaustion. We had a holiday at Easter in Northumberland with our youngest son and family at Seahouses in a beautiful apartment with sea views. The weather wasn’t great, but we had good days and had time on the fabulous beaches there.
We visited Bamburgh Castle. Our little grandsons, nearly 6 and nearly 3, loved it, despite the rain. I loved it too, but it was so hard for me. Trying to walk dogs when you feel dreadful is very hard. Trying to smile through gritted teeth when you feel sick is nigh impossible. Our son could see it and he and his wife were brilliant. My aim had been to
establish more of a relationship with the little ones, as they live over in Manchester and we don’t get to see them as much we would like. We definitely achieved that. Especially with the nearly 3 year old, who we’ve seen the least of since his birth because of my illness. He and I became good buddies and he was there at my bedroom door every morning to say “Morning Grandma”, much to my great joy. So it wasn’t a total flop at all. And I got huge hugs from our son – he gives great hugs. And I learned more of my daughter-in-law’s passion for her career in science for Cancer Research.
However, I found it hard. Eating was a trial. Everything seemed to choke me. Smoothies became my saviour. The final day I felt quite well, however and we walked on the beach and I had a decent breakfast. I didn’t feel sick at all. But by the time we were back home in West Yorkshire, I had really gone downhill. I was so tired I could barely get out of the car. I felt terrible – sick, dizzy. My eldest daughter was waiting at home with her partner, who we were meeting for the first time, and had to help me into the house. I made up my mind then. Whatever the immunotherapy was doing, I was coming off at my next review. This wasn’t living. The cancer killers were killing me in the process – or so it seemed.
We then had two days at home and then four days away in Devon – Torquay – just the two of us. Our dogs stayed with a friend. The journey down was great. I stayed awake and I felt good on arrival. Our garden flat was beautiful – a short hilly walk from the harbour – and the weather forecast was excellent. We had Chicken Korma for dinner, a glass of wine
and a walk on the sea-front and I even walked back up the big hill to our flat (although I could hardly breathe at the top!). I was so unfit. Frustrating for a distance-walker. Next day we went to Dartmouth and sauntered round, buying pictures we had been looking for, enjoying the sunshine, buying lovely sandwiches which we ate in our garden back in Dartmouth. Then in the evening, we dined at a fabulous fish restaurant and I thoroughly enjoyed my fish medley. Clearly, I had turned a corner with the treatment.
Not so! The next day it all went pear-shaped. It started well with a hearty breakfast at a lovely café at the harbour, then the train to Exeter via that wonderful coastal route which is just delightful. Then on arrival, I felt every bit of my energy leave me. I love a cathedral and had been looking forward to Exeter. We spent 10 minutes there. We kept on – and a day at Babbacombe, sitting overlooking the bay, was very special. The very warm sun, a gentle breeze, an amazing view and lots to watch. Bliss!
Our journey home was uneventful and all was good, until we reached home. I felt so sick and tired, it was ridiculous. That was Friday. I slept 10 hours that night, unsurprisingly, but not at all refreshed by morning. The dogs came home, well walked and happy to see me and I them. Sunday was much better – so glad as it was our 8-yr-old granddaughter Bella’s birthday over in the High Peak in a beautiful pub garden and lots of the family were there. My new best friend, Alfie, hurtled down the slope to me, shouting “Grandma Bev!” and it really warmed my heart! Worth every second of being with him and even having to endure “Bluey” on repeat along with “Manic Mike” (not his name at all, but that’s what he looked like!) on TV YouTube every – single –day! I adore all these kids.
Next day, bright and early – by now very hard for me – I had a CT scan. This was the “last-chance-saloon” scan. If it showed more progression, the Immunotherapy was history. I’d more or less decided that these “side-effects” were not worth the poor life quality, even though my eldest sister was begging me to “think very hard” but she doesn’t have to (not) live with this, does she? I had blood tests the next day ready for imminent treatment on
Thursday which I attended at the wonderful Greenlea unit in Huddersfield - a real safe place for me and my cancer peers. My pre-treatment bloods all seemed good, though no cancer markers result as it seemed it hadn’t been asked for. So treatment went ahead. My review with Oncologist was the following week. Why, oh why, did I let treatment go ahead? I had said how I was feeling. But as hubby asked, “Did you really? Honestly? The severity” The signs were all typical of what others had experienced with these drugs, my nurse felt. Why, as hubby asked, did I not ask specifically, “But can we ring my consultant and ask if the scan results have been processed, because I am now convinced that cancer is eating me alive from the inside out and I’m so scared of that but can’t admit it otherwise it’ll come true and that will be the beginning of the end?”
Somehow, on Saturday, feeling like death, I was driven, by hubby to meet my three sisters for our regular catch-up meal in a lovely pub. I ate less than 20% - and I hate waste so that was a battle. Later my sisters told me I had looked so ill they were really worried. They hinted at their concern, quite strongly, but I brushed it off – treatment 2 days ago, so feeling that effect, I reasoned. Friends, special and wonderful were waiting for us on our return home. They can cope with me in any state and I love them for it. I slept heavy that night, woke groggily but looking forward to taking them to our super little church in Holmbridge. I knew they would love it. It took ages for me to dress. The plans for morning were totally disrupted as I was mightily sick – repeatedly – for half an hour. Tracey- thank God for her – stayed with me. I sipped water all morning and listened to her soothing voice reassuring me and bathing in the silence she gave me as I dozed. I love her.
Things become more of a blur from there. I couldn’t eat; or drink. I had little interest in anything and was utterly exhausted. I realised, at last, that I was very poorly. But I needed another blood test at the drop-in clinic ready for my consultant review on Wednesday. We’d planned to go Wednesday morning – results can be processed and with your Consultant in hours – but for some reason Tuesday was easier for us, even though I felt so ill. That decision saved my life. On the same day, at lunchtime, the phone rang announcing “Number Witheld” and I just knew it would be my consultant. It wasn’t – it was the Duty Consultant Oncologist at HRI. I was urged to go to hospital, straight to Cancer Ward, once a bed was arranged, which would be within hours. My consultant had received a “red alert” from the Lab at 11.30am and had acted on it immediately. My kidneys were “struggling”. What about my review with her? That wouldn’t be happening. I needed urgent treatment. I was very scared.
Cut to the chase – at last you say! By 10pm I was on the Ward, being assessed and shortly after midnight, I was hooked up to an Intravenous Fluid Drip, attached to 3% oxygen and an anti-sickness drip. The staff, every last one, during the whole stay, were nothing short of amazing. They work non-stop with such patience, compassion and competence. I immediately felt safe and in sure hands trusting them completely. There were other interventions, of course, dealing with various other symptoms and different treatments – lots. Tests aplenty until my hands and arms were going blue (no one hurt me – the bruising is inevitable, just not pretty). I had had an Acute Kidney Injury – AKI – used to be called Acute Renal Failure. It was Stage 3 and Stage 4 is probable Irreversible Kidney Damage or Death!!
Within 2 days, my kidneys were functioning normally. I had nearly died, largely a result of me trying to be brave and positive but not honest, to the utter extreme and my own detriment, but had been rescued in the nick of time. Despite hubby persistently (always glass half-empty) telling me I was getting worse. What did he know? It was my body – my experience. Annoyingly, I humbly (not easy for me) admit he was bang on the money. But my gradually, increasingly sick self had become my “new normal” and I had forgotten what it felt like to feel well. Any good day was a ‘turning point’ but actually turned me nowhere and was really giving me some brief respite from misery before plunging back to actual sickness.
As my consultant told me a week later, ‘bravery is vastly over-rated’. The blood test had shown my cancer markers had leapt from 11,000 to 17,000 in 7 weeks and the scan had shown significant progression. Crucially, the blood test had also shown creatinine (the stuff your kidneys are supposed to chuck out of your body in urine) had risen to a level that that suggested “Imminent threat to life” or something like that, and hence my consultant had been urgently alerted.
Thank God for that lab person – the speed of analysis – the response to bleeps – the amazing staff on the Cancer Ward. I was there 6 nights and was extremely well looked after. Oh, I also had 8 litres of fluid drained from my peritoneal cavity (not a cavity at all really; more like a large womb or bag encasing internal organs and keeping them cosy). This large ‘bag’ was thus very swollen and pushing into my lungs and the very organs it ought to be protecting. It had been so painful and I had put that down to not eating! I could only lie on my side for seconds in those last days at home. Those days when I lay, woke and told myself sleep was more important than getting a drink – it was so much effort to lift the glass. Telling John to just leave it, the review is Wednesday. The procedure to relieve the fluid build-up is very simple, painless, yet miraculous, all done by scan, a long needle and thin tube, for goodness sake (these doctors deserve their pay rise and some!). I had the discomfort of having a tube in situ for 4 days and it was worth every minute.
Where am I now, two weeks after the incident? Home, thankful, shaken and looking forward to starting another round of chemotherapy at the end of May. One of the drugs is new to my body, so hopefully, as my consultant says, will be more frightening to the cancer as it won’t recognise it. Who knew Cancer was so discerning and unwelcoming to the poison we give it? Thank God for a new drug - Caelyx.
Think though of the traditional Monopoly board. “Go” after 1 full circuit is your normal
health status. So you want to stay there, don’t you? In this version of the game, moving past Go means you’re losing health and only start regaining it really at Free Parking – when you’re 50% from normal. It feels like cancer has robbed me of my Go position. I have always been honest about that. I hovered between Old Kent Road and Fenchurch St station for 18 months, during first round of chemo and recovery and recurrence last year in September (4 months reprieve) but bviously never got back to Go.
I started the next game at Kings Cross after the second recurrence was diagnosed. Not well, but not suffering, treatable and excited by trying a new wonder drug tailored combination – Immunotherapy- shown to be successful in clinical trials for around 52% of “women like me”. Notoriously difficult to determine actual progression or regression of tumour growth, it works brilliantly for those 52%, many getting an NDE diagnosis (No Disease Evident) in under a year. Unfortunately, I was in the 48%. How would you have chosen? Maybe I should have recalled those same statistics and seen it as a bad omen? Given the same statistics and the same information – I think I would made the same decision. A slither of hope is better than none. And I love life and want a little bit more of it – please!!
All of this scared me. I had plunged to Marylebone Station in a few weeks, but I was convinced it was Kings Cross still. Marylebone became my new normality - the new Kings Cross. No better, but certainly no worse. In my mind I became convinced I was hovering around Kings Cross, moving a space every now and then as that ‘turn for the better’ occurred. But never far and I was hopeful, at least for 5 months that I would be at Go soon and collecting my NDE certificate. In reality, I know now, I had plunged to the Community Chest of Big Sickness but couldn’t recognise the place. I refused to look at it properly. Maybe it was The Angel Islington?
I have learned the hard way that positivity has to work hand in hand with Honesty – to yourself and your medical team. Honesty comes about only by listening to your body and really listening to the more objective, even if perceived as pessimistic, voices of those who love you and live alongside you. I refused to. So sorry, sweetheart.
I have made progress. I am, honestly, round about Whitehall. That might sound good. But the game has changed. I now have to complete a full circuit to Go to Win. It feels like a long, long way. It jolly well is! But I have great companions and I now trust them as much as me. Especially my long-suffering husband. We know I’m not really going to get to Go again, but Liverpool St might not be too unrealistic, if only temporarily. The further we get in this round of the game, the better the starting point for next time. We have six months for this Round. I think we might edge closer to Free Parking before Chemo but John will probably say Bow St is more realistic. It’s moving forward and he’s probably right – annoyingly!
This has been a long read – if it saves one life it will be worth the hundreds it bored to sleep!
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