The last week, if I am honest has been the hardest yet on this journey and for the first time I feel I can’t see a straightforward direction. I’m not sure there even is one. But really hope there is,
It’s not that I don’t want to carrry – on, far from it – I feel I have too much to give to have life taken away from me so quickly now, but at the same time I cam feel it slipping.
I’m in constant pain now from all angles and try as they might the team on the ward can’t combat it effectively so don’t I know what comes next – hopefully not more of the same.
With it comes ramped anxiety and a huge dose of primeval fear. / No-one has the ability (nor do I expect them to) to predict the future but it still breaks my heart.
We had bitten the bullet and driven down to Dorset for a long overdue catch up with family. It’s a three hundred mile drive so we we were a bit nervous making the journey but we got there in one piece.
The problem was for me that getting there took most of what I had left in the tank. I was completeletly spent and couldn’t really get out of bed. I was gutted . We had so many little things that I wanted to do whilst we were down there. I did manage to stand on my cove stone though which was emotional and powerful in equal measure. I did bash my knee though!
After a couple of days, including one where I didn’t get out of bed at all we spoke to the hospital who confirmed we needed to get back onto the ward so we did a U-turn an legged it back to (not so sunny) Manchester and the waiting team.
My liver is inflamed, lots of pain in that area which is uncomfortable and unnerving. It’s right under my ribs and is causing breathing restrictions – all rather unpleasant and a bit scary.
Morphine in the form of an automateted syringe driver and supplementary oramorph is keeping everything under control for now though so I’m comfortable if a little spaced out. I expect to be in here till Monday or Tuesday – we shall see. Fundamentally though it needs to be about feeling better rather that running away and at the moment I don’t yet feel better so I’m happy to stay here until I do. The biryanis are very tasty in the meantime which is helping and I don’t have a temperature either which helps. England’s rugby performance is woeful though. Cannot have everything!
It is sixty days since my last admission to the ward. Not a bad innings but over the past week I’d been feeling increasingly poorly and this led to some pretty debilitating nausea and sickness. Add to that a skyrocketing temperature and it was time again to ring the hotline who advised we make a beeline for the hospital.
The general consensus is that my ‘levels’ are off – most likely due to a combination of treatment and reduced immunity. Suffice to say I feel pretty rubbish! I’m hoping that a couple of days in here will knock it on the head and we can focus on getting back on track. This does mean a break in treatment though which if I’m honest I’m looking forward to – its been over three months already. time flies, whether you are having fun or not it seems.
I’m down for a full comparison scan later this afternoon which has been brought forward from early March – fingers crossed for some good news on that front.
Over the last few days I’ve learnt the hard way about the importance of a concept called polypharmacy. This is a relatively new one on me but is the science of treating one set of side effects with another drug in the hope that you can find an equilibrium (ideally with no side effects but I don’t think this is easy!).
This last week has been made doubly harder by getting a cold (it was inevitable) in the same week as treatment. This means my IVs this week have hit like a sledgehammer and I spent all day Friday and most of Sunday in bed. Partly caused by my over enthusiasm to get out on the bike perhaps?? NO comment.
Whilst we were on the ward (the team were all on their usual form and it was good to see everyone) we ran through the current drugs list and it was suggested I drop the Omeprazole which is an anti sickness / stomach protecting drug which was meant to counter the Dex. Given I’m not currently on Dex, we all thought this would be sensible.
By Thursday morning I was retching really badly and it took another 24 hours to realise that it was the lack of Omeprazole, unfortunately by this time I was not eating and was sick for the first time since this all kicked off – frightening experience. Taking one has calmed the symptoms and we can only assume that it is one of the other drugs causing inflammation / nausea. Polypharmacy at work.
There are a load of other interactions that you realise you need in this ongoing challenge beyond the headline treatment drugs. Blood thinners to counter the chemo (which thickens – not good with a DVT on board), antibiotics to counter the rash caused by the immunotherapy (and steroid cream), anti-inflammatories to keep the liver in check whilst the PAC-Men do their work band the Magnesium to counter the fact that the treatment causes you to lose that in double quick time. The list is seemingly endless. I admire the team and the pharmacists for keeping track. I have the easy job, ticking them off each day. I trust they have a spreadsheet for this little lot! (I would – but I love a spreadsheet).
I just hope this cold passes as it is exhausting fighting two things at once.
Today marked delivery of my fourth immunotherapy cycle (and another magnesium booster) but confusingly cycle 2 for the team as they work in 4 week blocks not fortnights – all very confusing. Something in the mix has this evening resulted in wild leg spasms and total insomnia which has given me the chance to catch up on scanning some of my sketches and artwork on my spangly A3 scanner and to contemplate the day which I thought I would share.
Christie days tend to be long ones, but the addition of Dexamethasone always helps – this is a steroid that thankfully I’m not on everyday anymore. An essential component alongside a healthy dose of Piriton to limit the allergic reactions (rashing / soreness and possible flip outs) to the main course of CETOXimab (link for the brave readers) which is the key component of my treatment. This clever stuff takes a couple of hours to soak in but thankfully doesn’t have the same immediate effects of the other stuff (shivers, twitches and the numbness thankfully). We had a minor hiccup getting into my reluctant wiring but success on the second go meant we were underway in good time.
Then came the moment to gear up for the now inevitable six hour infusion of magnesium. It cannot be administered any quicker without risking heart issues alas – and we all know how I feel about those. This got me thinking where do you actually get magnesium from in the first place? (especially on a zero fibre diet?).
Magnesium is actually a highly abundant element both on land and in the sea – who’d have thought it – 13% of the total mass of the planet. Unfortunately for me, it is also highly abundant in the human body (11th most abundant element) and essential for a variety of functions, including it seems limiting ‘over excitation’ and ‘muscle spasm’. Hence the need for the big bag of goodness today – my levels are very, very low due to the treatment. Incidentally, I love the fact that Magnesium is ejected by exploding stars. Perhaps some of that space magnesium ends up in my body? A reassuring ‘from space dust to space dust’ analogy.
The major frustration (one of many…) is that good old Mg is normally absorbed through nuts, spinach and other leafy green vegetables, avocado, oats, bran and beans. None of which I can currently eat! The good news is that Halibut is full of it – and I love a good bit of Halibut (Life of Brian reference there!). So guess what’s on the menu this week. Hopefully no stonings though.
So, back to the ward, as everyone else gradually finished their treatments (including super Herzl although I didn’t get to say hi, and brain tumour Gary who has the stamina of an ox and a resilience I can only be in awe of) I was eventually last on the ward which meant only one thing – DJ time. I still have a loose fit plan to play a live online DJ set at some point, a very postponed christmas idea, I just need a hand working out how to set up the router – if anyone can help with this please do let me know. I practised the playlist a bit which helped the time fly by for a change.
After a lot of thumb twiddling the big bag of Mg eventually finished and we got to come home just after 21:00, but now I find myself at 3:38 tapping away aimlessly, not tired and wondering what there is to eat. I hope to be able to better manage this lack of sleep moving forward – I feel like a zombie in the mornings. Anyway, enough rambling from me. The blood work looked promising, my consultant and his team were all positive and it seems we are at last heading in the right direction (bar the magnesium elephant in the room) – for that I am truly thankful. Oh and little to no pain. Onto the next cycle! Thanks for humouring a sleepless night owl. Now what’s lurking in the fridge….
I long to stand upon my rock and gaze far out to sea, to daydream of the future and feel once more – me.
Since this experience started one of the biggest challenges for me has been attempting to ‘escape’ if only to just give myself time to relax before jumping back in to continue the fight.
There have been breakthrough moments though. Whilst on the ward I was lucky enough to work with a complimentary therapist who was able to provide a foot massage and accompanying relaxation therapy that allowed me to visualise an escape and to describe a happy place.
For me that happy place was very specific. A white rock just on the low tide shore line about half way along the beach in Lulworth Cove, Dorset. I have stood on this rock and gazed out to sea and it brings me peace for so many reasons.
Being able to visualise this place, this experience and to almost smell the sea and feel the gentle lapping of waves on my feet has been so reassuring and I’m glad I can go there in my mind whenever I need to.
We went for our monthly spa day yesterday and I had an amazing leg and foot massage. My legs especially are very sore at the moment from treatment and the spasms I seem to get. I was able to enjoy this whilst being stood on my rock, looking out to sea and it made me feel alive. As well as preciously relaxed.
As spring sits tantalisingly around the corner we hope to be able to get down to this little corner of the country and I will make a beeline for my rock to feel the sea between my toes. I can’t wait.
Just a brief update. After the recent dizzy spells I was in for an MRI to check my head and brain. I was really nervous about it so it was great news to hear today that it was ‘unremarkable’. (I already knew that – after all I draw for a living!) but apparently this is medspeak for ‘clear’!
In a world of recent challenges this is a real weight off my mind – so we can really focus on cycle three of immuno (cycle six overall) which went smoothly yesterday. We might even celebrate with a curry…
As time marches by and I get deeper into this new treatment I am trying to understand the rhythm that comes with it. This might not make sense, but different side effects come and go during the two week cycle and knowing when they might strike can help in reducing anxiety and understanding more about what the immunotherapy is doing ‘behind the scenes’ and the impact it is having. One thing is a constant – lack of sleep.
It is incredibly difficult to stay motivated when you don’t know whether the treatment is working – for that we have to wait until the spring but at the moment I think it is fair to say that it is doing something – I just hope that it is making inroads in the way we need it to. I have been getting dizzy spells in the last few weeks which have freaked me out, I think they are a side effect of the Braftovi – but am scheduled for a head scan this week just to check and hopefully discount. Fingers crossed. – my track record with scans isn’t the greatest so I am nervous.
Away from side effects I am still totally preoccupied with thoughts about the future. This is a really difficult topic at the moment for obvious reasons. I want to believe that this will all turn out ok, the treatment will be a roaring success and I will be able to get back to being the real me. I fear though that the reality will be less cut and dry than this and I will be fighting for survival for the rest of my days. This is something that I’m still grappling with and it will take time to reconcile. I just hope that I get time – because time has become a very valuable commodity of late to me. The signs at the moment are good, but there are so many ailments that could change this in a moment that I remain constantly on edge and fearful of unwanted outcomes. It feels like running through a minefield with a blindfold on. I just desperately want to get to safe ground intact.
We did it. Cycle four (my first on Encorafenib) completed without a trip to the ward or any infections. A small victory but a significant one. It signals for me a turning point and a little traction in the battle.
Not only did I complete the cycle without incident, I actually feel a little stronger. The constant eating of high calorie food has also helped me put some weight on which was desperately needed. I’ve seen weightier skeletons! (Now 87kg – I was 97kg pre-diagnosis and 84kg last week).
Blood results on Wednesday seemed promising but it is still way too early to place too much on them. Liver looks to be performing though which is my immediate concern so that is one less thing to worry about.
I feel like we can at last start to plan a few small things which prior to Christmas seemed presumptuous and possibly foolish. I feel strong enough to think about getting away for a day or two in the van, and we can talk about where we might like to go in the spring. These things mean so much when you have been living a nightmare for so long. It does in some ways feel as though the rollercoaster is starting to slow down just a little.
I am still getting dizzy in the mornings which is a minor concern. Probably a medication side effect (everything else is) but we have an MRI head scan booked for the 25th just to be certain the dreaded sea monster hasn’t decided to take up residence. Fingers crossed again. My relationship with scans is not the greatest so it is playing on my mind. No recent headaches though which I take as another positive.
I’ve spent most of today on the sofa (again). The treatment does seem to just wallop you over the head and I just didn’t have any energy. You know you are tired when you are dreaming in the middle of the day… desert islands and biking adventures – here’s hoping.
A good week with prospects of another one ahead – let’s keep this momentum but I am keen to find a way off the rollercoaster please!
Yesterday I got a hit of the most potent drug. It wasn’t morphine and it wasn’t Dex, it was a heady mix of adrenaline and hope.
I was lucky enough to be able to buy an e-bike not long ago. When I bought it I was between hospital stays and was fairly poorly but decided to go for it – mainly to give me a target to aim for. I had no idea if I would actually get to ride it or not.
Well, yesterday I did. The bike took the load (my legs have nothing to give at the moment) and I was blown away by the power and ability of the bike. I was also lucky to be joined by all my biking friends from near and far who had come to join and support me on this big step forward. I was absolutely buzzing. I was back on the hill with the wind in (what’s left of) my hair. It was incredibly emotional. I was back where I belong. Outdoors.
We managed a modest local loop and everyone had a smile on their face when we got home for hot pasties and mugs of tea. I’ve never felt so loved and supported – and it gave me real hope that all is not lost and I can still look forward to doing some (all?) of the things I love with those who mean so much to me. Skiing and diving are both on the long ambition list! Baby steps..
Today has been payback day though. I clearly used more energy yesterday in one go than I have for weeks (months?) and today I’ve been totally whacked. At times I’ve felt dangerously low on energy and had a funny turn this morning but thankfully felt better with some calories on board which continues to be a daily challenge with no taste and mouth ulcers the size of dinner plates.
Still, it could be so much worse. I so lucky I got to spend a damp Saturday getting muddy on a bike with great friends and it transported me to a special place and made me feel invincible, just for an hour or two – but that was worth its weight in gold (or e-bikes?). Thanks to everyone for coming out to play and being by my side – it really meant the world to me and has armed me for the next cycle.
Back in for treatment on Wednesday so braced for a return to sofa time and a collection of weird and wonderful side effects. Fingers crossed the ninja Pac-Men are making themselves at home and doing the job.
Yesterday we packed up Christmas, its been a quiet couple of weeks but we felt it was time to look forward to 2023 – and we needed the space! I’m now eight days into the new treatment and I have (touch wood) had no temp spikes and feel like I can handle the drugs albeit there are definitely good and bad days.
One of the major side effects of Encorafenib is a rash and as we know, if there is a side effect to be had, I’ll seek it out. The rash is here but I have antibiotics and steroid cream to handle it. Mouth ulcers have made their first appearance too. Painful blighters. That said, if these are the sum of the impacts then I’ll happily take them if the treatment works. We won’t know for sure for a while, I expect this first cycle to be for three months but at the moment the pain is low level, very manageable and I somehow feel like things are changing.
Still, there are real improvements. I am walking around the block most days, I’m even ‘trotting’ up the hill on the estate. I won’t be setting any Strava PBs yet but it feels a little closer to being me. Strangely I’m looking forward to it. I can walk (on a good day) without breathlessness and can hold what I’d call a normal pace. It just shows how poorly I was before Christmas when I couldn’t get upstairs without a break for breath. Baby steps that I need to remember. They so easily get lost on the bad days.
It is very strange seeing everyone going back to work when I know that I am in a very different groove for the foreseeable. Normally I’d be planning out 2023 in the office with the team and getting stuck in – instead its a combination of continuous calorie intake and making sure I don’t miss The Chase. Strangely addictive TV. I’ve also fired up the old arcade emulator and re-acquainted myself with Pac-Man – it felt rude not to. I do have growing confidence though that I will make it back to work at some point and be able to do what I do best – interfere!!
For now though my sights are set on my new e-bike which should be ready to collect by the weekend. More ambitions and targets – I miss my biking so much. I used to be out every other day most of the year and I haven’t swung a leg since September 26th. Now there is literally nothing to me, certainly no strength. I really hope that I can get into some little rides and feel the wind in my hair again. We have a gang of my best biking friends coming over this weekend – I can’t wait to see faces I’ve not seen for months, and you never know – I might just be able to hit ‘boost’ and get up the hill….. cheating, but I know you’ll understand 😉
I hope that you had a Christmas to remember. I was so, so lucky that I was able to make it home and it really put me on a footing to tackle the next level of this arcade challenge which started this week. We are now into level four.
I am finding that the unbridled terror of the past few months is now starting to thankfully subside. There is still an enormous amount of anxiety and a reasonable dose of fear – but the debilitating symptoms of prolonged deep fear of the unknown are subsiding which is allowing me to try and focus on the job in hand more and more each day. A welcome relief. (Helped somewhat by my drugs diet I’m sure).
The short term game changer since leaving the ward last week has been the describing of a super strength anti Inflammatory. This has really reduced the pain and swelling in the liver and elsewhere which means I’ve been largely pain free for over a week. A real bonus that has made a massive difference back at home. Long may it last!
So Wednesday signalled a shift from the broad spectrum chemo to a tailored BRAF immunotherapy treatment. My understanding of the difference between the two is (as always – arcade analogy) chemo sends the Pac-Man infantry to target anything that is moving. They are armed and dangerous and will target all multiplying cells. Alas, they don’t carry the tank busters needed for BRAF.
Immunotherapy on the other hand sends in the special forces. These guys are equipped with special weapons and knowledge and seek out my antibodies, give them the knowledge and weaponry to tackle the cancer themselves. Anyway – that’s how I understand it! Super Pac-Men are now deployed. Early symptoms are manageable and now we need to get into a rhythm that hopefully avoids hospital (please, please) and promotes a more ‘normal’ day to day routine.
Keep those fingers crossed and those positive vibes flying this way – we need a dose of good luck and I hope its this.
Happy New Year to everyone – I hope you have a good’ un.
It is Christmas Eve, a day some thought was beyond me (thankfully how wrong they were) and I am ecstatic to be back at home, in front of the virtual fire drinking a virtual G&T (0% but surprisingly very good for my battered taste buds) ushering in Christmas relaxed and happy for the first time in a long while.
The team at the Christie pulled it out of the bag once again to get me here. A week of antibiotics ripped through and did their job of lowering the infection. I’m still on tablets including some new mega anti inflammatories to help the poor old liver but they really seem to be helping. Today at least has been a really, really good day amongst the seemingly never ending bad news and challenging ones.
To top it off, we were able to join the family on the annual walk up to Peel tower near where we live. Normally a route I would run from the front door fairly regularly in about 11 minutes. Today it took 45 up and the same down but every step felt like a victory and when I made it to the top I felt overwhelmingly alive again. It is a place I know so well but has been totally out of reach since diagnosis. But, armed with my walking poles and lots of moral support I was back on the top of my little mountain. It was emotional and hugely rewarding.
Christmas is going to be quiet, relaxing and generally just us at home enjoying not being in hospital and we can’t wait. Treatment begins again on the 28th and this is where the Pac-Men++ come into play. Immunotherapy is the new black – very en-vogue I’m told. I hope it carries less bad side effects and more positive progress that’s for sure. The medical team seem confident and I am happy to feed off that.
I’d like to take this opportunity to wish everyone a very Happy and relaxing Christmas wherever you may be, hug each other and enjoy the simple things as well as a good feed, for us this evening it is time for our traditional dose of John McClane, Nakatomi Plaza and curry night!
Chumbawumba (yes that nineties scruff pack) had a lyric in their one memorable hit. ‘I get knocked down, but I get up again, you are never gonna keep me down’. This week has been another week of knocks unfortunately, and my knees are bruised from being knocked down. It’s taking more and more resolve to get up each time and I’m ashamed that I’m not stronger than I am. I’ve never boxed – but I feel like I’m in round ten and in a punch drunk daze. I don’t know where the next blow will come from.
Alas this cycle has put me firmly back on Ward 1 with, you guessed it – another infection from within. The primary tumour is causing the infections and temperature spikes and its untenable as it is. We simply can’t be ending up sick and in hospital mid way through every treatment cycle. The weight loss is bonkers, and my sanity is at risk!
My consultant has decided that we will shift to a BRAF specific immunotherapy drug as soon as possible (next week) which I hope (with all hope) will start to have a positive effect – I’m not sure what happens if it doesn’t and I’m not ready to go there. Today’s CT scan showed progression in the liver, with everything else static. The liver is the top risk that we have to get on top of pronto. And it is that giving me the most pain day to day but the nursing team are great and I’m being well looked after. PS I fully support ALL of the nursing and paramedic strikes – without their dedication and passion for care there is no NHS.
Meanwhile, a life on the ward consists of World Darts replacing the World Cup, rolling food requests and a queue of medical experts poking and prodding and seeking viable veins for blood (there are almost none left). It definitely has an air of Groundhog Day – I just hope I manage to break the loop and get home for Christmas, I really, really don’t want to be in here by then. Keep those fingers crossed.
The Sea Monster might have grown armour – so now we need to bring in the super Pac-Men. Hopefully these guys are the ninja warriors of chemo, I’m told they know their stuff so we are back in the trust and hope game (not that we weren’t anyway). We are awaiting approval as apparently the tailored drugs are very expensive (always did have expensive tastes).
Today was a good day though. Caught up with family, bought the last few christmas bits and felt good till about mid-afternoon. This is the new pattern along with losing most of my sense of smell and taste which is making eating a challenge. Normally nice things smell awful and most food tastes of nothing. I wish there was a way past this hurdle but I don’t think there is.
Good news is that we have a pathway mapped out for Christmas which I can’t wait for. Just seven days of the orange beastie tablets between me and that turkey.
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