I’ve always taken our health service for granted. It’s always been there during my life time so I’ve never had to worry if I can afford treatment. Yes in some situations there may be a wait for treatment but that’s largely down to successive governments cutting funding repeatedly.
What I’ve found with my cancer diagnosis is that the services and staff are faultless and I’m treated like a VIP.
I’ve been trying to calculate approximately how much I’ve had spent on me but to be honest I have no idea but it’s well in to 6 figures.
From my first ambulance ride on a Sunday to getting X-rays, ct scans, pain killers, a biopsy a few days later, a consult with an oncologist as soon as the results were in and immediate access to immunotherapy I’ve had no need to consider using my private medical insurance.
So far:
1 ambulance trip
2 ct scans
2 chest X-rays
1 local anaesthetic
1 biopsy
10+ prescriptions
2 overnight hospital stays
15+ blood tests
3 consultations with a renowned oncologist
3 rounds of immunotherapy at £33,000 each
I think this could easily be £150k by the end of the year and I’ve not had to spend anything.
2020 has not been a great year for me for general fitness and exercise. What with recovering from a shoulder operation in December, then lockdown stopping boot camp visits (I never really liked the remote/zoom classes), then the surfacing of the cancer I think its fair to say 2020 has been a sedentary year.
Recent years has seen me battle with weight from losing 8st in 2008 and then slowly putting most of it back on in the following 12 years to ramping up exercise with personal trainers and then boot camp sessions. I’ve always been unfit and overweight but trying to do something about it.
Being 6’8” tall had always disguised my size and when I was at my heaviest at 330lb people were always surprised when I told them. I’m not proud of hitting that weight.
From March to Sept this year I didn’t weigh myself at all. Not through a conscious decision but because I was scared to. I knew I wasn’t exercising and was convinced I’d piled the pounds back on and was heavier than ever. In March I was back to 317lbs 😳
After the antics in September when my cancer was discovered I’d had a period of a few days of eating almost nothing while in hospital and worried. When I got home after that first admission I decided to weigh myself again. I was pleasantly surprised to find I was still at 317. I’d clearly been a bit higher but not that much.
Worryingly, by the middle of Sept I was down to 310. I wasn’t trying to lose weight but my appetite had gone. Even though for almost 2 weeks I spent a lot of time lying down in bed as this was where pain was most manageable and was barely moving around much, I was still losing weight.
I joked it was alright as I had a lot spare but I knew this could be an issue if not controlled. I was at 300lbs by the middle of October.
At the start of October I made a conscious decision to get out and start moving a bit more. Walking was my exercise of choice and my first few walks were slow and only about 0.5 miles. Then 0.8 miles and then a mile.
I was struggling with stamina, I couldn’t talk while walking and the slightest hill would mean I had to take a breather.
I decided to trying some help with Nordic walking poles. These helped massively by making me stand up straight, open the chest, use arms and legs to help propel.
The distance increased to 1.5, then 2 miles over a few days. Great!
My knees disagreed, I’d tried to do to much to quickly. My physiotherapist told me to focus on a mile and keep to a mile until I could do it comfortably. And then try and get to my normal walking pace.
Long story short is that now, in mid Nov 2020 I’m walking (without the poles) at my normal pace and can hold a conversation. This weekend I’ve walked 5.5 miles and joints are fine. I’m still finding hills very hard but that will come with time too. It also means I earn my naps now 😴
As for the weight and appetite, my appetite has now come back. I’m not eating quite as much as before and if I’m honest this is mostly due to me going to bed earlier so I’m not having schnacky snacks. My weight this morning is 294lbs. That’s another 3lbs in 2 weeks. I’m 99% certain this is fine and is due to me not snacking.
I’m still very overweight but I’m in the strange situation that I have to be very careful how I lose weight. It needs to be intentional and I have to make sure I look after myself.
We’ve all been feeling good (within reason) for a few weeks now, almost normal you could say. On Friday we met one of the nurses from Phyllis Tuckwell who wanted to explain what they would be able to do not just for me but for all of us. As the conversation moved quite openly and freely we suddenly hit some subjects we weren’t prepared for. No fault of anyone just the natural flow of conversation.
Wham! The realisation that my cancer isn’t going anywhere came back and knocked me and Katie for six. While we hope that the need for caring, hospital bed, regular nurses etc is years and years away. It’s there, in the future somewhere.
It was during these last few days that friends started planning next years motorbike trip and I made a blog post while on quite a downer.
But! We have great friends and support network and they’re doing their best to pick us up out of this brief slump.
I’ve booked my hotel for my bike trip next June! And am honestly looking forward to it. We’re going to book some time away for Katies (50th – ssssh!) birthday in March.
While we’re not going to stick our head in the sand regarding the cancer we can only deal with the here and now. Right here and now we’re doing well.
When I first got my cancer diagnosis I did what apparently most people do when they get the same news, I went to a very dark place and assumed I was going to die in a matter of days or at most weeks. I had 2 weeks of assuming the worst before I spoke to a consultant with the treatment plans who mentioned years.
Stupidly, I even started worrying that I wouldn’t get to see the full series of Long Way Up, the latest motorbike adventure by Ewan MacGregor and Charley Boorman. Their first two series from 2004 and 2007 are what got me into motorbikes and annual trips into France and Germany with friends. Apple TV+ was releasing one episode a week.
Knowing “years” was initially comforting but as the weeks have gone by some of the darkness has crept back. What does years mean? Will I see 60? The statistics say no. Do I actually want to know, should I just live everyday as if its my last. I usually trying and push it aside with some positive thoughts about the here and now.
Now, friends that I usually travel with each year for an annual motorbike trip are planning the 2021 trip. The 2020 trip was cancelled due to Covid and everyone is hopeful that vaccines and controls will mean a 2021 trip is possible. That’s not stopping them from making sure their bookings are refundable though.
Now what do I do? I have no idea if I will even be here, yet alone be able to ride a motorbike or go on a road trip. This makes me really sad and angry at firstly the cancer and then covid. I’ve been going day to day feeling ok recently. Almost normal apart from the tiredness but then this slaps me hard as a wake up call. I still have cancer and my future is uncertain.
Not much happening at the moment so I’ve not had much to write about. This “radio silence” leads people to worry about me. I don’t want people worrying unnecessarily so here’s an update.
Since my 3rd immunotherapy treatment I’ve still got off very lightly. Fatigue has got worse, getting occasional hot flushes and some minor aches in my elbows, wrists and knees. All manageable.
I think my body is getting used to the 120mg of morphine a day as I’m getting an occasional twinge of pain in my chest. Nothing major but I’m hyper alert to any changes in my body currently. It could also be down to me not taking paracetamol regularly any more. Maybe I should rectify that 😏
I’m getting so much sleep at the moment that you wouldn’t have though it possible to still be tired but I am. I think its because the quality of sleep is very poor still. Keep waking, turning. I’m having some very vivid dreams too. Almost nightmarish occasionally but not quite but I’ve woken a few times quite upset what I’d been dreaming about.
I’m trying a weighted blanket to see if that helps. I’ve heard good things. I’ve found already that you get what you pay for as the first one from Amazon that arrived yesterday is going back. Not much good when it deposits a fine grit over everything 😳 New one, slightly more expensive on order.
I’m still getting out and about, either to Drs, pharmacist, for a walk. I was able to take the dogs on a flat 2 mile walk a few days ago. Easy. Then another walk over the weekend had a small hill. Not so easy. Puffing like a steam train when I got up to the Wellington Statue in Aldershot
I’ve been humbled by some of the feedback on my blog, from all over the world too! Lots of people relating to my story and lots of people complementing my writing style. I’m just being honest. I’m not comfortable talking to strangers or even friends sometimes but I can write and find it much easier to express myself in the written word.
Thank you to everyone reading and commenting. Your support means a lot to all of us in #teamdavis
Even though I’ve been through this process twice before I’m still very nervous. Each treatment adds to the drugs already in my body and increases chances of side effects. This scares me.
I don’t get much sleep the night before and know its going to be a long slow countdown to 1.30pm.
First part of the process is to phone the Aseptics Pharmacy just before we leave to confirm we’re attending the appointment. This confirms they can make up the drugs needed for the treatment.
I turn up at 1.30 on the dot discover the lift is out of action so I have to take the stairs for one flight. Not much for a normal person but for me this is an effort. Puffing and breathing hard I get to reception and give them my appointment card. She ticks me off a list and tells me to go to room 2. So far so good.
Arrive in room 2, I can see 2 spare chairs so wonder which is mine. I introduce myself to one of the nurses in the room and she checks the list. Makes a concerned noise and checks the computer. She asks for my NHS number which I give her.
“I don’t have any appointment for you today, sorry”. I explain the date was written on my card and the receptionist has checked me off a list. So we go back to reception. I’m getting more anxious now and very warm.
No receptionist. My mind makes a leap, maybe she was an imposter 🤣 don’t be stupid. Nurse sees receptionist down the corridor outside a small office. As we approach its apparent they’re talking about me already.
I’m asked to take a seat in the corridor and everyone disappears into the office and I hear my name, date of birth mentioned a few times. I’m very conscious that people in the rooms already hooked up to IVs are staring, something interesting is happening.
It’s about 10 minutes before a different nurse approaches me, very apologetic. There’s been a mix up. My appointment had been moved, I thought she said to Monday. I panicked as I didn’t know if this would impact the treatment as dates and timings were important.
She said I could come back or the pharmacist had agreed to make up the meds today but there would be a 1-2 hour delay before they were ready. No brainier, I was there and I didn’t want another anxiety filled night and morning so I’d wait.
I was directed to a coffee area and waited. I also got hotter and hotter and the face mask I was wearing wasn’t helping at all
Time seems to pass really slowly but the nurse keeps coming back and updating me. Eventually, around 3pm she comes and gets me to go into room 4, chair 2.
Things happen with normal NHS speed and efficiency then and I’m quickly hooked up to the IV machine and the first saline drip is connected. After about 10 minutes this is removed and after a name and date of birth check, the first drug is connected, the nivolumab. Timer is set for 30 minutes, more waiting.
I start listening to some podcasts and try and relax and not think too much about what is going into my veins.
When the drip finishes an alarm goes off and I’m quickly attended to and swapped to another saline drip. The second drug isn’t here yet so we wait.
And wait.
Another 20 minutes pass and the ipilimumab arrives in a yellow bag from the pharmacy. Another name and DOB check and I’m hooked up. This is the really expensive (£30,000) and really toxic drug. This is the one that is stopped after 4 treatments. Another 30 minute timer.
By the time this one finishes, I’m the last patient left in the room so don’t feel guilty taking a selfie.
Another 10 minute saline drip and we’re done. I go and meet Katie who has just arrived to pick me up.
The biggest side effect of my illness currently is fatigue. I’ve never experienced anything like it even though I’m someone used to having naps and enjoying sleep but also experiencing being tired through not getting enough sleep in the past.
This is not fatigue.
I can only describe it as constantly having a phone battery at 5% and running in low power mode. Everything is an effort, almost in slow motion. I feel drained all the time, despite eating and drinking I have no energy. Despite sleeping for what seems like 99% of the time I’m still tired.
I’m constantly told “its you’re body repairing itself”, which I guess is partly true. It not a great feeling though.
I’m now struggling to make it more than an hour or so without some sort of nap and when I do have a nap I have to make sure I set some sort of timer for 30 minutes to wake me up. This is so I don’t lose hours by falling into a deep sleep. I did this a few weeks back, went for a nap at about 4pm and despite waking briefly a few times was in bed until 8am.
And I was still tired after that!
In an effort to control my sleeping patterns I’m now going to bed very early, usually by 9pm. The amount of fluid I’m drinking each day, combined with the fact I only currently have one functioning kidney means I visit the bathroom at least 3 times a night (that’s not helping the sleep either!) and then I wake around 8am.
I’m informed that some of the fatigue is down to medication, some is due to the illness but some is also down to lack of fresh air, lack of exercise over the past few weeks. So I’m now making an effort to rectify some of this.
I’m trying to get out walking most days. A few weeks back I managed just over half a mile and was a wreck. This weekend just gone I managed a mile at almost normal walking pace while holding a conversation. Progress is progress but I’m still a way off being able to take the dogs out for 3-4 mile walks.
I hope the fatigue eases but compared to some of the possible side effects I could be suffering from I’ll take fatigue every day.
I should be used to this now for the 3rd one but I still have a lot of anxiety. Anything medical, hospital visits etc always worry me.
The week starts today with a blood test that I’ve already had done at 10am at Aldershot Centre for Health. This is probably the 20th time I’ve been “stuck” since the start of Sept. I always have to explain that I’m an awkward bleeder and to use the back of my right arm or hand. Today’s was a good one, the nurse drew blood first time (probably only the second time that’s happened) and I really didn’t feel a thing even though it came from the back of my hand.
You can tell when a nurse or phlebotomist is over confident as they always start with “I’m sure we’ll be fine” and go for the big vein in the crook of the elbow joint. Which for me is invisible. You see their confidence drop after the 2nd or 3rd stick. Always followed with a sheepish apology. I’m used to it now. Luckily I’m not scared of needles or blood.
The Blood test will be sent to St Lukes Cancer centre today to be analysed ready for my consult with Professor Pandha tomorrow. Because of Covid this will be a telephone consult.
He’ll ask me how I’m feeling, any side effects and look at the blood results for abnormalities that could indicate side effects I’m not aware of, eg with organs.
Assuming all is ok, he’ll give me the go ahead for the IV treatment back at St Lukes on Thursday afternoon. That will be another 2-2.5hr outpatients treatment of the two IV drugs. Then we wait 3 weeks and do it all again.
When I saw Professor Pandha a few weeks back to get my confirmed diagnosis he was clear from the outset that the cancer is incurable and all we can do is manage the symptoms and maybe control the size.
He used the phrase palliative care. This was the first time it had been used alongside my cancer and immediately I was filled with dread. To me I’d assumed this meant someone is dying and this was the type of care to see them through to the end of their life.
In the weeks since then I have educated myself and now understand that palliative care is not the same as end of life care. It can form part of end of life treatment but is also treatment in its own right.
I’ve been already been talking to staff from Phyllis Tuckwell hospice from Macmillan nurses to help with symptom and pain management and Physiotherapists to help with lung and breathing exercises as well as getting me moving more.
So palliative care is a good thing and is not something to be scared of.
I had to go to the pharmacy to pick up yet another prescription earlier today and it highlighted something I’ve been thinking the last few days.
I feel like a fraud.
Now that the pain is under control, the side effects from the last treatment are tailing off and I’m making a concerted effort to move a bit more I can’t help think that to anyone else it looks like there’s nothing wrong with me now.
I’ve not worked since the start of September with my second “fit note” now signing me off until the end of the year to allow me to complete all 4 treatments in the first round along with the follow up scans and tests.
I feel really guilty not working, especially now there are no obvious signs of what’s actually going on in my body right now. So what if I’m tired? Lots of people get tired. So what if I get out of breath just climbing the stairs? I sit in a chair all the time I’m working.
I have to remind myself of just how bad the pain was just a few weeks back and the massive amounts of opiates I’m having to take to suppress it and also the battle going on inside my body with my immune system attacking the cancer cells.
Is this what immunotherapy is like inside my body?! (c) Marvel
I’ve read in numerous documents that side effects from the immunotherapy treatment can happen at any time and the risks increases the more treatments I have. I also know that my concentration levels are virtually zero at the moment.
So on the surface I may look fine right now but this can change suddenly.
