Over recent weeks I’ve been having quite vivid dreams. The sort you remember clearly even once you’ve woken up. Some of these have been very distressing and a few times Katie has woken me up as I’ve been making strange noises.
A few times recently I’ve woken up really confused. Not knowing where I am, what time it is. I’ve also been dizzy and generally discombobulated on these occasions.
Over the weekend, I woke up suddenly from one of these dreams, it was light so must have been about 7am. With the dream still vivid in my mind I went to stand up to go to the bathroom and immediately lost my balance and sat back down on the bed. I think more from shock than anything else this upset me and I felt foolish as I started to cry a little bit. I was so confused.
I’ve been trying to find out what could be causing this and there’s many culprits but the most likely I think is the morphine. Odd that’s its happening now after being on it for so many weeks. I’ll speak to medical teams this week for advice.
I made a decision earlier in the week to try and offer some help at work. I know they’re struggling with workload and me being off isn’t helping but they’ve never made me feel guilty. In fact the opposite, “forget about work, concentrate on yourself” has always been the message. The last week or so has had me feeling a bit like a spare part, not doing anything other than get in the way.
So yesterday was the day. I was reminded again I’m still off sick so they’re not expecting a lot from me but were happy I wanted to try and keep busy.
I managed about an hour of work in the morning. My concentration was all over the place and the task I completed should have only taken 20 minutes. But it was a start. A break for lunch and a brief rest and I managed another hour in the afternoon. Again significantly slower than normal and at the end of it I could already feel myself flagging. When I say work, I mean sit at a computer, tapping keys, managing cloud computing resources. Hardly manual labour!
I was using my brain for the first time in months and it was tiring. I never knew how tiring it would be and it took me by surprise. However I marked it as a success.
Until this morning.
I woke up as usual at about 7.15am with Katie but immediately fell back to sleep until almost 11am. I was still tired, more tired than I’d been for weeks. A deep sapping of energy when moving and getting out of bed was an effort. I stayed in bed, watched a bit of TV until about 3pm then fell asleep again! This time until 7pm! I didn’t move at all in those 4 hours!
I had a call over lunch with an occupational therapist from Phyllis Tuckwell to specifically talk about managing fatigue and one thing she said resonated with me. True fatigue is not cured by sleep. It has to be managed and controlled. Something I clearly have a lot to still learn about. Luckily she emailed me a lot of information to help.
I was falling asleep again at 9.30pm and I’m struggling to keep my eyes open as I write this.
Now I’m not sure if this excessive tiredness today is down to using my brain for a few hours yesterday or not. I can’t believe it is but I’ve never been one to believe in coincidences either. It’s worrying though.
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.
After the crazy flurry of activity of the first few weeks after diagnosis, life has settled into a new normal – Steve is weary but otherwise seemingly fit and healthy (if we ignore the amount of morphine he is taking daily to keep the pain and cough at bay) and it’s been easy to push the thought of his illness to the back of my mind and almost feel as if this isn’t actually happening, and that everything is going to be alright.
Today we had a visit from one of the nurses from the hospice, to introduce herself and talk about the team and what they can offer for all of us.
She expressed her shock at how quickly this had all happened for us, and said that it was unusual to be as far along the process as we are, this soon after diagnosis.
We both got emotional while we were talking to her, it was a very honest conversation and as we spoke about symptom control and the future, for me it was a real reminder that, actually, my husband is really poorly.
And I’m classed as his “carer”, and will be considered his main carer as “the disease” progresses. This worries me – I’m not a natural carer. I was always the patient when we played hospitals as kids, when we were looking after Dad in his last days, I was “communications”, Lou and Mum were “carers”. I’ll do it, of course I will, but I’m just not sure I’m going to be very good at it.
Hopefully this will all be a long while off, but today just brought it all acutely back into focus for me, and the tears which haven’t been around much in the last few weeks have flowed again today.
(This was all typed yesterday – this morning I sobbed on Steve, he reassured me, and we have been for a 2.5 mile dog walk in the pouring rain, and I’m feeling more positive again)
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
It’s still hard to imagine that 2 months ago on 6th September we woke up normal people, with normal lives.
By lunchtime on 7th September one of us had incurable cancer.
Next time anyone gets to have a look at the tumours will likely be just into the new year, to give the immunotherapy a good chance to make an impact and do it’s thing.
I’m desperate to know what is happening. At the moment we just don’t know at all.
We are doing everything we can, and we have to be patient.
I’m using the Royal “we” – Steve is doing everything he can, the rest of us are his support crew.
But for the first time I’m feeling hopeful – whilst he’s exhausted, Steve appears to be doing well – there are niggles and symptoms, but today he walked the dogs with Kira for the first time since the week after the diagnosis, and that makes me hopeful that maybe we’re in this for the (relatively) long haul.
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.
