I should be used to this by now but this morning I woke full of dread. Scared about today’s 4th round of treatment and worried what will happen if it’s not working for me.
I know it makes no sense but common sense has never been around when anxiety strikes. I’ve had to try quite a few coping techniques that I’ve not used for a while. Today I used the “what if” technique.
This is where you take the subject of your anxiety and worry and assume it’s true and ask yourself what will happen if you’re right. That will take you down a path to a conclusion. Then you ask what if again. And you keep challenging yourself at every conclusion.
The aim is that eventually you get to a point and say “what if” and the answer is “nothing bad“
Winston Churchill called his depression his “black dog” as a way of giving it a physical manifestation and allowing him to control it rather than allowing it to control him. But even he had days where it got too much so that he couldn’t even get out of bed.
I have to remind myself that I’m not the only one dealing with anxiety and depression and that when you throw cancer into the mix it’s ok to have down days.
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.
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.
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.
All of my posts so far have been backdated to the actual dates of events but now we’re pretty much up to date. The feedback on my blog has been overwhelmingly positive so thank you.
I had my 2nd immunotherapy treatment on Thu Oct 15. There was a long wait of over an hour between the first drug going in and the second one. Apparently this is due to the pharmacy only making them up on the day and just being very busy. This is quite normal apparently I was just lucky that it was quicker on the first treatment.
The only noticeable side effect from the 2nd treatment was some hot flashes a few times a day for an hour or so. No way of controlling it other than open windows, fans and wearing shorts all the time to try and stay cool. These lasted just over a week before fading out.
The fatigue and constant tiredness is there still and I’ve had days where I’ll have a sleep, be awake 20 minutes then need another sleep. I keep being told this is your body fixing itself. I hope so!
I’m getting into a routing of taking drugs and pain meds every day and have had no ill effects from the morphine dose I’m on (60mg twice a day).
I’ve also had a few phone consults with a physiotherapist from Phyllis Tuckwell too. She’s trying to help me get my breathing and lung use back to normal. I’ve had a couple of months of not breathing deeply and fully using my lungs and have to be reminded to keep breathing to full capacity.
She also wants me building walking stamina up. I’ve spent a lot of time recently just lying still and moving as little as possible to avoid pain so I’ve got to start gentle walking again and get moving before I get long term muscle and joint issues.
This last week I started with 0.6 miles, then 1.2, 1.6 and yesterday 2 miles. I feel I may have gone too far too fast as my knees have gone all stiff over the weekend. I hope its the walking as joint pain is also a potential side effect of the immunotherapy.
I have my 3rd immunotherapy treatment next week which means I have to have a blood test on Monday, a consult on Tuesday and then the treatment on Thursday.
As a family we’re holding up well. Occasionally the emotions spill over but that’s ok as we support each other and have lots of friends and family looking out for us. We have so many offers of help but realistically there’s not much people can do.
I still ask that people don’t feel sorry for me. Don’t give me that sad look when you talk to me. Be normal. We can talk about it, it doesn’t have to be the elephant in the room and its much more comfortable to just be at ease talking about cancer. Yes its shitty bad luck but we can laugh and joke about it too.
I’ll finish this post with an example. A few weeks back right when my cough was causing me grief I was having a particularly noisy coughing fit on the sofa in front of the family and Rhian says, completely straight faced,
“will you die quietly!”.
I laugh out loud and so does she. 😂 You have to find light in the darkness.
The night after the first treatment was very uncomfortable with a lot more chest and side pain than normal. The next day, Friday I spent most of it just lying down and moving as little as possible as this meant less pain.
I’m on my own all day as everyone else is out and generally feeling quite down with the pain, the morphine is having to be used more and more just to keep it down. The paracetamol and codeine on their own aren’t enough.
The next morning, Saturday I’m still in so much pain and fighting to control my breathing. Katie insists I call the treatment hotline who in turn want me to come into A&E in case I have some clots. They let A&E know I’m coming in.
Again I’m seen very quickly but hate that I’m on my own again
After more blood tests, chest x ray, ct scan they confirm there are no clots but there are small effusions on both lungs, my temperature is slightly high and one of my blood markers (inflammation) is very high.
They suspect I have an infection on the lungs and want to start IV antibiotics. They also want to admit me. I’m alone in the room in A&E and want to go home, I want to cry but lust about hold it together. Feeling really low now.
They hook me up to an antibiotic IV of Tazocin and within a couple of minutes of getting it my face feels very blotchy and hot. I’ve had an allergic reaction. Luckily it dies down almost as quickly but it was a horrible sensation.
Drs agree not to give that to me again and switch to oral antibiotics.
I’m initially transferred from A&E to the Emergency Assessment Unit. I thought that’s where I was staying for the night but after about an hour I was then transferred to a ward. I got a private side room which was really nice but I felt so lonely and fed up.
I have my dinner which was surprisingly nice and settle in for the night. As I’m lying there I notice for the first time that the pain as dulled significantly.
I’m woken up at 6.30am by a nurse with pain killers. I don’t feel rested at all but the pain has dulled further however I notice an old friend has returned as my cough has come back. I’d not had that for a few weeks now.
An oncology Dr arrives with the same registrar we saw on Tuesday. He confirms an infection but temperature is normal now and asks if I want to go home. Of course I do.
He tells me I need to consume lots of Kefir, a yoghurt drink with lots of bacteria. Apparently antibiotics and reduce the effectiveness of immunotherapy so this balances it out.
My lunch arrives and I’m starving hungry. I also don’t know what’s happening or if I’m going home today.
12.40 a nurse comes in to tell me I’m going home.
2pm I’m home. Cough is really annoying now but virtually no pain. I feel good. Also hungry.
In layman’s terms the treatment paints a target on the cancer cells so that they can be see by your immune system. Normally they cannot be seen. Your immune system then goes to work attacking the cancer cells.
I was told a good result is when I get my next scan after 3 months and 4 treatments that the tumour in my kidney hasn’t grown. An excellent result would be if it has shrunk.
I’m on a regime called ipi/nivo which is combines two powerful drugs, Ipilimumab and nivolumab. I will have both of these drugs via a drip every 3 weeks for 4 treatments. Then a repeat set of scans and if we see good results then a break of 4 weeks and then continued treatment every 4 weeks with just one of the drugs for the rest of my life or until it stops working.
I has a lot of possible side effects and most are treatable, the most common ones being diarrhoea, fatigue, rashes. I have access to a treatment hotline, 24×7 and can discuss any issues or suspected side effects.
