I’m sitting here with immunotherapy treatment number 10 slowly dripping into my veins. I’ll be here for an hour and do this every month.
Everything seems to be running on time today and I’m plumbed in within 10 minutes of arriving and my Nivolumab, which is only made up when I call them to confirm I’m coming for my appointment was here waiting for me.
It’s also nearly 9 months since my initial diagnosis and since then there have been a lot of ups and downs with recent months spent just “treading water”, managing fatigue as best I can and reducing oxycodone very slowly (to help alleviate some of the fatigue)
I contacted the oncology team today about the chest pain and they wanted me to go to a&e to get checked out. “Better safe than sorry”
So at 10:15 I went voluntarily into A&E. I was seen very quickly and the waiting room was empty when I arrived. Hooked to an ECG within 10 minutes and the staff took my “vulnerable” state very seriously.
Within 20 minutes I was in the minor area and in a cubicle having another ECG with the promise of one more to come.
I mentioned how quiet it seemed and the staff gave a nervous laugh. A&e minors is quiet but the rest of the hospital was very different. All departments and wards were at capacity.
The doctor I saw was worried about a possible lung clot so organised blood tests and a chest x ray and she was going to see if she could get the results of my CT scan from last week. This was about 11:30.
All tests were completed by 12pm but I got the impression I was in for a long wait for results. By this time the pain had actually gone, completely. I was lying on a slightly elevated bed and something about the position had helped.
The doctor kept checking in and apologising about delays but couldn’t give me any ideas on time. Unfortunately with no pain to focus on my mind started wondering and worrying. What were they going to find, how long would I be here, is this another overnight stay.
I was also acutely aware of helicopter noises at least 2 or 3 times from outside and got very nervous about being in hospital. You hear of people catching covid in hospitals more and more these days and for the first time ever I felt scared and vulnerable.
I told the doctor at about 1.30pm that the pain had gone and I wanted to go home but she still wanted to rule out a clot. She was waiting for the CT results and if they were inconclusive she wanted to do another chest specific CT scan. This was just more delays in my mind but I understood.
The next hour was a mental battle with my anxiety levels rocketing. I wanted to get out of the hospital and go home. For my mental well being the hospital was no longer a place I wanted to be.
I first mentioned discharging myself at about 2.30pm and my doctor was nowhere to me seen. I was so anxious, and alone. I had no pain, I was blocking a room and I could hear it had got a lot busier outside with staff struggling to find space for new patients. I felt like I should not be there anymore.
To her credit the doctor completely understood my predicament but did strongly reiterate that a missed blot clot could be fatal. If I was still in pain there would be no question, I’d stay as long as needed but with no pain, chest x ray and blood tests clear I just wanted to go home.
At 3.20pm she came to me with a handwritten “discharge” note for me to sign stating I was aware of the consequences by choosing to leave. She made me promise to come back at the slightest sign of symptoms again. I was almost in tears signing that form at the relief to go home.
It feels silly now thinking about how worked up I got in such a short space of time but when you’re just waiting with nothing to do the mind is a powerful weapon.
Since I got home I discovered I can bring the pain/ache back by lying flat on my back or on my left slightly. Turn to the right and it goes away completely. I now think I’ve pulled a muscle in my chest by over doing things over the weekend and lifting something awkwardly.
I’m confident my pain today is not serious as I’ve had a chest X-ray and blood tests that haven’t shown anything and getting checked out was the right thing to do but in hindsight I’d think twice before going back into a&e in a pandemic where hospitals are swamped.
I’d think more carefully about everything that’s happened over previous days rather than just “I have a new pain, panic.”
For the first time this year, Covid has really screwed with my plans. Unfortunately in a way that could affect my illness.
I was expecting to have an appointment for a new CT scan any day now so we can see if the treatment has been working. Unfortunately, due to covid, no CT scan appointments are currently being booked. There’s no indication how long this will go on for.
This means that when I have my consult at the start of January 2021 we will have no indication of whether the immunotherapy has worked or not.
I’ve been told that they’re going to assume it has been working in the absence of any other information and also because my symptoms have not got worse over the last few months.
This offers little comfort as we could be missing the fact it’s not working and moving onto new treatment sooner rather than later. I want to be confident but that niggling voice at the back of my mind is saying “what if it’s not working?”
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.
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.
