It’s taken me a bit of time to write this and it’s quite a long story. Not because things went wrong but rather processing all that has happened over the last few weeks has taken longer than I thought it would. In my last blog I mentioned that I would be undergoing a stem cell transplant and this would require a stay of around 28 days in hospital. What follows is the story of how through good behaviour (more like good luck) I managed to cut the sentence to only 20 days.
I had been given an expected admittance date of November 11th but like all things this was subject to change. Sure enough the day prior I received a call from the hospital informing me there would be no bed available that night. That gave me the chance to sneak in one final coffee with a couple of friends I have been meeting with each Wednesday. I think it makes it easier to cope with all that’s going on if you can maintain some sort of normal routine through treatment. Wishing them a Merry Christmas as the end of the coffee I assumed, given the extended recovery period for the transplant, that I wouldn’t see them again in 2020.
The following day I was to present myself at the hospital for a 10am admission. I had been told that for the first couple of days I would most likely be in a 4 bed ward. As spaces were still limited in the isolation rooms. So imagine my surprise when I was shown into room 17, as above. Not only a room without other patients snoring and farting, but also one with magnificent views. All this couldn’t quite overcome the dread factor that one person in fifty will die undergoing this procedure. Others will suffer horrific side effects and end up in ICU or spending months in hospital recovering.
The ward itself is only five years old. Having been completely equipped by private funding from wealthy ex patients. It had 15 people undergoing transplants in isolation rooms during my stay. It also has room for other Heamatology patients with a total ward capacity just over thirty.
Truthfully though I wasn’t here for the views with reality coming to the fore a short while later with the arrival of my nurse for the day. They quickly informed me that they had ordered the required chemo and would administer it once it arrived from the pharmacy. I should mention here that the protocol for my treatment was something known as BEAM chemotherapy. A mixture of 4 strong chemo drugs that would be given over the following 6 days. Thankfully the first days session would only take a couple of hours to administer.
Through 2020 I have endured 21days of chemotherapy prior to this point. On each and every day I had a new line inserted into one of my arms. It became harder and harder to find a useful vein with each attempt. It was nothing for the nurses to take five or six attempts towards the end of the year. So getting a PICC line (semi permanent) inserted into my arm was a major blessing. This would make the nurses job much easier over the coming weeks and save me from becoming a pin cushion.
They have an interesting way of counting things when you are going through a stem cell transplant. The first six days are considered minus days, with the first day actually minus six. So on the second day or minus five the chemo regime becomes a little more intense. Starting around 9am the second chemo drug is dripped into my arm over a thirty minute period. Then after a quick flush to the tubes the third is administered over three hours. But that’s not all or for the day 8.30 that night they are back to do the second drug for a further 30 minutes. Which by the time they have flushed the lines etc. Actually takes an hour or so. Repeat for days minus four, three and two.
I think you start to get used to the routine of hospital life very quickly. Everything revolves around a four hourly check up. Blood pressure, Pulse, Oxygen saturation and Temperature. Then just to spice things up at 4am they also take blood samples so the doctors have the results in time for their rounds. Sleep depravation whilst not total does become something of an issue and takes a bit to get used too. Of course it wouldn’t be a hospital without the gourmet selections for breakfast, lunch and dinner. I took this photo to show the quality of dog food being served on a nightly basis.
Day minus one was the day I was most nervous about. The administration of the chemo only takes 15 minutes via the syringe shown above. However the side effects of the drug are so powerful that you are required to suck on ice for thirty minutes beforehand and six hours afterwards. This will hopefully prevent mouth ulcers from forming leading to further complications. I say hopefully because it doesn’t always work. To start off the nurse gave me a lemonade iceblock quickly followed by another. I worked out that I probably would have gone through twenty or so iceblocks if I had continued at that rate so switched to ice cubes. Have you ever tried sucking on ice cubes for six hours? Anyway I got through that and hoped that I would avoid the ulcers.
Day zero rolled around, this is the big day when they would re-introduce the stem cells they had harvested from me back in October. They arrive in a container know affectionately as R2D2 although it could have also been a mobile rubbish bin. They are deep frozen to absolute zero and delivered packed in dry ice creating a bit of a show when the lid is removed. The cells are then defrosted in warm water and re-introduced to the body over a 15 minute period. A really interesting side effect of this was that for the following 24 hours I smelt like asparagus. Apparently this is caused by the preservatives they use with the blood products.
Now it’s a matter of waiting. The six days of chemo are designed to kill any remaining cancer cells within the body. This has the side effect of also killing all the stem cells within your bone marrow. Meaning that the bodies white blood cell count drops to zero and your ability to fight infection drops with it. The idea of the transplant is that the re-introduced cells will engraft themselves into your bone marrow and replace the ones that have been killed by the chemotherapy.
The doctor explained to me that there were two types of patients those whose white cell count fell off a cliff and those who dwindled. Turned out I was a dwindler and that was a good thing. As my counts slowly fell away I was allowed to escape the hospital for the night on day zero also on day plus one and two. Although I had to return each morning to have a blood test, general health check etc. The chance to be at home after only six nights in the hospital was a welcome break. Even though my appetite was beginning to disappear home cooked food was a significant improvement over the previous days. Not to mention the chance to sleep in my own bed.
Day plus three dawned with a quick visit to the big white telephone and the realisation that the side effects were beginning to kick in. I knew when I went back to the hospital that morning that I wouldn’t be spending that night at home. Sure enough my white cell count was down to almost zero creating a significant chance of infection outside the hospital environment. This is when the isolation room comes into it’s own. The room is run at a positive pressure so when you open the door the air escapes outwards, rather than sucking in germs from the corridor. Other than the nausea episode earlier in the day I still felt quite well.
Each day, early in the morning one of the staff would wheel in the weighing chair. Strangely enough this is probably the only time in my life that they didn’t want me to lose weight. The problem is that it’s not body fat you are losing but muscle mass, so that’s not really a good thing. In my case though I was secretly hoping I would drop below 100kg’s for the first time in years. (I actually did once discharged.)
The ward is really well set up, it even comes with a kitchen where you can prepare your own meal. It also has an instant hot water tap which I found useful for making a small plunger of coffee each morning to satisfy my addiction. Sadly on the morning of day plus four it didn’t taste right and I had no sooner finished the cup, than I was throwing it up again. This despite being regularly dosed up on anti nausea medicines. After the previous days effort it was a sign that the side effects of the chemo were beginning to kick in.
There are a couple of major side effects of the drug used on day minus one. Including the mouth ulcers I talked about earlier it also works its way right through your digestive system potentially also causing diarrhoea. Turns out I was lucky enough to be one of those blessed with this side effect. Spending quite some time during the night dealing with it’s symptoms in the bathroom. Waking the following morning I also discovered that although I had managed to avoid mouth ulcers at this point, it had begun to effect my throat.
Sarah came to see me that morning after what was a difficult night, taking this photo. It looks like I could barely keep my eyes open but in reality my throat was so sore I just didn’t feel like like talking. My voice had begun to sound like a raspy frog and little things like swallowing the morning pills had become harder and harder. This also made it more difficult to eat getting me into “trouble” with the nursing team even more concerned about my weight loss. I was encouraged to supplement my diet with various supplementary drinks that were available from the kitchen fridge. Easier said than done given the taste of the drinks or maybe it was just the continuing effects of the chemo.
That night, so day plus five/six the fever that the nurses had warned me to expect kicked in. With my temperature spiking at 39 it was time to administer anti-biotics on top of all the other medicine. Thankfully these could be administered through the PICC line saving my ever increasingly sore throat from attempting to swallow more pills. Sadly this new side effect didn’t diminish the diarrhoea making for an even worse nights sleep than the one previous.
That morning I gave up the battle trying to swallow pills or even eat my breakfast and agreed to have a feeding tube inserted. The only drawback to this was that my throat had become so enflamed that after 5 unsuccessful attempts a specialist was brought in from the ENT team. I had assumed that with the tube in place they would start the liquid nutrition straight away. But no, that’s not the case they feed you through the night.
As I mentioned earlier blood tests are taken on a nightly basis. Mine now showed that my red blood cell and platelet counts had dropped to unacceptable levels requiring a transfusion of each. Also my potassium levels had dropped away due the diarrhoea also requiring an infusion. I ended up connected to my new best friend (the infusion pump) for the best part of 72 hours including the overnight feeding etc. Still compared to the stories I have read and heard from others I got away lightly.
I ended up with the feeding tube inserted for five days. During this time morphine was offered on a regular basis to deal with the throat issues. I cannot say that I ever felt any hallucinogenic effects but it certainly was good at dealing to the pain.
Day plus nine and my white blood cell count started to recover. From being too low to count it now tipped the scale at 0.11 anything lower than that counts as zero. This was a very important milestone as the doctor had said that it shows that the transplant has worked. It also shows that the body is starting to be able to heal itself again. As the counts grow so does the ability to fight infection and sort out my throat.
The following day the white cell count was up to 0.47 still a long way from normal but moving in the right direction. However my platelet count had fallen below 10 meaning that my ability to heal the ulcers in my throat was just about non-existent. A transfusion of platelets followed along with more potassium, anti-biotics etc. Gradually all this stuff was beginning to have an effect and by the time day plus eleven rolled around I was feeling much perkier.
I had even suggested to the nurses that they could remove the feeding tube. Confident that I could eat enough to keep them happy. As it was a Sunday they of course wouldn’t do anything until they had clearance from the doctor or dietician. It was still an important day for me as I had realised that I had got through the worst and been effected much less than many others who undergo the same procedure. I knew within myself that I would be heading home that week. Sure I still had some rotten side effects such as the diarrhoea to deal with but I was on the improve.
Monday, which was day plus twelve saw the removal of the feeding tube. I cannot tell you how good that felt. The fever that had been spiking each night failed to make an appearance during the night confirming I was getting better. Tuesday morning, Sarah had arrived in time to be there for the doctors rounds. I had expected them to talk about the improvements that I was making and maybe that I would be going home Thursday/Friday. So we both just about fell out of our chairs when he told us he was happy for me to be discharged that day. It would only be an informal discharge and they would leave my bed available if I needed to return during the night. No way that was going to happen! They phoned me the following morning to ensure I was all OK and formalised the discharge.
So after 20 days I had made it through the stem cell transplant. Quicker than I had been led to expect and without many of the dreaded side effects that I had feared. I am truly grateful for the standard of care I received in Auckland hospital the nurses and doctors were amazing. Now I just need to hope that it has worked. I have a PET scan scheduled for the middle of January and will see the Heamatologist shortly after that for the results. Fingers and toes crossed. If you have read the story to this point, thanks so much for the interest and if you have any questions about the stem cell transplant please email me firstname.lastname@example.org
Since I got out earlier than expected and with less serious side effects I felt well enough to join my friends again for coffee on Wednesday. How nice to start to resume a normal life again. Merry Christmas and a Happy New Year. Lets hope it’s better than 2020.
20 thoughts on “20 Days In Solitary”
[…] As I said at the start the main purpose of coming here was to walk somewhere different. The three beaches that are most accessible from the parking and camping area gave me a decent workout. Walking the length and back again on such a gorgeous day went a long way towards erasing memories of three weeks in hospital. […]
Thank you for sharing your journey with us Chris. Your realism and positivity along with Sarah’s steadfast love and support is to be admired. Enjoy your Christmas and next year will be a truely new beginning with a bunch of new stem cells and many new adventures. Jan and Peter
I think I could use some stem cells, as I have Christmas on the brain and called you Chris instead of John 🤪😀 my apologies
Many thanks Jan. I hope you and Peter have a well deserved break and an amazing 2021. I look forward to being able to catch up complete with new stem cells sometime in January. Have a great Christmas
This was an amazing read. Thanks for posting it and all the very best for the future. We may see you out on the road some day.
Thanks, Jo. I certainly hope to be back out on the road in 2021 catching up with lots of people. Have a great Christmas and a Happy 2021
My goodness, what a journey you have had. It was certainly rough, but aren’t we lucky that such facilities, expertise, and caring staff are available here to look after patients. Thanks so much for sharing. Wishing you both a restful and peaceful Christmad,
Jenny and Robin, Romamy Rambler
Many thanks, Jenny and Robin. You are right the staff here really make a difference. I don’t know how I would have coped with a series of battle axes in and out of room. Wishing you both the best for Christmas this year and lets hope that 2021 is a better year than this one
Thanks for sharing your story John. I’m so pleased that your treatment went as well as you had hoped for. And I wish you all the best with your follow-up test results in January. Safe travels and Merry Christmas to you and Sarah.
Many thanks, Kevin. Yes I am looking forward to 2021 in a very optimistic way. Also a Merry Xmas and Happy New Year to you and yours
Keep positive and try not to stress. Look forward to hearing your news in 2021. Its going to be a good year.
Many thanks, Carol. Looking forward to nothing but positive news in 2021
It sounded really tough John. Thank you for sharing. May you and your family have a comfortable and relaxing Xmas and you even get a break away in your motor home.
Many thanks, Prue. It was tough at times but honestly I got away lightly compared to many. The motorhome is ready to go but will leave the peak holiday madness to others and get away once I have clearance in January.
How brave of you to share and face this gruelling experience. Your courage and openness are inspirational. My very best wishes accompany you and Sarah as you continue to gain strength.
Thanks Adriana. I find it very cathartic to write about the experience so to be honest I do it for myself but am glad that others get something out of it as well. I could not have got through without Sarah’s steadfastness alongside me.
A very interesting read about a treatment I know little about (and hope I never need). All the very best to you both for a successful pathway forwards and hope to catch you on the road.
Many thanks, Chris. Yes after a tough 2020 we hope to be back on the road enjoying life in 2021. Looking forward to getting a clearance in January.
Great to hear that you are on the improve John, best wishes to you and Sarah..
Regards Neale and Kay.
Many thanks, Neale. It’s been a bit of a tough 2020 but hopefully as we head into 2021 things are starting to come right and we can start planning our next motorhome trip. All the best to you and Kay for the festive season ahead and maybe as you say we will meet on the road in 2021