Hodgkin – Dan's Hidden Jotter

Long time! 2-for-1 chemo special

Hello, me again, long time! We left off last time having had my first chemotherapy session and me telling you about the weird and wonderful side effects I’d been feeling.

Since then I’ve had two, count ‘em two(!) more doses! Time flies when you’re employed but on long term sick leave. Let me give you a quick run-down of the last 3 weeks since then:

So I had the second lot of chemo on Tuesday 28^th September. It was largely uneventful. The chemo was scheduled to take place at 13:00, but due to pharmacy-related delays this was pushed back to around 17:00 ish. I’d come in to the hospital that same morning to get some blood’s done at 11:00 and I eventually got home at around 19:00.

The chemo itself went pretty smooth, a bit of a sting in my hand but nothing unbearable. I did strike up a nice conversation with the lady next to me (I want to say her name was Brenda or Barbara), so that helped pass the time quite well.

Side effects wise, I was relatively fine for the next two days. On the Thursday night and then on Friday however I did begin to feel quite uncomfortable around my mouth. My teeth were hurting, my gums felt week, and the sides and tip of my tongue had a slight burning sensation. Although this pain wasn’t unbearable, it was constantly there during the day, making it harder to eat and even sleep at night. Even water felt unpleasant as it went down my gullet.

On that same Friday, as I was sat on the sofa in the evening, I began to notice some pain on the left side of my chest. The best way I could describe this was that it was a ‘pinching’ pain that hurt every time I took a breath. The deeper the breath, the more pain I felt. After a quick once over from my brother who was at hand, I rang the hospital and gave them an explanation. They asked me to come down the same evening for further examination.

The plus side with being a cancer patient is that I didn’t have to go through the ordeal that is A&E, and as soon as I got to the hospital I was shown into my excessively large room for the night. Funnily enough, the chest pain was brought on in the evening and had lasted a fair bit of time before I rang the hospital, but by the time I was eventually in the car and en-route, I’d noticed the pain had miraculously vanished. Nevertheless I still spoke to some doctors at around midnight, had my bloods taken shortly after and was then taken in for an x-ray at what must have been around 3am.

I’d tried to steal as much sleep as I could during the night but the mouth pain was making this a near impossible task. I eventually did dose off and was informed by the doctor in the morning that all my tests had come back A-OK. The pain that I’d felt in the chest was most likely muscular, and not the result of blood clotting or anything more sinister. I was also given some paracetamol and 3 different mouthwash’s to help with the discomfort.

That was probably the most interesting thing to happen to me in the last few weeks. I’m pleased to say that the mouthwash’s worked like a charm and my mouth felt back to normal within the next day or two.

Around this same time I’d also noticed that my sleeping pattern was getting much worse. It’s difficult to say whether this insomnia was a result of my own sleeping habits, or a result of the treatment, but I’m confident that the treatment has definitely made it worse.

I tried in vain for a few nights to put my phone away and sleep at a respectable hour, but the only thing this accomplished was to have me tossing and turning all night until I eventually had to get up and go on my phone or watch tv. In the moment, nothing feels worse than desperately trying to go to sleep and getting increasingly frustrated by not being able to do so.

Nowadays I’ve come to accept this and am quite content with staying up until silly o’clock until I naturally tire. Since I don’t have work to go to right now, it isn’t the worse thing in the world to sleep in to the afternoon each day.

Anyhow, fast forward to this week and I’ve had yet another dose of chemo on Tuesday 12^th October. Although the cannula did hurt a little more than usual this time, the actual chemo was pretty uneventful once again. I’ve felt completely fine the few days after this but have noticed some slight discomfort in my jaw and teeth (here we go again) earlier today. Surprisingly for me, I also felt incredibly tired at around 18:00 this evening and nodded off for around 4-5 hours.

I’m hoping the tiredness and mouth discomfort is a bit of a one-off, but we’ll see how it is once I eventually sleep and eventually wake up again later today. But enough about me, how have you been????

Side effects and the holiday blues

It took just over a month, but Dans hidden jotter is now officially Daans not-so-hidden jotter (badum tish). Thank you Instagram. I’m contemplating whether or not to write this post, on account of the blog being suggested to people I know in the real world, but I think I’ll carry on anyways. As the young people say on tiktok; if you know me in real life, no you don’t.

I was discharged from the hospital on 15^th September, and I’m finally feeling some sort of reaction from the first chemo-sesh. The overarching side effect isn’t exactly one of the sexy ones however (I’m looking at you, hair loss) but rather just plain old fatigue. As well as laying down more than usual (which is saying something!), I was surprised to see how a normal and pleasant conversation earlier in the day left me tired and needing to rest my eyes.

Another by-product of the chemo is that I seem to be noticing other minute changes to my finely-tuned bodily equilibrium. This is definitely a dangerous road to go down I know, but so far I have noticed the following:

A tiredness (for lack of a better word) around my jaw and teeth. Don’t ask me how teeth can seem tired because I don’t have a clue.
The increased need to crack the bones in my fingers, as well as the faintest feeling of weakness in the bones of my hands.
A papery / tingly sensation at the ends of my fingertips.

Another unexpected complication over the last 2 days has been a sudden wave of sadness that seems to have washed over me. I haven’t felt the need to cry since I was first told of the possible lymphoma over a month ago, so I was quite surprised to find tears in my eyes whilst I showered this morning. For the rest of the day I felt like I could cry at any moment, and sure enough I did, especially when I sat down to pray and also when I was shown affection from my parents.

Annoyingly for me, I can’t quite decide whether the tears are just long overdue, whether they’re a product of the medication I’m on or because deep down I was missing the hospital, the routine and the people that I’d come to know over the last few weeks. I suspect that the sadness is due to a combination of all of the above, and I’d be lying if I said the last reason wasn’t weighing on my mind. There’s a tragic story of unrequited love buried in there somewhere but I won’t go into that.

I’m curious as to how my body will react further to the chemo that was given earlier this week. A part of me can’t help but look down at my hands and feel that this is the start of some deteriorating process, but despite the sheer grimness of that thought, I’m still feeling positive. Overall I’m glad to be home, I’m pleased that everything’s under way, I’m surrounded by family and I have future appointments planned at the hospital.

I’m also confident that a little time will be all that’s needed to heal whatever sadness remains.

As always, signing off with peace and love

Daan

First chemotherapy session – Completed it mate

This post comes to your screens relatively late, since I had my first chemotherapy session on 14^th September, but how can I have a cancer journey blog without journaling how the very first experience went!?

As I mentioned earlier, the news that I’d finally be having my first chemo session was ever-so-slightly daunting, considering it had always seemed weeks away in my mind, but overall my main feeling was of relief to finally get the healing process under way.

If I cast my mind back a couple days – Tuesday 14^th September started like any other – with observations being done at the usual convenient time of 06:30. The only difference being that on this day I’d ordered myself an actual semi-hearty breakfast for once, essentially ordering a full English without any of the meat or eggs. This was a nice change from the usual bowl of crunchy nut cornflakes, or no breakfast at all, that I’d been enjoying thus far.

Since I still had a little bit of covid left in me (2 positive and 2 negative swabs), I was to be taken to a dialysis ward in the hospital, where a make-shift chemo centre had been set-up for others like me. The 2 nurses running the ward had seen patients in this space before and administered the chemo, but this was the first day they’d ran a proper clinic from the area. As expected there were a few bumps in the road, but these were all pretty minor, such as not knowing where certain bits of kit were or having to leave and get little things brought up to them from their usual place of work.

The make-shift chemo ward with my guardian angel in the corner there

Despite being somewhat disorientated, I have to commend the nurses whose names I didn’t get (one of them was possibly Sarah?) for making the whole experience surprisingly comfortable! I’m pretty sure they both worked later than they should have and definitely missed their own lunch breaks as a result. Some heroes really don’t wear capes, but still manage to provide you with a nice bed, a cheese sandwich and some water.

The actual chemotherapy was rather, dare I say it, underwhelming. In my mind I saw it as just yet another IV drug session, of which I’ve had many by this point. The course of drugs being administered to me are AVD; two of the drugs were pushed through the cannula via a syringe, with the third being hooked up to a bag and pushed through over the course of around an hour to an hour and a half. This particular chemo drug was kept in a light sensitive bag which was new.

Look at that fresh cannula! Isn’t she lovely..

Although it wasn’t exactly painful, the third drug definitely caused a stinging sensation in my hand at times as it went through. It was a bearable burning sensation, but the nurse placed my hand in a heated pack throughout which really helped to balance this out.

I wish I’d written down which drug it was, but one of the first two drugs left an interesting tingling sensation around my lower crotch area. I was told this might feel like sitting on a bush of nettles, and I have to say that was the perfect way to describe it!

The entire process lasted around 3 hours, and before I knew it I was being wheeled back to my home ward, along with all of it’s creature comforts that I’d previously taken for granted. It’s been 2 days now since then and I’m almost nervous to say that I haven’t felt a single side effect of the chemo so far. In fact I was feeling so fine after that first dose that I even logged into my laptop, cleared my personal inbox (3,000+ e-mails) and did some much needed life admin.

In the back of my mind I know that this period of no side effects can’t last, but I’ve decided to enjoy the good times while they’re here and deal with any of the negatives as and when they come.

Famous last words I’m sure.

Since the chemo went rather well, and since I’m no longer feeling nauseous or feverish, I’ve now been allowed back home. I was therefore finally discharged from the hospital yesterday evening, 15^th September, and I bring this news to you from the nook under the staircase in my home. Maybe I’ll take a photo of the nook in the morning and insert it here.

Feel free to interact with the post whichever way you choose, and as always, I’ll send you off with

Peace

And

Love

Xoxo Daan

What’s that coming over the hill. Is it the chemo?

Another 2 week gap since posts, but this time the gap’s been somewhat eventful.

Firstly, and most importantly(!), I did eventually buy a skateboard! It’s an Enjoi complete 8.0” Helvetica Neue deck in a beautiful aqua for those interested! I’ve learnt how to push and roll so far but can only stop by launching myself off the board and running alongside it. I’ll get there eventually!.. Probably.

But 2 weeks on from my last, and in my mind quite dramatic, post I now find myself back in the same ward I was discharged from almost a month ago. Home bittersweet home. Although I was fine when I left the hospital, I eventually started becoming more and more feverish. Starting off with one fever a day, and gradually evolving to the point where my temperature was spiking every 4-5 hours, with temps sometimes creeping over 40 degrees.

After making a few phone calls to the cancer nurses, and receiving weekly positive covid test results from the walk-through centre, the doctors finally called me into the hospital on Thursday, 2^nd September. Long story Long, the general consensus was that the fevers were most likely being caused by covid as opposed to the lymphoma (the reasoning being that lymphoma fevers don’t tend to run that high). The course of action therefore became to treat the covid before chemotherapy could start, thus preventing that pesky little side effect of death, I suppose.

I began a course of Meropenem antibiotics to tackle a high infection marker (CRP) found in my bloods. I also started a 5-10 day course of Remdesivir (which always brings the image of Donald Trump to my mind when I think of it) to treat the covid.

I was then finally given the long awaited news, which was, drum roll please..

… The chemotherapy should be starting next week fingers crossed, with a provisional date given to me of Tuesday 14^th September. Insert crowd cheer here.

The news was a little bit of a shock since chemo has always been 2-3 weeks away in my head due to all the roadblocks, but on the whole it is of course very welcome. The real treatment can finally be kickstarted. The show must go on.

Anyways, fast forward to the 11^th of September and so far I’ve had / have started the following:

4 covid swabs. 2 which came back negative (woo!) and 2 positive (boo!).
A 10 day course of Meropenem antibiotics.
A 5-10 day course of Remdesivir.
A high dose of Prednisolone steroids, which is used both for covid and chemo.
Anti-viral and prophylactic antibacterial tablets, to be taken before and during the course of chemo. Conveniently I’ve forgotten the name of both of these.
Allopurinol tablets, typically used to treat gout (gout??) but in my case given to counteract some of the effects of the steroids.

There’s also the small issue of fertility which thankfully should no longer be a problem, since the clinic has kindly decided to freeze my sperms despite the positive covid test results. Perhaps I’ll make a separate post about that later.

This morning’s pills n potions. Plus a sneak peak at my hospital view.

But all in all I’m currently well and truly pumped full of drugs right now, and raring to get go.

Thanks as ever for reading. In the words of every youtuber that’s ever lived, don’t be shy to comment, like, share, or dare I say it.. subscribe!

Lots of love,

Dan