post – Dan's Hidden Jotter

Searching for a hobby

Shorter post than normal. It’s almost 04:00. The weekend’s drawn to a close. I definitely need some sleep. So of course, what do I do? I pull out my laptop and attempt to write a blog post.

I currently have a few things on my mind whilst I wait for a plan of action from the doctors, and one of the least pressing ones (which incidentally takes up most of my thinking) is that I should find a hobby to start during the chemo process!

Perhaps a little back story on me that you don’t really need, but I have been known to occasionally over-hype potential new hobbies. I’ll watch hours of Youtube videos for said hobby, spend way too much money acquiring the necessary equipment and then finally won’t really go through with it.

But this time it’s different. I can feel it. I can feel it in my enlarged lymph nodes.

The hobby in question is skateboarding. I’ve never skateboarded before, I’m not sure how much balance I naturally possess and I’m not overly keen on grazed knees. It seems pointless asking this question since I don’t think anyone will read this to answer, but is this a little silly? I’m low-key conscious that I’m 27 and maybe a little old to start, so I really need someone to comment below and tell me otherwise.

I have no idea how taxing the chemotherapy will be on my mind and body, and perhaps I’m not giving it the respect it deserves. To re-cap; the chemo will ideally last 6 months, with visits to the hospital once every 2 weeks to be IV-fed some drugs. On the other hand however, it is recommended that I try and remain active throughout.

Is chemotherapy really the right time to be starting skateboarding? Is it silly to start an activity which involves falls and grazes? Will I even have the energy throughout chemo to try and learn how to do it?

A lot of questions. Any answers/insight would be much appreciated.

If I was to set a goal, it wouldn’t be to learn any crazy tricks/flips, but rather to be comfortable on a skateboard. Comfortable enough to cruise around, force someone to record me from their car, stick some indie music in the background and post a video to Instagram/reddit. That isn’t too much to ask for right??

Other potential hobby ideas were to learn a new language (though even the thought of that pre-chemo is slightly tiring) or perhaps take up drawing/painting. Skateboarding however keeps cropping up as the number 1 contender in my mind so far.

Shall I go ahead with it? Do feel free to leave a comment below with your thoughts or experiences.

Peace and love,

Dan

A love letter to the NHS

Day 25 and I’ve finally been discharged from the hospital. I almost can’t believe I’d spent the last 25 days confined to a room without losing my mind. It also felt weird stepping out into the ward and then even further out, into the outside world. The place where germs are born.

I’ve left the hospital with a vague-ish plan of action. The 2 items to tick off pre-chemo are the PET-CT scan and the freezing of the sperms, but thanks to my constant positive Covid testing, this may be somewhat delayed. I’ll hopefully have a phone call next week with an update, so watch this space!!

I think I’ll use this post to publicly, to all 4 of you viewers, share my appreciation for the NHS, and more specifically the people that make it up. I’ve genuinely met some lovely people over the past 25 days. I’ve had chats with porters, cleaners, healthcare assistants, radiographers, nutritionists, physios, food-bringing ladies (not their official job title I’m sure), nursing students, nurses, doctors, consultants and others that have momentarily slipped my mind.

I spoke to one nurse about her upcoming marriage plans, and the struggles of telling her dad about how she met her partner, and to another about the awkwardness of not getting along with her new sister in-law. One of the cleaners showed me her Disney-OBSESSED kitchen and various tattoos. A healthcare assistant spoke to me about how she’s still playing Pokémon Go and remains the gym leader in her area after all this time. One of the physios told me about his own chemo experience as a child and reassured me that my hair would grow back nice and soft, whilst another nurse regaled me of her travels from Ethiopia to Rome to Texas and finally to the UK. The ward manager waited with me for a couple hours whilst I had my biopsy done and even the doctor kept me talking about my job to distract me from the needle entering my spleen.

I’m grateful for each and every person who took the time out of their busy day to just stand around and chat. They may have been pressed for time with other tasks, but they rarely let that show and I appreciate that.

I was fortunate to have my own room for the duration of my stay, as well as an upgrade partway through, but it was the niceness of the staff that contributed the most to a surprisingly pleasant visit. So pleasant in fact that the news that I’d be going home was almost bitter-sweet, and I’m writing this now with a touch of the post-holiday blues. I’m not sure how many people can say that they miss their stay in hospital, but I’m one of them. Either I miss the hospital or I just really miss having a bed that reclines. Who knows.

Having said that (just in case my family read this), it is great to be back home. I certainly won’t miss the daily tummy injections (to prevent blood clots) nor the routine observations at 7 in the morning. It’s also quite nice not having any line going through my vein. By the end of my stay I had such an itch at the site of my cannula that I didn’t even mind pulling the sticker, and a tiny bit of hair, off my arm. It was, dare I say it, actually quite satisfying. I also won’t miss paying just over £30.00 for a weeks’ worth of useable wi-fi.

You’d be lying if you said you didn’t want to itch that!

So this is my love letter to the NHS, and to all those who work therein. Seeing all the staff working together like clock-work to keep everything ticking over, it’s impossible not to appreciate the NHS for the well-oiled machine it is. May that machine continue running for years and years to come.

Peace and love,

Dan

D-Day

23:25, Tuesday 10^th August 2021. Apparently I can’t write a post without first stating the exact time I started.

We left off early this morning with the hope that a diagnosis would be coming at some point during the day. After publishing the blog post yesterday I read some lymphoma stories and was so sure the upcoming news would hit me hard. Up until this point I’ve been mostly positive, haven’t gone down any internet worm holes and have generally stuck to reading material on trusted sites (NHS, MacMillan and Lymphoma Action). So I think I was finally ready to break down.

The day started routinely, my respiratory consultant didn’t have major news for me, just that they’d continue giving me antibiotics for the time being so that if treatment was needed, my chest would be in tip-top shape for it.

My brother arrived shortly after with some home food and gifts from friends (slippers, a 6ft USB-C wire and a really nice journal) and from then on it was essentially a waiting game until the Haematologist arrived.

I had a long overdue shower and donned a Barcelona top which was kindly gifted to me by one of my cousins. I was ready.

The look of a man who’s ready for some news.

The Haematologist arrived mid-afternoon and asked me what I knew so far (see previous post). She then went on to confirm that yes, I did indeed have a Lymphoma. *Cue the dramatic squirrel music*

Truth be told, this didn’t really hit me at all! Maybe it’s because I’d already convinced myself of the outcome, or maybe it’s because she instantly went on to give me more information, but no tear was shed. There was a strange feeling in my throat at one point but this swiftly passed whilst I focused on the info at hand.

The Lymphoma in my body is specifically a form of Hodgkin Lymphoma, which is common in the early 20’s (I’m 27 but probably 24 at heart), and more specifically it is Nodular Sclerosing Classical Hodgkin Lymphoma, currently at Stage 3.

I’d like to note that the consultant didn’t dwell on the news too long, and barely even paused after confirming the diagnosis. With an up-beat attitude she went straight into info mode, and her confidence in the treatment options available really radiated with me.

She spoke about how this type of cancer has a really good outlook, and how the majority of patients can fight it off with chemo without it returning. She covered so many of the questions I’d proudly pre-prepared; the chemotherapy would last ideally 6 months, with drugs being delivered once every 2 weeks for 12 weeks. 2 Sessions make up a cycle, so that gives 6 cycles in total. The drugs in question being Doxorubicin, Vinblastine and Dacarabazine (AVD for short).

She covered the side effects; hair falling out, nausea, fatigue etc.. Thankfully however I’d already read up on this beforehand and had my head around it. The beauty of waiting 2 weeks for a final diagnosis.

All in all the consultant was extremely helpful and of course incredibly knowledgeable. She answered the few questions I did have left, specifics about the hair falling out, questions on isolation as well as effects on fertility (sperm bank here I come) and finally gave a rough idea of a plan going forward.

The fact I’m still testing positive for covid complicates matters somewhat from a logistical point of view, but the next steps are pretty much to visit the sperm bank and get a PET scan, before starting chemo. It’s likely the lymphoma was bubbling away for the past few months, so a delay of a couple weeks before treatment should be no big deal.

To conclude, I’m feeling positive about the chemo and crucially so is my family. Onwards and upwards! Here’s to the next 6 months of isolation, and living life in hermit mode. Essentially a dream come true.

If you managed to get this far down the post then please do leave a comment! I’d love to interact with anyone, whether you’ve been through a similar process or not.

Signing Out. Peace!

Dan

Lymphomaniac

It’s 03:23 on Tuesday 10th August. I’m currently on day 21 of my stay in Hospital, and you’re probably wondering how I got here right??

To cut a medium story short, I tested positive for Covid-19 in early July, and started having symptoms pretty much straight away. Dry coughs, constant fevers and a nice helping of nausea to top it all off.

I came to A&E on 20th July with Covid as well as another chest infection. Had some X-rays, Blood Tests, IV Antibiotics and after all that I was still discharged. Or so the doctors had thought. Thankfully no one had sought to tell me to pack my bags so, much to the doctor’s surprise the following morning, there I was.

View from the hospital on my first night

The hospital wasn’t ready for this much drip..

Finally, I had a CT scan, and on the 28th July was told that I had enlarged lymph nodes in my chest and spleen, with a good chance of this being a Lymphoma!

I never thought covid could be a blessing but there you go.

Fast forward a few days to 2nd August and I had my much anticipated spleen biopsy. The results can usually take 1-2 weeks to come through, but I have it on good authority (the doctor’s) that this should come through tomorrow. Actually, it’s currently Tuesday morning so, today!

And that’s all of you pretty much up-to-date on my life. In fewer than 12 hours I’ll probably have confirmation on whether or not I have the dreaded C-word.

So stay tuned! And together we can navigate these Cancerous seas aboard the SS Lymphomaniac with our glasses half full and our heads held high.

I should really get to sleep

Peace and love!

Dan