Health – Dan's Hidden Jotter

General update, and first Haematology appointment

Hello world,

So it’s been a week since my last post, the perfect time for an update!

I previously mentioned feeling side effects to the chemo, namely fatigue, tingly fingertips and a tired jaw/teeth. These were all seemingly minor in my eyes but I was advised to give the hospital a ring just in case. I rang the switchboard number (since it was a Saturday), and was transferred through to one of the oncology nurses. She conferred with the doctor and thought that I should come in to take a blood test. Amongst other things, the blood test would show if the electrolytes in my system could be out of balance.

Although the tinglyness is a known side effect, I was told that this was slightly rare with the current treatment that I’m on (AVD Chemotherapy). And so I went to the hospital the same day, was taken to a nice waiting area with recliner seats (I do love anything that reclines to be honest) and had my observations and bloods taken. Simple as that.

Look at that subtle colouring. That tasteful thickness. Oh my God, it even has a dual-button remote.

The hardest part of the experience was having a coffee machine in the room but not having a clue on how to actually use it. As I sat there waiting for my results over the next few hours, I couldn’t help but feel it’s judgmental and taunting stare. If I don’t return to that room and drink a cappuccino, I know I’ll never have closure.

You can literally feel the smug aura surrounding this machine

One cheese sandwich, a cup of tea and a few hours later, the doctor finally arrived. He did his own tests before telling me that my bloods were all fine. He advised me to mention these side effects at my next oncology meeting, but he was confident that I could return home. I too shared his view, and not just because I knew there was a chicken burger meal waiting for me on my return.

Fast forward to Thursday, and I again visited the hospital, but this time for a planned meeting with the Haematologist. He was pretty pleased to see that I’d been doing fine, minus the side effects I’ve already mentioned a couple hundred times. He wasn’t worried about these, but did say to keep an eye on the tingliness (which is still here) in case it gets worse. Apparently the feeling should go away once chemo ends, but there’s always a chance that it may not. If this looks to be the case then some of the drugs can be altered slightly as we proceed, which is quite reassuring.

He had further reassurances to give, as he explained that patients tend to find the first and second chemo sessions the hardest. People who start off well, he explained, have been known to feel that way (relatively speaking of course) throughout. Fingers crossed I’m in that category, though he did add that the fatigue will probably worsen.

He confirmed that the second chemo will be going ahead as planned on Tuesday next week, and also that I’d have a PET scan after my fourth dose (and second cycle) to review the progress. For those that are interested, he also told me that it’d be fine to have a flu jab, but advised that I get the booster or 3^rd covid vaccine after the chemo is over. He explained that, whilst I could get the jabs now, they wouldn’t be as effective due to the chemotherapy suppressing my immune system.

Even without having any scans, I’m feeling very confident at this stage. I’m super thankful that I haven’t experienced any nausea or fevers so far, and I’m eating and drinking as if I’m completely well. What’s more; the lump by my collarbone, which has been living there rent-free since June, has also vanished. I didn’t even get to say goodbye.

And finally! For those that read my last post, I’m pleased to update you on the fact that my post-hospital-holiday blues have vanished along with the lump in my neck. I’m back to being completely fine at home, and getting way too used to my unhealthy routine of sleeping at 6am every night.

Roll on Tuesday, and roll on next week.

Peace!

Pre-chemo roadblocks

It’s been a week since my last post, but that’s down to the fact that nothing much has really happened. Up until a couple days ago, the 2 bits that I needed to tick off pre-chemo were the PET scan and the visit to the fertility clinic. The fact that I was constantly testing positive for covid (most recently last week) however meant that this would be delayed.

A few days ago I rang the nurses as I was concerned with an increase in fevers. The doctor then rang and let me know that, due to the positive covid result, I wouldn’t be having a PET scan. This isn’t an issue however as the original CT scan contained enough detail to start treatment. He then informed me that the fertility clinic would not allow me to visit whilst I was still covid positive.

This last part was news to me. During the call, I didn’t react strongly to this, and neither have I since. I am acutely aware however that this is bothering me deep down, and the reason I haven’t fully reacted is because I have a knack for placing heavy topics to the back of my mind and under the rug.

I therefore hope that writing this blog post will force me to focus on the issue and properly think on it. The doctor did say that there’s only a small chance that AVD chemotherapy can cause infertility, though he went on to add that the likelihood may increase if further treatment is needed.

Those words sound so final to me as I repeat them in my head, and of course my brain is currently dwelling on the worst case scenario, infertility. Although I don’t see kids in my immediate future, the thought of not being able to have them is weighing really large in my mind. I love kids. I have 2 nieces whom I love to bits and the thought of not being able to have any of my own someday is extremely saddening.

This news almost seems worse than when the doctor first told me about the possible lymphoma in my body.

I went for a PCR test yesterday and am really praying that I finally see a negative result. This would make life so much easier. If I do test positive however, I’ll have to speak to the doctor again and re-discuss.

Future plans would then be to contact the clinic myself, contact other hospital clinics or maybe even look for private options.

Thankfully treatment can safely be delayed by 2-3 weeks, so maybe that means I’ll have a few more chances at doing covid tests, but fingers crossed I won’t need it.

Failing all else, I’ll just have to proceed with the treatment and put my trust in the odds. There’s a Hunger Games line in there somewhere. Stay tuned for updates.

Peace and love,

Dan

* Featured Photo by Travis Saylor from Pexels *

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