4 months on – The continously delayed update

by shaysemmens

Apologies for the delay here. I guess when you’re not stuck at home or cooped up in bed or on the couch anymore it’s easy to put this kind of thing off.

More importantly, despite this blog being about my own experiences through treatment and recovery from Hodgkin’s Lymphoma, it was never supposed to be about ‘me’ as much as the general experience, so that others could take something away from it without it being too bogged down with my own individual experience. So I could have made blog posts about returning to work and all that fun/boring stuff, but it would serve this blog and its intended readers no real purpose.

That said, there still is a fair bit to update, so no more delaying. Enjoy.

Update #1: Chemo Side Effects

While my chemotheraphy sessions and after-effects were relatively easy-going (compared to how they could have been) there were a couple lasting side-effects.

I write ‘a couple’ because I count them as separate things, despite the fact that they were/are both caused by Peripheral Neuropathy.

Side-effect #1: Numb fingers

I have written about this before, but it’s worth mentioning that the numb sensation on the tips of my fingers relented for about 2 months after my final chemo dose, before finally disappearing completely. I’m happy to say I’ve had no tingling sensations in my fingers for at least a month now.

Side-effect #2: Hand cramps

Apparently a less common symptom of peripheral neuropathy, is muscle cramping. These cramps occured solely in my hands, happened entirely at random and could be fairly severe. I could be in the middle of just about anything and suddenly one (a couple of times both) of my hands would seize up, and I’d have to use the the other hand to massage it back into a usable state. My hand would return to normal within seconds, but it could be a rather uncomfortable and alarming sensation. This cramping didn’t happen during the chemo, and only started after I had finished, so it was like some sort of unwanted farewell present. The time between cramps has being growing longer and longer but I still can’t say for sure that it’s gone away even now, as the cramping lasted far longer than the numbing sensation the neuropathy originally gifted me with.

Apart from that though, my body has largely returned to normal. Maybe I get tired a little easier than before, but maybe that’s just me getting old or being entirely unfit.

Update #2: Exercise Electrocardiogram

Prior to the cancer officially being re-diagnosed, I had had pretty severe chest pains a few times over a 6-12 month period. After being told that my body ‘should tell me’ if something is wrong, I realised that this was probably part of that. So when I randomly had the same pain hit me about 2 months ago when heading out to the movies, I was a little alarmed. Due to this, my doctor booked me in for an exercise electrocardiogram. If that sounds super fancy to you, let me change your perception and show you with a GIF exactly how I looked earlier today:

In the lead-up to this test, I wasn’t worried. I figured I was probably fit enough not to embarrass myself in a test that is performed by old people and (I assume) people with injuries. However, I randomly woke up with a pulled groin muscle this morning and could barely lift my leg, so I knew this was going to be an interesting time.

I walked into the room with a bed, a treadmill, and a whole bunch of computer screens. I was told to take my shirt off and had a billion things stuck to me (I wasn’t joking, I really did look like that gif above) before being told to lie on a bed. An ultrasound was then taken of my heart in a resting state, and then it was treadmill time. The treadmill starts off super slow, which gave me a strong ‘this is pointless’ impression, but every 30 seconds it sped up and inclined slightly. By the 9th minute I was kind of dying. My groin was killing me, I was in desperate need of a drink, and my legs had had enough. We called it quits and I was told I’d done really well (which I’m sure was a sympathetic lie). I then lay back in the same position on the bed and we took more ultrasounds, being told to hold my breath (quite difficult after the struggle I’d been through) repeatedly while they looked at my heart. I was told pretty much straight away that my heart was fine, which I had expected (this test was really just precautionary), so that was nice.

I didn’t get a photo of me shirtless, because no one wants that, so instead, have a photo of the treadmill that was almost my downfall.

Update #3: Preventative chemo

Probably the most important update, though, is that I am now going to be having ‘preventative chemo’ every 3 months for the next 2 years. The doctors wanted to give this to me, given that the cancer had already come back once (and with a vengeance) but it came down to the hospital and drug company deciding whether they would pay for my treatment (because paying thousands of dollars myself would be less than ideal for me). Fortunately, it was determined that the hospital would be able to foot the bill.

At first this seemed pretty tragic. Chemo isn’t a great experience, and it was finished. Being told that I could look forward to continuing it for 2 more years was a bitter pill to swallow. That said, there’s a reason for it. And at the end of the day, being told you are going to have preventative chemo is better than being told that your cancer has returned. Plus, in truth, it isn’t really ‘chemo’ anyway. I (and they, apparently) are calling it that to simplify things, but it’s actually just Rituximab – one of the 4 drugs that was given to me as part of R-CHOP chemotheraphy, but the one which isn’t ACTUALLY a chemotheraphy drug. There aren’t supposed to be any side-effects. No hair loss, no vomiting, no tiredness… though there can be a little bit of ‘flu-like symptoms and an extremely short-lived rash which I experienced during my first chemo cycle. To give you an idea of how short-lived that rash was though, it was gone as soon as the drug stopped being pumped into my blood.

Having had the first dose of this, I didn’t feel great directly after, but I’m not sure if this was just my body automatically going into ‘tired mode’ because it was expecting full-blown chemo, or if it is a little worse than they make it out to be. That said, I was only tired, which is nothing that some rest/sleep can’t cure. It was hardly full-blown chemotheraphy horribleness.

So I can really only feel thankful that this is part of my yearly routine now. 3 times a year, I sit in a chair and undergo ‘chemo-lite’ (which is what I prefer to call it over my housemate’s HORRIBLE name for it, ‘Baby’s first chemo’). And those 3 times a year make me less likely for the cancer to return. That seems like a good deal to me.

Update #4: Hair loss/regrowth

And now for the update that everyone REALLY cares about: My hair.

I’d say about 3-4 weeks after my last chemo, I was forced to shave my head again, as my hair was about half an inch long but kinda… thin and not great. After that, it grew back as could be expected of anyone with a shaved head, except for one difference – it was like the top of my head was covered in BABY DUCKS. IT WAS SO SOFT AND FLUFFY AND AMAZING. This could be seen as another positive to hair loss (as covered in my previous blog post) but that really depends on whether or not you want EVERYONE rubbing your head. Because that will happen. All the time. Because your hair will be amazing and soft.

Hair pic

It’s back. It didn’t go curly like everyone said it would. It didn’t change colour. It just came back, relatively quickly, to the way it always was (perhaps, with this added softness, better than ever). So if you’re stressing about losing your hair, just remember, it probably won’t be permanent, it might not even be for very long, and when it’s back, you’ll get to spend weeks rubbing your own head with joy.

To conclude…

For the reasons discussed at the start of this post, it might be some time before I update this blog again. I hope what you’ve read so far has, or will, help you either with your own struggles or understanding what someone close to you is going through.

Take care, and stay healthy.