Hi Everybody,
It’s been a couple of weeks, I thought I’d put an update out and let you know how I’ve been getting on.
In short, Round 3 was pretty uneventful really. I had to ask friends who were coming to visit to delay their visits if they’ve been around ill people or have had so much as a sniffle.
This has caused me to be a bit of a hermit of recent. Though Kerry and I have ventured out a couple of times together when I have been feeling my best. Made a trip out for some food on one day. Went to Dobbie’s garden centre and bought some more stuff for the garden/decking. However, the chemo has been tough work and I have been watching TV or sleeping it off. My sleep pattern has completely changed of recent. I am really trying not to take any tramadol unless I really have to, double edged sword really. It hits you like a truck when you haven’t been using it a lot which is good for pain killing. However when you do take it a lot it really screws with your sleep.
Anyhoo, I have however a couple of new side effects that the doctors were interested in.
#1 Vertigo. Now, having never suffered it a day in my life, this is obvs new to me, I don’t have a fear of heights but I can now sympathise with those that do or that suffer vertigo and say what an absolute bunch of arse it is.
If I tilt my head in a specific way (I bent down to pick something up that’d missed the kitchen bin) or whip my head around in a certain way, I get a 5-10 second bout of vertigo. It’s not nice feeling, I did try to explain it to Kerry like I feel powerless for a second or two, it kinda…feels like a big black hole appears in front of me and I’m going to fall in. However, as soon as it arrives, it leaves.
I was laying in bed on one side. I flipped over to my other side and in doing so the whole world span for like 5 seconds. I had my bloody eyes closed at the time and that’s not a nice feeling either.
It’s been happening for a good couple of weeks now, most probably a month when I think about it. When I told the doctors, they were all interested all of a sudden. Told me not to drive till it passes, I explained I don’t anyways. Kerry does all the driving. They then informed me it’s not a common side effect on the drug. That’s more of a Oxaliplatin one but it isn’t unheard of.
#2 Skin and Numbness. I’m feeling tingling in my toes that were numb (Caused by the previous 6 months of treatment on Oxy) . Also that although it’s not like the feeling has completely returned, but if any of you have ever experienced chilblains, or have experienced skin separation from chilblains then you’ll know exactly what I am feeling. It’s like the outer layer of the soles of my feet is dead. I don’t feel that, but I can feel under it.
Doctors examined my feet and they could see the lack of sensation I experience but sadly don’t think I have layers of dead skin causing it.
It could be the feeling returning as the nerve damage caused by Oxaliplatin isn’t always permanent. I don’t have the cold sensation in my hands anymore, so I guess we will keep our fingers crossed for that.
One of the things that Dr Greystoke explained to me about Neuropathy caused by Oxy-based chemotherapy is that at the time you’re starting to feel it kick in, that’s just the start. It’s going to get a whole lot worse, and multiply that even more based on whatever cycle you’re on in your treatment plan.
I started to get the neuropathy about cycle 2-4 of 12 so I can attest to this. I remember by the time I had finally finished the 6 months, my hands and feet were numb, I couldn’t pick up or eat anything cold. If I got hit by a chilling wind in the neck my whole thorax would go numb and the first bite or drink of anything in a while would be like trying to swallow lightning.
Fast forwards what’s roughly about 7-8 months on and I am left with numbness in my feet.
As I already said, lets just hope it isn’t totally permanent. I will say however, since spring, sprung. I’m a whole lot better. Walking on the cold tile floors downstairs or outside was pain in the winter.
I was in Hospital on Monday just gone (It’s Wednesday today) for treatment 4. Everything is streamlined now. I get there, have my port catheter installed, flushed with 500ml of saline. Get my vitals taken, weight, urine, BP, temperature, heart rate and then I get an ECG. For everything other than the last, I just sit with my airpods in or play on my iPad. Obvs when you’re having an ECG you can’t screw up the results with having tech attached to you, so you take your watch, iPhone, iPad and airpods off. Then you always forget the sticky connectors are going to rip off half your chest/leg hair. Small price to pay really but I never think of that at the time.
The chemo gets delivered, and a couple of coffees later, I’m out of there. Kerry was interviewing someone at work from home so I got a taxi into the hospital and then when it came for home time she was waiting for me outside the hospital.
The shite metallic taste I get when I am on chemo kicked in half way through coffee number 2 at the hospital so I knew instinctively it was going to hit me hard this fortnight. The steroids they give me really do make me ravenously hungry but I only have them on the day and the day after treatment which differs from the 2 days afterwards when I was on treatment at home. I’ve been dozing off less in the day time as the treatments have been going along as this is part in what I alluded to earlier.
I’ve really been trying to get decent sleep. I am really one of those people heavily controlled by the sun cycle. Once the sun is up, I’m up. So I’ve been going to bed for about 10:30-11:00. I set up that sleep cycle thing in Apple Health for a reminder, nothing more. Then I will watch a bit of YouTube and then go off naturally. I know Kerry’s had to turn off the TV herself a couple of times for me but mostly I am good at knowing I’m going to sleep and turn it off. Then I’ll sleep with an alarm on for 08:30 which I will usually be awake before. If there’s noisy birds outside, I’ll be woken up by them. Bin man, I’ll be up early. However as a 40 something man. It’s usually my bladder that gets me up. Now, that’s the you’ve opened your eyes and the room is light. I am not the one that could sleep in a light bedroom with the sun peeking through the blinds.
Till I got this:-
It’s the absolute puppies plumbs. No light comes through whatsoever, Kerry has one, actually she has two but one of them has fancy schmancy cooling eye thingies. It’s completely adjustable as no two people have the same eye spacing or orientation but this is an absolute gem when it comes to daylight napping. I will say, for me I can’t sleep in it all night long, I’ve tried but I wake up with it off when I have done. So it really helps me if I am woken at 04:45 and the sun is already up. That or if I am cat napping on the couch as I don’t feel well. I have really tried not doing that though as it isn’t quality sleep. I’ve made the mistake a few times of laying down on the bed and then waking up at 18:00 or 19:00 feeling like I want to take on the world after a 3 odd hour nap and then questioning my life choices when I am trying to go to sleep at 01:00
Anyways, enough of their sleep mask as totally #NotSpondered
It’s too early to tell how I’m going to be on this cycle as I am going to start feeling the hit of it around today/tomorrow. My eyesight is worsening I’m losing my appetite a little. Water tastes like shite. Lethargy is fierce. All of the usual suspects. I’ll let you all know how I get on in the next blog.
Other craic, I’m really powering through Ghosts of Tsushima but I’ve got Ghostwire: Tokyo that I’m dipping into too as I don’t want to finish Ghosts of Tsushima too quickly.
I’m probably going to get PlayStation Plus Premium when it launches next month. I doubt I’ll have these two finished before then, plus, I still have GT7 and Red Dead 2 to finish. I’ve got my PC games catalogue too for when I can see with my glasses on. That and when I am feeling up to sitting up.
It’s one thing being ‘one with the beanbag’ in the gaming room but sitting bolt upright in a PC gaming chair is another. I feel wrecked after an hour.
When I was in the Bobby Robson centre, one of the people from Maggie’s came to speak to me about everything and to see if they could help. They made an application for some ESA benefit for me. It’s not much but it’s just a little more in my bank account each week. We don’t apply for any other benefits as we have learnt. Our combined income is too much that the government think we should not be entitled to anything. However when it comes to being disabled, they are a little more lenient. So that’s a little more weight off my mind. Should I want something I don’t have to scrape for months on end to save for it now. Especially when it comes to friends and families birthdays.
I’ve a scan coming up the week of my treatment 6 which is a fair way away. Mid to end of June. I really hope that we see some progress. I don’t just mean holding of the cancer but shrinkage. It’s what we are all holding out for. This treatment has no set end date. It will only end on my sayso, it being ineffective or if I am too unwell for it to continue.
There isn’t a 6 months on, 3 months rest régime. As my kiwi mate Rhys would say. “You’re going hard bro?” and I am trying, but the weight is piling on to me thanks to the steroids, my body is devoid of hair thanks to the chemo. I have little to no motivation to do anything and I am getting weaker but I’m still here. I’m still at it and I’m going as hard as I can Rhys! I promise.
That’ll do for now. If you’ve got any game recommendations, offline ones are the best for now. I’d like to hear ’em. If you’re up for a chat, hit me up. For now, back to the chemo coma for me.
-C
An honest blog about a guy's journey through cancer and chemotherapy 