Chemo half way through – how it’s going

It’s strange to think that I’m half way through my chemo treatment already.  If I’m honest in many ways, I’m still coming to terms with the fact that I have cancer, so it’s very weird realising that I’ve already at a midpoint in my initial treatment plan.

So far I’ve been managing really well with the physical side of things and have been really lucky to not have too many troublesome side effects.

Physical Side Effects

During the first round, I had very burny feet.  Remember that feeling when you’ve been dancing in heels for too long and the balls of your feet burn?  It was just like that! (Apologies if you’re a man and have never danced in heels, I can’t think of any other way to explain it, so you’ll just have to imagine it, sorry !)

One of the possible side effects of the chemo combination I’m on is permanent nerve damage, so because of the feet burning, my daily tablets were adjusted to reduce the dose by 20%.  Psychologically, this was a bit of a blow – I didn’t really want to have my dose reduced!  I felt I was failing in some way and obviously wanted to make sure I was doing everything possible to treat the cancer, so reducing the dose felt all kinds of wrong.   It took a while to come round to the idea that it was probably for the best and to trust that the medical team are making the right decisions for me.

During the second round of chemo I was hit by an ongoing fatigue and tiredness that I just couldn’t shake off, no matter how long I slept for.  It was a low level tiredness that meant I didn’t feel like doing much of anything.     As the effects of chemo are cumulative and build up as treatment goes on, this was a bit of a worry – if I’m feeling like this after 2 rounds, how will I manage by round 4?

Each month I have bloods taken and a review two days before chemo, so just before round 3 started, it was decided that my chemo infusion dose would also be reduced by 20% to try and help with the tiredness.   Again, psychologically it felt like a failure, but I’d also received the brilliant news that I could start immunotherapy with the chemo in December, so I felt a little less concerned.   And I also wanted to feel a lot less tired !

Apparently it’s not uncommon to have your dose tweaked and it’s not something to really stress over – they calculate it based on height and weight and start you off on a full dose to see how well it’s tolerated.   Reducing the dose has definitely made a big difference and tiredness has been a lot less of a problem during round 3, which I’m really pleased about.

It’s not exactly a walk in the park, but to be fair, I’ve been pleasantly surprised by how well I’m managing the chemo and generally I feel relatively well – physically at least.

Psychological Effects

Mentally – well that’s been much harder than the physical side of things.

There is a lot of fear and anxiety, some of it possibly quite irrational at times, but also quite normal and common I’m sure!   For instance, I’ve even worried that I’m managing “too well” with chemo  and maybe that means it’s not working properly?!

I’ve also fretted about the following:

• What If I’m allergic to the chemo?
• What if I get every one of the side effects ?   What if I get them all at once and can’t cope.
• What if the chemo doesn’t work?
• What if it works for a bit and then stops having an effect?
• What if I get sepsis or a cold that turns to pneumonia and I’m not strong enough to overcome it?
• And then ditto all of the above for immunotherapy treatment too.

Having a low immune system and being more susceptible to infection is one of the major side effects of having chemo.  So much so I have a chemo alert card that I have to always carry with me. And strict instructions to ring the treatment helpline at the first sign of an infection or a raised temperature.

When I first started treatment I was completely paranoid about it.   I was ultra careful about doing things around the house in case I accidentally cut or hurt myself !      I slathered even the smallest of paper cuts in a big dollop of savlon, monitored my temperature  and breathed a huge sigh of relief when any cut healed over.

I’ve also found that initially I was hypervigilant to my body.   Every ache and pain, every headache and every strange twinge had me worrying and checking the list of side effects to see if it was listed and do I need to call the treatment helpline to double check?      As a 50 something, post-menopausal woman, aches, pains and strange twinges are pretty much daily events so it’s been an interesting experiment in self control and self regulation !

As treatment has gone on, I’ve definitely relaxed a lot and am a lot less anxious about things – I don’t panic if I get a weird twinge anymore.   It also helps that some of the side effects happen in patterns.   I know that 3 or 4 days after chemo infusion and lots of steroids (with their own long list of side effects), I’ll feel shit for a few days and then start to feel brighter again.

 

Feeling Vulnerable

Mainly due to the time of year, I have stopped doing things like spending time in very busy places.  It’s been an interesting challenge in the build up to Christmas.  I’ve tried to still go out and about as much as possible – I don’t want to become a recluse!   But I’ve intentionally gone shopping at quieter times whenever I can and cancelled planned get-togethers and Christmas dos.  There seems to be so many colds and flu around, that it just feels safer to avoid crowded places.

I’ve had a few unpleasant moments when I’ve felt really vulnerable when people have got too close to me, or it’s been too crowded.  Especially when I can hear a lot of coughing and spluttering.  I’ve even dug out my left over masks from Covid and worn them in Tesco and on the train when I’ve felt a bit overwhelmed.

I’m sure if I was going through chemo in the summer, my experience would have been quite different, but for now I’m perfectly okay with being ultra cautious and avoiding taking unnecessary risks with my health.   My priority is to keep as strong and well as possible so that I can manage and finish the treatment.   And if that means cosying up at home and not going out so much for a while, then I’m happy to make the best of it.

 

The wins I’m celebrating three months into treatment

• I’m still here and so far chemo isn’t as bad as I thought it might be
• Adjusting the dose means I’m not struggling with tiredness like I was in round two
• I’ve started immunotherapy which is brilliant !
• Thanks to covid, wearing a face mask in an overcrowded supermarket doesn’t feel weird
• My swallowing is improving and I’m able to eat more things

Positive thoughts to hold onto

• Everything is temporary – both the good and the bad.   Worries, anxiety, side effects, feeling vulnerable – it’s all just temporary
• For every shit day – a better day is coming (a bit of a cliche perhaps, but it’s so very true!)
• We adapt to things really quicky and we form new habits quickly too.  The anxiety I had about starting chemo and taking my chemo tablets at the beginning has all gone and it’s now part of my daily routine.
• One day all of this will be just a memory