Back on the bike

Day 9 of chemo round 2 and generally much the same as the last time. Nausea has been worse than before and my hair has started to come out in handfuls (I have been assured it will not all fall out, it’ll just become thinner!). There’s no more news on the cancer front, so just need to continue on the chemo until the CT scan in July. As the fatigue seems to kick in during the afternoons, I’ve been using the mornings to clear out lots of the crap I’ve been hoarding for years, which has been quite liberating. ‘Chemo brain’ is kicking in though; I don’t seem to be able to concentrate on anything for very long, meaning there are lots of half-done things around the house at the moment (half renovated deck chairs, half finished sewing, half finished painting projects!). I guess they’ll get done eventually.

I’ve been very lucky to have lots of different friends visit me over the past weeks and that’s been fun. I never made enough time for catch ups with friends while I was working. You definitely need to ensure you make time rather than just always being too busy!

I also had the misfortune of bumping into my ex mother-in-law at the hospital, which was very awkward. I counted myself lucky though, because apparently I only missed my ex husband by a few minutes! I definitely don’t need that on top of everything else!

I’ve spoken to the big boss at county and have now accepted I won’t be able to return to work until at least October. It’s taken quite a lot to get my head around this, but my headteacher mentor visited the other day and made me realise that it really doesn’t matter because there is someone taking my place and keeping my school ticking over; it’ll be looked after and will still be there with all its highs and lows when I am able to return (Thanks Gill!).

Today I got back on my motorbike for the first time since my op. I haven’t been on the bike since last summer, as I’ve just been too ill to ride, so this was a big thing for me. I was really nervous that I wouldn’t be strong enough, but Andy made me do it (I probably wouldn’t have otherwise!). I’m so glad he did; I’d forgotten how good it feels to open the throttle on a clear road.

A Bad Day

“It is during our darkest moments that we must focus to see the light.” - Aristotle 

Just in case people start to think I walk around emanating positivity, I felt I should write about my day today.

The last 6 days I have been off the chemo drugs and I had begun to get my energy back. We’ve got lots of bits and bobs done around the house, which has been good. But today was day one of chemotherapy round 2. I prepped myself by looking back at the diary I have been keeping where I record any side effects and medication taken, so I knew I would have a painful arm and tingling sensation in my hands and feet as well as the hypersensitivity to cold.

The intravenous Oxaliplatin was really uncomfortable going into my vein, more so, I think, than last time. I got home and felt a bit yucky so rested for a while. Then I called the hospital to gets the results of my blood tests done two days ago. Now I’m still learning about what the blood test results mean, so I looked up the parameters for pre chemo bloods and found myself on the cancer research uk website. This showed me that I am still within the acceptable parameters for ‘normal’ bloods. My platelets have dropped but not too low, but otherwise numbers for white blood cells etc were more or less in line with the pre chemo bloods taken last time.

However, I then began clicking on links to other pages of the website specific to my type of cancer... big mistake! I started reading survival statistics (which my oncologist will not entertain, as he says we cannot predict life expectancy right now). I got myself really down and upset, even though I know they are statistics, averages, and even though I was already aware that the prognosis wasn’t great. I’ve spent the rest of the day randomly crying and needing to sort my head out. 

I’ll be ok tomorrow; it’s just one of those really down days! 😢

And I just want to add that I wouldn’t be able to deal with these days if it wasn’t for Andy, who seems to know when a hug/ an “it’s ok to cry.”/ a return to rational perspective/ a ‘just need to leave her alone’  is required (I don’t know how he does that when he is clearly having to assimilate the shit show that is currently our lives!).

Chemo Round One

So I started chemo a few weeks earlier than expected because the doctors deemed me well enough. The chemo I have been prescribed is Xelox, which is a combination of Oxaliplatin and Capecitabine delivered over eight consecutive 21 day cycles. Day one of chemo was on 19th April and involved the Oxaliplatin being pumped in intravenously over two hours. We were at the hospital all afternoon though because everything took ages (waiting for the pharmacy to dispense the drugs). It was quite an emotional moment when they connected the drip and started the pump. 

Days 2 to 15 are Capecitabine tablets to be taken twice a day. They also sent me home with anti sickness tablets and Loperamide (for diarrhoea) as well as a few days of steroids. Today is day thirteen and I feel I have been fairly lucky with the side effects so far, considering the massive list I was given of possible side effects. The two main side effects for me have been severe fatigue and hypersensitivity to cold things (I can’t hold things that have been in the fridge!). There has been some diarrhoea, nausea, thrush and numbness/tingling in my hands and feet, but otherwise I’ve been ok.

Due to the drugs, my immune system is not functioning properly, so I have to avoid possible sources of infection. We’ve had to become an ultra clean house, so antibacterial soaps and sprays and paper towels rather than hand towels. I’m not allowed near ill people and have been advised to avoid crowded places. There’s also a big list of stuff I can’t eat, which sadly includes blue cheese, undercooked steak, shellfish and Mr Whippy ice cream!

Days 15 to 21 are drug free, so I’ll have to wait and see if the side effects subside before beginning the whole cycle again.

Also, my oncologist received a response from Basingstoke Hospital a couple of weeks ago. They’ve asked for further tests to be done, but they did also say they had looked at my pre and post op scans and noted a ‘solitary omental nodule’ (a spot on my peritoneum) on my post op scan that wasn’t there in the pre op scan. The oncologist says we will just be keeping an eye on it for now. They are planning to do the next CT scan three months into chemo.