Picture courteous of Macmillan.
Well I’m now on cycle 11 (of 12) of Folfox Chemo (taking Oxilaplatin (1 day) and 5FU (pump for 2 days) every two weeks).
Whilst I only have one more treatment left, every cycle is a huge challenge both physically and psychologically and I wanted to share with you my personal insights. I do appreciate that different drugs cause different side effects, but I thought I would share my own experiences to each one (yes there are quite a few) and how I’ve coped.
In addition to this I do have the added complication of being a Coeliac, and I have included these in my insights.
Are you ready? Well here goes….
Physical Side Effects
- Fatigue and Low Energy Levels – wow how do I describe this? Chemo is cumulative and the effects of fatigue for me has increased with each cycle (particularly the last 3). By 12pm onwards I’m generally knackered – yawning etc. Of course being a mum to a child I can’t just hibinate for the rest of the day (although sometimes I wish I could!) what I do to cope is take regular naps (whilst daughter is at school, or I arrange for family and friends to look after her for a few hours) and try and do regular walks (where I can). Don’t fight it though – fatigue always wins!!!
- Nausea – statistically being a woman, under 50 who suffered with nausea and sickness throughout pregnancy this was a guaranteed side effect. However how I’ve coped with this is that my oncologist has adjusted my medication. There are lots of different types of anti sickness/nausea tablets that can be prescribed – so don’t suffer in silence. It’s trial and error and they do bring their own side effects I’m afraid!
- Hair – With the chemo I’m having full hair loss is rare, however hair thinning is very common. My hair has thinned a lot and when it falls out can be really distressing. So how have I coped? I decided early on (and I wrote about this in an early post The new hairdo) that I would cut my hair short. It was definitely the right decision for me and I still get my haircut regulaly. Ok so not being able to use any hair colour has been frustrating but I’m just grateful to have hair!
- Neuropathy (Tingly lips, hands, feet and inside the mouth when touching or eating something cold that includes cold rain!!). I have suffered with this, particularly when I’m taking my chemo drugs and up to 5 days after. It was really intense to begin with so my oncologist decided to reduce my drugs (as it can become a long term side effect). How I’ve coped? I drink liquids at room temperature, avoid really cold things like ice cream, cold salads etc and wrap up warm when I’m outside.
- Periods and Early Menopause – due to my age my oncologist didn’t really cover this topic – I had to probe. Chemo causes kaos with your cycle and I’ve been informed that I’ll probably go into an early menopause 5 years early (deep joy). How have I coped? Not to panic, I’m fortunate that we are blessed with a beautiful daughter. Listening to my body and asking for advice with my oncologist and beating bowel cancer forum has helped.
- Bowel patterns – being a Coeliac and tackling bowel cancer whilst on chemo causes havoc with your bowels. I’m talking constipation followed by diarrhoea (most of which is caused by side effects of chemo and medication). How I’ve coped? I know my patterns, I take the drugs that help with these issues which has helped me to manage.
- Appetite, Taste Changes & Fluid Intake – loving my food, this for me is one of the worst, most frustrating side effects of chemo. My appetite isn’t great, nothing tastes right, even water tastes wrong. Fluid intake has also been a real challenge. I have bread (wheat) cravings (which I can’t have due to being coeliac) and I’ve fallen out of love with gluten free bread. So how am I coping? I eat what I fancy (with the exception of gluten) I.e. Protein, gf cereals, citrus fruit, lots of fresh soup, some spicy food & chocolate. In terms of fluids orange juice, smoothies, hot drinks (I can’t tolerate caffeine at the moment) and squash are manageable.
- Mouth Ulcers & Oral Thrush– I’ve really suffered with oral thrush since cycle 6, which affects taste changes. how I cope? Mouth wash and I take medication for the oral thrush. Chewing gum helps and also gargling with 1 smidge of bi carbonate soda, salt and warm water 4 times a day helps with the metallic taste.
- Muscle Aches – I get these all around my neck and shoulders on my recovery days, they tend to last a day or 2 and I always rest on these days.
- Disruptive Sleep Patterns – ok so when I’m taking steroids (for the first 3 days of treatment) I find I suffer with insomnia. Day 4/5 I can sleep for say 10 hours plus 1 hour nap in the day. Day 7 to 13 I then go through periods of insomnia again, and my head full of a thousand things. How I cope is I do mindfulness meditation – it’s brilliant!
Ok so that’s covered the physical side effects – here are the psychological ones, based on my own experiences …….
- Chemo Brain – This one is a challenge. It’s very similar to baby brain but I’d say more intense. For me chemo brain consists of being very forgetful, disorganised, very clumsy, can’t think straight, problem solving can be a bit tricky as is thinking on your feet. So how I cope? I write everything down so I don’t forget them. I don’t digest difficult information until I’m on a good day and that includes planning!!
- PICC/ Groshong lines – I’ve had both and I’m quite self conscious of my Groshong line particularly when I’m out. If people see it they often stare as they don’t know what it is. Also it brings many restrictions – I can’t do any exercise except walking, no swimming and showering is a challenge. I also can’t pick up heavy items nor give my daughter massive cuddles! How I cope? I wear high tops when I’m out, I do walking and I know the line will be out soon.
- Mood changes – my tolerance levels have reduced dramatically since chemo. Even though I’m a positive person I do have days when I’m sad. How I cope? Mindfulness meditation, having a good cry helps and knowing I’m still the same person inside and my mood changes will improve once I finish treatment.
- Forgetting what being well feels like – I’ve been poorly for over 2 years and you do forget what it’s like to feel well. Also knowing that with each cycle you will feel pants can be tough to deal with psychologically. How I cope? I’ve written myself positive notes when I’m on a good day that I read when I feel pants. I dont give myself a hard time and rest when my body tells me too. I know I will feel well again and that keeps me going.
- Reduction in drugs – this has been tough. I have had reductions in my chemo and because the oncologist can’t tell you “you will be cured, the chemo will work” it can be hard to get your head around. It’s about balancing chemo with the long term side effects. How I’ve coped is that if I can get through 12 cycles then I’ve got the best possible chance of cancer not coming back. I have no control whether it does but constantly worrying about it isn’t going to help me recover from chemo.
Phew! Quite a few don’t you think? So how have I coped with all these side effects put together? I take each day as it comes, take my medication, rest ALOT, listen to my body, talk about how I feel to friends and family. I’ve also found writing this blog really helps me to process every part of my cancer journey.
I know this has been a long post and if you’ve read this far, thank you. I hope for those of you that are about to go through chemo or are in treatment you know that you are not alone. For those who want an insight of the effects of treatment, I hope this post provides that.
There are lots of information books that are available from Macmillan (both online and at their information centres) that go in to far more detail than I have which I do recommend.