Things that unless you have had Chemo you can't possibly know.. and lots of friends have absolutely no idea of the sorts of trials and tribulations that can be faced on a daily basis.
Whist we are given many sheets and pamphlets of information, which are crammed packed with do's, dont's, side effects and the most amazing information, there are always going to be things that unless you have actually had a course of Chemo that you are just never really going to know about.
So if you either don't want to know about the rough end of this shining "life giving" wedge then this post is not fo you - go and find the awesome one about the hair cut or the cauliflowers or have a look at Workingline Images and enjoy the dogs.
But if this is absolutely why you are here, then here it is Smelly Wee and all.
Before you start, remember, this is my experience, I was a healthy, fit 50 year old, and this is my experience, my story - depending on your drugs and your regime then you may have different side effects, you may have some or none or all.... but whatever you have, remember that Chemo is your best friend with a bad attitude.
DRUGS : Carboplatin
Plaxitacel
Cycle : 3 weeks
Sessions : 3 cycles before scan
How does the day work :
- Cannula fitted - some people have a Pick line which is a permanent cannula in the arm.... mine is a cannula in my hand that is fitted each time.
I didn't think with a kennel full of dogs and some puppies that anything that needs changing at home, or keeping clean was necessarily a good idea. 🙈😂😂😂😂- fingers crossed we can stick with the cannula.
- Flush through with saline solution to make sure that the drip is working.
- Pre-meds for approx half an hour.
- DRUGS - for most of the day - my regime takes around 4 - 5 hours to administer.
- Final flush and HOME
BIG NOTE - BIG TIP - KEEP A DIARY - you are given one at the start but I set up a spread sheet so that i know when to expect things to stop and start. I also rate days out of 10 so my friends have an idea of how I feel (see the Talk to Me blog)
DAY 1 - Chemo Day
Normally pretty good day as at the end of side effects.
DAY 2 -1st day post chemo
Again normally another good day as still taking steroids.
DAY 3 - 7 - Tiredness : Tiredness on a sliding scale, I got more and more tired - but found that if I could get up and got for a short walk round the garden, get out of bed or off the sofa to eat then it really helped. The tiredness was of a level that I could watch anything on the laptop, or even listen to any blogs or audio books, it was a real case of eat and sleep.
Tiredness - not just any tiredness but Chemo Tiredness - a tiredness that saps all your energy, that puts you in a "fug"
DAY 5/6/7 - MYALGIA (CYCLE 1 ONLY as advised by Docs, it didn't happen after the second cycle - fingers crossed🤞)
Myalgia - Myalgia describes muscle aches and pain, which can involve ligaments, tendons and fascia, the soft tissues that connect muscles, bones and organs. Injuries, trauma, overuse, tension, certain drugs and illnesses can all bring about myalgia.
For me the myalgia was chronic - bones, joints, muscles, putting a foot on the floor sent pain all the way up my legs, lying down made hips and pelvis ache, the pain killers made me feel sick and it really was a horrendous time.
Image the worst "real flu" you have every had and then double or treble it in intensity. Horrible.
I came through the Myalgia the same time that the sleepiness abated and on day 7 i flew out of bed like someone had plugged the power back in - what I learnt from session 2 is that the power supply is more depleted and takes a bit more charging until the "cleaning gene" kicks in.
DAY 10 Onwards The start of the ulcers - so these started up the nose - felt like someone had picked my nose 🙈😂😂 and was red raw and very sore. This was followed by mouth ulcers and cold sores - for the "ready remedies and useful tips" see below. The second session I tried to be a hero and though "hey they will be gone within a couple of days"... well that's without a compromised system full of domestos - 7 - 10 days and they really did. Eventually I called the hospital and was seen on the assesment unit and got some pills. Like many of the side effects of chemo, prevention is easy than cure. Once the ulcers had started they needed to run their couse and this was around 5 - 7 days but the tablets prevented any more from errupting,
At the worse time I had about 12-15 mouth ulcers and cold sores - big whopping yellow craters all over my tongue and on the roof or my mouth and behind my teeth - it's hideous, it's debiletating, it stops you sleeping, talking, eating and drinking, it saps the spirit and you really SHOULD WAIT until they get as bad as mine. You know they are bad when you go to the hospital and everyone wants a look. 😂😂😂😂
And all the tim your mouth is in agony all you dream about is homemade burgers and chips - and that was my "pre chemo treat" Andrew made me the most awesome homemade burgers topped with Red Leciester Cheese and Tommy K ... with Chips and Coke - WOW - how to make a girls heart and tummy sing with joy.
Top Tips - Don't suffer in silence, you will have been given numbers to your ward and the nurses are just amazing, if you are scared, confused or in pain - pick up the phone and call someone, even if its your GP. My consultant said to me at my first meeting - we don't want to make you feel worse, the Chemotherapy will make you feel horrible but where we can we will help you manage the symptoms - TAKE THE HELP, don't be a hero ( I was a hero with the first bout of bad ulcers and lived to regret it when the nursing team could have helped).
Note on Steroids - some people have really problems sleeping after taking steroids, make sure you have a great book 😁 - I don't seem to have any problems sleeping 😴or eating.
1. Constipation and Diarrhea
To have in the cupboard : Sennakot / Ducalease and Laxido - all things to make you go that are available from the high street chemist. Obviously check with your Chemo team as they may something better to stop and start.
2. Smelly Wee
To have in the cupboard : AIRFRESHNER (lots of different types)
OMG CHEMO WEE - You need to a) shut the door b) take the air freshner c) don't be afraid when i'ts bright yellow and foaming - and smells like DRUGS (obviously please check with your chemo care team that this is ok just in case you have an infection or some other nasty and d) you are still peeing after 5 mins 🙈🙈😂😂😂😂😂
3. Myalgia
Chronic flu like aches and pains can be handled with pain relief and sleep - see notes above.
4.Mouth ulcers & cold sores
To have in the cupboard : Difflam , bonjella or such like, Igluu pastilles (were Rinsteads for those that are old enough to remember what those are). Zovirax for cold sores - AND IF THEY ARE AWFUL call the unit and tell them. Talk to people.
Jelly babies are nice and soft and can take that horrible metallic taste away.
Difflam mouthwash to help with mouth ulcers and craters 🙈the Chemo care team should offer you some of this.
Straws - I find a box of straws is an absolute must. Drinks that are tepid / room temperature also seem easier, as does just plain boiled water.
FOOD - work out what you can and can't eat - mashed up weetabix with mashed banana, tinned spaghetti, pasta, soup, smoothies, but be adventurous, lentils and dahls, mashed potatoes, rissotos, fish yoghurts (plain is best) Ice cream. For me salt is a killer - it's the one thing that has seriuosly changed about my taste, i can taste it in everything ... so go gentle and tell those that are cooking for you to go gentle.
5. DEHYDRATION - Don't do it - try try try not to let yourself get dehydrated, it just serves to make all your other side effects worse, especially the constipation. I really struggle to drink, and with every cycle have tried different things to try and help.
This cycle - No 3, I have boxes of juice drinks. Big glasses of water don't help, small boxes of juice and drinks with straws definitely do. Warm boiled water rather than lots of caffeninated tea and coffee, but anything is better than nothing.
My favourite go to at the moment is Apple Juice. The pectic in the apples can also help with Diarrhea and Constipation.
6. TEARS AND EMOTION
Let it Flow, Let it Flow, Let if Flow. Doesn't matter when, where or for how long, it is most definintely better out than in.
Finding someone to talk to is also great. I am lucky (for the wrong reasons) that I have a couple of very good friends that are Chemo Survivors and have been able to stear me through a very tough time. I am also a talker and have managed to make a friend at my chemo sessions which is great for sharing notes.
I also have an amazing partner, Andrew, he is incredible and I am so lucky to have him. But you need to talk to you parter first, they are dealing with your cancer as well. Andrew doesn't like my Chemo downloads on session day - so I arrange for a pal to pick me up afterwards and just talk to her instead 🙈🙈😂😂😂. Then over the course of the next few days the pertinent information from the session leaks out but not in such a full force. We all have different ways of communicating.
I'll sign of for now, lots of info to digest - Part II will follow shortly.
I've just had my third cycle and am now waiting for an appt for a scan to see if the tumour is shrinking.
I'll be in the throes of chemo soup for a few days, so catch you all on the other side.
C xxx