It's important to point out that the term chemotherapy is a very general one, and one person's treatment plan of combination drugs will vary to another, so as previously pointed out, cancer and chemo is very individual, I mean very. I haven't yet met one person who has had or is having the same experience as me, due to the type of chemo drugs and the way you react to them. There's the mental side to consider here to, one which glaringly is absent from any consideration with every doctor I've spoken to who just offer you sleeping tablets and anti-depressants.
Chemo is all about the side-effects and while you will get a list of possible ones, you really may not be fully prepared due to the fact that the hospital won't provide all the 'over the counter' stuff that you probably should stock up on before you start. Judging by the amount of anti-sickness they give you, that's probably the most common problem and while I have to take it on treatment day, I've not really felt sick at all, but boy have I had a lot of other things going on. You will also need to be taking your temperature daily as this is an indication of your blood cells being low and I'm not discussing this serious side here as I'm not a doctor and you will be given clear instructions about how to deal with them.
It's all those niggling everyday things that can also bother you, and when they all happen at once can make you feel pretty terrible as they seem to be magnified. My biggest 'pain' has been caused by acid reflux/heartburn which would just not go away, it was immensely painful and went on for about ten days, with me phoning the hospital and getting Omeprazole (which has always worked before) to discover that it just made it worse on some days or didn't work at all. Eventually I found out that I could also take Gaviscon (something that didn't work for me before) but sipped slowly this did relieve the symptoms quicker, so my point being, that what may have been your remedy before chemo may not be the thing after chemo. I'm trying a different drug from the doctor now for the acid which seems easier to digest but I wish I'd had the Gaviscon drink in the cupboard from the start and that's the point of this blog post - to stock up on some straight forward medicines from the chemist.
Typically one gets either constipation or Diarrhoea and my body has decided to go for the latter. Actually my whole internal system is just not working normally but the 'getting caught short' with no warning does mean you are pretty much tied to a loo on some days. It's not a good idea to block it up with pills but the pains before and during diarrhoea episodes can be excruciating so I was recommended to try an IBS tablet (Buscopan) to help with the cramping pains and this is quite a good idea to have in stock because unless you've had IBS before you are unlikely to keep it in the cupboard. Always check with your hospital before taking but trust me, if you are in agony on a Sunday night you don't want to wait to take something. I can't suggest what you should take for constipation but you may want to ask your doctor what they recommend should that be a side effect that you get.
Mouth problems are common, ulcers and swollen gums so I got some Iglu Mouth Ulcer type stuff in and this was welcome on the few days I had a flare up. Make sure you change to very soft tooth brushes and get a mild mouthwash.
There really seems little point in recommending food and drink as I've not yet agreed with one person on what I'm either craving or finding helpful. Your taste goes and is is replaced with a weird metallic taste. The most annoying thing for me is that a lovely cup of tea is now not so lovely. It's completely trial and error and what I've craved one minute changed a few hours later, so all I can say about that is try and have someone around to go to the shops for you a lot. The comfort of eating what you want and knowing that it's something that will make you feel better (on many levels) is priceless. I was vegetarian up until this and my main craving has been for bacon sandwiches! So go figure that one. Jumping back to the 'constipation or diarrhoea' will also probably influence what you feel is best to eat. Feeling empty will make you crave some stodge and feeling full and bloated will make you want some light fruit like melon perhaps. I'm not a doctor but eating what you fancy seems to be the most important thing here because if you don't then it's just adding to the torture you are already feeling. If 'trying to be healthy' means forcing food you don't like the taste of then it's not going to be good for your mental state as, let's face it, you need to take pleasure wherever you find it during these months.
The best way to deal with the side effects is drink at least 2 litres of water a day, this is terrible news for me, I friggin hate water, always have done, so it's a mega chore for me to lug down that much fluid but flavouring it didn't work because of the weird metallic taste thing, so I've got to grin and bear it because it really makes a difference and it's vitally important to flush out the toxins or you may get liver and kidney problems.
I've had a lot of skin problems too, sore red spots and big puss ones. For a few days there I looked like someone with acne and measles, I think these are side effects to the Immunotherapy drugs. If you get skin outbreaks then you probably need a few different products. Because your skin also becomes very dry you want to avoid strong cleansers but if you have spots then something that you could just dab on them to kill the bacteria is good. I've also just bought some Bare Minerals foundation which is a very thin serum that has colour to it and this just made my face look less patchy when I went out. A small range of organic skin kind moisturisers and cleansers perhaps if you don't already have them might be worth looking into. On days when when my face decides to burn up (on the steroid days) I use a Neals Yard soothing serum, but as you won't know beforehand what your skin will do then just be prepared in the best way you can.
I'm going to wait to talk more about the beauty side further down the line because this will change over the coming months. Looking the best you can is vital when you don't feel great. I'm trying the cold cap to see if I can keep my hair but it's too early to say how that will work for me. So far, I've not lost any hair but I'm aware that this could change. However, I do want to document the cold cap system in some detail but it will need to be further down the line. I know there are groups for ladies to do pamper sessions organised by the local cancer charities but this kind of thing is not for me so I want to talk more about doing things for yourself in a less public way. I find the worst thing for me is the public display of having treatment in big rooms full of other people and the loss of dignity I associate with that. For me cancer isn't a club that I've joined.
I want to address the mental side from a different perspective as well, and explore why the diagnosis of cancer makes you feel de-humanised. For me, joining in with all the others who have cancer to 'do stuff' is humiliating, it's like admitting that our dignity is now gone, we are now a statistic so we should just fit into this group and jolly along with others who we have nothing in common with apart from cancer. I had to share a treatment room with another lady who talked to her friend about death and all the people who had died, in the end, even my husband had to ask them to change the subject. Ah, headphones, there's another top tip! These groups are great for some people but aren't for everyone, and if you don't feel comfortable with that then there's no guilt in admitting it. Trying to do things for yourself is by far the most empowering and so grabbing back some things that you have control over will make you feel less of a victim. It's another reason I was grateful for my 'Little Lifts' box provided by a local charity, because it was a way to sit at home and treat yourself.
The photos in this post are all taken in my bedroom, I'm making my recuperation room as pretty and cheerful as I can, with flowers by the bedside, some new art and my cats. I've got a tv in my room too as Netflix binge watching on extreme tired days is great company when you can't lift your head off the pillow to do a crossword or read. More about that too in the months to come. Beautiful bedding and some visually soothing elements will cocoon you on the down days.
If you can then stock up your medicine cabinet with all the likely treatments you might need, hopefully you won't need them all, but to have them when you need them is going to make the side effects a lot more dealable. After your first treatment you will just be waiting to see and this is pretty stressful in itself. Getting control over them will help a lot in your general well being so being prepared and not having to wait until someone goes to the chemist for you can make quite a difference. You will need to learn how to manage your chemo side effects and determine which are the serious ones and which are the ones you can do something about.
If like me you struggle with sharing personal space in a vulnerable situation, (like being attached to a machine for many hours), then having a bag of treats with you can help you manage your space. My own blanket, comfy clothes, headphones and books are all recommended, I love cryptic crosswords so it's a good time to sit and indulge in that kind of thing and have some control over your surroundings and keep the anxiety down.
Be kind to yourselves x
