There is nothing like being given the diagnosis of having cancer to make you feel that you have absolutely no control over things. There you are, pootling along with normal life and suddenly, without warning your world is turned upside down. I have spoken before about the whirlwind of appointments and treatment that steers you along whether you feel up to speed with what’s happening or not and this is a good thing in a way because things need to be done and at this stage, you are most certainly not in much of a position to make decisions. But, all this can leave you feeling rather helpless and that this big, nasty thing is being done to you. I found that one of the things that made me feel more positive, was to take control where I could.
The first thing I did was to cut my hair short ready for the impending hair loss. It felt like a defiant moment of, ‘well, if it’s going to go, it will go on my terms.’ Okay, so it was horrible when it fell out, but I still believe it would have been worse if I had not taken my own steps beforehand.
I then had a fun/not fun shopping spree for various things I had read about other people amassing to help lessen symptoms and side effects. This accumulation included such items as: hand sanitizer gel, mints, travel bands, lip balm, vinyl gloves, ginger biscuits, skin oil, Milton and a baby brush – which I am using now as my hair grows back. I bought hats and scarves, cotton rich clothing and many other things: most of which did indeed prove useful, a few of which perhaps not so – but the main thing was, I felt like I was preparing and by doing so was tackling things head on.
Knowing that my body was about to take a severe beating from all the drugs, I went to see an herbalist for some gentle natural help to support my poor organs through the process. This made me feel I was doing something kind for my body and whether other people believe in it or not, I truly think it helped me immensely. Yes, I had all sorts of horrible things happen because of the chemo, but I didn’t get any infections or other illnesses on top of it all and my recovery has been good.
On the subject of drugs: I made myself a pretty bag to keep all my medications in; perhaps an odd thing to do, but it meant I could hide all the nasty stuff away inside something pretty – which felt nicer. Speaking of bags; MOTH and I have Cancer Bag, something people have either been shocked or laughed at hearing us say, but it was a bag put aside for all the cancer related paperwork (and my word, you end up with a lot). I wanted to do this so ‘cancer’ did not encroach, hanging around in visual reminder throughout the house. It was all put away ready to grab and go for each appointment.
The last thing I did before treatment started, was to dedicate a space to be my recovery room for the days I couldn’t be up and about much. I very specifically did not want to just stay in my bed and I certainly did not want to call it a ‘sickroom.’ I made sure it was comfortable and clean with all the things I might want or need and as such, it became a place of recuperation and recovery.
As treatment went on; from chemo to surgery, new things came up for which I felt the need to take charge of. Because of having my nerves blasted with poison, I have peripheral neuropathy leaving me with pains in my feet, knees and legs which makes walking difficult and painful at times; add to this loss of balance some days, shuffling about can be rather difficult. BUT, there was no way I was going to start just lying on the sofa so – I bought walking sticks. Yes, I am 35 and have walking sticks and I don’t care. (I thought I had ordered sleek black ones but when they arrived they were dazzling with a silver sparkling pattern – not exactly my cup of tea: they are now referred to as my ‘bling bling go-faster sticks.) They have been a means for me to get out when otherwise I couldn’t – a tool that gave me ability to still go for a wander or mooch around the shops and so, odd as it feels, they are great. In a similar vein, I have old lady shoes – comfortable and with Velcro straps because there were times I couldn’t manipulate fastenings because of the pain in my fingers. Velcro shoes and walking sticks – hot to trot!
After my surgery, I had two drains stitched into me. These were very long tubes with bottles on the end which drew out lymphatic fluid and blood from around my wound areas. What a pain they were! It was completely ridiculous and annoying to have to carry around two large bottles with long flopping tubes 24 hours a day for eight days. I was sent home from the hospital with each bottle in a bag that hung precariously from each shoulder and fell off at the slightest movement. After a few days, I started carrying them in a small hessian bag – a slight improvement but still meant I always had one hand I couldn’t use. So, I made myself panniers which I wore round my waist and left me ‘hands free.’
All these things I did because I needed to feel I had some control over the situation. It was a way of coping and feeling less of ‘a victim – whereby stuff happens to them,’ than a person who was proactively dealing with a situation. But here’s the biggy and the thing I have been learning and expanding upon as time goes on – the best thing to take control of is the mind.
From the start, I knew I didn’t want to be passive to the cancer. I was angry, which helped and my aim was (as my best friend and I have constantly said) to kick cancer’s arse. Of course, I have had days where things have been too overwhelming to not give in to a big cry and a feeling of ‘this just feels too much.’ I always made sure though, that I didn’t let these times last for long. I couldn’t afford to be down, I needed all my energy to go in to getting better. This is hard work. It is full-time work. Being ‘up’ and positive can, at times, be difficult but I truly believe, worth it. I don’t think I’ve said ‘why me’ at any point; I know I’ve said ‘oh, for £*@%’s sake’ and ‘%^$* and perhaps at times ^&!*^^£@&$^@^^&$@^$@^*$^@&^$*&@^$^***@^& but I couldn’t give in to feeling ‘done to’ rather than ‘dealing with.’
I am learning that we all say the right words: ‘we must slow down,’ ‘life is for living,’ ‘don’t hold on to grudges’ etcetera, but saying them and really feeling and doing them are different things. I have been blessed with the impetus for a new outlook on dealing with life. Old habits are hard to kick, but bit by bit, with meditation, affirmation and a whole lot of stubbornness, I am learning to take control of my life through a positive mind and it is oddly liberating. This is my new beginning.
My homemade hip panniers to carry the surgical drains
