I think it goes without saying that when you are diagnosed with an illness, disease or injury you lose certain things. Whether it be mobility, independence, relationships or an intangible essence such person identity or confidence. What is lost is dependant on the person, their situation and the type and degree of the ailment. Over the past couple of months I have been slowly losing my hair and this got me thinking about what else I have lost since being diagnosed at the start of the year.
It was during our visit to the Gawler Foundation in late October that my hair started to noticeably fall out. After rinsing the shampoo out of my hair my hands were covered in hair. I’m not talking about a couple of strands either, think original “Teen Wolf” played by Michael J Fox and you will get the idea. At first I was a little taken aback, but at the end of the day it’s only hair and to be honest I have never been one to worry to much about it. I generally wear caps and beanies anyway. Two months later and I am still losing hair slowly to the point that you can now see sections of my scalp and I must admit, it’s starting to sadden me a little. I have never been one to worry too much about what others think of me, but my head is starting to look a little weird and it’s at a stage that I can no longer use hair products as this seems to emphasise the bald patches. The hair loss is due to the new chemotherapy regime that I am on; folfiri; in which hair “thinning” is a common side effect. It’s not so much the fact that I am losing the hair and how it looks that bothers me, but more the annoyance of the hair coming out. My morning shower turns into a battle between trying to get the hair off my hands and constantly removing the hair from the drain so that my shower doesn’t turn into a bath. After that battle has concluded I turn to trying to dry my hair without getting hair all over me and turning into a werewolf. The hair sticks to my wet skin in which I then need to pick off each strand. Doing this with partially numb finger tips, due to ongoing neuropathy, is not an easy task to accomplish. The thought has entered my mind more than once to shave it all off. Watch this space.
It appears that trying to control your weight whilst on chemo is often not achievable. Initially I was losing weight and was put on a diet which included full fat foods. A particular favourite menu item was a full fat thick shake with chocolate Sustagen and banana suggested to me by my surgeon. This all changed in May when I started chemotherapy. On chemo I am given steroids that helps to control the nausea and increase appetite. As a result I have gained weight and appear to have lost control of my eating. These drugs, in conjunction with the nausea, make me crave salty foods and soft drink. For some reason these food items help to calm my nausea. So for the time being I have lost all control over what me weight does.
Losing energy and stamina also hinders my attempts to control my weight. Initially I didn’t notice it that much, but as I undergo more and more chemo I appear to get increasingly tired and fatigued. Before diagnosis it was not uncommon for me to spend majority of the day outside working or visiting local bushlands and parks without feeling exhausted. Now, at most I can spend half a day outside in the garden before needing a rest, but it comes at a cost. The next day I am buggered. I am hoping this is only due to a build up of chemo and doesn’t become a permanent part of my life. I now need to plan my time carefully to make sure I am not exhausted on days were I have important appointments or social occasions.
Although I like to think that I have total control of health decisions that concern me, in reality, I have lost control over many decisions regarding my health. In a way it was my decision to let go of this control over to my doctors. Yes, I can refuse to have certain treatments, but if I want to live, it’s best to listen to the doctors instructions. So I basically do what I’m told. I only do this because I trust my doctors completely. What did surprise me though, was having to get permission to use vitamins, supplements and other medications from the pharmacist. Even something as simple as fish oil tablets need to be cross checked to ensure it will not interfere with my current chemo treatment.
Being a somewhat personal person, my sex life is not something I normally talk about. But that too has been lost. A year before my diagnosis I completely lost my sex drive and I had no idea why. Well, as it turns out, it’s rather common for people with cancer. Between the cancer, chemo, surgeries and side effects, sex is one of the last things on your mind.
With having 50% of my large bowel removed, your bowel movement tend to become less reliable. You know that saying “never trust a fart”…….well that is more like a way of life for me now. You just never know what’s going to happen. One side effect of my current treatment is diarrhoea, so it’s not uncommon to find my sitting on the royal throne for long periods of time. In fact, I am sitting on it as I type!!! Stop judging me!!! This bout of diarrhoea also landed me in hospital overnight.
I have always been driven and motivated by work. I can’t remember a time when I haven’t been employed. At the age of 14 I got my first job in a nursery and have been working pretty much since then. So when the decision to give up work had to be made, it was a hard one. Due to chemo and it’s side effects I have been unable to return to full time employment since the start of this year. My work place has been incredibly supportive of my situation and I will be forever grateful.
My main source of social connection before diagnoses was work and now that I am no longer in the workforce, this is now gone also. When I was first diagnosed and during my hospital stay I had people visiting me regularly. But everyone has their own lives to continue on with and the visits became less regular. That is simply how life goes. For the week after treatment I only see my partner and the district nurse and to be honest, socialising is the last thing I want to do in my “bad” week. During my “good” week it is normally our cat, ducks, chickens and rescue pigeon that keep me company during the day.
Although it may not seem like it during my “good” weeks, my independence has diminished somewhat. The week after treatment I heavily rely on my partner for the cooking, cleaning, shopping, etc. During this time I find it very difficult to leave the house at all due to the side effects of chemo. Having to depend on someone for simple day to day things is very hard and it is incredibly frustrating to not be able to do these things myself.
Due to the side effects of chemo making me unwell for two weeks a month, I feel as though I am losing time. There is so many things that I want to do, but many of which I can’t do whilst undergoing treatment. If the doctors are correct I only have six months left and here I am sitting around the house. I have been able to undertake small weekend trips away, but many of my larger bucket list items are still incomplete due to my inability to get away for a longer period of time. It feels as though I completely lose the two weeks of the month as I generally spend this time in bed recovering.
Although I have lost many aspects of my pre-diagnoses life, I have gained many things also. One of which is my creative freedom. Given that I no longer work, I have the time to take up drawing and painting. I am not very good, but it allows me to relax and try something new.
This may be TMI, but since the start of the year my menstrual cycle has completely stopped. It is not unusual for this to stop when you start to undertake cancer treatment, it can even lead to early menopause. Although this is something that has been lost, I am loving it! I no longer have to worry about tampons, it’s great.
As I started to delve into the world of cancer, I started to make new connections. I have met some truly incredible people so far from the doctors and nurses that have treated me at Peter Mac to the district nurses that visit me at home every two weeks. I participate in a monthly support group and the lovely people there are fantastic. By trying new things such as meditation and yoga, I have met people that I would never have met otherwise. Facebook has opened introduced me to some truly inspirational people that are on their own cancer journeys.
I have found a stronger willingness to try new things that I wouldn’t normally try. Things such as yoga, meditation and mindfulness is something that I would not have considered participating in pre-diagnosis. Now I try to make it a part of my every day life. By doing so I have found an inner peace and spirituality that I never knew I had. I believe that this is why I am so calm and open about my current situation.
Knowing that I have limited time has given me a new perspective on life. I no longer stress about the little things and try to take in the more precious moments. When sitting around the dinner table with family I try to take everything in. The conversation, the energy in the room, how everyone laughs and connects with each other. I pay more attention to the small things such each detail in my partner face, the textures and contours of the flowers on our trees and the pleasures of a hot shower in the mornings. These are the important things that we often overlook due to our busy lives.