Showing posts with label sarcoma awareness. Show all posts
Showing posts with label sarcoma awareness. Show all posts

Tuesday, 16 August 2016

Sarcoma Uk #1 Ian Randall Photographer 45





“So the cliché goes, that when you’ve encountered something like this, you make every day count. But actually, sometimes, I feel mentally and physically drained – and that’s the truth. I started chemo on 28 December 2010, each cycle lasted for five to six days and in between cycles I was back and forth with various problems with blood infections, dehydration and needing transfusions of blood and platelets. I also had regular scans on my chest, heart and kidneys.

“Eventually it was decided that I needed surgery to remove three ribs and part of my lung – which sounds terrifying. Then I had three more chemo cycles, I was meant to have seven, but my body just couldn't cope. Treatment was exactly 10 months. Initially, recovery was incredibly hard as my heart and kidneys were badly damaged during post-surgery chemo. I was barely able to look after myself for a few months and that is when things got really hard.

“The countless meds made me feel like a zombie, like I was in a real-life nightmare. I had 'chemo brain' and I couldn't concentrate on TV or a book. I had to play games on my iPad such as solitaire to get my brain ticking over again. The most horrible depression set in. I couldn't see anything good from what had happened, I wished I had given up. The depression is never far away but I'm somehow dealing with it. I'm trying to take things a day at a time, sometimes an hour at a time, sometimes a song on the radio at a time.

“I was a Fire Officer, I was fit and active, full of beans and energy. They held my job open for me for 18 months but it became clear I wasn't ever going to be well enough to go back. I was devastated. Now, I can't run, go to the gym or cycle, and I can't play football with my two young sons. I used to jump out of bed and love life, now it’s just another day to get through. The old me is in there somewhere, though.

“Luckily, photography has saved my sanity. I went on a few day courses and after about a year of these, my tutor said to me "why are you on this course? you should be doing your own stuff and making money." I'm not good at taking compliments but this one changed my outlook on photography and so many things in my life.  It’s amazing that one little comment changes someone’s life so much. 

“It’s so important these portraits and stories are shared – even though I am not proud of how I look now, awareness is essential. I had never heard of sarcoma, and during my treatment I didn't know Sarcoma UK existed or that other people got sarcoma. That’s why I love to help Sarcoma UK, not only giving something back by giving up my time, that I have plenty of so it is easy, but I've made some lovely friends and as I get further past treatment finishing, I can try and help others who are going through it too. By getting them to see there is a light at the end of the tunnel, it will be hard, painful, the worst thing anyone can go through, but they will get through it. If i'd had someone that was surviving telling me that I would do it, it definitely would have made things easier.” 


Saturday, 5 March 2016

warning graphic images *


Operation notes...

#Mandalas, as well as #photographs have been crucial to my spiritual recovery, no irony spared using marbles: buttons, beads and operational notes. I asked my consultant if I could have some photographs/ scans to use when I started the blog- I thought I might be entertaining, showing pretty colours in scan images, you know, and be a bit sensationalist. My tumour was so big it was probably going to be used for teaching purposes at the hospital ( I know fame in Chelsea again ) Dirk knew I was a photographer and emailed me some photographs that had been taken during the nine hour operation- advising me not to look at them too often. Well I didn't and I've blurred this image, and I'm not sure I even associate it with my body- but you know..Fucking hell. 

through the tunnel...

Having had such a large tumour removed, along with a kidney, spleen, bit of pancreas, bit of bowel etc etc, I've had moments, quite a few actually, of worry and fear. My digestion is a problem. Things get stuck. The red wine that I refuse to give up provides a free, colonic irrigation from time to time. I inadvertently eat something that has wheat in it and of course I'm getting older. Each ache and pain is a possible recurrence, particularly about a month before a scan when the neurosis sets in. My consultant is amazing, and always on the end of a phone or email when I have a panic, that turns out to be a temporary hernia or a bit of excess fat or trapped wind. I'm sure he tries not to laugh when I explain I felt like a pin had been stuck into my middle, from the inside out and that it 'weirded me out'.


The friends and family around me wont let me get too down about it though, they know my passion for photography, force me to take theirs and everybody else's portraits and drag me through fields, up hills and through forests until I am strong again- and it works. The first time I took this as a given. The second time around I felt a little guilty- don't push it girl-and then there was the explanation that I had to give to my 16 year old . He doesn't want me to talk about him on here. The sense of vulnerability is overwhelming, and this time I had a friend who had been mis-diagnosed with a fibroid, that had turned out to be a terminal sarcoma.. Gill had helped me so much after the first operation, bringing me soup, paying the window cleaner, hiding bottles of vodka if she found them and she and her husband Miguel continued to support me through the second operation even though she was terribly ill herself. We shared a wicked sense of humour and bad language - she swearing at me because I had given her a sarcoma, picking me up on route to the local hospice so I could join her in free art and coffee.We laughed like drains about other peoples flinching when we recounted our bodily functions and ability to fart like volcanoes. Shortly before she died she came and sat in the garden, in the sunshine, and wanted me to take her portrait..fluffy hair and all- so I did.xx