This week’s post features Sarah Cheeseman, who is another incredible person who has come into my life because of cancer. After being diagnosed in 2007 Sarah has gone onto have a family (against the odds) and has designed an incredibly useful piece of kit for people who need Hickman Lines as part of their treatment. I just wish the holder was around when I had my treatment!
“In June 2007, I counted over 40 bruises on my body; this was the beginning of my Aplastic Anaemia journey.Then In October 2007 I went to the doctors with bruises, a black eye, blurred vision, no energy, nose bleeds, and pain all over my body; it was even painful having a shower. On the way to the doctors tears filled my eyes as I looked down at my hands; they were bruised from just carrying a bag, I knew that something was seriously wrong. The doctor listened to my symptoms, asked if I was always this pale and sent me for a blood test.
Two days later I got off the tube at Green Park and climbed the few steps to the top, just doing that was so painful that I had to rest, I thought about calling an ambulance but I didn’t and went to work. That evening I got home and there was a message telling me to go straight to A&E because my bloods were low. Strangely I felt a huge amount of relief at being told that something was wrong. I can still remember shaking due to the adrenaline pumping around my body, as I waited at Kings College Hospital to speak to someone at the desk. I sat in the waiting room and within minutes of sitting down my name was called. Before I knew what was going on I was lying on a bed with all monitors attached to me and the tests began…..
I was given blood transfusions, it was an amazing feeling, and I could feel the life being pumped back into me. People around me could see the colour returning to my face. I had a shower and ran on the spot because at last it no longer hurt, the relief was immediate. Two weeks later I was told I had Aplastic Anaemia. The consultant told me about the disease, the more he told me the more upset I got, he told me that it’s ok to cry, he’d cry too if he was diagnosed with AA. It was then that I knew it was serious. Aplastic Anaemia is a rare bone marrow disease; it is an autoimmune disease. This is when your immune system attacks your own body. It results in your bone marrow not producing enough blood cells. It has nothing to do with iron, in fact iron tablets could cause serious damage due to having additional iron in my body from many blood transfusions, and eating spinach (as someone recommended) will not make it better.
I had a Hickman Line inserted and was treated with horse ATG (nearly rabbit as the horse died, but they found a replacement horse). The side effects were painful, and I was on so many tablets I lined them up and took a photo! ATG suppresses your immune system and I was also given cyclosporine, a drug that keeps your immune system suppressed. The idea is that you come off the cyclosporine slowly allowing your immune system to return in the hope that it works correctly. I came out of hospital in December 2007, returned to work in March 2008, ran the London marathon in April 2009, gave birth in 2011 and 2013, and set up my own business in 2012.
There is a 35% chance of AA coming back in pregnancy, trying for a baby was an easy decision for me. When I was discussing this with a friend and they said it wasn’t worth the risk, I told them that I couldn’t imagine never having children. My counts dropped in pregnancy, HB 8.9 and platelets 70, not dangerously low but a worrying low. I was advised to take cyclosporine but refused. I was six months pregnant and thought I could hold on for another three. The first time I held my baby (Amelia); it felt weird and strangely I didn’t cry. It was months later that I realised that I didn’t cry because I was in shock; at no point during the pregnancy or birth did I ever think that I would be lucky enough to have a baby. Thankfully my counts rose and they were at an all-time high!
We desperately wanted a brother or sister for Amelia. I asked a consultant if I was stupid, she replied “Sarah, I would never call you stupid”. I didn’t mind if the AA returned, I could cope with that I just didn’t want to leave Amelia without a mother. I asked another consultant if I’d die, he would only give me the facts and figures, but as I walked out of his office he called down the corridor, “We’ll look after you, you won’t die” I burst into tears, so that was it, decision made! In 2013 Louisa was born. I did cry at Louisa’s birth, it was a beautiful experience, we were even joking between contractions!
It’s a strange feeling living with an incurable disease; most days I’m fine but occasionally I feel a dark cloud suffocating me, not over me, more like squeezing the breath out of me. And every so often I have a little cry, mainly about not being here for my children, if the Aplastic Anaemia returned or I acquired something else. Questions and scenarios whizz around my head; who would care for my children whilst I’m in hospital? What if I died?
In May 2015 I was diagnosed with Anxiety, I’m pretty sure that this was brought on by the illness.
I had the idea for a holder for Hickman lines whilst in hospital; in 2012 I launched the Central Line Holder
Each holder is supplied with a showerproof cover and two lanyards, both have safety releases, and are length adjustable.
The great thing about the holder is that it allows you to shower easily and hands free with your Hickman line.
Details can be found on my website www.centrallineholder.co.uk
Here is yet another example of someone using their personal experience to help others, and I would like to thank Sarah for sharing her story with the community!