Hello all. I hope everyone is having a lovely day! At the moment I am feeling rather sick and nervous.. I'm going to London this afternoon as tomorrow I'm speaking at a Teenage Cancer Trust event in Westminster (EEEEEK). I'm really excited but also TERRIFIED. I've to speak for about five minutes all about the Young Voices campaign that I contributed to last year. I thought I would share with you all what I'm going to say. So, here goes...
Hello. My name is Mairead Macleod. I am 26 years old and come from Uddingston, just outside of Glasgow. I wanted to contribute towards the Young Voices report as I thought it was very important for the Government to know the difficulties that young people with cancer face.
I was diagnosed with a non gestational choriocarcinoma in May 2010. In hindsight, it is clear that I had typical symptoms of a young person with cancer - tiredness, weight loss, nausea, loss of appetite etc. I had been to my GP on several occasions and just been fobbed off. My Mum, who is also a GP, then stepped in and forced my local hospital to scan me. After a number of scans, a tumour was found in my bowel with mets on my liver. I had my first operation in Wishaw and was then sent to London for further treatment. I had four months of constant chemotherapy, another operation, two rounds of high dose chemo and one final operation in January 2012.
Firstly, I would like to focus upon the delays in my diagnosis. It took two months of too-ing and fro-ing to my GP surgery to finally be sent to the hospital. When I was diagnosed, I was told that my tumour was very fast growing so we are lucky we didn’t leave it any longer. On all the occasions I went to my GP, I was made to feel like a nuisance and was sent away with medication. From reading of other peoples experiences in the Young Voices campaign, it is clear that this is very frequent and unfortunately for some people, diagnosis is too late. I completely appreciate that for a GP a young person with cancer is very rare, but I don’t think this is an excuse for not responding quickly enough to the obvious signs.
In total, I have been in five different hospitals and each have been very different. I was initially sent to London for treatment and was very lucky when the concept of shared care between London and The Beatson, which is in Glasgow, was introduced. I was not on a Teenage Cancer Trust ward whilst I was in London, and I noticed a huge difference - mainly in staffing levels. One night, the lady opposite me was struggling to breathe and I had to run around the ward attached to my chemo, looking for a nurse to help her. I was in unfamiliar surroundings and had no knowledge of cancer or chemo. There were only two nurses on for the whole ward that night - it made me feel even more frightened.
It was a huge contrast when I was in the Beatson, on a TCT ward. On my first night, once my Mum left, a nurse made time to bring me a cup of tea and have a chat with me. I felt so welcomed and it really put me at ease. It was the little things like this that I really appreciated.
In my room I had a TV, DVD player, computer with internet access, lots of storage space and my own bathroom. I was also next door to the ‘Chill Out Zone’ which had access to a pool table, sky TV, even more computers, and most importantly - a kitchen with a toaster, kettle and microwave! I know a lot of focus is made on the ‘things’ TCT give to patients, all of which are very important. However, for me, it was the support of my specialist nurse Julie that was incredible. She introduced herself to me on the first day I came in and visited constantly. She dealt with all the organisational aspects that come along with treatment that I would never have considered. She also provided support for myself and my family. It was great to speak to somebody who understood everything I was feeling and could answer all my stupid questions. It is clear from reading the Young Voices campaign, that being on a TCT ward dramatically improves young people’s experience in hospital. It is pretty miserable being away from friends and family yet the TCT tries to keep surroundings as normal as possible in an abnormal situation.
After my treatment in the Beatson, I was sent to London for my big operation. Once again, I was not on a TCT ward and it was very strange not being in one! Visiting hours were very strict and infrequent and it was horrible being in so much pain and not being around my family. For my high dose chemo, I was at another hospital. As I was in over Christmas, staffing levels were very low and my Mum and sister did most things for me - they dressed my hickman line, changed my sheets, help me wash etc. I completely appreciate that nurses are very busy, particularly in a ward where there were a lot of very sick people. However, from being on a TCT ward and then a general ward, the difference in the amount of nurses is very clear.
One thing has remained the same throughout my hospital visits - The food. I know it’s a terrible cliche to say that hospital food isn’t great - but it’s the truth! It probably sounds very odd to say, but whenever I left hospital, I was craving a salad! When I was getting my high dose treatment, I saw a nutritionist most days. At that point I had terrible mouth ulcers and nausea so was struggling to eat anything. It was incredibly difficult to try and eat well with a limited menu filled with stodgy food when I wasn’t wanting to eat a thing!
Through the TCT, I have also made some great friends. When I was first diagnosed, I presumed I was the only person in the world to be going through this - even though I was constantly surrounded by friends and family, my situation felt very isolating and I wanted to meet someone going through a similar experience. Occasionally, I found it difficult to say exactly how I was feeling around my closest friends and family - I felt if I vocalised these feelings, it would only make things more difficult for them. However, with the friends I have made through the TCT, I’ve found that I can be as open and honest as I want as they’ve been in that situation too.
Furthermore, I have had wonderful experiences through the TCT. I have been off work for over two years now, so evidently have a lot of free time! However, I have been offered tickets to Music Festivals, events, Scottish Parliament and now here! I have also held my own fundraising events which have raised money for the charity.
It is over 2 years since I was diagnosed and I had my last operation in January. I feel very privileged to be involved in the Young Voices campaign and I hope it gives those who read it an insight into the trials that young people with cancer face. I’d never really thought about cancer prior to my diagnosis - I guess I just thought you’d lose your hair! Unfortunately now, I know there is a lot more to it.
If anyone would like to know more about the Young Voices campaign, just have a look here... http://www.teenagecancertrust.org/workspace/documents/Young-Voices-report.pdf
Well, I best be off and finish packing. I'm so scared that I'm going to forget something! I shall report back with how everything goes. Laters!