Open Letter about Malcolm Sargent House

Dear Supporter, Campaigner and potential supporters,

I’ve decided to write this open letter to explain my thoughts and feelings towards the news of the proposed closure of Malcolm Sargent House. I’m doing it because I get it, I see it from both sides and because I feel currently my voice isn’t being heard with you. I’m sorry it’s so long but it seems you’ve all had lots to say too.

As a young person at the age of 20 I was diagnosed with Very Sever Aplastic Anaemia which meant I had to endure high dose chemotherapy, a bone marrow transplant, months of isolation, and many many long lasting complications. I have been to Malcom Sargent House a few times and I have a lot of fond memories there, including the last time I saw two of my cancer friends Carly and Freya. I had many laughs, shared many tears but I have long lasting memories from there. Yes, I will be sad to see it go like anyone else, I see the benefit of it, but I also see the bigger picture which is what I’d like to share with you.

I’m very lucky to be alive as I was extremely unwell by the time I was diagnosed but I’m even luckier to say I had the support of CLIC Sargent. Currently CLIC Sargent can only support 2 out of 3 children and young people who are diagnosed with cancer. This is not fair to them or to me, why should I feel guilty because I got something they didn’t? Why do they have to go through this hell like slog without any support? Well currently it’s because there isn’t enough money to fund extra social workers, community workers, play specialists and community nurses. There aren’t enough Homes from Homes or enough money to give every single person diagnosed with cancer under the age of 24 the grant they so desperately need.

For me personally my social worker saved and gave me a life, at diagnosis I thought my life was over! I’d been told I had months of isolation ahead of me, needed at least a year off from university, and possibly had years of recovery ahead with no end in sight. I lost my independence, my confidence and my financial stability thanks to not being a student for a year. The time I first met my amazing social worker I was at rock bottom. She came into my room and all I wanted was for her to get out, but she respected me, my space and my feelings whilst also letting me know she was there to help.

When I eventually let her sit down with me she really helped! She tied up loose ends with uni and student finance. I got a grant from CLIC Sargent and the benefit advice I needed. She also helped me come to terms with my illness, the treatment, the loss of university and Camp America (I was about to leave for). She spent hours and hours sharing my prison cell that is the transplant ward, chatting to me about anything and everything just to get me through the day. She helped me prepare for the big wide world outside that door, visited me in follow up, helped me settle back into my uni house. She took me out for coffee so I didn’t feel trapped at home, listened to my hopes, dreams and fears, and helped me plan for my new future. She helped me return to uni, and helped me realise going part time was ok. She helped me get through some very difficult mental health patches, making sure I had the right support in place at all times. Told me about the holiday opportunities like at Malcom Sargent House. Enabled me to help push CLIC Sargent’s direction by sharing my views and opinions with the participation team. She helped me stick with university through the good the bad and the ugly. She is so important to me that she was the first person I rang when I got my degree results. She’d pick me up, dust me off and push me when I needed it. She is my shoulder to cry on, my friend, my second mum, my rock, my guru, my social worker. I couldn’t imagine my life without her, I certainly wouldn’t be where I am or who I am today without her.

It makes me really sad to know that some people out don’t have this and they are really struggling, not able to have that friendly ear, to have someone to talk about the dark stuff with and with support to thrive after cancer. CLIC Sargent social workers also are there to listen and support those who unfortunately won’t survive too they help them plan, and have control but also help the families grieve. I know people that haven’t been lucky enough to have the support of CLIC Sargent at this time, I’ve seen how difficult that is and that’s not ok.

I have read some of the comments on Facebook and on the petition that some people aren’t as lucky as me, services have been stretched to thinly or worse still there isn’t the help there for that child, young person and their families. I’ve read and know personally about the massive benefit of being able to go to MSH but these people (myself included) we able to go because we had CLIC Sargent support in the first place.

I’ve read comments about Dara our wonderful director of services, the trustees and the other directors not having a heart, apparently earning too much, not thinking about the impact of MSH has and questioning if Dara had ever visited MSH. I can tell you from my own experience yes she has. She saw my tears, heard my laughs (some would say cackles), and listened to my experiences along with those of many others. She did this to help shape and improve services in the future. This decision regarding MSH is not one that has been taken lightly, thoughtlessly (the directors and trustees have memories there too) or without serious consideration of the options. Unfortunately something has to give so the charity can survive and thrive in the next 10 years. In terms of the directors earnings their pay reflects their job as is the with any charity. If I could and the charity had the money- I’d give every single member of the CLIC Sargent staff a raise. If these highly capable people were working in the business world and not the charity sector they would be getting ten times more money, for way less effort. So please don’t question this I don’t want them to leave for a business job! CLIC Sargent are a charity that cares, a charity that listens and a charity that’s in it for the long haul, it’s a charity with heart, soul and passion from the casual volunteer bucket shaker all the way through right up to the top.

CLIC Sargent’s 10-year strategy Aiming High which consulted the views of children and young people throughout its development. Ambitiously want to support all children and young people under the age of 24. To do this the charity has to grow, and find those children and young people that are currently missing out. Find where services are stretched and not working effectively and push them to be the best they can be. BUT and it’s a huge BUT to do this the charity needs to be in a position where it is fanatically stable with the resources to be able to grow. This is tough, in a time when charities across the UK are struggling more and more to raise the funds whilst also trying to keep the costs of running the charity down. With bad press about charities, financial uncertainty in the world’s economy and the competition for charity support- it’s tough. There are new legislations coming in all the time making it difficult for charities to contact supporters in the ways they use to, people’s attitudes to fundraising are different and less secure so the charity sector has to be creative and at times make really tough calls.

If the charity had more committed direct debit supporters, more charity partners and more fundraisers then this tough decision about MSH wouldn’t be on the cards right now, but the charity needs to be create financial stability now so it can grow effectively in the future. Every single person who has signed the petition to save the house, has an opinion about this decision, or is currently reading this could do more! It could be that you’re already a committed giver and for that I thank you immensely, but have you talked to a friend who might consider supporting the charity to help keep vital services afloat? Are you someone that could dig a little deeper and increase your support or start a direct debit or taking on a new challenge. Do you work for a company that could help CLIC Sargent? Why not contact corporate@clicsargent.org.uk and start that conversation? If everyone was able to support the charity that little bit more and that little bit sooner this decision wouldn’t have been on the cards at all. But they need you NOW more than ever to stop them to have to make difficult decisions like this again.

In truth MSH costs the charity £500,000 per year (this does not include the money needed to make repairs, or the costs of the flights/ transport to get the families to MSH). This doesn’t matter if the house is full to busting or only having 3 families there the costs are the same and those cost are going to keep rising. Yes, it’s a safe haven, it’s a rest bite holiday, it’s an amazing place and yes, I’ll be sad to see it go. However, it’s also part of something much much bigger. It’s part of a charity that cares about the children and young people it sets out to support. MSH can only cater for the 5% of people the charity currently supports and there are 1 in 3 across the whole of the UK that currently are getting no support at all. Which is better supporting everyone- or supporting that 5% so well that the 1 in 3 will always remain without any help and support?

The charity is struggling so tough and very difficult decisions have to be made. They are already making cuts wherever they can, restructuring departments so they can be as efficient and cost effective as possible, but people don’t see this. People see the staffing costs growing without looking at the number supported growing too. They look at the money raised and think it’s all spent on lavish company cars and holidays abroad (no they are a charity- a fundraising organisation not millionaires!). This money raised is actually, it’s spent on people like me, people like my friends that are no longer here, and 10 children and young people that will be diagnosed with cancer TODAY!

On Friday I attended a meeting where Dara de Burca and Kate Lee (director of services and CEO) listened, acknowledged and cared about the thoughts and opinions of the Young People’s Reference Group (Designed to help the charity listen to the views of its service users there is also a children’s version). They answered our questions about why they were making the call, and what would happen to the services offered there currently (social workers will refer patients and their families to other charities that offer holidays, and bereavement work will be looked at with the best way to continue this whether that be locally or in some other way.) They explained the reasoning behind this decision that money is tight and they need to be able to protect services that are key and accessible by as many children, young people and their families as possible. We all were able to see the bigger picture, that the charity needs to be financially stable to continue to offer those vital services. To get into in a position in the future to be able grow and reach that 1 out of 3 CLIC Sargent currently can’t.

Finally, I’d like to thank you for reading this letter, I’d like to thank those who have put in the hours and hours of thought to get to this difficult decision. I’d like to say to all those who have shared a memory of MSH thank you it shows that CLIC Sargent were there for you. To those that are angry about this decision I hope that you are now able to see the bigger picture. Ask the question which would your children rather seeing someone struggling and not able to have any help and support or going on a few days’ break? If you haven’t had CLIC Sargent support or had a bad experience tell them about it, they are a charity that want to help more and wants to continue to improve the services offered.

They need you, all of you.

How can YOU help CLIC Sargent now??

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For Emily

So I thought I’d post some more about the reason I’ve come to blogging my inspiration and why I’ve suddenly felt the urge to spill my guts and write.

Recently I lost an amazing cancer friend called Emily Clark. Loosing any cancer friend is hard but loosing em has been one of the hardest. I first met Emily when I was on Teenage Cancer Trust for my monthly immune system infusion boost. She hadn’t been in very long and I remember thinking how young she looked. I decided to go over and say hi and offer some words of wisdom. Em was lay in her bed trying to keep herself occupied- she looked really thin and it was only her first or second day of chemo. She told me that the nurses had told her if she didn’t eat they would give her a feeding tube. So I’ve had a number in my time so offered some words of advice similar to this….

Yes a feeding tube isn’t ideal but it isn’t as bad as you think it is!! The nurses have done this procedure thousands of times (and prob had to practice on each other too) so they know what they are doing. When it goes in it tickles around the edge of your noes and does that until it reaches the bend but that’s the worst part- it’s a strange sensation but it’s not painful.

The nurses get you to sip a drink through a straw this is helps in two ways one gives you something to focus on and two means the tube is eased in the right way into your stomach.

The feed itself- well it sometimes makes you feel a little bloated but it’s because they are feeding you what you should be eating and if you haven’t been use to that it makes sense.  Having a feeding tube doesn’t stop you from eating what you want either they can change the amount of feed at any point.

The biggest pro for having it is it takes the pressure off. Makes you able to eat what you want when you want without worrying about the nurses nagging you to eat more.  There are downsides like with anything being sick for instance means your line comes too. My advice clean it off before they take it out!!! But this point you have seen the benefits, have had it done before and so can do it again! Also I explained that if you have methotrexate (a type of chemo) this can cause you to get blisters and ulcers in your mouth, throat and stomach lining- not everyone gets it so don’t stress over it- but if your throat becomes sore, even just s little bit.. Get a feeding tube in because once it’s bad they can’t do it because it’s to sore and blocked- eating at this time becomes impossible so it’s best to get it in quick so ur not left hungry but unable to eat.

Em still wasn’t keen on the idea but at least she did know what it was like in case  she needed it. We talked about school and the implications cancer would  have but Emily was determined it wasn’t  going to get in her way, and I don’t think it ever really did.  We talked about JTV then jimmyteens and how she could find videos of patients talking about their experiences and  find out information about her cancer. I spoke about all the things cancer has helped me to do like sailing and nights out with cancer friends and knowing your not on your own. These were all thing that she couldn’t wait to get stuck into! Shame the unit lost our support worker fairly early on to em being on the ward, and has only just been replaced with a permanent member of staff 2 years on. I really am gutted that she never got to experience some of the amazing things I’ve been able to.

Emily was one of those people who you would sit down with for 5 mins and instantly become friends, age didn’t matter, em was so smart and mature she could talk to anyone. If she didn’t know something she’d find out, throughout her treatment she always asked questions and would want to know everything. Emily never complained she kept positive and knew that she’d get through it. Emily was fantastic at telling you how it is, she’d say ‘well I’ve got a bit of GVHD, but its only a bit so it wont stop me.’ She would call you out if she thought you could push yourself more or if you were complaining about something petty and insignificant. She’d listen to you stories of beyond the hospital walls despite not being out of them herself very much. Laugh with you and was one of the best at giving balanced advice when you needed it most. In the days since her death this is probably what I miss the most.

Em would tell me about her science work and what she was learning (science wasn’t my thing as you may remember) but she told me anyway- using so many words you’d come back 3 days later and she would still be chatting. I spent hours chatting with her, sometimes hours after I’d been un-hooked from infusions and could leave but I chose to stay because it didn’t matter where we were- we’d never run out of things to say. She was strong minded and focused on her future and despite being hit by every side effect known to the cancer world. I always thought she’d be ok. There were times where visiting wasn’t possible or i’d be thrown out by one of the nurses because one of us was too ill to be around the other (what a load of nonsense). But then we talked through facebook when she was in isolation during transplant about the incredible boredom but not having the energy to do anything. We talked about food, music, books and blogging. She had so many things she wanted to talk about- wanted to thank, em always had a long list of ideas and half started blogs. Two of which we spoke about I am going to write about in the future. I never felt like I could write like this before- but em has pushed me to it- and back to it even today. I’ve had a really tough days since loosing em and I think its because I believed in her future plans as much as she did, and I’m heartbroken that I wont get to give her uni advice, or how to deal with the fatigue advice- but been strong on the outside just like em, smiling and chatting away not letting the world get to me. After all Em wouldn’t complain- so why should I.

One of the most resent things that Em did that has changed my life was talking about her faith with me. I remember hearing her voice when I called into the ward waiting for some meds- but couldn’t see her. I asked her brother (not recognising a now very grown up Evan) if he knew where Emily Clark had gone (thinking she had been shoved in the parents room again). He told me it was his sister and she had just been given a bed downstairs- so off I rushed to be faced with the smile of Emily and her mum Donna. Donna left Emily and me to it and went to join Evan (or maybe take him to football). Me and Em got chatting straight away- she had been having some trouble with GVHD and they thought it was effecting her lungs. But Emily was her happy go lucky self- had to have some stitches out from her new line insertion/ or removal I cant remember which. Jess (the mess a nurse who I love) came in and asked if we were happy she did it in front of us both and of course that was fine cuz we could continue chatting away. Id recently lost a cancer friend who I was close with and I was telling her that I decided to go to his funeral (despite me not normally doing so with cancer friends) thanks to the EMCT guys letting me know they would be there and I could stick with them- it really helped me having the support from them. Anyway- my point was that I found his funeral perfect- it may sound silly but it really was and I will explain that more in another post. But what it did get me to question was my own faith- how had his remained so strong throughout and mine- well I wobbled so far off that I hadn’t been to church in a very long time (baring Christmas and Easter cuz that’s different).  I explained about how my flatmates seemed to have a strong faith, and I believed in god but just wasn’t feeling very connected. She challenged me on this- and she challenged me well, asked me what was stopping me- was I in a hospital bed on a Sunday? Or any day of the week pointing out faith isn’t just for Sunday’s. She told me I had to find a church that fitted me- and not all churches would. She inspired me with her faith it was so strong despite everything she was very comfortable chatting about it all with me. She knew her maker as a friend, this was something I was envious about- but it all made sense to me once I realised, that’s why she wasn’t ever ‘ohh woe is me’ because she prayed about her worries and let them go. She would read scriptures and be inspired by them, but also knew that science was her calling, hence the reason she was so committed to her studying from a hospital bed (I don’t think I’ve ever seen another teen as committed to work before.) I’m so grateful for Emily challenging me in this way because I’ve now found a church that fits me, its relevant to me and challenge the way I think about the world, God and myself.  A few months ago writing this challenge that Em set me wouldn’t have made it to the page- but I’m proud of my faith- and I’m Proud of Emily!

About 2 weeks later I wanted to tell Emily that I hadn’t forgotten but had been ill and I was visiting home that Sunday- but that I’d found the church I wanted to try on Mother’s Day. She was in a side room (which either means they are worried about her getting something, giving others something or she isn’t well.) Unfortunately it was a bit of all of it- our TCT doctor let me know she had to have some painful tests earlier on that day and just needed some rest. I messaged Donna and Em to let them know I was thinking of them, and praying for them. A few days later Em posted something social media- to me I thought that the worst was over and she was getting better, so I stopped worrying and concentrated on getting myself infection free again so I could go visit her, and tell her all about my amazing new church.

I was at an Ellen MacArthur Cancer Trust training day when I began to feel odd- All morning id been jumping around full of beans and then all of a sudden I wasn’t- I put it down to nerves of the game between Wales and England. I brought a bracelet at lunch time and thought about getting one for Emily, but then a thought came through my head what if she wouldn’t like it- so I brought one put it on and decided I’d give it to her if she wasn’t well enough to go on a trip this year (whether she liked it or not). I then went to put Peter’s name on the memory tree that the trust do each year- and I cried- remembered the good, and looked forward to the future. Later I went to watch the rugby with 2 of the girls from the trust- we found a pub in Birmingham just before the anthems (thank goodness). I was praying for the boys to do well, to play with integrity and win- but god had other plans- his hands were busy welcoming my friend Emily into heaven. Just as wales began to play again in those final 10-15 mins I got a message from Donna saying Emily had passed away. I lost my breath, and couldn’t see past the tears. I was more than distraught I was devastated I was pleased that I was surrounded by cancer friends who got it- but it hit me hard.  My life since that moment has not been the same, I think about Emily every day. I talk to her, pray with her, and am inspired by her every day.

Since loosing Em I’ve written a list of about 100 blog idea’s, got more involved with Charites including some that I hadn’t prior to Emily’s death, and I’ve made God/Church is a big part of my life. Emily has taught me so much, how to not just live life but thrive despite what ever gets in my way complications wise. To have a kind heart that listens to others and offers support and guidance. To smile even when all I want to do is cry, reach out to those around me when I need it, and to write this darn blog- stick with it and dedicate some time to doing it. Thankyou Em for your wake up call today to push me to finish this post.

Emily’s final weeks were spent planning to inspire other’s. She loved our BMT Consultant Dr Wilson, and knew that the BMT ward wasn’t fit for purpose. So started to plan a way for a new unit to be built with a ball, and lots of fundraising events. I’m sad she will never get to see this built but proud that she has inspired so many to get behind her dream! Em was inspiring but in her words- ‘I don’t want you leaving this saying how  inspirational I am unless you are inspired and motivated to do something.’  Emily Clark- Founder of remission possible, in remission right till the end.

EmilyIf you have been inspired/ touched/ read this blog I would encourage you to visit her website- https://remissionpossible.org.uk and consider donating to the ward (which I will harp on about a lot so you might as well get a donation out the way) https://www.justgiving.com/remissionpossible.

(Please bear with any mistakes or weird sentences I’m still getting use to this blogging malarky!)

Welcome to my blog!

Hello world!!

So welcome to my shiny new blog!! You maybe wondering what the heck I’m blogging about this time. Well it’s going to be very different from my art blog that I did last year for two reasons; firstly because I don’t have to do it for marking purposes and secondly because it’s not going to be about art but about cancer instead. I hear your sigh!! And the ‘aren’t you over that yet???’- Nope, and I’m proud of that- my life is different and always will be, I’m embracing it and #daring2Bdifferent!

For those who have no idea who or what I went through I am please see my story page. This gives a bit of an idea of who I am and I will update and edit this as time goes on and I become a slightly better writer. I’m not a great writer so please bear with I’m learning. I’d say I’m a people person, put me in a room with a group that I don’t know and I guarantee I will walk out with a few new friends, and I will always have lots to say, but essays and writing- ugh nope not for me!!!

For those of you who sighed earlier isn’t she over the whole cancer thing yet- no I’m not and why should I be- cancer changed my life and I’m proud of that. It’s given me some fuel to my fire and something to shout about. Some who are diagnosed choose to have it as a small part of their long lives and don’t mention it and that’s fine- I get that’s what some people choose to do. Others shout it from the roof tops and that’s just as OK. Me- well I do some (maybe a lot) of that shouting from the rooftops bit but also I’ve been left with some long term effects that mean for me a completely ‘normal’ life is still some way off maybe it won’t ever happen but who cares- I’m me, and I’m proud to be where I am now!!!

So why blog and why now?? Well as many of you already know I lost a dear friend recently called Emily- she wrote a blog and founded a charity by the same name remission possible (see here). Now Em was not someone to sit and do nothing, like me she had lots to say and wasn’t afraid to say it… In short she has inspired me so here is my new blog- one of my first posts will be about this amazing girl so keep an eye out.

I’ve been thinking about blogging for a long time- but I tried it a few years ago and gave up very shortly after because I didn’t know what to write about, didn’t dedicate the time and was not in the best place for writing it and I felt it was a bit too ‘woe is me’ so gave up. Now I’m 5 years post transplant almost 6- so I’ve had a lot of time to reflect on my experience. I want my blog to be helpful for others, honest,  Inspiring (to fill (someone) with the urge or ability to do or feel something, especially to do something!) to those who haven’t walked in my shoes, therapeutic for myself, and difficult for me to write because I don’t want to just give the PG version of events!

I do expect at times it to be hard to read- but its my story, my feelings so please respect that, you have the choice to read or not to read it. Like anyone else out there blogging I’m not setting out to be the next booker prize winner, or for my blog to get very far- but if it helps just one person then I know its working.  There are lots of Cancer blogs out there and so with time I hope to be able to point out articles or blogs that have helped me. I have talked to many of my blogging friends and we have talked about how many of their blogs just scratch the surface and stay PG. I completely understand this because family and friends read them but I’d really like to try and push myself past this and not hold back.If this blog is going to be daring to be different I’ve got to get past that people I know and love will read this and write how it is anyway.

I do expect myself re-visiting blogs from time to time and changing my opinions or adding to them when I feel I need to but I’ve already come up with a list of over 100 blog post ideas and it keeps growing- so I really need to get started, and quick!!!