23/3/14

Having a lot of a rant

Yesterday I heard sad news about a young girl with CF whose blog I have followed for the last 4 years.

Kerry lost her battle with CF on Friday night; she celebrated her 23^rd birthday last week. She had been on the lung transplant list for 2 years and the doctors didn’t think she would see Xmas 2012 let alone her 23^rd birthday. I think that shows what a fighter she was, this seems to be the case of kids with CF. That said Kerry spent the majority of her time over the last year confined to home and in recent months, her bed. She was 23 for god sake, 21 when she went on the transplant list, she should have been out partying with her friends, marrying her fiancé just living her life. But NO, CYSTIC FIBROSIS had got its claws in her and it wasn’t letting go until it took her life away, just as it did with my lovely kid Rebecca.

When I heard the news yesterday my heart did a flip with shock and pain, it brought it all back and I know the pain Kerry’s parents will be feeling and I feel for them so much. Losing your child is the absolute worst thing that can happen to any parent, nothing and I mean nothing will ever come close to that pain.

Cystic Fibrosis is a terrible illness, it goes on and on and on from the day of diagnosis, it never lets up or gives you a day off. Every day there’s physio, medication, nebulisers, avoiding people with colds because picking up a virus often leads to a chest infection then hospitalization and intravenous antibiotics.(IV’s) Some people have problem putting on weight so have to be fed overnight by tube and trust me lots of people with CF do.(Rebecca was asked to consider this option a couple of times but she managed to gain a few pounds) Diabetes is another side effect as is thinning bones. You have to organise your life around regular hospital appointments, usually 6 -8 weekly. CF is constantly in your face and on your mind, you can’t even go on holiday without making sure you’re fit and well enough to go and this often means IV’s beforehand. It consumes your life. I could go on more about this but It's covered on another tab in this blog.

 When you get to the point of “end stage lung disease” you can be put forward for a lung transplant although not everyone is eligible due to complications of the illness, as with Rebecca. This is not something you expect to happen to a young person and it’s a terrible place to be in because without a transplant the only option left is death. Then you have to wait for lungs to become available and be suitable and from what I’ve read, 1 in 3 people with CF die waiting for a transplant. Terrible statistics.

In CF the average life expectancy is 40 but this then means that 50% of sufferers won’t make 40, this is also a terrible statistic.

This post is threefold:-

1)      I wanted to rant about CF because every time I hear about losing someone with CF it brings all the hurt and sadness I feel back to the surface.

2)      I  wanted to raise awareness and let people know how hard it is to live with and suffer from CF so that people will support me in any fund raising I and my family do in our quest to find a cure.

3)      I want to ask people who aren’t on the transplant donation register to please find two minutes to register. If you have no reasons for not doing so, please do it now, you can’t take your organs with you and they will give someone another chance of living. Only 31% of people are on the donor register - another terrible statistic.
 
I have put a couple of links below, my Just giving site and donor register site. Both take minutes to visit.
http://www.justgiving.com/Sue-Marley-MBE1

https://www.organdonation.nhs.uk/how_to_become_a_donor/how_to_become_a_donor.asp

You might want to have a look at all the tabs on this blog as there are another three which talk about Rebecca, CF and how it affected us and our fund raising efforts. Please have a look and any comments you may want to make will be very welcome, good or bad.

Told you it would be a long post and if you have made it to here, thanks for reading.
Tara for now
Sue x

 

 

9/3/14

Better days and stacks of money

The last few weeks have been hard but I feel I'm turning the corner again. A friend asked me last week if I knew what had sent me on my downward spiral and the simple answer is nothing. I've come to realise that I can go along for days, weeks some times months and I'm pretty much on an even keel, dealing with daily life without Rebecca and just getting on with it as best I can. Then WHAM, I just have times when everything is just too much, everything I think about is just too much, being without Rebecca and all the joy and love she brought, is just too much. The pain in my heart is a physical pain and I can honestly say, my heart is broken and trust me, it will never mend, not until we meet again.

I'm glad I have this blog because it really is a good way of talking about my feelings and not bottling them up. I also hope it is of help to anyone who is a bereaved parent that may read it and know that whatever you are going through, you are not alone though it may feel that way.
As I say, I am beginning to turn the corner again and I'll make the best of it whilst it lasts. I've learnt now to just accept the way I am, this is how it will be. I'll deal with it the best way I can and it doesn't matter what anyone else thinks because only me has to walk in these shoes.

Stacks of cash
Did a Tombola yesterday and raised £625, yep that's right £625, I'm so chuffed with this amount. See the fundraising tab for a picture and a bit more about it.
We've done really well with our fundraising and it's nearly year end so I'll update this soon with the year's total and the total since setting up Becci's Fund. She'd be very proud of us all and it's something that means an awful lot to me because it keeps my girl's memory alive.
 
Good news, we've got the date for the cricket match and it's earlier than normal this year,     Sunday 29th June.

Our opponents for this year are a team from Thornhill Academy Dewsbury and Educating Yorkshire and I think this is going to be a lot of fun, it could even be classed as local "celebrities". I'm already thinking about my piece for the paper "Educating Yorkshire comes to Ackworth" :)

Due to holidays we've had a few people who have had to drop out but I'm hopeful there'll be volunteers coming along to join us and help out on the day. My niece Lynda and her partner Ash have had to drop out but by that time we'll have a little addition to the family, my new (great) niece whose name may or may not be Rosie :)

My swimming is coming along nicely, I've still not developed webbing between my toes but I do wonder when I'm swallowing gobs full of water, do people ever pee in here:( 
I suppose there will be worse in the lake!!
Anyway I'm not going to beat about the bush, I need sponsors so go to the link below and get your dosh on my just giving site:-

https://www.justgiving.com/account/your-pages/Sue-Marley-MBE1

I am also putting another link on here and it is a link to the CF website to blow up a balloon and show your support of anyone you know who is affected by CF. That means people who have CF, lost their life to CF or families that are affected by the illness. You can show your support and also write a message. If you can't do it from your phone please take the time to do it from your laptop, it takes minutes.

http://noparty.cysticfibrosis.org.uk/

I think that's all for now folks, I hope you've enjoyed reading, in fact thank you for taking the time to read. Fund raising tab has been updated as well.
Sue x