27/12/14
 
Christmas has been and gone for another year
 
Thought it was time for an update as it's been a while again and one or two things have been and gone.
 
We went to the Casino for Paul's 60th we had a few drinks in Leeds and then onto the gambling. We went a week early so everyone could go but it was a smashing night and even the pouring down rain didn't dampen the fun. We always have a great time when we all get together.
We didn't come out any richer but it was well worth going and it's something I'd definitely do again.
 
On Paul's actual birthday we didn't do anything it just passed by as another day. I know if Rebecca had been here it wouldn't have been quiet but this is something we've had to get used to and as hard as it is, we have to just get on with it.
I think what we've learned over the last 51/2 years is to do things differently and it doesn't hurt as much. That's the key really, we have to do what makes it easier for us.
 
So next comes another Christmas which seems to start earlier and earlier in the shops these days.
I've found if I buy my Christmas cards as soon as they're in the shops, i.e. November, it's better because there's no Christmas music continually playing and I just avoid looking at cards for Daughter. I don't buy many presents because I find it really hard shopping for others when all I can think about is what I'd have been buying for Rebecca. This is where doing things differently comes in, I just give money although I do buy for our Mum's and my great nieces Eloise and Isabelle.
I do put some decorations out but I don't have a tree anymore as there were always so many presents under our tree I can't deal with the empty space there would be now.  I do put my picture up that was painted by my Dad and Rebecca 30 odd years ago and I can look at that and smile. I love this picture.

Rebecca loved Christmas, she loved buying for people, wrapping presents, writing cards and all the socialising that came with it. I know if she had still been here things would have changed because she'd have been married and not at home but I know she'd still have spent loads of time with us and the house would be noisy instead of being quiet and empty. It is something we're getting used to and each Christmas is getting better to deal with but it will never be the same ever again. The emptiness is horrible all through the year, it's taking some getting used to.
As I said earlier it's doing things different that helps so this year we went out in the afternoon on Christmas Eve and our friends Bryn and Ann also popped into the pub so we had a nice couple of hours with them. Christmas day after vising Rebecca and my Dad with my Mum (thankyou to everyone who visited her as well, it means a lot that you continue to remember) we went to Paul's mum for dinner and saw Eloise and Isabelle. Isabelle is too young to understand but Eloise was like a whirling dervish racing round opening everything. She was so excited and it was lovely to see and join in with. Christmas dinner was cooked by Paul and Jill and helped by Paul whilst I kept out of the way and it was lovely. I did say I'd wash up afterwards but Mr Liversidge got in first so I didn't get chance, though I did manage to help a little bit.
Didn't do anything Boxing day apart from having a few quid on the horses and a few drinks at home. typically we didn't win anything but it was fun picking them out, shocking Paul when I wanted to put £1 each way on a horse instead of 50p and watching them lose. So that's Christmas over again, It's been quiet but only New Year's eve to get through now. I've never liked New year much anyway so I'm not bothered about staying in and just letting it pass as another night.

On a positive note, Becci's Christmas raffle raised £1238 and to my family and friends who as always, help me keep Becci's memory alive and raise money and awareness for Cystic Fibrosis, thank you for your sterling effort in selling tickets.

I think I've bored you enough now, so if you've got this far, thank you for reading and I'd like to wish you all good health, wealth and happiness for 2015.
Sue xx

13/11/14

It's been a while, some ups some downs

Since I last blogged I've been a bit up and down which doesn't really surprise me anymore, it's just the way life seems to be now, but on the whole I've been OK.
There's been a couple of sad days to get through:-

On 17th September another year has passed since I lost my Dad, I really do miss him but I'm glad he's not suffering anymore. He was 76, a lovely lovely man, had got married, had a family and lived a good and happy life so to some degree, I can accept his death.

On 8th November Rebecca would have been 33 and as each birthday comes and goes, they are getting harder to deal with. I spent this year absolutely heartbroken, worse than I have been before and I really struggled, but as usual, from somewhere within the strength surfaces again and I live to face another day. I cannot accept Rebecca's death, I don't think I ever will, it's not fair especially when I think of the horrible people there are still living in the world. But that's life isn't it and  you either have to get on with it or sink and I'm not sinking at the moment. Rebecca would be bloody annoyed with me if I did and as I believe we will meet again, I won't risk her wrath.

I've been feeling a bit bitter towards Cystic Fibrosis just lately which isn't something I've really felt that much before and consequently, I've lost my enthusiasm towards fundraising a tad. Having said that, me Paul and Jill are in the middle of organising  Becci's Christmas raffle with a mini iPad and Marks & Spencer hamper courtesy of both Granma's, as first and second prizes.

Another thing I've been doing a lot lately is questioning myself  about whether I gave Rebecca enough support in the last months of her life. Although we were extremely close, (we used to have the same thoughts at the same time) we did both try to protect each other from things we thought might be upsetting and this is where I think my thoughts come from. I keep wondering if Rebecca was worrying about her death because when she was turned down for the transplant on 17th February she asked the doctor how long she'd got left and was told 6 months to 2 years, so she knew her destiny.
She asked me in the May if I thought about her dying and I said "no because I can't contemplate life without you so I try not to think about it" She just replied that she did and funeral songs had been popping into her head. We didn't carry on the conversation nor did she bring it up again and within 6 weeks she had died, but from her reply it was obviously on her mind. Knowing Rebecca she wouldn't want to mention it again because she wouldn't want to upset me, but I really wish I had, then I could have spoken to her about any fears and worries that I'm sure she would have had. We used to talk about absolutely anything and I mean anything but it seems this was one topic neither of us could and I feel I let her down.
I know I can't do anything about it now and I'll never really know if this was the case and I won't beat myself up about it anymore but I'll always wonder if I could have done more. Having said that, it all happened so quickly and even though we knew she was gravely ill, it still came as a shock when she died so soon. I suppose really in the end, we didn't know what was going to happen so couldn't do anything about it and maybe these thoughts and wonderings are just me still trying to come to terms with her death.

Paul is 60 on 28th of this month and we are going to celebrate with a family night out to Napoleons Casino. I'm sure if Rebecca was here, he would be getting a party whether he wanted one or not, she'd be having so much fun organising it. But she's not here so we'll just go out have a good night and raise a glass to her and my Dad and I'm pretty sure she'll be having a drink or ten for him and my Dad will be having his usual couple of pints.

If you're still with me, thank you for taking the time to read my blog.
I'll finish for now and update another day with news of the casino and whether Paul is any better with cards and roulette than he is with the horse racing, haha.

Bye for now.
Sue x

Sunday 28/9/14
 
First family wedding
 
Thought I'd update about my niece Kayleigh's wedding to Dean.
 
It's the first family wedding that I've been to since losing Rebecca and the thought of it was so mixed and emotional. I was very much looking forward to it because it was my lovely niece Kayleigh who was getting married and she and Dean are so happy and in love, it was the next natural step in their life. But, it was going to be difficult for three reasons, 1) It was the same weekend Rebecca should have married Richard and enjoyed all the wonderful things she'd planned 2) Having to deal with the knowledge that me and Paul won't ever get the chance to be parents of our lovely daughter as a bride in the setting she'd planned and 3) My wonderful Dad wasn't going to be there either.
In the end even though I faced it with apprehension It was an absolutely lovely day in a beautiful setting and although I shed some tears, (as did others) it was a most enjoyable day.
Kayleigh looked absolutely beautiful in her wedding dress and seeing my brother Rob walk her to the alter brimming with pride was special. Watching this was a bit difficult but I was also filled with pride for them both.
The wedding ceremony took place in a folly on the edge of a lake watched by family and friends and the weather was thankfully beautiful.
I wasn't on my own missing special people, my Mum was and so was Kayleigh's Granddad Ted.
Mum and Ted were sat together without my Dad and Vera watching Kayleigh get married and it occurred to me how sad they must both have felt as well and sometimes realisation like that can put things in perspective.
Even though I wish things could have been different, they're not and in my heart I know Rebecca and my Dad as well as Vera will have been there with us, watching, smiling and enjoying the day. 

Rob walking Kayleigh to Dean

 

Rob and Dean's best man and Brogan speaking about marriage

 

The happy couple, now Mr and Mrs Hepworth

 
We went on to have plenty to eat drink and made merry as well as accidents and it was great to meet up with the girls from the hen do.
I really did have a lot to drink I actually smoked 4 cigs that night, something I haven't done for 10 years or more. Not had any since though and no yearning to have any thank god!! Such a bad habit.
I then went on to fracture my collar bone sometime in the early hours of Monday morning and got up feeling like shit with a hangover from hell. Was sick in the car park of the posh hotel, then at the top of my Mum's street and have had a sling on my shoulder since. (Wonder if that's payback from Rebecca for having those ciggies, she'd be as mad as hell about that :) .)
It was a brilliant day though and accidents and hangovers aside, I wouldn't have missed it for the world.

Morning after - not a good sight haha

 
The next time I post I might speak about Rebecca's wedding if I can, it's not something I've spoken about much. People never ask about it probably scared it might upset me, might do me good.

This blog is my way of dealing with losing my precious daughter and helps to talk about how things affect me, so as always thank you for being interested and taking the time to read.
Cheerio for now x

25/8/14

It's been a while

It's been a few weeks since I wrote anything on here so I thought I'd update what's been happening.

I went on Kayleigh's hen do to Liverpool and really enjoyed the weekend. We went in a stretch Hummer which was a great experience but brought back a few memories from Rebecca's engagement do when we went to her meal in a stretch Limousine. But I enjoyed the ride and Kayleigh's face was an absolute picture when we collected her as were half her neighbours who stood outside watching haha .The meal on Friday night was lovely, the floor show on Saturday was entertaining to say the least, the selfie challenge was hilarious just ask Pauline, meeting and making new friends was great and I'm looking forward to catching up with them at the wedding in a fortnight. Even though I had a minor blip I thoroughly enjoyed the weekend and wouldn't have missed it for the world.

One thing I want to say is that when I get upset it's not because I don't feel I can enjoy myself because Rebecca's not here, I wouldn't dare do that, I'll be meeting up with her again some time in the future and I know she'd give it to me big time if I did. I have moved forward enough now to be able to get on with my life and enjoy things but what I do find extremely difficult is dealing with Rebecca not being here to share things with. I miss all the excitement she would have shown in preparing for the hen do, she would have been in her element going shopping for clothes then organising outfits, jewellery, shoes, spending money etc. I just miss the closeness we shared. I spent a lot of time with Rebecca due to CF and it's treatments, probably more than a lot of Mum's get to do and it made us very close, it's hard now to deal with the emptiness. So if you see me at a do of some sort and I'm upset, please don't suggest Rebecca wouldn't want to see me that way and she would want me to enjoy myself, I will be enjoying myself, just missing the most wonderful lovely person that made my world whole and choose how many years pass by, this feeling will never go away.

On Saturday I went with Paul to Wembley to see Castleford Tigers play in the challenge cup final. Had things been different I would have gone with Rebecca and my Dad, we'd been hoping for it to happen for years, but it wasn't meant to be whilst they were still here. Instead me and Paul went and even though it was different just being the two of us, we enjoyed the day even though we lost. I'm sure they will both have been with us though cheering along and playing hell up for not getting into the Leeds players faces more. I missed not having them with us, but if Rebecca had been on the bus on the way home she'd have been telling the bloke sat in front of us to shut up moaning and sit down, she didn't suffer fools gladly (he was definitely an idiot) and she had a bit of a gob on her when she wanted. Think she takes after my Mum in that way :) some may say she takes after me haha.
It was a good day and I actually met my cousin Stephen for the first time in about 30 years and I didn't recognise him, bit embarrassing really. How bizarre though to see him whilst we were both waiting for the bus to go to Wembley.

It's two weeks to the wedding now and I am very much looking forward to seeing Kayleigh looking beautiful in her dress and see her marry Dean who I think is a smashing bloke, but I'm becoming nervous of how I'll deal with it. It's the first family wedding I've been to since losing Rebecca and that would be difficult in itself but it's also on the same weekend Rebecca should have had her wedding. I know it's a different place in time, it's five years on and it's also a different venue but it's another first to face but with a much bigger emotional pull. I can feel the sadness building in my chest now and I'm hoping to get it out of my system in the next week or so and then be strong on the day. I know from the past though that sometimes these feelings are worse beforehand and the actual day turns out to be better than expected, so fingers crossed. One thing for sure though, I have every intention of having a fabulous day celebrating Kayleigh and Dean's wedding and future life together.

A bit about fund raising

I've collected the last of the swim money in and we raised a whopping £1598 so really pleased with that amount, makes it all worthwhile.

Educating Yorkshire appeared on Million Pound drop and although they didn't win they still donated £1250 to the CF trust. I'm so grateful to the school for including Becci's charity when they went on the programme because CF got a little mention.

Lastly, I want to wish a little boy called Jude well and hope that the chemotherapy treatment he's having at the moment isn't making him too poorly. Jude is the youngest son of Emma Parsons who chose to do the Great North swim for Cystic Fibrosis and Becci's fund even though she'd never met me or Becci before, such a star.
Jude was diagnosed with cancer out of the blue a few weeks ago and is currently going through chemotherapy and hopefully won't have to have too many sessions to get rid of the bloody thing. Sending hugs to you Emma, hope you're all bearing up and if there's anything I can do just let me know.

As always thank you for reading.
Tara for now x

17th June 2014

A lovely arrival and the big swim.

Today my great niece Isabelle Rose Harrison was born to my lovely niece Lynda and her partner Ashley. Isabelle Rose came into the world at 12.55pm  weighing in at 7lb 6oz and if she's as gorgeous, cute and beautiful as her big sister Eloise Rebecca, we are a very lucky family.
I can't wait to meet her.
I'll post a picture of her and Eloise on my next blog if Lynda and Ash don't mind.

The big swim 

Below picture is just before we started, Maggie, Emma, me and Brogan.



To say this challenge was hard is an understatement, it was the hardest thing I've done so far and as with the skydive, I will not be doing it ever again.
Swimming 2 miles in the swimming pool is a doddle compared to swimming in a lake.

The first thing to overcome is actually prising yourself into a wetsuit and then getting used to the feeling of being squashed. Does make you look a bit slimmer though - every cloud has a silver lining I suppose.

Next comes the quick dip in the lake to acclimatise yourself to the water, that took my breath away and made me panic a bit.
Then, after getting as far to the back as possible I got in the water and started swimming with all the other competitors whizzing passed me, bumping and jostling, bringing on the 2nd panic of the day.

Once the masses had swum away with ease, my journey began.
Firstly the wetsuit was so buoyant I felt like I was floating, the water felt colder than it did 10 minutes earlier in the warm up and even though I was moving my arms and legs, I didn't seem to be going anywhere. Brogan and Emma were away in the distance with the others, but fortunately Maggie was still with me and that's the way we stayed.
The pool didn't prepare me for the waves which were probably made by the safety people in canoes or boats going passed further out in the lake, I made the most of these though and let them carry me along a bit. There were currents as well which dragged you a little bit and were worse on one side than the other.
The first mile was hard but the start of the 2nd one was even worse, me and Maggie at this point were miles behind and although I am quite competitive, I couldn't have cared less, all I wanted to do was finish. At this point I was really starting to doubt myself.
As I was approaching the 1.5 mile stage I really was struggling and I had to dig deep for the strength to carry on. The one thing I did, was think about Rebecca and all that she had to overcome and the strength she showed over her life, it was that, that spurred me on and got me to the end: the memory of her grit and determination. Maggie told me afterwards she did exactly the same, so Rebecca Marley you helped two middle aged women through a big crisis and got us through. The last half mile was easier than I expected and me and Maggie finished together 2hrs 7 minutes after we set off. We were last but got an enormous cheer as we got out of the water at which point my legs decided to wobble and I had to be helped by a young man. Some may say I did that on purpose but I can assure you I didn't I was absolutely knackered.

If anyone from Sunday has an after picture of any of us, please let me have a copy so I can put it on here.

On the plus side, so far on our just giving site we have raised £872 and we've got more to collect in on sponsor forms. But if anyone still wants to sponsor us, feel free by visiting http://www.justgiving.com/Sue-Marley-MBE1

So there it is, this years challenge done and dusted and I'm now looking round for next year, possibilities so far could be:-
Zip slide in Wales longest in Europe travelling at up to 100 mile per hour face down, or,
Great north trail, 11k or 22k running up and down hills or, if you have any ideas let me know.

If your still with me, don't forget the cricket match at Ackworth Cricket club on Sunday 29th June where Becci's CF X1 are taking on Educating Yorkshire. Family fun day in Becci's memory to raise awareness and much needed dosh to fund research into a cure for the dreaded Cystic Fibrosis.

Again, thanks for reading.
Tatty bye for now

To my lovely Rebecca on the 5th anniversary without you.

Today is the 5th anniversary without you Rebecca, in fact it's the time you passed away five years ago as I'm writing this.

We spent a week hoping for a miracle that really was never going to happen, but living with Cystic Fibrosis for 27.5 years makes you always live in hope. You always got over the worst infections and bounced back and we still had a 2nd opinion from Papworth hospital about transplant to cling on to. But this time it wasn't to be, you'd had enough, your body had, had enough and we had to face the fact it was time for you to gain your Angel wings. Watching and waiting for you to slip away is the hardest thing I've ever had to face but even though I wanted you to stay, it would have been horrible for you, struggling to breathe not being able to do even the smallest thing. I know you liked people to run around after you, but you hated being this way. So we brought you home as you wanted and you went to sleep forever surrounded by the people who absolutely idolised and loved you.

It doesn't get easier as people have you believe, for me it's getting harder because I miss you so much.

I know you had your own life, something we always wanted you to have, but we were still a big part of your life because of Cystic fibrosis, so very close. In a very strange way, Cystic Fibrosis probably made us so much closer than maybe we would have been and for that I am grateful.

I'm trying to be strong but I'm afraid I don't have the strength you had and I'm sure you're getting a bit miffed at me when I wallow, but I'm filling my days doing something useful hopefully raising awareness about Cystic Fibrosis and raising money to try and find a cure. I know you won't benefit form this but I can't sit on my backside doing nothing when other parents still face what me and Dad are going through. Losing a child is the absolute worst thing in life that can happen to parents and it's the hope of a cure being found that keeps me going.

I want to tell you that I love you, I miss you and I was and still am so proud of the way you lived your life even though Cystic Fibrosis did everything it could to stop you. You were a star on earth and now your a star in heaven and I hope you and your granddads are having a whale of a time where you're all fit and healthy. Until we meet again my lovely girl.xxxxxxxxxxxxxxx

                                  You made sure you enjoyed your life my lovely

I can't leave this blog without reminding people that it's my swim this weekend and if you would like to sponsor me, here is my just giving website http://www.justgiving.com/Sue-Marley-MBE1



Thank you as always for taking the time to read.

Sue xx

11th May
 
Quite a long post, some bad and some good.

Well it's been a while since I posted probably because the last few months haven't been good in terms of how I've been. It seems that as time goes on, it gets worse living without Rebecca, I don't know why, I think I'll have to stop questioning it and just accept that's how it's going to be. Whoever said "times a great healer" must never have lost a child because they really didn't know what they were talking about. I get up most days hoping it's going to be better but it never is, the only thing that's better is if I can get through the day without shedding some tears. Rebecca hated to see me upset and she would be horrified to see me how I am now and I'm sorry for that, but I think it's testament to how much I love and miss her. (think she'd be a tad annoyed at me though - kick up the arse comes to mind)
There's so much I could write about cystic fibrosis and how it robbed Rebecca of her life but I won't because it hurts too much, suffice it to say no one knows how hard it is unless you have to live with it.
 
It's CF awareness month in the USA so I thought I'd do my bit and this is something feel very passionate about
For anyone reading this that has CF in it's family, make sure you get tested for being a carrier because this gene will be passed on. You only need to have a child with another carrier and there's a 1:25 chance the child will have CF, that is not something to be blasé about I can assure you. If you know you are a carrier you're partner can be checked and then you can make informed decisions if you're both carriers. I'm a carrier, so is my husband which means our brothers and sisters can be carriers., they in turn can pass on the gene to their children and so it goes on. As far as I know, it's a simple blood test possibly a mouth swab now, but checking can save a lot of heartache in the future.  

On a more positive note,
My swim in Lake Windermere is approaching about as fast as I plummeted to earth in my skydive. It's 5 weeks today and although I've swum 2 miles in the pool twice I've still to get a wet suit and plunge myself into a cold water lake. Hopefully I'll have done this by the end of May. I'm more worried about doing this than the skydive because even though I've done the distance and I'm confident, there's no bottom in the lake as there is in the pool and I seem to have a habit of swallowing a lot of water and nearly choking. Also I don't think I'll look pretty in a wetsuit, goggles and a nose clip, maybe people could pay to see the pictures as an extra way of raising money!!
On that note, please visit my web site below and sponsor me, I take any amounts big or small, all is appreciated.
http://www.justgiving.com/Sue-Marley-MBE1

If you can't donate, I would appreciate you sharing the web site with your friends for awareness as well as raising money -thanks :)
 
My media volunteer work is coming along, I've done a few stories now and had one published in a couple of papers, this story generated someone making a donation of £25 after seeing it in the Yorkshire Evening post. :)
 
Educating Yorkshire are playing in our cricket match on Sunday 29th June at Ackworth cricket club Wakefield Road Ackworth. Becci's CF X1 versus Jonny Mitchell and his team all to raise money in memory of Rebecca and cystic fibrosis. Please share with your friends, starts at 12 noon it's a fantastic day includes food, bar, bouncy castle, free entry raffle auction and more. I'll mention this in my next post.
 
If you've got this far, thank you for reading, sponsoring and sharing.
Toodle pip for now.
 
Sue X

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

23/2/14  Perdido Sin Ti

That means "lost without you" it's something Paul put on my face book page last week whilst I was out.
It is so true for both of us, we are both lost without her. I hope it doesn't sound self pitying, I'm just saying it as it is,but life is empty and lonely now. As much as we try to get on with our existence, everyday has the same never ending quietness. There's no "Mum can you just" or "Dad will you bring", no belly laughs, no chatting, debating or arguing. There's no coughing, medication, Physio or visits to the hospital. (never thought I'd miss hospital appointments). No friends visiting or us going out together for a meal or to see a film. There's just an emptiness that takes some filling and some days are so hard to get through it's a pleasure to go to bed and rid yourself of the day.
I cope most days by filling the hours with whatever I can find but there are some where I just  want to curl up and die to get rid of the pain of losing Rebecca because it hurts so much. I feel like that at the minute, tears are never far away but I've been here before and I'll get through it soon but It's not a nice place to be in.
We've lived and dealt with CF which was an enormous strain and we've watched our daughter suffer and be taken by it. But CF hasn't done with us yet, we've now got to try and live the rest of our lives without the most important person in our world and that doesn't get any easier and I don't think it ever will. We are scarred by CF and that's my reason for raising money to help find a cure, no child should have to suffer this horrible incapacitating life shortening illness and no parent should lose a child.

With this in mind please visit the two following links to websites 1) CF Trust to blow up a balloon and show support and 2) my just giving site to donate.

https://www.cysticfibrosis.org.uk/no-party

http://www.justgiving.com/Sue-Marley-MBE1

Fundraising
We are doing a Tombola in Carlton Lanes shopping centre Castleford on Saturday 8th March courtesy of my sister in law Pamela who has organised it all. So if you've got a few minutes and a couple of quid spare, call in and see us.

No date as yet for the cricket match but hopefully this will change soon.

My swimming training is coming along brilliantly. I've been swimming twice a week with my niece Brogan and friend Maggie. Me and Brogan did 2 miles last Thursday and I would imagine I'll be doing the 2 miles with Maggie shortly. I'm sure I'm getting webbing between my toes and my skin is becoming scaly, as long as I don't get bulging eyes I'm sure I'll be fine.:) 

I've had my first assignment as a media volunteer which I'll be working on over the next few weeks so something else to keep me occupied. I'll let you know how I go on with this and will update as soon as we get a date for the cricket match.

Cheery bye for now and thank you for taking the time to read.
Sue xx

9/2/14
Little steps, raising awareness and a bit of begging.
This may be a longish post but I hope you read it

The last couple of weeks have been good but I've kept very busy with trying to get donations for the cricket match and training for my swim. I've had quite a few things donated and I'm now up to 80 lengths of the pool, so mucho progress being made. We're still waiting for a date and then we can confirm our celebrities but more about that later.

We went to an evening wedding reception last night and though we were both a bit apprehensive about going, we did and we both enjoyed ourselves. I did feel a bit tearful when I saw my friend Ann (groom's Mum) getting into the car dressed for the wedding, she looked lovely but it hits home what I'll never experience. I know Rebecca did get married and it made her happy in her last days but it wasn't the joyous occasion you normally have for a wedding. At that point we were still hoping for a miracle and that she might get better and be well enough to have the one she lovingly planned. But, that didn't happen and it's something I'm learning to live with and in time hope I can go to one without too much sadness.

Now for trying to raise awareness about Cystic Fibrosis
CF is a horrible illness that can pop up anywhere. In our family we know some are carriers of the gene and CF can still be passed on to next generations. Only Rebecca was plagued or unlucky enough to suffer from it and that makes the rest of my family bloody lucky because it could quite easily have been one of my nieces, nephews or great niece if their fathers/mothers had also carried the defective gene.

Below is a little extract from a blog I read, the girl is in her twenties and it's a little insight into living with CF
 This is probably going to be a negative post, but I don't even care, I need to vent! It's been 2 and half weeks and I have already plummeted back down to how I was pre-admission. I know I will try to go for a few more weeks without IVs, but it's going to be torturous weeks of pain, exhaustion and frustration. Then 2-4 weeks of IVs to get myself back up to the 50's percentage of lung function. So that's basically around 6 weeks of the pain etc for just 2 weeks of "healthy" living. It's just not fair! And during those 2 weeks, it's not as if it's like a holiday from CF, you still have to do the endless routines of physio, nebs, force-feeding, exercise, tablets etc. I just want a break.
When you're feeling this low, looking to the future seems gloomy too. Unless a cure, or miracle medicine is found, what does the future hold? Most likely, more frequent admissions, decline of lung function, less independence, transplant list, early death. As negative as it sounds, that's the realistic conclusion.

I'd like to ask all my family and friends to visit the link below and blow up a balloon to show your support of CF. It's the 50th anniversary this year of the CF Trust being founded but there's no celebration because although life expectancy is 40ish only 50% of people with CF will live to that age, the other 50% probably won't even reach there 30's like Rebecca.
 
Please take two minutes out of your life to click on the link and also share it with your friends. The only way to beat CF is by finding a cure and to find a cure we need support.

 https://www.cysticfibrosis.org.uk/no-party

Now to the begging:)
I'm training hard and going to the swimming baths twice a week. I'm now up to 80 lengths and hopefully will have managed two miles (128 lengths) before the end of February.
When I'm swimming my chest is tight until I get used to the exercise, people with CF feel like this all the time and they have to learn to live with it, their chest never gets better
 
Please visit my website and donate a bit of cash, It doesn't have to be much even a £1, it all counts.
I'll be putting the link on facebook regularly so if you see it, even if you don't sponsor me, please share it with your friends. That way it'll raise awareness and hopefully attract some donations.

http://www.justgiving.com/Sue-Marley-MBE1

Please look out for my just giving link and share it pleasssssssssssssssssssseeeeeeeeeeeeee.
 
Tatiby for now
Sue x

26/1/14

Ups and downs and new focus's
My new focus is communications volunteer with the CF trust.
I went on a training course to Manchester yesterday and really enjoyed it. I met 6 other people who have volunteered all with connections to CF. A parent, uncle and cousin to a person with CF, someone who had lost a friend to CF and lady who has CF. All have the same thing in mind - wanting to help find a cure for this horrible illness. The job will entail helping the Regional Fundraising managers get information into the media about events or cases of interest. I'm looking forward to seeing how it evolves and I think it will be up to me how much I push my involvement, hopefully it will come in handy for advertising our events.
Can't wait to get started.

Great North swim training
I've been to the baths 4 times now and so far have managed to swim 64 lengths with Brogan and 32 with Maggie. Stamina wise I didn't find the distance difficult but my shoulders and neck really ached so I hope this gets better with time. If it doesn't I'm sure I'll  put up with it like I did with running, It can't feel worse than how I felt after the Great North Run.
For me it's all about the challenge of pushing myself to my limits as most CF sufferers have to do every day of their lives just to live relatively normal life. I also like to give people value for money when I'm asking for sponsorship. This leads me nicely on to telling you I've set up a just giving website and is open for donations:) Please free to visit anytime and give me your money.
http://www.justgiving.com/Sue-Marley-MBE1

Ups and downs - just getting it off my chest
I'm really struggling at the moment, feeling down and unable to pick myself up. The weather doesn't help being so dismal all the time but I just can't shake off the depth of despair I feel at losing Rebecca. Some days are much worse than others but the loneliness and emptiness I feel never seems to get any easier, maybe it never will, I suppose I'll eventually just learn to live with it. I get on with my life the best I can filling my time with work and charity stuff and that helps because at least I'm being useful especially where CF is concerned, having said that, I hate the bloody illness with a vengeance, I just don't want it to carry on taking young lives. I try to be as up as I can when I'm with other people because It must get on their nerves being in my company if I'm down in the dumps all the time. Poor Paul, he has to put up with me being a morngy bugger but I know he understands because he feels much the same, he just deals with it better than me and thank goodness he does or we'd both be in trouble.
But, I like to be optimistic and tomorrow is another day and you never know we might get a bit of sun to cheer me up.

Toodlepip for now and thank you for reading.
Sue X

Oh before I forget ,if you want to write a little memory about Rebecca FB me and I'll include it on page 2 of the blog

12/1/14

Christmas - New Year - More Goals

Here we are and the 5th Christmas without Rebecca has come and gone.
I think I now have the build up sorted, I just try to ignore it. Don't get me wrong I put some decorations up and went to a works party and enjoyed it, I just don't think too deeply about it. I ignore the Christmas songs in the shops and don't let my eyes stray to cards for daughter and try not to think what I would be buying had things been different.

Christmas day I now get through OK by doing things slightly differently, it's still painful but bearable.Boxing day was enjoyable, we did things a little bit different which made a slight difference and I consumed several pints of lager which helped. The only trouble is that as much as I change things it's still the same, I can be in a room full of people surrounded by family and friends but still lonely because the person I want to be there isn't. New year neither me or Paul could face, we were invited out and at first were going to go, but then couldn't. We decided to just let it pass quietly by without any fuss. Without Rebecca it's not easy for either of us to look forward to the future. That sounds self pitying I know and we do have a wedding and a new baby to look forward to which we are very much looking forward to, but it's not the same. Until you have walked in these shoes, you can't understand the hollow feeling you live with every day.

Having said all that, we both got through the Christmas period without too much crying and are OK, no lingering feelings of grief.

So on to the new year.

This year is the 50th anniversary of the CF trust being formed. In those 50 years even though there is still no cure, there are now more adults living with CF. The life expectancy has risen from teenage to late 30's early 40's. Having said that, there is much more work to be done because only half of the people with CF will reach the new life expectancy and young lives will continue to be lost. I have heard this weekend of a 24 year old girl who lost her battle on Friday, she suffered with the same bug in her lungs as Rebecca and was also turned down for a lung transplant. More work needs to be done on finding treatment for this bug Cepacia, because at the moment there aren't any really effective antibiotics to eradicate the damned thing.

I said a few weeks ago I wanted to do more about raising awareness so I've applied for a job as a communications volunteer. I'll be working for the CF trust as a volunteer for several hours per week dealing with writing press releases, case studies and other communications. I'm going on a training course in Manchester on 25th January to find out more about the job and I'm really looking forward to it, so I'll update when I know more.

On the fund raising, I've entered the Great North Swim with my niece Brogan, my friend Maggie and her friend Emma. My other niece Kayleigh and Dean her husband to be, are also hoping to join us. Swimming 2 miles doesn't faze me, swimming in Lake Windermere does a little bit, but if Rebecca could face and live her life the way she did without much fuss, I'm sure I can rise to this challenge. I shall of course want paying for doing it, so get saving up. Remember this date SUNDAY 15th JUNE:)  I've chosen this date as It's near Rebecca's anniversary and I've decided I want to mark her passing with a positive outcome, something she would be proud of.

Come March, my brother Rob is hoping to start organising a walk from Scarborough to Whitby. On completion of this we hope to join Whitby regatta where we hope to have a tombola stall. More about this as it evolves.

The cricket match is still on the cards but we're not sure at this stage when it will be. It won't be early September though as I have a wedding to go to on the 7th. I have started writing letters requesting donations but not much response as yet, it is early days though.

Probably next up will be a tombola stall in Castleford in March, so if you have any unwanted gifts, I can put them to good use.

Hopefully we will try and do as much as possible to help celebrate the 50th anniversary and raise loads of dosh for CF as well.

Sorry for the long post but just wanted to update as much as I could.

Tattybye for now. x