Mrs Jools - Update
 

Since I posted a couple of weeks ago about my wife suddenly losing all feeling and mobility in her right leg and arm, and being taken to hospital as a result, I have been overwhelmed by the number of emails and U2U's that I've had conveying best wishes, offers of help and people offering practical advice through personal experience of similar things happening to friends or family. There are far too many messages for me to respond to individually, but it shows once again (if proof were needed) that the DSC is far more than just a bike club. It is more like a vast, caring family and it is very humbling to know that so many people care.

The past two weeks have been terrifying, both for me and Sadie (because she's not really called Mrs Jools). For the first 10 days we have been awaiting the results of endless tests and confirmation of a diagnosis, but amongst the candidates were that she may have had a stroke at a premature age or may have had a tumour in her spine or brain that was affecting her ability to move her right leg and arm.

Finally, we have been told that it is definitely the onset of Multiple Sclerosis and in a funny way, given the horrendous alternatives, that's a huge relief. Finally we know what it is, Sadie can start treatment and we know what we're up against. MS is obviously something that you could do without, but now we know that she has it we can make life choices around that. It's obviously a progressive disease that has a lot of uncertainty about how often attacks might occur, when they might occur and to what extent you can expect any type of recovery. It could be that Sadie will go on for years without any significant deteriation, or it could be that she will become disabled relatively quickly - nobody knows.

Whatever happens, we have made our minds up that it will change our lives, but it WILL NOT rule our lives. We will adapt and deal with things as they arise. Sadie has just started a course of steroid treatment and has improved remarkably as a result in just three days.

Nobody knows what cause MS attacks but emotional and physical trauma are known to be one cause.

Since October, Sadie has suffered more than her fair share of both. Back in October, she was attacked and assaulted in the ladies toilet of a pub in Oxford - where we were celebrating our sons graduation. After this attack there was all the trauma of police investigations and medical examination for her to contend with. This is why she was tearful at the BHC christmas dinner when we went to the pub in Chelveston. It's not because she's a moody cow or that she was giving me a hard time, it was because it was the first time she'd been in a pub since the attack and found it overwhelming.

No sooner had Sadie started to rebuild herself after the attack than my dad was diagnosed with cancer in November. Although he had an operation to remove the tumour, he never found the strength to survive the operation and died a week before Christmas. He was a lovely man and Sadie was as devastated as I was by his death.

Three weeks after my dad's funeral, Sadie's own mum was taken ill with pneumonia and nearly died, although she made a recovery after two weeks in hospital.

Then a week or so after that, Sadie's best friend who has really been like a sister to her moved to Devon.

So why am I spilling my heart out like this on a bike forum?

Firstly, because I already have ample proof that I have many, many more friends on this site than people who are apathetic and this is one of the best ways to tell everybody the same thing at the same time.

Secondly, because I feel that the DSC has really shown itself to be like an extended family, not just another bike club.

Thirdly, because the burden of keeping things close to your chest in terms of Sadie's attack has been unbearable - knowing quite who you can tell and when. We made a decision this evening to 'go public' so that everybody knows.

Let me stress we are NOT looking for sympathy here, just looking to take the weight of keeping secrets off our shoulders.

I terms of sympathy, the old cliche about there always being somebody worse off than you certainly counts. I'm not religious, but today on the way back from shuffling back from the hospital cafeteria on her zimmer frame (in her 40's) Sadie wanted to look in the hospital chapel. In the chapel memorial book there was a message, in childs writing, that said.

Dear Lord Jesus, please look after my little brother. I still don't know why he had to die because I loved him. Love Jayne. 8 years old

And with that, I would just like to count my blessings, apologise for the sentimentality, draw a line under this whole thing and get on with the rest of our lives.

BTW: If anybody has got any carbon sides and Ducati Corse stickers that will fit an NHS wheelchair, I'll have them.

Jools + Mrs Jools (Sadie)

Can't imagine what the last few weeks must have been like. I know you're not looking for sympathy so I won't do that. But just wanted to jot you both a note wishing you the best for the future.

Whatever happens try and find that smile inside.

Laters

Jiminy

[Edited on 17-3-2006 by Jiminy]

Jools my thoughts are with you both.

Few words but huge feelings for you and your lady jools

It's hard to know what to say, but the one cool thing is that it's not one of 'the alternatives', it's almost a second chance to grab life by the testicles and make the most of it - like we all should, christ it can be short as we all know.

I hope you guys get to live to be very old grey and grumbly (DSC Stylie)

Take care :)

Ditto to above !

I have to agree with you jools as I feel the same about the DSC :cool: it is a big family and even tho I have not met many of you in person i like to think of you all as friends :cool:


Just make sure you both do everything you can whilst you can !

Nice sentiment in closing Jools.
Best wishes to you & yours.
Andy

All the best Jools and Sadie. My thoughts are with you both.

Jools you really are an exceptional person which will really provide a strength to Sadie in the times ahead.
Best wishes to both of you in these difficult times
Kevin

Jools,

If a problem shared is a problem halved then you may have reduced yours by many many times by posting it here. I too like you are not religious but when I lost my brother and mum I just needed to talk and especially to a friend who happens to be a vicar.

I wish you and Sadie all the best and hope you can get a carbon fibre chair with slicks sorted very soon.

Jools,

Reading your post brought back to me once more the irrationality and uncertainty of the world we live in. Huge life changes can be just around the corner and be upon us without warning.The spirit of you and Sadie which shines through your post is an example to us all.

I wish only the best for you both .

Phil

In all the pettiness surrounding the club over the last few months, all the struggling for power and influence, through all the cant you Jools have shone through as a beacon of common sense and decency. You stand in our opinion for all that is good and caring about this club. Sadie is as blessed with having you to look after her as we know you feel for her being in your life.

All our love and best wishes

Jacqui Henry and Anna

I don't post much here any more Jools, but I am sufficiently shocked and saddened by your post to come out of hiding!
I can all too well imagine the difficulties Sadie must have gone through of late, and it is testament to her, and to you, that she has coped at all.
Godspeed both of you, and good luck for the future.

Jen.

jools and sadie,

if you both keep your positive mental attitiude through all this you'll come out ok.

enjoy life and each other.

Can't even think of anything worthy of being in this thread mate...

if there is ANYTHING i can do... please shout. Nothing is too small.

S

thanks for taking the time to put us all in the picture. best of luck to Sadie and the family ......

Pietro

Jools - luv to you both, i hope things become a bit easier for you in the coming months mate.

C:)

hope folk don't mind but this is the first time that I have added anything to the site. That is Mrs Fordie (Trina). I have been touched by Jools and Sadies honesty and also shed a tear or two over the comments and support from club members.Its wonderful to know that people really care. Go for it Jools and Sadie! May God bless your future together Love Trina n Pete. (4D's)

Blimey Jools.

I'm not one for contributing to personal threads (for all sorts of reasons) but just to let you know that if i can help in any way then please don't hesitate to get in touch.

There certainly are a lot of people in the club including myself who think an awful lot of you so use us if you need to.

I know what your going through. :(

Regards

Bob.G

Stuck for words Jools, but you'll know what i'd try and say if I could :)

My thoughts are with you and Sadie. Chin up and stay positive.
You know where i am if you think I can help in any way.

Neil

My condolences to you both and my thoughts are with you two.

I think that sums up the way most of us feel. You have U2U Jools

I am now devastated - I thought she was called Mrs Jools?

Seriously all the best and healing thoughts for the future.

Jools,

I have never met you but you are right to say that you will not let it rule your lives. I have unfortunatly some idea of what you have been through and will continue to go through. Five years ago my wife aged 25 complained of pain in her knee. She out up with it for a couple of months before going to the doctor and being referred for scans of the right knee. Nothing showed on the knee, however the guy doing the scan saw some shading just on the edge of the scan in the themur. The leg was rescaned and it was bone cancer. We had only been married 3 years and all the things you take for granted about your futures go out the window. At first we were told the leg would have to come off, they could treat it but not always cure it. Anyway a consultant got involved and was pioneering a techinique where they would do a bone transplant from a bone bank (didnt know there were such things) They grafted the middle section of a themur bone after removing the cancered bone tissue from my wifes leg. After that she had 6 months of chemo, lost her hair, lost half her body wait etc. It was scary stuff and upsetting to see.
She recovered well until the following year when a routine chest scan showed that a couple of tumors in her right lung. However after an operation to remove the tumors she recovered and again we carried on with life.
The following year another scan and this time a couple of tumours in the left lung. The same process was repeated and again some normality returned.
Last year we had a new one to overcome. A scan showed the lungs were still clear however strangley we were told it had appeared in her heart. The tumor was not easy to remove and at first no one was prepared to operate and the outlook was bleak. But again a surgeon who was a bit of a maverick said he would like to try and it was a success.
Due to chemo we were told we told we wouldnt have children which was not the priority in the circumstances however still upsetting as I had said not yet when we first got married (If I only knew then what I know now).
Last December we had a supprise in that her periods suddenly started, she was checked out and it seemed there was a slight chance if the timing was spot on that it could be possible for us to have our own. However thats now not to be as.
Well this year guess what it has come back again. This time it is in both lungs. Over the last couple of weeks she has had scans on her liver and brain which I am pleased to say are clear at the moment. Next week she will start 3 months of chemo, follwed by another operation to remaove the hopefully dead cancer tumors. She is 30 this August and I will be honest to say that I have thought at times that she wouldnt make that.
You have to stay possitive and carry on as much as possible. We have carried on doing the house up as we would of before however if we want to go out we do and if we want something we get it and not because she might not be here tomorrow but because it makes you look at life in general. Anything could happen to me as I ride my bike, drive my car or just change a light bulb. So if its my time at least I can say I had a good one and did as much as possible.
My thoughts are with you. Drop me a u2u anytime for a chat, sometimes you think everything is good in life and then sometimes you have dark times and think its all ********.

One thing though, you wont get accused of injuring your wife like I do. When we are on holiday and relaxing around the pool I am usually reading a book on some Racer or another and reading bike mags. You know the sceene, Ducati hat on and all that. People look at my wifes leg which has a huge scar running down it with big staple marks. Look at the scars on her shoulder and chest, look at me me and then when I am having a swim say "were you on the bag of his bike, did he come off tut tut" Cheecky gits. We also get trouble having a disabled badge because she cant possibly be disabled because she is 29, I have had people stop, stare and say "your in a disabled space". "I know "she will say, "Whats wrong with you" they ask. "Well I have had bone cancer, Lung cancer 3 times know, and cancer of the heart and no I dont smoke and no I didnt before either, would you like to see my scars to put your mind at rest". They then scurry off.

Its a bit of a laugh when it happens sometimes. We make a lot of jokes about the cancer to keep us sane as well. Like the other day my wife wanted buy a top and I said "dont buy more clothes, if you die its more for me to get rid of" and stuff like "look on the bright side when you have chemo and loose lots of weight me and the cat will have more room in bed" It sounds rude and nasty and I am sure people would think oh my god but it keeps it all real and makes things become talkable.

Good Luck to you mate.::puzzled:

My very best wishes to you both.

Best wishes to you both.

Rob & Karen

Jools, Sadie,

A shame to hear it's MS, but as you say, there are many worse alternatives. Get something out of everyday, and revel in the love and care of your relationship.

All the very best,

Rob & Sue

Woohoo Joolz...it' only MS!!!!!!!!!!

Thank god...could have been much worse!;)

All soppy sentiments said in my U2U...Now get those stickers on the chair...Find a decent dealer...Get a disabled badge so Sadie can do the designer shopping and park on double yellows outside the shop AND dont forget to Join the Society so she can get her toilet queue jumping card!
Oh...and tell her to keep off the chocs whilst on the steroids...dont want that beautiful young ladee looking like ten ton tessy!

:lol::lol::lol:

Love to you Sadie...Make sure he doesn't bump you too much down those kerbs!

Lisa xxx

I think the above puts most peoples lives into context!

Do we know, or even appreciate, how lucky we are at times, my untmost respect goes out to those two brave women.

Kind regards

Bob.G

:D Bloody Hell,there seems to be alot of stuff going on at the moment.I feel incredibly lucky? to have survived my illness at christmas and despite the continuing problems,reading about other people's illnesses and how they are coping makes me feel rather humble.My heartfelt best wishes to anybody going through or helping someone through it all.:D

My best wishes go to you and Sadie, Jools.I can only praise the both of you on your outlook.Hopefully being upbeat will make things easier and keep the MS at bay!

Jools. I know how much you cherish Sadie. That's been obvious ever since I joined the club and I know you've got what it takes to deal with this, no question.

And Tortuga, bl00dy hell man, chilling but worth telling, for sure. As has been said, it puts things into perspective and I for one am proud to be associated with a club whose members and their families have such courage and determination.

Jools,

Firstly, I have never meet you but you were one of the first to welcome me to this board so like many others here I have genuine sympathy for your current situation.

Today I have just got home from a funeral of a close work collegue who has unfortunately lost his fight with cancer. If there is anything I have taken from his last 12 months it is that life is indeed far to short and cruel and every moment with those dear to you should be cherised.

Its heartening to hear of yours and Sadies attitude towards MS.

I wont go on but can only pass on my regards to you and yours,

Alan...

Jools & Sadie,

Thoughts are with you, both of you are showing tremendous courage.

I have a cousin that has had MS for many years and he still has a very active and rewarding life.

All the best, Roy & Sandra

Best wishes to you and Sadie
Tim

Hi Jools

Just want to echo all the above and know you and Sadie will both find a way to deal with whatever the future brings. My wife developed chronic fatigue syndrome after giving birth to our second child and nothing has been easy since but one thing is for sure, you just adapt to change and make it work for you. Bit like moving house I guess.

And I thought I had problems. all the very best for the future Mr & Mrs Jools. I wish you the very best in your fight Tortuga.

Jool's , Regrets, I've had a few! but then again, too few to mention;)
and so the song goe's ;)

You will win through mate!

Good luck to both of you!

I can identify with TORTUGA!


My own story,

I went to school with a beautifull girl, we sat next to each other all through school, we were soul mates!

years later, I married her sister ;) My best Friend from school married Her!

when she was 23, she came to work in my haulage business,
one day when she was 25, she came into work and after a while, she complained of a headache!
minutes later she hit the deck, I tried in vain to stop her swallowing her tongue as she was having a fit! I held her in my arms whilst I was waiting for the ambulance !
but it was not meant to be!!!!!!!!!!

For five years i visited the Grave and punnished my self as to the reasons why i could not save her!

at the time I was young, foot loose and Flying with my own business!

But it somehow changed my out look on life from there on in!

Since that day I have lost some real good mates, on bikes and I have had mates ask me why I am so "hard" at the funerals!!

I cant explain why!

Mrs mav recently went through Breast cancer and touch wood we are now over the worst!

I remember asking the surgon to fit a pair of 44DD's on Mrs mav

:lol:

The up shot of it all, is this jools ! as dickie said earlier PMA
Positive mental attitude!

dont ever give up you Two ! and never give in to it!!;)

keep the faith

We all have a story to tell. >>>>mav

To Sadie & Jools, wish you both the best for the future, live it to the full, wich I am sure you are both doing. Have lost my dad & a close friends to the big C over the past few years, it is a cruel yet beautifull world we live in, go & enjoy it.



Chris & Cathy :burn: