CLL Support Association
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London to Paris

Last year I cycled from London to Paris, I raised almost £6000 for Leukaemia Care. How much has changed in a year.

I care for my husband who has multiple illness's and now takes up most of my time taking him to and from the hospital. Now seeing 4 different specialist as well and going to Manchester Royal to see them.

He has recently been on Tacrilimus, the most awful drug out imaginable. The side effects were horrible and I almost lost him to illness as his immune system had no effect when he was taken ill before xmas. Thankfully he is fully recovered, tho he still receives 2 units of blood every two week.

His Dementia is rearing its ugly head but now we have come off the drug for Leukaemia we can now start treatment for this, plus stabilise his Blood sugars and Angina.

Hope to talk and make friends on the site tho I am a carer not a sufferer.

Look forward to hearing from you all


6 Replies

Hi Lynda,

Carers get it tough too!

So you've gone from one marathon effort to another, though I'm not sure whether the cycling training helped other than proving you are fit and have the endurance. Looking after your husband at home, juggling specialist appointments and getting everything prepared for each appointment can be very wearing, even without the extra stress associated with managing someone developing dementia.

Good to hear your husband has recovered enough from his recent serious health challenges so that other health problems can be tackled. I've not heard of Tacrilimus before, but a quick on line check shows that it is an immunosuppressive drug. Many of us here have experience with compromised immune systems - from chemotherapy treatment if not from the CLL itself, so you'll find some knowledgeable and sympathetic people here that know what's involved in trying to prevent infections.

And if you feel the need to vent - again you won't be alone.

Welcome to our community,



Hi Lynda,

Welcome to this site. I'm sure you'll find it very helpful and supportive, as I certainly have, (even though of course we all wish we weren't in the position that has led us here). So sorry to hear about your husband's complicated health problems. It must be incredibly stressful, for both of you.

I've not heard of Tacrillimus either, but I'll now be very wary if anyone suggests I go on it.

Well done, in cycling from London to Paris! What an achievement!

Blessings on you both,

Paula (in Sheffield)


Hi Lynda,

Good to see you here, you'll find lots of your old friends from Macs on here and lots of helpful new people too. Lovely words from Neil and Paula and I echo their sentiments that it's so vital to have the carer's perspective to appreciate the immense strain involved in the role.

The pressures you face are magnified many times by your husband's dementia and complex health problems. It must be like a military operation keeping the appointment schedule, supporting him and offering the reassurance when he needs treatment. And battling to get the best for him. How I understand that one!

You've done brilliantly with the fundraising and I know you're a bit of an ongoing dynamo anyway with your cooking and handiwork activities.

I hope you can find some time and respite for yourself Lynda because you need and deserve it. I have caring responsibilities too with my son and my very elderly mother (who is also experiencing increasing memory problems). My ongoing responsibility towards them and having the strength to continue with it is my greatest concern. Nobody expects us to be heroes (except ourselves maybe). Carers are often unwilling conscripts fuelled by love and concern. But I try to find time for myself and I hope you can too.

Wishing you well and hope your husband's condition stabilises and you continue to enjoy some good times together (and I know you've had some absolutely terrific ones in the past).

Here's to sharing and caring!

Newdawn x


Hi Lynda....welcome again and as I said in response to your post, on my recent blog (which has now disappeared into the archives) it's good to see you here. Hopefully, you will be able to stay logged in ..... This site runs well and glitches are rare.

I am sure Julian will find you soon - I've given him the head's up.

You will meet some great people here and a few you know already......

Big hugs

sparkler x


Hi when I had chemo I could not have got through it without the love and support of my husband. Carers often get forgotten by systems but not by the person they are careing for. Best wishes


Thanks for all your support and I am sure you all know how hard it is for the other person in the wings......:) I am lucky in many ways, a chance conversation led me to Adult Carers in Kendal and I now receive complementary massage once a month. Tho the 1st time I felt awful afterwards and very strange, when relaying the facts to the doctor he just laughed. You know what Lynda he said its the first time in months you have actually relaxed and let go and your body didn't know how to respond...2nd time much better but took the advice of the lady who did it, had it late afternoon, went home, plenty of water and chilled for the rest of the day. Not the manic situation of the other time.

Preparations for my next "Event" are well under way. The butlers almost lined up with the Full Monty Gang. Couple of fab presents on hand for the raffle and hoping that a few more will come along with a little bit of my 'gift of the gab'

Sorting out things like table settings for the event, theme is red, so we thought about putting red serviettes in the middle of the table with red sweets and love hearts in it. Then a shot glass with red sand or crystals or just a red flower. Brighten it all up. Red gift bags for everyone like last time, with little treats, one lady making me 220 red velvet cup cakes and another lady putting luscious lips in them, (sweets)

The chairs are covered so we might get some red ribbon to make a bow round the back section all to source.. The impact when you walk into a big room is amazing to see 22 tables set up, in fact a bit like when you go into a wedding room.

The DJ sorted and a comedienne coming to help out again. He will play a few games with the butlers and the girls to get them going.

Asked the hotel to set up a cocktail menu up for the night , maybe 4 red ones at a slightly cheaper rate and then you spin a wheel and that's the one for the next hour..The butlers just go to the bar and get the drink for the lady's ..

I think you get the drift, set them off with a fashion show by Fat Face, that gives them chance to eat the canapé's and have their first and only free drink.

Little saving tins on the table for them to put money into when they want the butler to take an item of clothes off..... last time one lad had got to his undies where we asked the lads to stop at and she said if I put £50 into this how about them which he duly excepted for us. In fact he was the best butler of the night, raising alone £105 in his tin.

Well better go, been to the hospital 3 times this week, lots of knitting to sort for a stall i'm having in the next couple of months. Have neighbours working away at egg cup covers and hug mugs. We buy from charity shops, cover and then re-sell so what goes around come around. Win win situation.

Next venture is the Zumbathon being held at the hotel, 100 mins of pain for £10 we give them a choccy bar and a drink.

Then its the afternoon tea with a difference. We source the cup saucer and plate again from charity. You buy them and can then sit down to afternoon tea. If we don't get enough we will have to beg, steal and buy from carboots..

So having ranted on far too long as im a little over excited today at how things are going with my charity raising. Just hope this time the 4 charities will get a fair amount for what they need.

So best wishes all



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