How can we give ourselves a joyful Christmas....

[PaulaS]

I’m sure we’re all caught up with preparations for Christmas, but I wonder how different it is, now we have CLL?

So much to do – but have I got the energy for it? Cards keep dropping through our letterbox, and I see colourful trees going up in people’s houses, but I haven’t yet sent a single card myself, or put up any decorations. It all seems too much effort.

Christmas shopping used to be fun, wandering round the shops, seeing what caught my eye, but now I do most via the internet, to keep away from crowded buses and shops.

And socially – how about the family gatherings, the excited children, the carol singing, work parties, all things that used to make up the fun of Christmas, but now seem full of risk of infections? (OK, so those things weren’t always such fun, but they did have their lovely moments).

For those of us who are trying to keep their diagnosis confidential, what extra challenges might they face?

Anyway, it would be interesting to hear how others are coping with the demands of Christmas. What are we looking forward to? Are there things we are dreading? What adaptations can we make?

Or, to end on a positive note, how can we give ourselves a joyful Christmas in spite of everything?

P.S. The photo was taken in our garden in Sheffield a couple of years ago, when we had some early snow in November, and hadn't yet picked all the apples.

[jangreen]

I'm buggered if I'm going to let CLL ruin my Christmas. I have to pace myself or things get too much. When I do the Christmas cards now I have to budget for stamps ( they now cost too much) so its a good excuse to cut down. Also when I do them I put on some Christmas music and have a coffee and mince pie to help. I can't do everything I would like to do but try to do some things. I have tried to cut out those things I never really enjoyed and focus on those things about Christmas that still bring joy to my heart. I hope that you DO have a Merry Christmas. Best wishes

[Jinjo in reply to jangreen]

Paula I understand and identify with a lot of what you say but Jan I love and agree with your opening sentence. Yes it is much harder with CLL to cope with the preparations for Christmas and Maybe some compromises need to be made. I tend to plan to do all the things I want to be involved in but if on the day I am too tired I just accept that I can't and rest and hope to do the next thing planned. I have always been open aboutmy CLL and therefore, people around me are aware and understanding Iif my involvement in activities has to be curtailed. For three years I have been unable to get my beautiful large artificial Christmas tree up and decorated but this year a lovely friend has arranged to come and help me do it. I am grateful and delighted. I love Christmas and all the decorations. I hope you both enjoy a lovely Christmas too.

[PaulaS Volunteer in reply to Jinjo]

Thanks Jinjo. You're right - some compromises need to be made, but there is still so much we can enjoy. How lovely that a friend is coming to help you put your tree up, this year.

May you too enjoy a lovely Christmas,

Best wishes, Paula

[PaulaS Volunteer in reply to jangreen]

Thanks Jangreen - I like your attitude. Sorry if I sounded a bit negative, above. I too need to cut out the things I never really enjoyed, and focus on things that bring joy to my heart. Simple things like listening to Christmas music and eating mince pies while writing cards, is a good start. May you too have a Merry Christmas. Best wishes, Paula

[Oleboyredw-uk]

Life is a series of compromises, CLL or not, we have to make a few more than most. That is how I am trying to live, I'm determined to continue on as close to normal as possible. This summer I did not wear shorts in the garden, stuck to trousers and always wore a hat, that was a compromise but guess what, no compromise during the winter months trousers and hat as always!

I do consider my risks a lot more now, so going out for a meal with about 20 friends on Saturday where I will manoeuvre an end seat shielded by my wife and a couple who are close and know my real situation (the rest don't).

For a number of years I've been the family Christmas card writer and I find it a drag, however next year, I'm going to try the music, mince pie approach suggested by PaulaS (would have done that this year only wrote all the cards yesterday!)

If I forget later, everyone have a great Christmas, be happy and stay safe.

Rob

[PaulaS Volunteer in reply to Oleboyredw-uk]

I hope you have a good time on Saturday with your friends, Rob, and manage to avoid any bugs. Good idea to have wife and two understanding friends as "human shields" at the dinner table

It was jangreen, not me, who first suggested the music, mince pies and coffee. And actually that's what I did, this morning (but without the coffee). I have actually now started on my cards - ones for abroad, first. UK ones will have to wait.

Happy Christmas to you too,

Paula

[Kwenda]

NO SURRENDER…

CLL is a beast, but I am NOT going to let it control my life without a big struggle…

I am more than just ‘ an OAP with cancer ‘…

A few compromises, but as few as possible..

Dick

[PaulaS Volunteer in reply to Kwenda]

Well said, Dick.

[Myrddin]

I get around the christmas card issue by send ecards using the same provider I use to manage my address book online.

I make a few flavours, my photos and text, for family, friends and distant relatives and send them at the press of a button. Not the same but does the job and helps keep intouch.

Having told the family has made the pacing much easier. If I need to retire for a break/rest it does not need to be explained.

Because the family know they avoid visiting if the anyone isdown with something - very commom at this time of the year and as was mentioned at Southampton along the lines 'granchildren are reservoirs of bugs and to be avoided' a bit harsh but true.

Skpe works quite well when you can't get together for what ever reason whether they are around the corner or the other side of the world. Just can't exchange hugs!!.

Stay safe and enjoy the Christmas season as best you can despite the challenges of cll. CLL does not define use - just challenges us. May we all manage to see family and friends over the holiday in the true spirit of Christmas.

[PaulaS Volunteer in reply to Myrddin]

Thanks for sharing these things, Myrddin. As you say, CLL does not define us - just challenges us. And let's hope we will indeed find the true spirit of Christmas, with loved ones over this holiday.

Paula

[Hidden]

Christmas spirit seems to be alive and well in our community. Love the fact that mince pies seem to be for some of us an essential. Note to self, next year need to have mince pies, carols playing, a wee tot at my side to write the cards. Thanks PaulaS. Note to partner, we don’t need to start eating mince pies in mid-November, Christmas is in December.

To make life a little easier I have given up on stringing lights around the Christmas tree, it’s a task that has become much harder and not having any children visiting I can settle for a pre-lit artificial tree. Popping a few Christmas snowmen and bits of Christmas bric-a-brac around is quite easy.

I’ll be eating out as much as possible with visiting family to save all the energy used to cook, better to enjoy time with those we love, remembering to sit as much as possible on the outside of any gathering like oleboyredw.

Kwenda’s comment ‘I am more than just’ an OAP with Cancer’ really resonates for me, we are all so much more than just people with cancer. Thanks Dick, we are. My difficult part is what shall we get for Christmas day lunch?

While reading how everyone is coping. I was just thinking how lucky we are to be computer literate, and able to share our thoughts and plans with people who are in the same situation. How sad for those who are more isolated, some of us will be alone at Christmas, or too ill to enjoy it. Especially for you, best wishes for a Christmas better than you hope to have.

Bub

[PaulaS Volunteer in reply to Hidden]

Thanks Bub, for all your positive words.

But you are right that we are the lucky ones - we have computers and can use them, not everyone in the world has that privilege. And some people will feel very isolated at Christmas, or just too ill to bother to do anything special (whether they have computers or not).

Best wishes for your Christmas too,

Paula

[djgolding]

loving the "kick-ass" attitudes. As a CLL newbie, yet to be assessed, I've set myself the goal of not letting it get to me but trying to be sensible about life. I've always had a life that has been immuno-challenging now farming after a life working in medical laboratories, travelling the world with the navy then radiation and industrial environments; no wonder I thought I was impervious to whatever the world could throw at me. Now I'm looking to wear facemasks and gloves when I clean out the chickens, stables, goat stalls and when working the earth but otherwise its early days and I intend enjoying life. You guys make me smile, have a merry Christmas and thank you.

[PaulaS Volunteer in reply to djgolding]

I'm glad you like the "kick-ass" attitudes, DJ. And it's great that we folk have made you smile.

Keep smiling... even if it is under a mask and gloves, as you clean your animals and work the earth

Merry Christmas,

Paula

[djgolding in reply to PaulaS]

Cheers Paula - seeing haematologist today so should have some more information on my state!

[PaulaS Volunteer in reply to djgolding]

Let us know how you get on, DJ. By co-incidence, I'm also seeing haematologist today.

[Hidden in reply to PaulaS]

Hi all

I rarely make any contribution to this site but always read others posts everyday.

The factual information is brilliant and saves me many hours of searching the internet, it is always grounded and sensible from those of this community who are further along this journey.

So just to thank all the members for all the effort you put into this and wish you a Christmas that brings you joy and peace whatever form that takes. Thank you all

[Hidden in reply to Hidden]

Hi Fileybay,

lovely to hear from you, I think we all benefit from this site. May your Christmas be bright too.

Bub

[Hidden in reply to djgolding]

Hi djgolding and Paula

Hope all goes well for you today, be thinking of you.

Bub

[djgolding in reply to Hidden]

Thanks Bub and Paula (hope your consultation went well Paula).

Today was the start of proper assessment and the Haematologist has stated that, because of the splenic and lymph node enlargement that he wishes to set me on a 6 x FCR in the new year after they do the baselining (CT scan and bone marrow). He's taken bloods for IgV etc., for pronostics plus grouping and a whole pile more including a viral scan to eliminate Hep as a complexing condition for the chemo. All in all a useful consultation and I expect appointments for the scan and bone marrow in the next few weeks. Mind you they took so much blood, I feel I have an empty arm. He reckons that I'm an ideal candidate for chemo as I have good marrow function, according to my blood results and am in good physical condition - phew! And there's me thinking I'm a wreck!!

[AussieNeil Partner Administrator in reply to djgolding]

Looks to me that you are in very good hands with your consultant doing a thorough preparatory investigation so that potential problem areas are identified for mitigation. Hope it won't be long before you are busy developing your trees, fruit and wild meadow as planned; but meantime, I'm pleased to read you are all prepared to minimise your risk of infection.

Being in good physical condition does seem to help you get through the chemo easier. Some of us needing treatment are holding out for the new non-chemo treatments and by doing that, are at risk of having our marrow function drop to very dangerous levels when the chemo takes its hopefully temporary toll on the marrow.

Enjoy your Christmas and all the best for your treatment next year.

Neil

[djgolding in reply to AussieNeil]

Many thanks Neil and all the best for the festive season

[Newdawn Administrator in reply to djgolding]

I read this little greeting a while ago and have changed it to suit the message I want to send everyone for Christmas & the New Year...

with special thoughts to members who will be needing or recovering from treatment.

'May the pockets of your clothes become a magnet for high value notes.

May love stick to your face like Vaseline and much laughter assault your lips!

May strength replace your fears and your tears be that of joy.

May problems and strife forget your home address!

May you be blessed with love, healing and friendship.

And quite simply...may 2014 bring us all the reality of beating CLL into total and complete submission!'

Newdawn x

[Hidden in reply to Newdawn]

How lovely Newdawn

Quite the most uplifting Christmas message.

Thank you

Bub

[Hidden in reply to djgolding]

I can't think of anything that has not been elequently said by Aussieneil and Newdawn. Always wishing you well and that 2014 will be the year you get your own back on the pesky CLL.

Have a special Christmas.

Bub

[PaulaS Volunteer in reply to djgolding]

Thanks for the update, DJ. It's good to know the haematologist considers you to be in good condition for chemo, even if you'd much rather not need it of course (the chemo).

I hope your "empty arm" soon filled up again

Wishing you a Very Happy Christmas, and all the best for the New Year.

Paula

[djgolding in reply to PaulaS]

Thank you Paula - have a nice one