Wishing all a very happy Christmas and hopefully meet year will bring us better health.
Thanks for all your support and prayers when I was given a year to live in June 2020. I was diagnosed with CLL in November 19 and I have un-mutated 11q status. IGHV in tact but un-mutated. The CLL is in my central nervous system (CNS), hence the ‘year to live’ bit.
I was doing well in Ibrutinbi up to Mid-November 2020 but then began feeling sick again (no appetite and extremely tired) I had a bad day on 20th passing out and vomiting. I’m currently in the Cork University Hospital, where they are treating me for a very sever throat infection but also because my MRI wasn’t clear on Wednesday 23rd. It’s to do with brain biopsy wound rather than CLL.
The hospital is fantastic and my consultant very capable and hopefully I’ll get another few months to enjoy family life and the little darling grandchildren ( I have 6 of them from age 3 months to seven years)... adorable and so sweet they give me such a lift when I see them.
Wishing you all the best again for the holidays and hopefully we make the most of this time of life.
Take care
Written by
Caoimh37
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Good morning and Happy Christmas to you from a fellow unmutated 11q CLLer 😊We last chatted when you were diagnosed with CLL in your brain many months ago and we recommended you ask about Ibrutinib, I'm so happy that you have been well on it since. These latest challenges are hopefully just blips and you'll have not months but many years to enjoy your grandchildren.
I hope you have a good Christmas, with best wishes
JackieMany thanks.... I hope I’ll be able to go back on the Ibrutinbi now after last weeks challenge.... the MRI results are a bit concerning too as I’d not be able to go for another Brain operation!!
Keep me in your thoughts and prayers... all I want is a small bit more time with the grandchildren, where I can enjoy some aspects of life.... currently I just sit down all day as I have no physical energy and no appetite....
I’m happy to sign out if this life if that is what’s meant..., I’d hate the lingering part!!
Happy Christmas! Glad you're getting great hospital care. Have a smiling, happy day and I will keep you in my prayers. If it's safe, give the grandkids a hug from all your friends here. God Bless You!
Well, that’s good. Excuse my earlier reply. Of course I knew you were in the hospital, my brain wasn’t fully awake yet. Nice to hear that you and the grandkids were making the most of Christmas Day. 🙂
Sorry for the late response. I just now got a notification of your reply. So, I’m blaming technology. But it really sounded like you all had fun together and that’s what counts.
Merry Christmas. I pray things greatly improve for you from here on out and these current challenges will be just some unwelcome memories in a long life ahead.
Several years ago our son and his family were in Belgium with the NATO band. He was a drummer at the time and was part of an ensemble that participated in the Cork Jazz Festival. He had a great experience in Cork. I hope you are back on your feet soon enjoying Cork.
Caoimh, thank you or the update. It is heartening to have your report of having fantastic help in the hospital and being able to at least wave to your grandchildren.
Merry Christmas to you. As you have shown, it is our inner spirits that can show the light of Christmas and the deeper meaning that is the celebration of life.
You remain in my thoughts and I am hoping for your recovery with the ability to be back in your home.
May God bless you and keep you. I pray you will have increased quality of life and much more time to spend with your family. Sometimes words are hard to find. I know your doctors are willing you on together with all your friends here and rest assured you are in our thoughts and prayers. Xx
Happy Christmas Caoimh. My husband also has CLL and his consultant is in CUH. They give fantastic care to patients and as it is a centre of excellence I know you are in the best of hands. We will pray for you and as Christmas is a time for special surprises I hope you get all you wish for. Hugs from another Cork CLL’er xx
Hope things go well for you in Cork hospital. I lived in the county near Bantry so not the fine city of Cork but despite leaving at 18 I still have friends there and was back in summer 2019 and nearly ended up needing to go to Cork hospital thanks to CLL having given me a new allergy to beloved shellfish! But I got good help from Bantry hospital so was fine and spared the trip to Cork. Wishing you well, from London, and hope you get out with some decent energy and appetite back soon.
Praying hard for you Helen, may it please God to allow you many years of reasonable health to enjoy your grandchildren. Look after yourself and stay safe. Alice (kitchen gardener 2). xxx
Good to hear from you. I am the grandson of another strong and caring woman from county Cork. Like you, she cherished her children and grandchildren, she also had your self-awareness in the face of adversity, and your underlying optimism. Coping with a serious illness is not easy, but you seem to have the resiliency, along with the medical care, it will take to get through this.
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