Day +82. It must be over 3 weeks since I last updated my blog. Today was a red letter day. Though, it is fair to say that there have been a few red letter days since my last update.
I drove to the airport (and back) this evening, the first time since I went to pick Lesley-Ann from the airport on the 1st of December just before going into hospital. My brother Mahesh (Donor) was over for the week-end to see how I was doing and I dropped him off at the airport a few minutes ago. This was also the first time I am seeing Mahesh since the transplant. Today, March 4th, is also my father’s birthday.
I am doing very well. I have managed to overcome my fatigue. My ‘Hickman line’; the tube that was connected to one of my main veins, was removed last week. There was some discomfort when removing the line (it took about half an hour) but it wasn’t painful. They have also started to reduce my cyclosporin. It is all going in the right direction.
Mahesh sent me a link to CML (Chronic Myeloid Leukaemia) that I found very useful. It is called; Newly Dignosed – First Steps.There is an excellent booklet called the CML Guide which may be downloaded as a PDF. There is also a CML Tracker application as well that looks good. I will try it out. This is a Canadian website and it is interesting that they encourage cancer patients to research their illness. They suggest the following:
- Keep all appointments with the doctor and be sure to talk openly about any fears, concerns or side effects experienced.
- Be an information seeker. Learn about your diagnosis and the most current treatment.
- Talk with family and friends about how you feel and how they can help.
- Contact your doctor about tiredness, fever, pain or sleeplessness so that any problems can be addressed early.
- Get medical advice if you have prolonged changes in mood, feelings of sadness or depression. Depression is an illness that should be treated.
- Learn about your insurance coverage, healthcare facilities and available support for you and your family.
- Remember that the outlook for people with blood cancer is continuing to improve and new treatments are on the horizon. Researchers are studying new blood cancer treatments in clinical trials for patients of all ages and in all treatment stages.
The only problem with being an information seeker is that sometimes the message is not that palatable! Another article on CML, beyond the Basic, say the following; “The only cure for someone in the ‘Accelerated Phase’ of CML (this is where I was) is a ‘Stem Cell Transplant’ and goes on to say that disease-free survival falls to 30-40% for these patients”. I thought I had better odds! Let us hope that I fall into the 30% bracket. Based on my track record so far, it looks like I am in that 30% category. Anyway, no point worrying about that now. Cést la vie!
Shereen took part in a Japanese Speech Contest on Saturday and did very well. I was not able to go to it but was able to see her performance on tape. When you watch a ‘recording’ it is one dimensional in that and you cannot absorb the atmosphere. This reminds me of what Pat showed me last Tuesday while we were in hospital. She was reading ‘Have a Little Faith by Mitch Albom’ and she showed me this story from it.
“A little girl came home from school with a drawing she’d made in class. She danced into the kitchen (I can picture Shereen here!), where her father was busy at his computer.
“‘Dad, guess what?’ she squealed, waving the drawing.
“Her Dad never looked up.
“”What?’ he said, still finishing off his emails.
“‘Guess what?’ the child repeated, waving the drawing.
“‘What?’ the Dad said, still reading his emails.
“‘Dad, you’re not listening.’
“‘Darling, yes I am.’
“‘Dad,’ the child said, ‘you’re not listening with your eyes.’”
We may be in awe of watching 3-D (now 4-D) movies but yet fail to recognize the ‘God given’ benefits of 3-D by using all our senses at any given moment to the get the maximum benefit out of a situation. I am learning – slowly!
That is all for now folks!
6 replies on ““Dad, you’re not listening with your Eyes””
Raomal good to hear from you – you even sound less tired than last time. Keep up the positivity (sp?) you are truly an inspriation to us all.
You are always in my thoughts and prayers.
Gill
Raomal,
Delighted to hear that all is going so well. I have been anxiously checking your Blog to get updates and glad you are back in the ether again! It sounds like all is going really well and prayers that you will continue to go from strength to strength. Looking forward to seeing you when you are able for vissies.
Best always,
Anne
Hi Raomal,
Delighted to see a message in my e-mail to day….relief to hear and see you are doing well and moving in the right direction. As an information seeker…..broaden the search to diet, juicing, “let food be your medicine” – Hipprocates
Always in our Prayers
Blessings
Marian
Love the blog Raomal – it’s inspirational! Keep going……..
Wow Raomal – there is a new energy coming across in the latest entry. I was beginning to wonder where you had gone! Welcome back –
The story about listening with your eyes resonated and reminded me of a similar conversation with my youngest daughter Andrea which caused me to revaluate my priorities
– She caught my attention by saying
“Dad – you know when you are here but you are not really here?”
to which I replied “no – What do you mean?”
She said “like when you are talking to me and on your blackberry and you are actually here but you don’t hear what I say to you!”
Thanks for continuing to share your inspirational thoughts & best wishes for continued recovery – Kieran
Hi Raomal,
It is exactly 8888 days since my transplant!
I worked it out because I saw you were counting the days.
I normally only keep track of the years now and even that is hard – I am one of these people who uses my fingers when I don’t have a calculator!
My transplant was November 11th, 1987.
Before me, two out of the three people in ireland who had a transplant for the illness I had died. Not two out of three; two of the three. I agree with you that statistics are sometimes not worth pondering.
The difficult part, 24 ( and a bit ) years after my transplant, is trying to hold on to a sense of my own mortality and the need to make the most of everyday of my life. On average I could have packed more worthwhile stuff into the 8,888 extra days I’ve been given so far but there have been some highlights – getting married, having three kids and some time with my mother before she passed away. The time with her was only partial redress for what she did for me when I was sick.
Anyway, your brother is going to have some hold over you now!
My sister was 4 when she ‘donated’ her marrow to me. At the time, she protested to a nurse who was tryng to perform a blood test saying “I don’t want to save his life” so that has enabled me to deny her full claim to hero status!
Interestingly, OUR paths have hthe nearly crossed twice – once through a shareed friend, Kieran Carrick and once through Thousand Seeds (a lean Startup meeting).
Hopefully, we meet someday when you have recovered sufficiently to stop counting the days!