Well, Christmas is almost with us again, and will be over and done with in a flash. Two years ago I had just been discharged form Derriiford hospital in Plymouth following my whipples procedure for pancreatic cancer.
In the months prior to the 7 hour operation which was literally a life saver for me, I could not look ahead to seeing another Christmas, but here we are the third Christmas since diagnosis and surgery and a difficult 6 months of chemotherapy. I fully appreciate how lucky I have been to survive the surgery, and at the last check with my oncologist although still experiencing some discomfort and pain, he could not see any evidence of cancer spread. I know the odds are against me however as pancreatic cancer is one of the more difficult to cure, and on paper the odds of making five years post surgery is around 2% so whilst I am in the middle of this `danger` period I continue to embrace life as much as possible within the constraints of my Parkinsons disease.
Having two major diseases is of course not unknown but it is extremely bad luck, and while the cancer and potential spread is never far from my mind, I have to deal with the day to day limitations of having Parkinsons. I can tell it is having a detrimental affect on me, as I suffer with insomnia I no longer except on very rare occasions manage a full nights sleep. As a rule I sleep for 3 hours max then I am wide awake. What tends to happen now is that I will get up and have a cup of tea and watch some tv or do some admin bits in the Facebook group I am proud to be a big part of The Parkinsons Chat and Support Group.
Being part of, and an admin in this group has without doubt given me a purpose and a focus and I have made many new friends all of which have Parkinsons or care for a family member with the disease. We attract a membership from all over the world, and while there are many similar groups on Facebook, one thing I believe makes us stand out is while we embrace, discuss and support issues around Parkinsons we also have a social side too where we can forget the drudgery of the disease and have a good laugh at and with each other. We greet each other in the morning and we notice if someone who is normally a regular has been quiet for while so we message them to check all is well.
I do believe that this group helps many others as well as myself as we are part of a family and we know the issues of living with this cruel disease so we can genuinely empathise and understand the pain, frustrations and the taking away of our independence we are all experiencing. The group members never fail to impress me, with their kindness, willingness to greet and support new members and to make them feel part of the community. Some join and leave again quickly to find one of the other groups to better suit their needs, and that is ok, at the end of the day we are all doing a good job and we walk the same road together.
Well my daughter Gemma is getting excited about Christmas and we look forward to seeing my son between Xmas and New Year for a few days. From my family to yours we wish everybody a very Happy Christmas and hope for the New Year. Our future may be a little uncertain but we battle on regardless. We have a saying, "We may have Parkinsons, but Parkinsons doesn`t have us" and long may that continue.
Thank you for reading this and feel free to share it with other people who may be interested.
Tony 13/12/2016
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