A carer’s perspective …
Reviewing the diary of Gayle’s lymphoma now in its fifth year, I am reminded of the huge range of emotions both from the patient’s and the carer’s experience.
Shock and surprise were first, when Gayle was first diagnosed with Lymphoma in the brain although she was one of the most active and vital 65 year olds playing golf, bridge, grandmothering of 6 ( at the time ) and generally ” being in everything “.
Determination was next as a program was established by Prof Miles Prince of Chemo and stem cells transfusion at the wonderful Peter Mac .
We were extremely lucky to have great support from family, friends, golf club, doctors and the staff of Peter Mac and Cabrini where Gayle established herself as an ideal patient – co- operative, appreciative of treatment, and always polite and thankful to the extreme of apologising for being a nuisance !
Optimism was right up there when Gayle harvested many times the required stem cells and claimed “star patient status” from Miles Prince when indications were so encouraging that the treatment was working. Her determination to continue a close to normal lifestyle, resulted in several falls and worry was my emotion at this point to ensure she didn’t take on more than she was capable of.
When the lymphoma returned after two years, disappointment is an understatement and we both had to work pretty hard to keep the spirits up. With the aid of hindsight, I believe that sharing the news via health update email) and keeping as busy as possible did allow me as carer to continue to be supportive and not be overwhelmed by the situation.
Gayle was determined to give it her best shot and agreed to Radiology whilst understanding the possible side-effects. At the same time, enjoying and making the most of what time we have left was and still is full of laughs, tears, happy moments and very sad moments.
The contradictions are enormous, as damage to certain brain cells shut down Gayle’s mobility, affecting some very basic memories, yet allow her to remember every one and every word of every song she ever sang (many).
There is great pleasure in observing Gayle’s positive impact on other patients, visitors, staff and family as she leads the singing at happy hour, says hello to everyone (often by name), never complains and generally makes the best of her situation.
From a carer’s perspective, I have found regular yoga or Pilates to be a positive in my week, and I believe (without any knowledge as a carer before) that by visiting Gayle when I feel ” OK ” and not necessarily everyday, I feel we both enjoy my visits more. Sometimes this is twice a day whilst other times I feel I need a couple of days break.
Brian’s daughter-in-law, Gina, is an Ambassador for the Snowdome Foundation.