I don’t think we can ever be well prepared to hear the news that someone very near and dear to you has been diagnosed with a ‘terminal illness’. The focus almost immediately falls on the patient but I think the close family needs more support than the patient. I will write my thoughts on this today.
Day +7, my blood counts continue to drop. It seems like I am getting a sore throat. They did warn me of this. The chemotherapy damages the lining in your mouth and all the way down the gut. The new donor stem cells is what will help to repair this. There is a time lag and that is one of the rocky patches. This is one area in the transplant process that they haven’t got a good handle on and no doubt a major area of research is being carried out. I have to do regular salt water mouth rinses and take mycostatin that helps to delay the damage. My boat is in ‘stormy waters’ heading towards the hurricane! One of the miracles of Jesus, ‘calming of the storm’ comes to mind here (Lk 8: 22-25) and just like his friends we may have to wake him from his slumber! When I started writing this blog it was to shine a light for my children and instead I find that it has helped me a great deal to lift my spirits. There is a Buddhist saying; “when you light up the path for another, it lights up a path for you”.
It was on Monday April 11, 2011 after a routine blood test, that I got a call from my GP to rush into the Accident & Emergency Department of St. Vincent’s Hospital, Dublin. When asked, she said that my white blood cell count was raised and that Leukaemia was a possible cause. At the hospital, the Consultant Haematologist gave me the bleak news that in his opinion it was a very acute form of the disease and that I should be prepared for a very long stay in the hospital. However, the diagnosis changed the next day to a chronic form and I was home by Friday.
The first day was the most difficult day to handle. It was disbelief, shock, horror and fear all hitting you like a ‘perfect storm’. I was in tears most of the night not fully able to comprehend what on earth is happening to me. It is in these first few days that I, the patient, needed the support. I was very fortunate that almost immediately I was surrounded by a wall of prayer. The rest of the journey was relatively easy for me, as I was able to accept the situation and work towards a solution. This is a bit of a roller coaster ride, but with the support of my friends and family I have made it to this point.
Reflecting on the last few months I feel that I should have done more to figure out how to support those affected by my condition. This is Pat my wife, my mother, who lives 8000+ miles away and my four children, Lesley-Ann, Amal, Rohan & Shereen. The focus is always about the patient but those nearest and dearest to you suffer more as they would feel very helpless. Fortunately, our friends connected Pat with the local cancer support groups, relaxation therapies and counsellors and the process has been very helpful. I feel I let my mother down as we should have figured out some way to better support her through this crisis. I don’t know what affect this had on my children, but that it would have been better to deal with it upfront and even having them join Pat when she went to the cancer support group. Sickness has a way to give you self pity and draw energy and support into yourself, in a way, helping you dig a deeper hole. Lesley-Ann is very quick to point this out by saying “Dad, you are playing the martyr again”. She is right, we all win, if we can look outwards instead of inwards. It was great to get all the attention, but I wish I was looking out more for those affected by my sickness.
That’s all for now folks! Tomorrow I might try and take a different tack by looking at the similarity of entreprenuership/building a company and the journey back to health.