To be blunt, this is the year I will bury my son.
The Wednesday before Christmas I took Mathew to our local emergency room because of severe left chest and underarm pain. It had started as an intermittent pain that grew in frequency and intensity until Mathew wondered if he was having a heart attack. None of the pain meds were working so off we went.
The ER Doctor did an ecg, determined Mathew’s heart was working just fine so sent him for an xray. The xray showed effusion (fuzzy white stuff where the colour should have been black) so off Mathew went for a CT scan.
The ER doctor told us Mathew’s cancer had progressed significantly since the last scan done back in May 2016. There were three tumours, 2 in the left lung and one in the right. The doctor adjusted Mathew’s pain meds by doubling the morphine to 30 mg three times a day, suggested we contact Mathew’s Oncologist and also said he would send a pain specialist our way.
We saw the pain specialist a few days ago. She brought with her a copy of the written report from the scan which we were given. It is worse than either John or I imagined. Kristen was with us, being home for Christmas, but Mathew was resting in his bedroom so he doesn’t know about the written report and we will not tell him because it will upset him greatly.
The written report shows his lungs are riddled with Ewing’s Sarcoma and so are the lymph nodes. Some of the nodes are up to 5 cm in size (think of a lime) and one mass is up to almost 6.5 cm. Both the pain specialist and the ER doctor expressed surprise at how well Mathew is functioning so far. I gather his youth is making up for any deficiencies thus far.
The pain specialist gently suggested we start making or finalizing end of life care, to visit the local hospice house and think about funeral arrangements.
The next step now is for a Respitherapist…or someone like that, to come into the home and see how Mathew’s oxygen stats do when he walks or moves around. Dr. H., the pain specialist, could hear a bit of lung deflation where a conglomerate of nodules are growing together in Mathew’s lower left lung. We are also planning an appointment with the Oncologist and Radiation Oncologist to see about palliative radiation to the area of the lung causing Mathew pain. This would be for palliative care relief only.
Mathew feels sick a lot of the time and has basically stopped going out of the house. We did manage to get out a few times before Christmas but maybe once a week if that.
Christmas was very relaxed and we enjoyed being together and taking it very easy. We had our own Christmas dinner this year, cooked by John, with plenty of leftovers. Kristen’s visit was too short…*sigh*…as always.
My time is devoted to Mathew. As he seems to be in a decline, health-wise, I find it difficult to update the blog. One, I don’t like talking about my feelings and two, I’d rather not spend time rehashing what is going on and thinking about it here.
I will keep you posted on updates that come along but I don’t see them being great news. Our goal and focus is to keep Mathew comfortable and comforted. For him that means me being glued to his side and it is an honour to provide him with that security.
I expect we have a couple of months… to the end of May at the very, very latest. It is with a dreadful disbelief that the days are counting down and I want to freeze time rather than face the inevitable day growing closer.
My heart is breaking. All of our hearts are. Mathew is loved by so many but he is unable to manage much stimulation these days and he prefers it quiet. Family stop by and visit in twos, maybe in threes on a good day.
Mathew’s interest in food comes and goes. He isn’t interested in most of the junk food that he used to love and he only eats one, maybe two meals on a very good day.
Anyone with a health care background will know this is the general decline of a cancer patient. There is no miracle here and neither did I expect one although there way always that little bit of hope.
We do not believe in God or have any religion to speak of. We are comfortable in our beliefs and ask that this is respected. If prayers make you feel better then by all means go ahead in your own time and place but please don’t ask me to pray with you… as I was asked today. I am happy for you if you believe in God and find solace in that. I am putting this out there for those who may not know us very well because my patience is getting shorter.
So it is 2017.
I hate it already.