Yesterday morning Laurent and I sat in the hallway at the Cancer Centre waiting for our appointment with Dr Taylor, the chief oncologist, and Dr Pan, the radiation oncologist. I had walked passed this quilt countless times in the past six months but never read it. Yesterday I read it and it hit home: the last six months had been about all those things. Yes Cancer can perhaps challenge them but it cannot destroy them. In fact it can and in my case has made many of them stronger.
I won’t delay with the news: the good doctors told me I am cancer free. The CT scan from early February indicated that the tumour was gone and the scope that Dr Taylor did confirmed it. Laurent and I were in shock and almost numb with relief. The elation and joy came later. I’m bad with selfies but we had a glass or two of Pol Roger to celebrate before dinner.
I don’t think it is a mistake that “Friendship” is the centre panel on that quilt. So much of our encouragement and strength came from our friends. Your prayers, thoughts, and positive words of support gave us the will to continue on the occasions when the values on those panels were being challenged. There is no way Laurent and I can adequately express what your help and support has meant to us other than to say thank you and we love you.
The word for February 18th is: Friend frĕnd: [noun] 1.1 One attached to another by affection or esteem. 1.2 A person who you know well and who you like a lot. 1.3 A person who supports or care for you in time of need. From Middle English frende, frend, freond, from Old English frēond (“friend, relative, lover”, literally “loving-one.”
Well perhaps not in Mudville but in the hallowed halls of the Swallow Clinic and our abode. “Swallow Clinic?” says my faithful reader with a cock of the head and a raised eyebrow that suggests incredulity? Yes. A Swallow Clinic! A largely unknown but an important unit in most hospitals of any size.
“So what do they do there?” asks FR with a barely surpressed smirk. “Watch you swallow? Teach you to swallow?” Yes they actually watch you swallow and if there are problems they teach you techniques and workarounds to help overcome them.
As simple as we may think it swallowing is a complex involuntary reflex which involves the coordination of various organs, muscles, and nerves. (It is explained in some detail here.) It is also a reflex that we can forget if it has not been used in a while as in my case because very little feeding has been done by mouth. Before returning to normal eating a check is done to verify that the reflex is still there and that the pharynx is still protecting the airways during the process. Serious problems with aspiration can occur if that little pouch isn’t performing it’s function.
The process is a simple one. You are seated in profile to an x-ray machine and given a series of drinks to swallow. The technician – in my case the very charming Jo – watches the process on a screen and judges it. All the samples are mixed or treated with barium – not an element I’ll be adding to my spice rack. They start out with the most viscous – custards, mashed banana, yogourt etc and work their way down to fruit juices and water. I thought that a rather odd progression but Jo explained that the more viscous something is the easier it is to swallow. Water is the most difficult as it spreads and can cause aspiration. The final item is a real challenge: a dry digestive biscuit.
So why was there joy at the end of this little exercise yesterday? On everything but the dry biscuit my pharynx did what it was suppose to do and things went where they were supposed to go. I honestly don’t know who was the most excited: Jo, Brenda the x-ray technician, or me. I can start taking food by mouth and have done so today. Not a steak or even that order of fish and chips I crave* but several custards and a broth with puréed carrots. I have to be mindful that my system has not processed solid food since mid-October and introduce things slowly. Things such as dairy has to be approached cautiously again because the system has not processed any in a long time. But I have been assured that in a short time I will soon be able to enjoy (?) some of the things I’ve been cooking! I can’t throw off the chain that is the feeding tube just yet but that too will come.
To end the way I started the post. There is cause for joy: unlike Casey I didn’t strike out, I hit a home run!
*The things you crave in these situations can be quite bizarre and mundane.
The word for January 12th is: Aspiration ăs″pə-rā′shən: [noun] 1.1 a will to succeed. 1.2 a cherished desire or goal. 1.3 a manner of articulation involving an audible release of breath. 1.4 the act of inhaling; the drawing in of air or other gases. 1..5 Inhaling foreign matter into the lungs. 1530s as “action of breathing into,” from Latin aspirationem (nominative aspiratio) “a breathing on, a blowing upon; rough breathing; influence,” noun of action from past-participle stem of aspirare “strive for, seek to reach,” literally “breathe at, blow upon”. The meaning “steadfast longing for a higher goal, earnest desire for something above one” is recorded from c. 1600.
As I mentioned in the update I posted towards the end of November the last three radiation treatments were the most difficult. My body had received 30 doses of radiation and emotionally and physically I was drained. As we got ready to do treatment 31 I struggled to undo two buttons. I turned to Bethany, the technician, and said: I give up! And I meant on everything. Fortunately the remarkable radiation team at the Cancer Treatment Centre knew how to handle these moods and I continued with those final treatments.
I had been told by friends that the weeks after radiation would be the most difficult: and they were. I had no energy, wanted to sleep all the time, was often disoriented, and was experiencing incredible discomfort in my mouth and throat. I had lost my taste buds except sour and bitter and that sour and bitter taste was there 24/7. I was unable to swallow a glass of water or even saliva without wanting to be sick. I was depending on four units of the formula I pumped through the feeding tube four times a day to sustain me. Which it did – barely. My weight held at 53 kilos or roughly 116 lbs which means that over four months I had lost 20 kilos or 44 lbs.
I say none of this to elicit either sympathy or praise but as a picture of what can be involved in an attempt to destroy a cancer that has taken root in your body. l have been fortunate that the major elements of post-radiation trauma have abated after five weeks – people I know still experience reactions after six months. My energy levels have increased, my body is repairing itself, some of my taste buds have returned, the bitter-sour taste has largely disappeared, I can swallow some liquids and I have increased my formula to six units a day. My weight as remained at 53 kilos but should increase once I am able to swallow more varied liquids and finally solids. The chemo doctor is pleased with my progress and my blood tests show a return to normal after the six chemo sessions.
It has been a ride on the Big Dipper since I was first diagnosed six months ago but I have come to accept that I have to wait patiently and continue to be optimistic about the outcome. There may be more to come but I have never been alone on the ride for that I am eternally thankful.
The word for December 27th is: Optimistic /ˌäptəˈmistik/: [adjective] Hoping or believing that good things will happen in the future. 1759 (in translations of Voltaire), from French optimisme (1737), from Modern Latin optimum, from Latin optimus “the best”. The doctrine holds that the actual world is the “best of all possible worlds,” in which the creator accomplishes the most good at the cost of the least evil.
Well the first phase of the journey is over: yesterday was the 33rd and final radiation treatment. I apologize for not posting sooner but the last three treatments were perhaps the most difficult and all I have wanted to do is sleep.
The wonderful radiation team watched and cheered me on as I, with Laurent beside me, rang that bell to celebrate my final treatment. Unfortunately I haven’t been able to upload the video but here are two photos:
The mask that I wore for each treatment. It basically immobilize my head and held the reference points for the radiation.
All set to ring that bell with Laurent at my side as he’s been for the past 44 years.
Time to regroup and see what I can do about gaining some weight. It may be a bit before I post another update but once again thank you for your love, thoughts, prayers, and support.
I’ve just completed day 30 of my return to good health which means only three more radiation sessions left. The last one will be on Monday the 21st. The effects of the radiation will continue for as long as 2 weeks. I was told today that the sessions were the most intensive they give. I can believe it.
After that comes the waiting game. The effects of the radiation will continue for as long as 2 weeks. It will be up to 12 weeks before a CATSCAN will determine what the outcome is. It’s going to be a long wait. In the meantime I have to try and make up for the weight I have lost which will be a major challenge.
Thank you for your thoughts, prayers, messages of love and support. That and the incredible dedication of Laurent during all of this have kept me going. It has been as much a struggle for him as for me.
The word for November 16th is: Hope hōp: [1. noun 2. verb] 1.1 The feeling that what is wanted can be had or that events will turn out for the best. 1.2 A particular instance of this feeling. 2.1 To look forward to with desire and reasonable confidence. 2.2 To believe, desire, or trust. Middle English hopen, from Old English hopian.
Telling the stories of the history of the port of Charlottetown and the marine heritage of Northumberland Strait on Canada's East Coast. Winner of the Heritage Award from the PEI Museum and Heritage Foundation and a Heritage Preservation Award from the City of Charlottetown