My Heart Is Breaking

"Hope is the thing with feathers, that perches in the soul. and sings the tune without the words and never stops at all; and sweetest in the gale is heard, and sore must be the storm that could abash the little bird that kept so many warm.  I've heard it in the chillest land and on the strangest sea; yet never in extremity it asked a crumb of me."  ~ Emily Dickinson

 Les had a scan and blood tests Friday, June 24th. The clinician at the RFH called us on Monday, June 27th to say there is lesion on Les' pelvis and they are pretty sure it is cancer. We went down today (Tuesday, July 5h) to London to meet with the oncologist at the RFH. She confirmed that Les has a cancerous lesion on his right hip bone and his lungs are seeded with teeny micro lesions. The large lesion on his left lung that they have been watching for the past nine months has not grown at all. She gives us six to twelve months. Les will undergo one rad treatment of radiotherapy to the hip area to ease the pain. He will also go down once every four weeks to have an IV treatment of Bisphophonate which will strengthen his bones so they don't crumble and fracture.

Again we were not told by the medical establishment when this ordeal began, that colorectal cancer is a fast moving, aggressive cancer which usually metastasizes; in fact it is characterized by Oncologists as one of the four typical metatastical cancers. With the common chemotherapy and radiotherapy treatments for this cancer, we have now discovered that it is typical for cancer to move into the bone marrow within three years post-treatment. This is because radiotherapy--while killing cancer cells, also damages healthy cells at the level of the DNA and they can turn cancerous and begin seeding the body with the disease.

The cancer pain was masked by Les' left S-I joint being out of place since late March. After the chiropractor put it back in, Les' energy level shot up and his pain dropped off but now it has moved deep into his right buttock and across his lower back and upper thighs and it has grown stronger with each passing week through June. He was taking Tramadol and Paracetamol on a regular basis throughout each day and he now has a prescription of Oromorph (oral Morphine).

Les hung up the phone last Monday and his eyes filled with tears as he told me. We held each other and cried. I am devastated. We managed to claw back nearly three years of a good life despite the odds, and I personally have worked myself to exhaustion researching the latest discoveries, looking at the latest literature on cancer research, finding different protocols, and getting Les to follow them, changing our diet, cooking differently, etc. etc. doing my best to keep him as healthy as possible for as long as possible.. I really thought we were going to beat this. I can see now that I was in total denial about the possibility Les' back pain could be cancer. My heart is breaking, piece by piece, moment by moment. I am trying to memorize everything about Les and I cannot do it fast enough. I feel like a huge sharp claw has reached down and gutted me and I am hurting so badly. I cannot imagine this world--my world--without Les in it. It hurts to breathe.

Les is not frightened of death. He saw it first hand with Val and he knows what to expect; he just isn't ready to die yet--there is so much more he wanted to do and we've had such a short time together. We are looking ahead to what issues may come up and what items need addressing by us both in the weeks and months to come. We will continue to try new and different alternative cancer protocols as well.

Metastatic bone cancer is not curable so we are investigating palliative care now with a goal of controlling Les' pain and ensuring that the time he has left is of the best quality possible and not spent strapped to a hospital bed with tubes going in and out of his body. There are two very good Hospice Care Programs in his GP's catchment area to which she can and will refer us when the time comes. One is in Milton Keynes, and the other is in Berkhamstead.

We have to travel fast now to get ourselves to Cow Roast as soon as possible which offers us the best place to access trains, the GP and other services. 

Leaving Rugby this morning. Travel plans are: Wednesday, July 6th: Rugby to Braunston. Thursday, July 7th, Braunston to the Leicester Arm (top of Buckby lock flight). Friday, July 8th, Buckby to Stoke Bruerne. Saturday, July 9th, Stoke Bruerne to Stanton Low (between Wolverton and Milton Keynes), Sunday, July 10th, Stanton Low to the top of the Soulberry three locks; Monday, July 11th, Soulberry to Marsworth. Tuesday, July 12th, Marsworth to Cow Roast.