Three Twisted Knots

Catalina Staheli took this photo of one of my avatars last year. It was April of 2015, and my husband, Joe Raftery, had just been told that there was no curative treatment his doctors felt would work for him. There was no way to tell how long his life would be, but Hodgkins Lymphoma, a cancer that’s cured in 90% of people, was going to kill him.

Nobody knows the correlation between different sorts of people and who does or does not survive Hodgkins. We just were part of the unlucky 10%.

So I turned in a blog application for the 2015 Fantasy Faire in Second Life, and it was one of the most positive things I’ve ever done. My husband watched with pride as I learned how to do all kinds of cool stuff on behalf of Relay For Life, watched as our totals went up, had me read aloud to him every blog post I wrote about my blog narrators enjoying the Fairelands and their experience of the Fantasy Faire, and cheered me on when I spent a little more money than I could really afford on some super cool stuff late in the Faire.

The fact was, at that point Joe was relatively healthy. I say relatively healthy. He was tired. He slept a lot. His energy would fail him quickly. But he’d been off chemotherapy for a few months and was feeling better than he had in ages. So we went off to Germany for a music convention, spent some time in Ireland with his family, threw a wonderful 60th birthday party for him, went to another German convention, dealt with my having a total knee replacement in the middle of all this, and then made plans to put him into some experimental treatment programs that might help others even if they couldn’t help him.

One of those trials was far past the initial stages, and their hope was they could get Joe into remission long enough for him to be healthy enough to undergo a stem cell transplant. It didn’t work. In fact, he was so sick by December of last year that on his final visit to the trial hospital, they kept him in for nearly two weeks and I ended up travelling to Oxford and staying in hospital accommodation to be near him.

When he came home, we started putting his affairs in order. On the 30th of December, we had a frank conversation with his medical team, and they told us they felt we were looking at months to live and not years. Joe mentioned that a trip to Sligo to visit cousins was on his bucket list, and the nurse liaison looked nervous and said we’d better plan that within the next two weeks.

So we did. And we got my son over, and we mixed up the dates and ended up going to Sligo in the middle of my son’s visit, which screwed things up for everybody, although in retrospect, I’m kind of glad we did that, because it meant Joe got to have two things he really wanted: a chance to spend time with my son, and his trip to Sligo.

Because by the time we were preparing to come home from Sligo, Joe was dying. We came home on Wednesday, the 20th of January. On Thursday, we had a great evening with our whole close family: my son, his daughters and their partners, and their mother. It was a wonderful night, even though he had to go to bed kind of early.

Over the weekend, his condition worsened, and I learned that while I was prepared to do and capable of doing more than I ever thought I could, I was not capable of caring for him 24/7. We planned to seek home health care as soon as the new week began.

Only, on Monday, he had an appointment at the hospital to get some palliative chemotherapy which they hoped would slow his symptoms. Once we got him there, the doctors took one look at him and told him they wouldn’t be ordering the chemo. It wasn’t going to do him any good and would probably make him feel worse, they said. Then, they took me aside and told me we needed to admit him to hospital. I think I knew then that he wouldn’t be coming out this time. I think I probably knew sometime over the weekend, but I just didn’t let myself believe it.

The next four days were spent with our family in Joe’s hospital room. He was too frail to move to hospice, so they hospital arranged for a private room. The staff at Kings College Hospital were amazing. We kept close touch with Joe’s brothers and sisters over phone and Skype and FaceTime, so they all knew what was going on.

On Thursday evening, the family left late, after 11pm. There had been stories and laughter and reading of books, and even though Joe had stopped talking to us after a lucid period on Tuesday night, we knew he could hear and understand us. Don’t ask: we just knew. I had a cot by his bed. His breathing was quite laboured, so the nurse gave him morphine to help him sleep.

I think I finally got to sleep around 2.00 on Friday morning, but I woke up suddenly around 4am. And he wasn’t breathing. So I checked him for a pulse, found none, and called the nurse. He was still quite warm, so I suspect that it was his stopping breathing that woke me up.

As I write this, it’s 3.30 in the morning on Friday, the 29th of April. I’m still too young to be a widow, but I have been one for three months now.

Why do I relay? Because 90% of Hodgkins Lymphoma patients are cured, and my husband is a statistic. Because 90% isn’t high enough. Because cancer turned me into a person with a black cloud over her head for three years. Because it took my tough, athletic, spontaneous husband and replaced him with an old man who was afraid of things. My husband was not afraid of things.

Dear Joe, my beloved, my anchor, my love:

Since your death, I have gotten on my bicycle again. I have cycled to Tesco for groceries. I have had posh meals and gone to shows with my sister and with your daughters and with Filo and with relatives from Ireland. I have jumped off a mountain with France and lived to tell about it. I finally went to Glastonbury. I went to Copenhagen, just like we planned, and I bought my raven earrings, just like you told me to. I’m getting my right knee replaced on the 20th of May: I’ll be recovering from that and back at work before you’ve been gone for six months. I also got a tattoo that doesn’t have your name on it: I know you wouldn’t like that. And I’m probably going to get a new piercing for my 50th birthday. Sorry.

I know you were afraid for me. I know you were scared I’d lose my mind and be consumed by grief. And I am consumed with grief, and I have lost my mind, but I think I have put a little piece of your mind in my head, too. With that little piece I am learning to be brave again. I even danced at Teddy and Tom’s wedding, and I knew you’d have wanted me to and I know you’d love to have seen that, assuming you’re not out there looking. I’m not really sure you’re not, and not just because of that time the top, just the top, of the canister of peppercorns fell softly on my shoulder when I was cooking and France and I joked about you being in poltergeist school and just trying to move little things and not wanting to scare me too much.

Being part of Relay For Life has brought all the things I hoped for last year back into the forefront. I hoped you’d live for years in palliative treatment, the way some people do. I hoped you’d be with us for a long time. I hoped you’d live to see my 50th birthday, which I’ll spend in Germany with friends and family from our musical world. All that hope I held came crashing down on me during the first weekend of the Faire this year, and I’m afraid I did lose it. I cried a lot. I cried not just for you but for every carer out there who gives their time and their love and their hope. I cried because it’s hard to look at people on a different part of the journey than I’m on and hold out any hope for them. I cried because in the end, I couldn’t cure you by volunteering my head off for Relay for Life. I cried because I’m a statistic too, just as surely as you are. And I cried because I couldn’t imagine giving it up, not working, not telling people about this experience over and over again so that they know they’re not alone, so that they know we are all moving through the same trials no matter where we are in life, so that they know everyone touched by this disease will touch someone else and make their burdens lighter, if they can, if they are able.

Thank you for giving me the best twelve years of my life. I hear you saying, “So far.” Yes. Thank you for giving me the best twelve year son my life, so far.

Love now and always, no matter what,
Gwen