In a clod!

I havent posted for a while, not had much to say (unusually for me), life goes on with its usual ups and downs, but a little more down than up for me at the moment. My haematology consultant once remarked to me that I seemed to be stuck in a clod when I was going through a tough time with my treatment. It was not a term I was familiar with for describing depression or anxiety or whatever I was feeling at the time and I put it down to being lost in translation as she is originally from Greece and brought up in Germany. However when I looked it up in the dictionary and thought about it more it made perfect sense:-

clod

n. (kld)

1. A lump or chunk, especially of earth or clay.

2. Earth or soil.

3. A dull, stupid person

I hope she did not mean I was a clod as in a dull stupid person definition of clod but now I do get that description of being stuck in a clod, like a big lump of claggy heavy soil which is weighing you down and feels impossible to get out of. Actually I dont quite feel as immersed in a clod as I have been but lets say I am finding it a bit difficult to get out of a muddy field at the moment!

Part of this feeling has to do with hearing of the death of a myeloma friend recently as his wife posted on the Myeloma UK discussion forum to let everyone know. He was younger than me, only 41 and his user name on the forum was Outdoors Paul, for reason that he loved the outdoors and walking, living in Todmorden, Lancashire, he lived on the doorstep of the Pennines. The Pennine way to Stoodley Pike above Todmorden below is a walk that he probably did many times and I have done myself several times. It is also often a very muddy walk!

He died of an infection shortly after being admitted to hospital with a high temperature about two months after his autologous stem cell transplant (using his own stem cells like me). Apparently his aggressive form of myeloma had come back very quickly and he didnt respond to antibiotics and there was no time to start treatment again. He had posted a few weeks beforehand about his recovery from the transplant, that he was doing well and had been for a few miles walk with his dog up the hills. On the day of his admission he had been for a 5 mile walk in the morning. I was pleased to hear that.

He was diagnosed a few months after me and came on the forum with a very positive attitude, he used one word to describe himself in his profile….

optimist!

The exclamation mark was his annotation not mine.

He had to endure an array of harsh combinations of treatment because his myeloma was quite aggressive but eventually got to the point of stem cell transplant and was being lined up for a tandem donor transplant within 6 months of his auto (again like me but they couldnt find a donor for me). Despite what he was going through, his posts and replies to others were always so positive and upbeat expressing a gritty determination to get through whatever was being thrown at him.

As I certainly didnt feel that way during my treatment, I found his positivity and optimism difficult to relate to but I know that everyone deals with it differently.

We never met, the plan was that we may along with another myeloma friend attend a Myeloma UK info day in Birmingham in late October and drive there together but he died before then .

There have been several other youngish people I know of with Myeloma died over the last year, too many, always distressing and sad to hear about but I have found Paul’s death particurlarly hard to deal with. I think because it was so unexpected as he was recovering from his stem cell transplant and was meant to be in remission but his myeloma must have come back so quickly his body didnt have a chance to fight it.

It brings home that this could have happened to me, could happen to me anytime. I go for 3 monthly blood tests to test for the presence of disease but it is possible that the disease can come back so very quickly and aggressively in between those tests, perhaps less likely than Paul as he did have quite aggressive myeloma but nevertheless a possibility. Then I read the good stuff about myeloma becoming so treatable with the new drugs that are coming on to the market that it will become something you live with and manage as a chronic illness and I get confused. What is it going to be for me? What hand have I been dealt? Am I going to get 10 years remission or am I going to relapse in the next few months? Why him and others, when me and others, so many questions! That is the clod I am in. I know that these questions are unanswerable and more fundamentally I know that they are the wrong questions and will not assist me in getting out of the clod! I like the question asked by Winnie the Pooh in the quote below

What day is it?”
It’s today,” squeaked Piglet.
My favorite day,” said Pooh.”
― A.A. Milne
and on a more grown up level, this one

The question is not whether we will die, but how we will live.