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

Profile photo

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.

Joan Borysenko

15 Comments

Filed under Cancer, Health, Life and death, Multiple Myeloma, Myeloma, Stem cell transplant

15 responses to “In a clod!

  1. I often wonder the same thing about the people in their 30’s , who have died after sct. It is as if they have a more aggressive mm. I had high numbers and was given a short time to live so I did not get a sct. I am using the drugs. So far it has been almost 3 years. My conclusion is to stay proactive.

  2. We all have to walk through the green door to the Other Side at some point, whether we are challenged by MM or old age or some other condition and when we lose our friends ahead of us, it does give us reason to wonder about our own mortality. I have a relative with MM who has had over 4 years of living after a grim diagnosis. Last night at dinner we were talking about the twins (now only 4 months old) getting to high school and the relative remarked casually “Well, I’ll be long gone by then…” to which the rest of us said, “That’s rude!” and the spouse said, “You’ll not be getting off so easily with them…” so we joke and laugh but the reality is unknown. To live like Pooh is truly the answer.

  3. Wendy;

    Thank you for the remembrance of your friend. I am also pleased to learn that he had taken a hike prior to his hospitalization and untimely death.

    The majority of us with MM do enjoy a respite following transplants. Even those of us with high risk versions of the disease generally respond to treatment. Without doubt, survival rates are improving and Outdoors Paul had good reason to be “Optimistic”!

    It seems likely that his infection happened due to a suppressed immune system resulting from the transplant. It is possible he contracted a bug that ran rampant through his unprotected body before the antibiotics could arrest it. Our vulnerability for the first year after transplant cannot be over emphasized.

    I am sorry for your loss. I hope that the gift of his optimism continues to inspire you going forward.

    Sincerely,

    John

    http://goodbloodbadblood.wordpress.com/

  4. Brad

    Like everybody with MM, i often wonder when the disease will come back as well. I had a transplant 5 years ago next month, and have been in remission since February of 2008, i think. Being told in my first doctors visit after diagnosis that i had 3 – 5 years to live, based on the averages back then really scared me. Today i take the attitude of when the disease comes back we will change my medication and fight it that way, which I believe is all I can do. You have to believe in the doctors that treat you, your faith, and thank god everyday for a new beginning and all of the people that love and support you.
    Stay strong and keep the faith.

    SIncerely,

    Brad

  5. Sandra Abraham

    Hi Wendy nice to read your letter but not to hear about Paul, so sad so young. As my prof. Said make the most of the good times and as you know I try my best xxxx

  6. Sharon

    Wendy, I know exactly where you’re coming from. I found out Paul had died when I was at the Birmingham Infoday and it really shocked me. It brought home to me how lucky I was to get through it after coming so close.
    Great quote! All we can do is live like Pooh.
    Hope your clod softens soon! x

  7. Love the Winnie the Poo quote. Might have to have that read out at my burial party. 😉 x

  8. Paul’s death also touched me, like you, due to his youth, his outdoorsiness, but also how suddenly and at what stage it happened. So sad.
    I love the Pooh quote though. I might have to have this read out at my burial party… of course you’ll be chosen to do that if I get there before you. x

  9. Joan bell Liverpool

    Hi Wendy. Sounds like your doing well and hope it continues. My understanding of myeloma is that it doesn’t suddenly return after being in remission but that, unfortunately, you can get infections whilst your immune system is still low. Takes a while for it to return to normal after transplant. In my case it was at least 6 months til my blood counts recovered and I could mingle again socially. . I wish you all the best. I had transplant in sept 2002 and am still in full remission despite initially being given a very poor prognosis.

    • Joan, I’m glad to hear you’re doing so well ten years on. And it’s good to hear of someone countering poor odds.

      However, you are incorrect about myeloma not suddenly returning after being in remission. After my initial treatment and auto SCT, I was in complete remission and was expecting a good few years. Alas, the myeloma returned quite aggressively after only 5 months. We all respond differently and some people go on for many many years without treatment, while others go through treatment after treatment, or just die from what can seem to be a simple infection. I wish you long life!

  10. Wendy,

    I think we can all get in a clod when we think about it like that. Half the time I convince myself myeloma’s turning into a chronic condition – like being diabetic or something, and the other half I think I won’t live long enough to see my youngest child start school. Paul’s death – not that I knew him – scared me too.

    I’m currently in the position of feeling progressively better after 5 cycles of treatment, but at the same time my light chains are stubbornly refusing to move. So I don’t know whether I’m getting better or worse. Why can’t myeloma be a little more straightforward!!!

    I hope you are feeling more optimistic again soon.

  11. Cath

    Hi Wendy – at first I thought ‘clod’ was a typo and you had naother cold!
    Sounds like clods are just as difficult to shake off.
    Two of your replies are about longer living (not merely survivaing/) after initially poor prognoses so hold the thought.

    • Hi all,
      thank you for taking the time to reply, I really appreciate your comments, those that are in remission long may it continue and those that are on treatment, I hope you get to enjoy a lengthy remission and I wish all of you the best

      Wendy

  12. Another great post Wendy, complex feelings so well described. I’m sorry to hear about your friend’s death, and to realise the particular impact it has on you and others with myeloma.

  13. Hi Wendy

    I know how you feel, well from the carer’s perspective any way. I still haven’t got out of the clod that landed when Paula died in June. It is like a light went out in me and I can’t find a match to re-ignite the flame.

    I think I’m more an Eyeore than a Pooh 😦
    Lorna

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