Cancer Sucks, Life at No.22, The Good Fight

Keeping up the Good Fight #6

Suzanne

It’s been a while since I wrote about Les’s health journey with his blood/bone marrow cancer. Many of you have followed his progress, and even more have done so since we were full-time travellers.

Here’s the thing about the roller coaster of life around cancer or life after cancer treatment. It can be unpredictable. Sometimes, we lose our sense of humour for days, with grumpiness and anger taking hold. Then, on others, a light-hearted approach keeps us going with thoughts of positivity.

It’s been nearly three years since Les had his stem cell transplant; to be precise, it happened on 6th September 2021. Transplanting new stem cells is a non-event, similar to a blood transfusion. What happens before and after this event is a living hell; Les had to be revived three times and woke up with someone thumping his chest. Other effects are horrendous, which I won’t go into, and some that last for over a year or more; for Les, there haven’t been many months without some effects. Things weren’t progressing with his “new” normal. This week, we found out that his transplant had failed; even with a 100 per cent match, his deformed cancer cells were more robust than his donated cells.

We eat right, exercise, and live healthily. We breathe fresh, mostly clean air. We surround ourselves with love, positive people, and thoughts. Mostly. We do as we’re told and follow instructions from the health professionals, who have been and are still amazing and incredibly supportive. We never lost confidence in the process at any time, well, perhaps for a moment or two.

Healing through cancer is like throwing spaghetti on a wall.  We did everything possible to rid Les of Primary Myelofibrosis, putting our faith in what was the best option: a stem cell transplant. So much emotion, pain, extended hospital stays, and doing all that through a pandemic and Auckland being shut down added to the stress and bizarreness of it all.

Apparently, that wasn’t enough.

Getting back into what everyone would classify as everyday life has been challenging. You know, where you have a reasonable social life and stability to plan the next stage of life or even think further afield than the next medical appointment.

Now, we wait for that appointment to be given options for the next step. The big option may actually be to do nothing and pump more life into what time Les has than pump more drugs into him.

We shall have to wait and see.

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Published by Suzanne

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67 thoughts on “Keeping up the Good Fight #6”

    1. Oh, thanks, Neil. Everyone in our blogging community have been so good. Plus, others who we know also read my blog. Easy route is to write it down for all to read. Yes, waiting is sometimes the hardest part. Especially for me who has very little patience at the best of times.

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  7. Stay strong the pair of you. I can only imagine how you must be feeling but it’s important to live the best lives you can while you can. I’m not suffereing in the same way as les, but I’m pretty well housebound and life can be frustrating at times. None of us stay young forever, but life is not over until it’s over.

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  11. So pleased you have updated us on les’s health. Every time I read one of your posts I wondered how you both were. Sad to hear the stem cell therapy failed, tough times you’ve both been through. I hope you get some positive news about options. As with everyone else I send you big hugs .💖💕

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  12. Oh, my God, Suzanne! I really didn’t want to read this. I was busy living in that fantasyland that is so easy when it’s not happening to you. Thanks, sweetheart! There’s some great advice here, and you’ve both been incredibly brave so far. I can only hope with all my heart.

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    1. Thanks for your kind thoughts, Jo. I’m sorry that I had to share bad news. Though underneath, I sort of knew it wasn’t going well when so many biopsies were needed. In the meantime, we’ll take one day at a time and shout ourselves a few treats.

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  13. Ah, Suzanne, I’m so sorry to read this. I had hoped that no news about Les’s health meant that things were going reasonably well. However, it seems you might have tough decisions ahead of you. Wishing you both the strength and wisdom to come to the right one for you. And the patience, which I note you say is not your strongest point! Love and virtual hugs x

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    1. Thanks Anabel, there really wasn’t too much news as we thought he had sort of stabilised until now. Things had to be confirmed by the transplant specialist, which hopefully won’t be too long before we see him. A silly saying cones to mind, “When the going gets tough, the tough get going”😁
      Thanks for the hugs 😘

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    1. Thanks so much, Cathy, for your good wishes. I believe that we aren’t given circumstances that we can’t handle, and being there for someone else is what life is all about x PS Plus a good supply of treats 😁

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    1. Oh Jude, sorry to have made you feel sad. Yes, I was dumb struck for at a moment, and thought Les was pulling my leg. More information about what other treatments are available when we visit, his specialist in Ak.

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  17. I’m sorry to hear this Suzanne. I know the helplessness of watching someone you love go through months of treatment for blood cancer, nearly dying, not knowing what the outcome will be. There are new treatments and clinical trials emerging all the time and I hope there are some options for Les at your next appointment. Hope is a rope, hold on to it and don’t let it go.

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    1. Thanks Jim, yes blood cancers are so scary and especially when they’re rare. You’re right regarding new treatments and drugs, unfortunately not for Primary Myelofibrosis at the moment. Though the advancement of treatments has seen many more survive than say 30 years ago.

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    1. Thanks very much, Tracy, and I appreciate those virtual hugs and sending one back to you. Writing is good to sort out a mind of racing thoughts. Our blogging community is a wonderful thing during good and hard times. Take care, too.

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  19. Sometimes you just have to share bad news to give it space and stop it eating you up inside.
    My youngest daughter lost her fight to an incurable form of ovarian cancer last November, but after diagnosis in 2018 she made the most of the good years on her first round of meds. She was promoted at work, and she walked the Comino trail with her partner in the year before she died.
    It was about then, in November, that my husband was diagnosed with lymphoma (not the diabetes meds they had though were causing his declining kidney function). Sadly he was by then too weak to stand up to the chemo.
    Stay strong!
    My son-in-law was given six months to live after being diagnosed with inoperable cancer of the oesophagus that had spread to his lymph glands. He is a fit lad. After chemo (he’s since been told he is the first to have completed the full treatment) his tumour had shrunk to a third and no sign of cancer was found in his lymph glands. He underwent more chemo with different drugs and radiotherapy, to be told at the end there was no sign of cancer anywhere. It only takes one cell, and he is getting 3-monthly scans, but it seems, miracles can happen.
    Good luck with the next round of treatment. There are a lot of options out there nowadays.

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    1. Thanks, Cathy, for sharing your story. I sadly remember reading about your daughter and husband, though not about his blood cancer. Weirdly, the multitude of cancers and their treatments affects each and every one so differently. Even the most experienced oncologist can not state what will happen. They have only done a few transplants on people with Myelofibrosis compared to the thousands for leukemia or other conditions.
      I’m really pleased to hear your son in law is doing so well.

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      1. They took their time. My youngest son went out to join them for a few days. Not on my bucket list, but she loved it. As you say, we’re all different… our dreams, our diseases and our responses.

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  21. I’m not sure why I hit the ‘like’ button as this isn’t likeable news. I’m so sorry to hear the transplant didn’t work as you’d hoped it would. It sounds like you’re both dealing with the situation as well as anyone could, and probably better than most of us. Stay strong (I know you will) – I’ll be thinking of you and sending hugs 🤗

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    1. Thanks very much, Sarah. I see the “like” button as an acknowledgment that you’re right the post 😊
      We’ve got through this far and realistically knew that perhaps it wasn’t going to work. Nothing in life is guaranteed apart from taxes and death 😊 We’re tough though soft centered.

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  23. Hell, it seems it must be utterly exhausting dealing with each new deal of the cards. You are both right there in my thoughts, your posts are special to me over in NZ and this one must have been a bitch to write. Be easy on yourself, the hardest thing must be not knowing and accepting it’s not in your control.

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    1. Ruth, you’re a gem, thanks very much. To think I used to enjoy the odd game of cards. We’re becoming pros at dealing with the unexpected. When all said and done, we are very fortunate to have had the opportunity to travel extensively and as a couple we have done a fair bit. Being at the mercy of our current health system when I thought we may be reducing our time visiting Drs etc, that is disappointing. Writing makes it more real, and yeah life can be a bitch sometimes.

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  24. Like everyone else, I was hoping this was going to be a gleeful update. I’m sorry that you and Les are still dealing with this. I know you are aware of the love and support that is out here in blogland. I’m sure you and Les will make the best decisions for you. Sending hugs across the ocean.

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  25. I am so sorry to hear that the transplant hasn’t been successful, and I can relate to the emotions you are both experiencing. My best wishes to you both as you contemplate where you are and the next steps.

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