This resonates with me in a big way! Back in 2008, when I was first diagnosed with an incurable ( but manageable 🤔) form of Non Hodgkins Lymphoma I was told that 1.) The disease could kill me 2.)The treatment could kill me, PERIOD! I was like WTF, WHAT kind of choice was it to have to try to figure out WHICH ONE was the lessor of two evils?! Of course choosing the one that at least gave me the chance to live was the one I had to choose. That choice did not come without a price though. The treatment basically destroyed my immune system, so much so that I developed an acquired immune deficiency that requires I receive replacement immunoglobulin (IVIG) every 4 weeks for the rest of my life. When I relapsed last fall, they told me they would be treating me with the same drug. As they put it, “since it worked the first time, and the “damage” it is known to possibly cause is done, that risk no longer exists.” Which seems so messed up to me, but here I am, now in the maintenance phase with that very drug. Ultimately, as patients we have to be our own advocates, difficult as it is at times. No one else has the right to tell us how we should be “doing” cancer.
Hi Deb - thanks for your comment. It's interesting to hear your talk as a person who has a different form of blood cancer and your experience of complex decisions. I find self-advocacy hard, especially when feeling ill or low. I have to be feeling strong to do this especially when things happen in the moment and to be alert enough to notice and assertive enough to say something and brave enough to accept the consequences of raising the matter.
I hear you about how hard it is to advocate for ourselves when we are feeling so ill. That first year was by far the worst and one that I would never wish on anyone nor have to go through again. This time around wasn’t as bad, though it did have some moments. Some of it is that we as patients are armed with more knowledge about our diagnosis, and we know how to push back better.
Agreed and knowing how the system works! Agreed - first bout of chemo was tough but after that I felt much more prepared. Now my problem is that I can't really remember much about what happens as an inpatient as I've had very few overnight stays in the last 18 months. My biggest stays were during a Covid lockdown so things were different then.
What a deeply thoughtful post and thread....feeling very touched by the stories. Support and non judgement seem to be two of the most important aspects in thus decision making process. When time is of the essence deep listening also feels like an essential. I felt this way in mums last few months, of anxiety and panic attacks. She had suicidal thoughts about being alone and we, her children, were thinking about her having to go into a home .....even though we felt it would have been the death of her. Another very complex situation....and even though we all picked together to support and listen...it was so hard to stay out of judgment.
I am in constant awe of your courage and strength juliet ❤️
Thanks Jon. I echo your comments about non-judgement and also wanting to make decisions on behalf of someone else - who may not agree. We found with our mum she was always very keen pre-dementia for us to put her in a care home if the need arose. Yet in her years with dementia she really didn't want to go into a care home. So it was such a hard judgement call especially for my step-dad. It's another good example of the complexities of decisions we make and the risks we take.
Making decisions of magnitude is alway difficult/complex. We make them for many, often very personal reasons. I can't begin to imagine how difficult making such a huge decision, in only 9 days, was for you. Judgement is not a helpful reaction at all. I see a very brave, pithy and very determined woman. Ron put it so well i am blatantly plagerising.. sending love, appreciation of who you are, and the story you share xxx
Aw thanks Mairi - it was a big decision to have to make at speed but so many people do have big decisions aside from cancer treatment. Going through any sort of adversity is tough and life decisions - well we all have these. What is interesting is the decision-making around a stem cell transplant, listening to other people's stories it's evident that no-one takes this lightly and the reasons for having or not having one are often very specific to each individual.
Deep, hard won insight. Great examples of decisions that reflect context and our values as decision-makers. And so important to pause the process, to slow things down to consider rather than to react when we have time for discernment, to understand the risks in the shades of gray! Sending love and appreciation for who you are, the story you share.
Thanks Ron - what also came to me was that medical professionals may also be in a similar position in that some of their decisions will have to be around risks and benefits too. So there is another dimension/context to this in a cancer context.
I’ve nothing to add to this except admiration for your courage and the knowledge that no one knows how they will act in these situations until they are facing us. Much love ❤️
Thanks Ruth. I think you are right. What is incredibly is that when faced with adversity, I find that most of the time, I can manage. There's some good black and white decisions too, e.g. no cannula = no blood transfusion = no energy. Thus no matter how much I hate having a cannula inserted, my sleeves are rolled up and I just accept it as an unpleasant part of the process. Admittedly when it takes a few goes to get the needle in, I do get increasingly weepy.
A thoughtful story today, certainly. Juliet, you and I both know the fear and numbness of mind that comes while making such a decision. I was not as pressed for time, but I did consider both possibilities. I talked at length with my husband and doctors about my decision. It was a harrowing time. That I would consider not having SCT was heartbreaking for Rhea. But I had come from the other side of months of chemo and illness. I didn’t necessarily want to keep on. When doctors asked me about suicidal thoughts, I was incredulous that they had to ask. Who would not have those thoughts? In the end, I did have the SCT, after one cancellation and a setback involving yet more surgery for another form of cancer. (Thankfully benign). Recovery, as you say, was almost two years. And I’ll never be the same, but then none of us are the same after this, are we? In the end, I did it for my husband, not for me. And I hope I never have to make a choice like that again.
Hi Susan, your response is a blog post in itself. Thanks so much for commenting. When I look back although the STC decision one of my dithers was "suicidal thoughts" - in that was a decision to say "no" an act of suicide? Interestingly none of my healthcare team suggested this. In the end, I decided it was a positive "Yes" to a better quality of life, albeit probably a shorter one rather than "No" to life itself. All my family were amazing throughout this time, especially my husband and son. My sisters reassured me that "Everything would be alright" if I died. The stem cell specialist was lovely but the conversation did get awkward as it started with him stating I had a 50% chance of a successful transplant. By the end of the conversation it was clear that the actual reality was a small fraction of this likelihood.
This resonates with me in a big way! Back in 2008, when I was first diagnosed with an incurable ( but manageable 🤔) form of Non Hodgkins Lymphoma I was told that 1.) The disease could kill me 2.)The treatment could kill me, PERIOD! I was like WTF, WHAT kind of choice was it to have to try to figure out WHICH ONE was the lessor of two evils?! Of course choosing the one that at least gave me the chance to live was the one I had to choose. That choice did not come without a price though. The treatment basically destroyed my immune system, so much so that I developed an acquired immune deficiency that requires I receive replacement immunoglobulin (IVIG) every 4 weeks for the rest of my life. When I relapsed last fall, they told me they would be treating me with the same drug. As they put it, “since it worked the first time, and the “damage” it is known to possibly cause is done, that risk no longer exists.” Which seems so messed up to me, but here I am, now in the maintenance phase with that very drug. Ultimately, as patients we have to be our own advocates, difficult as it is at times. No one else has the right to tell us how we should be “doing” cancer.
Hi Deb - thanks for your comment. It's interesting to hear your talk as a person who has a different form of blood cancer and your experience of complex decisions. I find self-advocacy hard, especially when feeling ill or low. I have to be feeling strong to do this especially when things happen in the moment and to be alert enough to notice and assertive enough to say something and brave enough to accept the consequences of raising the matter.
I hear you about how hard it is to advocate for ourselves when we are feeling so ill. That first year was by far the worst and one that I would never wish on anyone nor have to go through again. This time around wasn’t as bad, though it did have some moments. Some of it is that we as patients are armed with more knowledge about our diagnosis, and we know how to push back better.
Agreed and knowing how the system works! Agreed - first bout of chemo was tough but after that I felt much more prepared. Now my problem is that I can't really remember much about what happens as an inpatient as I've had very few overnight stays in the last 18 months. My biggest stays were during a Covid lockdown so things were different then.
What a deeply thoughtful post and thread....feeling very touched by the stories. Support and non judgement seem to be two of the most important aspects in thus decision making process. When time is of the essence deep listening also feels like an essential. I felt this way in mums last few months, of anxiety and panic attacks. She had suicidal thoughts about being alone and we, her children, were thinking about her having to go into a home .....even though we felt it would have been the death of her. Another very complex situation....and even though we all picked together to support and listen...it was so hard to stay out of judgment.
I am in constant awe of your courage and strength juliet ❤️
Thanks Jon. I echo your comments about non-judgement and also wanting to make decisions on behalf of someone else - who may not agree. We found with our mum she was always very keen pre-dementia for us to put her in a care home if the need arose. Yet in her years with dementia she really didn't want to go into a care home. So it was such a hard judgement call especially for my step-dad. It's another good example of the complexities of decisions we make and the risks we take.
Making decisions of magnitude is alway difficult/complex. We make them for many, often very personal reasons. I can't begin to imagine how difficult making such a huge decision, in only 9 days, was for you. Judgement is not a helpful reaction at all. I see a very brave, pithy and very determined woman. Ron put it so well i am blatantly plagerising.. sending love, appreciation of who you are, and the story you share xxx
Aw thanks Mairi - it was a big decision to have to make at speed but so many people do have big decisions aside from cancer treatment. Going through any sort of adversity is tough and life decisions - well we all have these. What is interesting is the decision-making around a stem cell transplant, listening to other people's stories it's evident that no-one takes this lightly and the reasons for having or not having one are often very specific to each individual.
Deep, hard won insight. Great examples of decisions that reflect context and our values as decision-makers. And so important to pause the process, to slow things down to consider rather than to react when we have time for discernment, to understand the risks in the shades of gray! Sending love and appreciation for who you are, the story you share.
Thanks Ron - what also came to me was that medical professionals may also be in a similar position in that some of their decisions will have to be around risks and benefits too. So there is another dimension/context to this in a cancer context.
I’ve nothing to add to this except admiration for your courage and the knowledge that no one knows how they will act in these situations until they are facing us. Much love ❤️
Thanks Ruth. I think you are right. What is incredibly is that when faced with adversity, I find that most of the time, I can manage. There's some good black and white decisions too, e.g. no cannula = no blood transfusion = no energy. Thus no matter how much I hate having a cannula inserted, my sleeves are rolled up and I just accept it as an unpleasant part of the process. Admittedly when it takes a few goes to get the needle in, I do get increasingly weepy.
😣
A thoughtful story today, certainly. Juliet, you and I both know the fear and numbness of mind that comes while making such a decision. I was not as pressed for time, but I did consider both possibilities. I talked at length with my husband and doctors about my decision. It was a harrowing time. That I would consider not having SCT was heartbreaking for Rhea. But I had come from the other side of months of chemo and illness. I didn’t necessarily want to keep on. When doctors asked me about suicidal thoughts, I was incredulous that they had to ask. Who would not have those thoughts? In the end, I did have the SCT, after one cancellation and a setback involving yet more surgery for another form of cancer. (Thankfully benign). Recovery, as you say, was almost two years. And I’ll never be the same, but then none of us are the same after this, are we? In the end, I did it for my husband, not for me. And I hope I never have to make a choice like that again.
Hi Susan, your response is a blog post in itself. Thanks so much for commenting. When I look back although the STC decision one of my dithers was "suicidal thoughts" - in that was a decision to say "no" an act of suicide? Interestingly none of my healthcare team suggested this. In the end, I decided it was a positive "Yes" to a better quality of life, albeit probably a shorter one rather than "No" to life itself. All my family were amazing throughout this time, especially my husband and son. My sisters reassured me that "Everything would be alright" if I died. The stem cell specialist was lovely but the conversation did get awkward as it started with him stating I had a 50% chance of a successful transplant. By the end of the conversation it was clear that the actual reality was a small fraction of this likelihood.