Really is interesting. So glad you’re on the mend now Rammie, your heart is doing so well! Quite the impressive recovery. Hadn’t heard of that functionality percentage, although cardiology must have advanced since my heart attack in 2012.
It’s weird, since diagnosis with Polycythaemia vera (PV) I’ve been fixated by the idea that it’s somehow related to my heart attack, which was caused by a blood clot. The hospital records don’t really say much, but they do have the name of the cardiologist who saved my life, so I might contact him with this additional diagnosis in case it interests him in his field of work.
What you said about dreading another heart problem really resonates with me. For years I carried around one of those little TNT spray bottles in case of cardiac emergencies… It felt like a slight comfort. When my anxiety kicks in it can remind me of a certain chest sensation you may be familiar with and then it can cycle into panic that another heart attack is coming if I don’t do all my zen breathing stuff. But something the paramedic said that is also helpful for reducing anxiety, at least for me due to it being a science fact, is that if you’re having a heart attack your pupils shrink really small, like pinpricks. So if anxiety is making me wonder if it’s actually my heart I’ll check in a reflection that my pupils are normal. Usually helps reduce anxiety a bit.
I mean, you’re taking medicines now and seeing doctors regularly so I imagine there’s less risk of things building up to one again. Having lots more tests means more eyes (or AIs?!) noticing any worrying signs. Or so I’d hope!
Interesting too about ruxolitinib being used as a second-line medicine there. The doctor at the conference said it’s much the same here, or at least in California. Other US states have varying cancer treatment accessibility and costs. He said something about how hydroxyurea is typically the first choice often due to there being many more studies done of its efficacy, plus it’s older than ruxolitinib so is more familiar to doctors. But hydroxyurea’s side effects are still worrying. I’d rather take ruxolitinib from what research I’ve read and heard.
Because of my age, I initially started on interferon and was doing really well on it.
But the heart attacks completely spooked my haematologist and moved me on to hydroxy, after much defiance from myself with it being chemo.
Interferon has shown more effective response for younger patients but there are no long time lasting/effects to base it on.
With this rare cancer I think patients will always be test mice for the next generation which is why I reckon it’s best to research all avenues and go with gut when deciding what’s best for you
Ha indeed I do feel something like a test subject at times! All the more reason for us to become educated as to the risks and benefits of our specific treatments. But yes it also has to feel right so we’ll engage in our own treatments. If only it wasn’t all so tiring!
Hi @Rammie18@Duncan@Jimbo165 I also have heart problems and want to join your club …I think ???
An enlarged heart
Irregular heart beat (had since about 5 yrs after diagnosis)
A heart murmur
Unknown blip on ECG’s
Leaking aortic valve
Chronic lymphocytic leukaemia (CLL) diagnosed 20 yrs ago always been on watch and wait
Good morning @Erica, don’t forget your "sluffy hole in your head too!
I think that my heart is too big for my wallet, as well as too caring for my own good as I constantly go “above and beyond” to help others still. I blame it on my parents for the way they dragged me up (mostly kicking and screaming on my part!)
Touch wood, and fingers crossed, I don’t have an enlarged heart as of yet, probably because there is insufficient room in my abdomen owing to my enlarged liver and spleen!
Life is grand!
Erica, take care, stay safe, keep on smiling and be kind to yourself.
Yes, my good old Friar Tuck/Worsel Gummidge head.@Jimbo165
Life is grand, I have just come back after my lovely daily walk and the river sure is high out there and I am a trifle muddy!!!
Yes, my upbringing has a lot to answer for too.
Oh, I am smiling and being kind to myself don’t you worry and I hope you are doing the same
How I look at it and not to feed our ego, but posting on here is giving people real patient information.
All it takes is the power of posting and asking and with technology today it can help so many people beyond comprehension.
I honestly don’t see what the amazing people on this forum do on other websites/forum in the way that people correspond with empathy, support, guidance and time.
@Duncan or Blood Cancer UK’ s foreign correspondent @Erica there has to be a badge for him somewhere
NHS targets are like military ones, look great on paper, then it meets the reality of humanity.
Seems the more they try to link things, the more things get messed up by paperwork
@Rammie18 Just as we are all grateful to a little lad called James Phipps surviving Edward Jenner’s test on smallpox. Imagine if he had tried that trick today
Something I’ve had to learn the hard way is that sometimes we need to let others tend to our hearts too, dear @Jimbo165, hard as it is to be looked after when we’re used to doing so for others…
It continues to be a pleasant surprise to me, and a joy, just how truly supportive this forum is. Totally agree with you @Rammie18, there’s so much empathy that I reckon the culture here has been formed around being kind and thoughtful. People can be really open and know there is someone who knows how it feels.
I’m a member of another one, in the US, and sadly I rarely use it as it’s a bit of a hollow experience compared to here, despite the greater number of members and potential for sharing experiences more widely. Feels more like people are on that forum to show off about their doctor so-and-so or whatever VIP treatment they’re getting. Perhaps it’s because the US is more like a bunch of nation states with very different healthcare options and laws, rather than one mostly cohesive country with one connected healthcare system
@Duncan, absolutely and I know that I should let others “in” but it is difficult to trust after suffering a “big” hurt, if you know what I mean. It is a form of self-defence in a way, to try to not get hurt again, but the downside to that can lead to a solitary life. Fortunately I have my daughters - biological/work and cartoon (thank you @clickinhistory) to keep me sane, relatively speaking at any rate.
I have to say, and I’m quietly convinced that I am not alone in this matter, I am a rubbish patient!
Know what you mean about targets and I think a sort of gradual dehumanisation of patients. We can become what feels like mere stats and goals and metrics.
Bet we all remember a favourite NHS doctor or healthcare professional who went above and beyond because they genuinely cared. Mine is the cardiologist who saved my life during my heart attack. He heard my concerns about privacy and was so calm and seemed to be really rooting for me to pull through. I’ll never forget that level of care, even in a crisis.
I happened to grow up around the NHS as a few family members worked in various roles my entire life. Relatedly, I went on to train and work in the NHS too, and I experienced its decline both as a “service user” and professional. Don’t want to get political but it’s not the NHS or its various Trusts who have been cutting its funding and pushing for privatisation. So gutting to see. It’s actually one of the reasons I left the UK as my entire occupation had been removed!
I’ll look forward to my fancy ID!