Thanks dawn. I had a blood cancer friend who’s family member was doing really well in remission and had almost forgot they had the disease ring me up having been really quite disturbed having watched this. She said they’d begun to feel life was back to normal and this shook her up.
Right now I’m not quite sure I want to watch it myself. It’s just a bit close to home. And if other members of the forum feel like that they definitely shouldn’t feel they must watch it. I may change my mind of course being a fickle chap.
It is of course the reality that blood cancer is a major killer but for many of us we live in periods of remission where we begin to be like “normal” people out there who forget they too are vulnerable and mortal.
To be honest while I was still talking to my friend I quickly texted someone else I know with a blood cancer and suggested they didn’t watch this program which I knew they’d recorded before explaining why to them later so they could make an informed choice.
It is a shame the program didn’t follow more people closely so they could emphasise the success stories more. As most of us may know this treatment is now fully approved for some blood cancers and there have been great successes with it. NICE has even funded it.
Getting the balance right is hard between strong hope due to the great advances, and a realistic understanding that this group of cancers considered together are still the third biggest cancer killer.
People who look like they are at the end of their own lives but are willing to try an experimental treatment with no guarantee of success offer all of us more hope for the future. I have a friend who was a young child with blood cancer more than twenty years ago and most of his friends from the ward didn’t make it, but thanks to the bravery of so many in trials the vast majority of those with the cancer he had now live. Things are changing for the better so fast for many of these dreadful diseases.
I just hope this program doesn’t lead anyone to be I correctly convinced that for them treatment is futile if it really isn’t. Since for so many of us treatment (including sometimes CAR-T) offers great hope.
In my own case my doctor told me that if I’d been as ill as I was with the markers I have just a few years ago I would not have survived for long. Now there are lots of treatments for my particular blood cancer and it looks like they are likely to be able to control but not cure it in me for many years. Treatment looks like it has worked well so far for me and for so many others. Although of course quality of life after treatment is sometimes a different matter.
And yet too many are still taken too soon. And so we somehow have to live with both realities as a blood cancer community.
Please don’t despair. Please don’t give up. Please make sure you understand your real situation before thinking “there’s no point being treated”.
If a doctor offers you treatment it can sometimes be good (if you want to know this, which not everyone does) to ask them what would happen without treatment, what it is they hope the treatment will do for you and how likely it is to work, and then of course what the side effects are.
Even for the most easily treated blood cancer there will be a risk and benefit balance for treatment. In other words all treatments have side effects some of which can be serious. But in many situations treatment offers a real hope of a much longer life than we would have without it.
And as someone who has had to ring the support line more than once myself, I do urge you if the program upset you in any way, pick up the phone and Dawn and her team will listen kindly, answer questions where they can, and point you to resources and solutions that will help you. Of course your NHS doctor or nurse is another great port of call particularly for questions about your own situation.
All too often when treatments are first trialled they are more dangerous and less likely to work because they are first used in patients in whom nothing else has worked and who are therefore already quite sick. And to be honest, Doctors do sometimes take a bit of time to learn how to refine treatments and how to use them in a way that minimises the risk in the future.
CAR-T is still experimental in some blood cancers, but thanks to the work of doctors and the willingness of patients like these to volunteer it is now an effective proven treatment in some other blood cancers already and NICE has agreed to fund it.
I do hope that this program won’t put you off being treated with it if that’s what your doctor has recommended. Though of course if it raises questions you definitely should ask your team to explain to you why they think the treatment you have been offered is the right treatment for you.
This journey really is a bumpy one sometimes. And for some this program will have felt like a bit of a big bump in the road. But thanks to friends, family, the NHS and groups like Bloodwise we don’t have to be on that journey all on our own.