This is a funny one, i wasn’t offered professional help but in hindsight my CNS was amazing and i spoke with her a lot in the initial weeks,
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Hi Louise, I have just said in another thread that I have heard so many people say and it was my experience that my consultant was interested with bloods and symptoms and my CNS was there for me emotionally and practically when I was in a fearful, shocked isolated bubble. At that stage I do not think I would have thought of asking for emotional support, but I wish it had been offered. How are you?
I was diagnosed 6 yrs ago and wasn’t initially given ant support. The shock triggered a bout of depression and I ended up off work that’s when I sought help from.my gp. I ended up getting help from Mind and found them to be helpful. I came off anti depressants after 6 months and was fine. I get a bit anxious now and again but find meditation… faith… yoga mindfullness all helpful.
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Also @Hmc63, you have also got us for support now. How are you feeling about lockdown?
I wasn’t offered any support when I was diagnosed in July 2018. I wasn’t even told that there was support. All I got was someone dumping a pile of leaflets printed off the web about the drugs I was being given and then left to get on with things by myself. I discovered the support mechanisms such as this forum only after all of my treatment had finished but I had to put in the work myself, nobody from the hospital or anywhere else was interested. Friends and family were kind but they weren’t the right kind of people to talk things over with.
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Hi @Franko, that must have been a very scary, isolated place for you when you were probably in shock as well.
I am no good at really taking in information from leaflets when I am in shock.
I found family and friends could not take my thoughts and feelings especially when I was newly diagnosed and just wanted to try and make me feel better in all ways.
I usually stock my local GP and hospital with leaflets, but obviously I have been unable to this year. I also make sure that they know all about Blood Cancer UK and that if anyone wants to know more or needs to talk that they have my contact details.
Perhaps that is something we can all do when the Covid situation subsides.
Hi All,
Reading this makes me wonder where the ‘joined up thinking’ is in the NHS?
Surely all centres should now have support in place.
Often the medical team are up to their eyeballs in the ‘medical care’ & cant be mental health experts too.
It’s time this was all part of the umbrella of care. Care for the family unit, individually, when they are ready to ask for help. They need to be signposted at the offset of diagnosis, that’s not necessarily when they feel the need.
Not brochures, but business cards with the contact details of the support available. Pop in the wallet or handbag or phone case for when they need It.
There really is no reason why this is being missed. The NHS are now so into ‘Well-being’ & ‘Surviving Cancer’!
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Hi @Corfu80, I think the NHS is getting there, it is so much better than it was when I was diagnosed 16 yrs ago. I also think there is a shift in society’s thinking.
If everyone ever stops firefighting and gets the resources they need perhaps that will make a difference.
Also I believe a diagnosis rarely just affects one person, but family, friends, colleagues and carers etc, so the continuing support package might need to include them as well and employers etc.
Although not on the mental health and support side I watched a documentary on a hospital last night that really made me think about the practical challenges and decisions that have to be made every day.
I’m ok so far… keeping busy …took the dog to the groomers today when managed to fill the van with petrol…gloved up masked up mind you…
Better news went for my blood tests at Drs …usual problem of not being able to get any blood out of me. I’d drunk Loads of water …eventually they managed. Bloomin hurt though…results came back today and my platelets have remained static at 607… actually dropped from 613… in medical terms static I know… my neutrophils have improved slightly not borderline anymore amazing how we get to understand this haemocrit levels ECT so that made me smile a bit more…
I know my platelets aren’t low but they’ve been static now for a year which is good for me…
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Hi @Hmc63, How come the dog can go to the groomers and we can’t get a haircut?!?
Your blood test results sound good to me.
I have found making sure I eat and have a hot drink just before getting my blood taken helps.
Mind you my answer to everything, and my downfall, is to eat!!
Take care and stay safe.
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