I’m not sure whether the people I’m dealing with have my best interests at heart.
The specialist has been trying to get me on hydoxy carbamide for the last year. After looking into it, I’ve decided to keep away from it as long as i can, i understand the risks. When i asked about possible side effects, i was told, due to my age(55) that i wouldn’t experience any side effects whatsoever. I asked him whether he could guarantee me 100% that i wouldn’t get any side effects, he said 100% !!! Didn’t even say about the highly elevated risk of skin cancer if i go out in the sun.
After a recent venesection, my iron levels are at 8, the doctor has just prescribed me 5 weeks worth of iron tablets 3 times a day. She encouraged me take them with orange juice and to eat dark green leafy vegetables. I was diagnosed 5 years ago. What is going on ?
Hi @KME and a big welcome to the forum.
It’s really hard if you haven’t got trust in your medical team. It makes your journey that little bit harder.
I can’t help with the medical questions but have copies in the @BloodCancerUK_Nurses who may be able to advise you further.
I wonder if it’s worth considering a second opinion if you are not happy? It’s an option if you are not happy with the treatment you are receiving.
I hope others will be able to share there experiences. Have you got an appointment soon where you can ask all of your questions?
Please take care of yourself and keep us updated 
The nurses are sound, they genuinely looking out for me. Thanks for your concern
Hi @KME a great big welcome to our forum.
It is a dilemma isn’t it.
@Nichola75 has given you a great response.
I find medical language so scary.
What about asking to have a private chat with one of your nurses that is sound and will be honest with you. and you can tell them exactly how you are feeling and your fears, questions and practicalities. They will also know you and your medical history.
I find the unknown so fearful and my thoughts and feelings go into overdrive.
Please do let us know how you get on and be very kind and look after yourself
Good Morning @KME,
Thank you for reaching out over the forum and sharing a little about your recent experiences.
I am sorry you are having such a difficult time, it can be really hard when you do not feel listened too.
As @Nichola75 has mention you are well within your right to ask for a second opinion.
Can I ask if you have a ‘Clinical Nurse Specialist’, it might be an idea to find out who they are at your local hospital and have a chat with them. Also the nurses that you mention who are looking out for you, perhaps you could have a chat with one of them around your concerns?
You might find it useful to have a chat with one of us over the phone, if you would like to do this please do call us on 0808 2080 888 and we can talk a little about your condition but also how best to manage your care.
Best wishes,
Heidi J (Support Services Nurse)
Hiya Heidi,
Thanks for your time. Whenever I’ve spoken to a nurse, they’ve told me i need to speak to my specialist about any medical decisions. My specialist guaranteed me 100% that I’d get no side effects if i started taking hydroxy carbamide. He didn’t even mention about the risk of skin cancer from exposure to the sun whilst on the tablets. I don’t think i can trust him, he just wants me out the way. I don’t want to start rocking the boat by asking for second opinions, people have very fragile ego’s and i don’t to labelled as an awkward patient.
I did ask at the doctors about the iron tablets, the doctor has just phoned me whilst I’m typing this, and told me to stop taking the tablets
After one blood test, they told me no further action required everything was sound. I spent a week trying to find out what my haematocrit was, nobody would tell me or get back to me. After getting quite irate they eventually told me, it was 0.61. Now what would have happened if I’d left it another 3 months before another blood test like they suggested ? I had to have 4 venesections in 4 weeks after that. I’m getting seriously disillusioned with all this, i certainly don’t trust
my specialist.
I’ve already changed specialist once due to the last one trying to put me on hydroxy carbamide instead of doing venesections.
The only thing I’ve got going for me is that despite all this, I’m still strong in the head, I’m not folding no matter what anyone does or says.
The NHS Constitution for England - GOV.UK.
4. The patient will be at the heart of everything the NHS does
It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged in accessing health services in the area they reside. Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment. The NHS will actively encourage feedback from the public, patients and staff, welcome it and use it to improve its services.
You can make a concern using PALS
You are not allowed to be discriminated against when making a complaint or concern about consultants and it should never affect your care.
You are recognised as disabled by law with a cancer diagnosis
Hey there @KME, welcome to the forum! I’m really sorry to read of the concerns you have since diagnosis. If I may be so bold, I’d say it’s to be expected to feel strongly about all this—it would be stranger not to feel anxiety after a blood cancer diagnosis.
You don’t mention what you were diagnosed with but after I found out I had Polycythaemia vera (PV) last year this forum has been really helpful, especially finding others here with the same and similar diagnoses. Maybe have a look for others on here with the same diagnosis to get an idea of how their treatments are going.
But I can see that the specialists you’ve dealt with are not helping allay your understandable worries and in fact are not giving you accurate information.
I’ve been taking daily hydroxyurea since diagnosis and originally fortnightly phlebotomy which is now every month or so. While I’ve had horrible fatigue since starting hydroxyurea, and changes to skin photosensitivity, these are minimal side effects when considering my blood cancer is now being managed. My blood cell numbers have settled down and I’ve been able to resume a semblance of normality.
While I understood some risks of taking hydroxyurea like you, I’ve felt more at ease with this treatment as it’s so non-invasive in the whole scheme of cancer treatments. The science and decades of statistics about long-term use of hydroxyurea show that kids who took it for sickle cell don’t have heightened numbers of cancers.
I wonder, if your specialist had given you more accurate information about your diagnosis and treatments, would it feel easier to trust their judgement? I had a terrible haematologist initially who underplayed all sorts of stuff and in the end he got some information wrong and I knew I’d never be able to trust him again, especially so soon after diagnosis when my feelings were all over the place.
I’d say @2DB’s suggestion about contacting PALS might help you feel supported right now at this worrying time.
You’ll also want to query the iron supplementation as iron obviously encourages blood production and you may have a blood cancer that needs less of that. I was told not to add extra iron into my diet.
If the specialist who gave you incorrect information is going to be your main doctor going forward and you don’t think you want their treatment then you can ask to be referred to someone else. It may take some hassle and time but in my case it was worth it.
One last thing but please try to minimise your stress. Stress is exhausting and worsens the symptoms of many blood cancers. It can also exhaust you emotionally of course and you need all the energy you can right now!
Do you have someone who can accompany you to appointments to help take notes or advocate for you in these stressful times?
Keep us posted about how it goes, @KME!
Ah mate, thanks for that, you’re a good man.
It is Polycythaemia vera (PV) I’ve got but bizarrely enough, since I’ve been diagnosed(5 years ago), I’ve been strong mentally. Used to suffer a lot from depression but that hasn’t touched me since I’ve been diagnosed. I’m a single lad with no kids so i think that helps, it doesn’t concern me too much if things turn bad, no point in stressing over something you can’t change. What i do believe has made a big difference, is that somehow I’ve kept my head on an even keel. Never give in, never surrender.
I’m not going to take the hydoxy carbamide, i think the benefits from the sun outweighs the risks from the hydroxy, that’s just me though.
I do get a bit pissed off when they make stupid mistakes that could have serious repurcussions for me, but I’m feeling a lot more philosophical about it all, I’ve just got to keep any eye on them.
Thanks for your kind words mate, they’ve strengthened my resolve💪
Thanks Erica,
I think I’ve been trying to keep everything locked down mentally, not ashamed to say that reading all the nice messages has made me cry. I like that though, it’s strengthened my resolve to do the things i need to do to improve my situation. Thankyou.
Thanks for your reply @KME
Just to share my experiences with skin cancer
I have had Chronic lymphocytic leukaemia (CLL) for 20 yrs and have never had any treatment.
However 8 yrs ago I got skin cancer on the top of my head, I had an op and a skin graft from my leg
4 yrs ago it reoccurred and I had a further op and also above my lip which turned out to be pre cancerous.
I do go out in the sun, I am a great walker, but I cover up and I apply high factor sun screen and a snazzy hat.
Look after yourself and please do keep posting
Ah so you’re part of the Polycythaemia vera (PV) posse too. Not a club I’d ever choose to join, of course! Sorry that you live with it too, but it sounds like you’ve been tolerating it well. It is quite the existential juggle! Sorry too about that depression—glad to hear it’s in the past! Depression sucks, anxiety too.
I really like your resolve and attitude, @KME. I think with these chronic blood cancers that may remain relatively tolerable for years that we’re faced with an interesting choice about how to respond. I’m trying to let stuff go more than in the before times, and not to engage with pointlessly stressful situations much, so it’s taking a lot of adapting. Work in progress and still early days and all that.
Do keep in mind that you can get second opinions and support with PALS should you want it, and change GPs if they’re getting stuff wrong. Please query your iron prescription, I was told it’s a big no-no as it can increase your blood production, which we really don’t want with Polycythaemia vera (PV).
Glad to read you’re out there living with Polycythaemia vera (PV) a few years after diagnosis and doing well. Long may that last.
Hiya mate,
I do have a clinical specialist nurse, but ridiculously enough, i don’t like to bother her. I’m going to give her a call, get some help i think.
I suppose I’ve got used to dealing with things on my own over the years, when things have got tough it’s always been a case of batten down the hatches and just crack on. I think I’ve always felt more comfortable struggling on my own rather than accepting or asking for any help. Time to change all that i think, make things a bit easier for myself.
Polycythaemia vera (PV) crew in da house😄
I did query the iron tablets, doctor phoned me straight back and told me stop. She must have googled it.
I’m starting a youtube channel in a few weeks, it’s going to be like a excercise challenge kind of thing for people like ourselves. It’s to encourage excercise and to show people that just because you’ve been diagnosed with the nonsense, it doesn’t mean everything is finished. It’s fount to be like press ups, abs wheel pull ups minds off things. I’ve tested a couple of the excercises out on my mates 20 year old lad who goes the gym a lot, and he can’t do them, so you never now it might get a bit of traction. It would be nice to be able to earn a bit of dollar without having to get back on site.
Do you excercise bud ?
Ah mate, doesn’t sound like you’re having the best of times. You still sound optimistic though mate, i love that 
i think that’s the most important thing. It’s been clinically proven that when your down, it weakens your immune system, so we got to stay positive to keep the immune system as strong as possible.
Stay strong mate 
Ha yes we are quite the crew! Who knew when I first found this forum nearly a year ago that I’d also find so many other lovely people living with Polycythaemia vera (PV) and its evil siblings?! Glad we’re all here. It goes without saying that I wish none of us needed to be.
I second your comments about how feeling down can affect our energy. Stress really wipes me out these days. Of course remaining positive is easier said than done, and sometimes it’s good to work through the not-so positive feelings too or else they’ll slink off to another part of our psyches, waiting to emerge at inopportune moments! But being mindful of our moods can nip all that stress in the bud, I find. I have therapy too which is always super helpful, even on days when I can’t be bothered.
Wouldn’t say I exercise but I’ve always been active, mostly doing long remote hikes and occasional canoeing. I love the sound of your YouTube channel, what a great idea. I’m too introverted to put myself out there so publicly, but I have no doubt you’ll inspire others! Will you share it here?
These days I’m more of a scenic hiker and living room yogi so I’d say I’m fit and getting stretchier! Managed some postures yesterday that I’ve never been bendy enough for before so I must be doing more yoga than I thought!
Yeah, you sound like you’re doing OK mate, was looking at yoga myself.
I’ll share as soon as I do it Dunc👍
Hi @KME I am a Pilates and walker girl!!!
Excellent mate, we need all the goodness from excercise to keep our heads straight. Good to hear👍
I’m a keep fit, yoga and mindfullness with a dash of meditation thrown in kind of person 
To try and keep stress at bay
I’m not successful everyday