I feel like curling up in a ball and crying so I’ve come here instead. I have ET, tried Hydroxy but did not get on with it and when my consultant left it was agreed I could try Peg.
Well I’ve gone in 3 or 4 times to start and theres been a glitch and today, on my way to the hospital, I got a phone call to cancel. It will ‘allegedly’ finally happen on Friday.
I am passed around consultants and they all have different ideas, hence some of the delay, I have twice asked for a named consultant and been told no because they are still sharing patients.
I feel so flat now!! I am going to start a new treatment (???2 days before Christmas) its’ a special christmas this year and I feel like I’ll be unwell.
How do I ask to get referred to an MPN specialist and does anyone know if you need a specific reason?
Thanks, sorry to be a grump so near Christmas!
Oh gosh, you’ve had an awful few experiences there, and I’m not surprised you feel let down, frustrated and worried about it all. In your shoes, I’d also want to be referred to a more specialist practitioner too.
I’m not sure how you’d go about it, other than asking them directly. But I’m sure someone else with more knowledge will answer that for you soon. I just wanted to say: You’re not a grump - you have every right to feel how you do. And that I hope you msnage to have a wonderful Christmas, whatever else goes on.
All the best.
Hi @jojax you are certainly not a grump and I am not surprised that you feel flat and also like curling up in a ball plus so many other thoughts and emotions, you are entitled to and that is what we are here for.
When you say Grumpy I think of Snow White and the 7 Dwarves.
Yes, as @Fullofbeans says I believe you can just ask your medical team to be referred to an MPN specialist.
If a treatment plan is discussed perhaps you could ask for it to be deferred till after the New Year or after you have your second opinion.
Please let us know how you get on and be very kind to yourself
During my treatment my consultant went off with stress ( not my fault honestly). I had a series of doctors of varying experience. One was especially lovely and I asked her if she could request continuity with me and she did.
It is so hard keep explaining everything when you are fuzzy headed with low energy. I did not need a very specific expert which does not seem the case with you. I wish you a solution and a Happy Christmas.
Sorry to here this the hospitals are the same here i havent had a face to face consultation since covid i get my bloods done then they call with results i feel i need a face to face my wife thinks i should ask the next time but i dont like to ,i hope all goes well for you and you have good xmas Smiddy x
Good Afternoon @jojax
Thank you for posting your thoughts on the Forum. As the others have said, you are not being a grump. I am so sorry to hear of the cancellation and inconsistency with your appointments, it is completely understandable that you are feeling flat.
May I ask who told you that you can’t have a named Consultant; was it the Doctor or the person booking appointments? Although some Haematology teams do share patients, often they will try and accommodate reasonable requests to see the same Doctor if you explain that you have started treatment yet and that you would like some consistency as you are finding it difficult having to explain your symptoms etc, at every appointment.
You are well within your rights to seek a second opinion or ask to be referred to an MPN specialist, this may mean you have to go to another Trust, but either the Haematologist you are under can refer you or your GP. This is becoming more common place, so please don’t worry about asking, you aren’t going to offend anyone. You don’t need a reason, but you can just say you’d like a second opinion due to the conflicting information you are being given at their hospital.
If you do finally get an appointment tomorrow, please do discuss the start date of the treatment with them, as if you have manged until now without it, a few extra days until after Christmas shouldn’t matter.
Please do call the support line if you’d like to chat through any of this at any point.
I hope all goes well tomorrow, you manage to discuss continuity and treatments start dates and then you can enjoy your Christmas!
I have recently been made aware of the NHS Constitution
Well worth a read as a patient
I have requested to transfer to the hospital my consultant has moved too as I have lost confidence after 4 locum consultants in 5 months and I feel I cannot have a patient consultant relationship where I am now as the consultants don’t seem interested as they are not staying long enough
The consultant I asked to transfer me has written to my old consultant to ask if they will take me on
I’m waiting to hear back
Hi @SMIDDY I wonder what would be the worst that could happen by just asking for a face to face consultation.
Don’t forget my trick of being ‘pleasantly assertive’.
As I forget what I want to say I write down everything I want to say beforehand.
If you decide to go for it then please do let us know how you get on.
Look after yourself
Just wanted to say thinking of you @jojax hope your treatment went ok and that you can make the best of Christmas that you can . Do keep in touch and let us know how you are doing . All the very best .
Hi Erica this is Smiddys wife i so agree with you ,we will see what happens next month when he gets his bloods… …Smiddy asked me to answer your message… thank you i hope your well and have a lovely
Hi wife of @SMIDDY you and @SMIDDY are obviously such a good team and please you look after yourself as well as you look after @SMIDDY.
Who asks how you are, you are on this roller coaster too, be kind to yourself and look after yourselves
Hope all of your Christmas’s went well.
Ive read elsewhere if you ask for a second opinion you can split your care across an MPN specialist who may be further afield and your Haemotologist. That way you dont have to travel for every appointment.
Hope all goes well for you.
What is Peg? Interferon Alpha… Pegasus?I don’t think that you can ask only to see a named consultant except probably privately? However if you could you’d be making a rod for your own back as that consultant wouldn’t always be available so you’d have much longer gaps seeing them than other patients who see any consultant.
Hi everyone, thank you all so much for the replies and support. Well I finally had my injection on Friday and will be given a named consultant in the New Year. Luckily I wasn’t cooking so could be chilled over the holiday. I had a bad headache that went away with paracetamol and nausea but grazing is the way to go at Christmas in our house. 5 days later and I feel pretty good Not perfect but so much better than the on going fatigue and nausea with Hydroxy. I feel I can live well like this! I hope everyone had a great Christmas xx
I am under what is considered one of the best cancer hospitals. I see different faces like you all with different opinions, it is crazy. Does not work so if you eventually find an answer let me know.
Thinking of you and really hope it all works out for you
Hi @jojax I have been thinking about you and I wondered how you are doing now?
Look after yourself
I have decided to to have Acalabrutinib don’t think there is any right or wrong decision but hopefully I made the right one.
Do find this has been a difficult road and am pleased for places like this to come. Have been confused by the hospital.
Hope you continue to do well . Thank you
You are part of the forum family @Sandra so keep on joining us.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Why do you feel confused by your hospital?
Look after yourself
Hi Erica ,Thought I’d let you know i got a face to face for the 28th feb with hematology at the hospital
Iam haveing a terrible time with foot and finger infection … i didn’t have to ask when i told them on the phone conceltation what was going on they said they’d see me a bit sooner this time and to come to hospital,
Go to gp in the mean time i am so greatfull i am finally going to see specialist…as i said before i havent had a face to face since covid,thank you for your support. Smiddy
Please @SMIDDY sorry to hear about your foot and finger infections, please let us know how your face to face specialist appointment goes.
Take lots of care.