Appointments with consultant

**Hi all

At my last telephone appointment I was told that there would not be anymore telephone appointments. Instead I would be sent a blood test form and a date to have it taken would be communicated to me. Then I would receive a copy of a letter that would be sent to my GP. Is this really acceptable? Have I just become a vial of blood. Does nobody care about me as a whole, human being? Does anybody want to know how fragile I have become mentally and how a chest infection makes me feel? I feel that I am keeping things together- just! Losing all contact with a consultant makes me feel, isolated, abandoned to cope with my Polycythaemia vera (PV) alone. The NHS is rapidly losing any respect I ever had for it, it seems to be distancing itself from its patients as much as possible. Nurses are qualified in using a computer but don’t have the first idea how to communicate with real flesh and blood person.

Is there anything we can do to halt this so called progress of distancing doctors from their patients? Not the best of starts to 2023.



Hi @Marylin.
I understand how you feel. My appointments haven’t been stopped but the time between them has been extended from every three months to every six months. I’m already worrying in case this is extended at my next appointment in January.
I have read that quite often - after a time - things can be managed by your GP. I’m sure @BloodCancerUK_Nurses will be able to give us more info on this.
Whether this is the case or not I really do understand how you are feeling. I try to tell myself that this is a positive and my consultant always says it will be me who will know before him if my lymphoma has returned. He has also said that the referral back would be immediate if I had concerns. For me, this is easier because I still see him face to face. However, I do dread that day coming as the appointments reassure me that I’m not missing anything. I’m sure my anxiety will be sky high!
Do you have a clinical nurse you could speak to to ask the questions you need. This may put your mind at rest a little?


Oh @Marylin and @Nichola75 I really do know how you must be feeling and it is not a nice feeling.
I was one of those that was referred back by my haematologist to my GP for monitoring about 5 yrs ago.
I went through so many different thoughts and emotions of abandonment, loss, fear, isolation, just a number, really tearful. etc. I didn’t want to tell anyone, I felt ashamed, a fraud, I felt I shouldn’t be on the forum, it was horrible
Also for another condition I have I was told I would get an appointment in 3 mths which is Jan, it has come through for next Sept instead.
I think you are right my thoughts and emotions have been on high alert since my diagnosis which does not help.
I think all your thoughts and emotions are very natural.
Look after and be kind to yourself


Dear @Marylin
I am so very sorry to hear how upset you are about your ongoing appointments. May I ask whether you are on any treatment for your Polycythaemia vera (PV) and also how often you were previously being reviewed by Haematology?
I very much appreciate that you feel abandoned. Like @Nichola75 said, do you have a Clinical Nurse Specialist that you could call in Haematology as they may be able to support you still?
The importance of communicating any changes in your health should still be a priority so I would suggest talking to your GP about this too. This should enable you to feel confident that you concerns are being heard.
If you would like to talk this through please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards


Hi Gemma
I am on two 500mg Hydroxycarbamide capsules a day. Haematology order a blood test every three months. I do have a Nurse Specialist contact who is very supportive, but she is not a consultant. I seem to have been on antibiotics since Christmas for a chest infection. I am trying to get a face to face appointment with my GP next week. My hair has broken off about an inch from the root, partly due to the Hydroxycarbamide and also to being prescribed Atorvastatin which did not suit me at all. My so called benign tremor is becoming a real uncontrollable nuisance, cannot drink my Sherry without spilling it or eat without food falling off my fork, cannot carry a cup of tea without spilling it. Like the world theses days, I seem to be falling apart mentally and physically.

My husband and I decided a lunch out today would do us a power of good, however the people on the next table were having a loud debate about euthanasia. It made me smile if nothing else, so much for socialising doing us good. I don’t seem to have reached that stage yet, I am waiting to see the daffs, Iris and tulips I have planted last autumn, flower. That is if the heavy rain we are experiencing doesn’t wash them away.

Life is painful, depressing at times, uncomfortable and a battle but it is still worth living even if I have to drink Sherry out of a plastic cup. Cheers. Marylin


Dear @Marylin
Thank you for replying and I am very pleased that managed to dine out with your husband, even if the conversation next to you was not ideal.
Whilst your CNS is not a Consultant they can discuss your case, symptoms, side effects and concerns with the Consultant. I would encourage you to still do this and as your monitoring continues.
I do agree that a face to face with your GP sounds ideal to discuss the issues around your benign tremor and the Atorvastatin. I would also mention how you are feeling to the GP as well.
Please do call us here if you would like to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards

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Hi @Marylin I have found that my Clinical Nurse Specialist is very knowledgeable, approachable and refers back to the consultant if need be.
You chest infection sounds really nasty and I expect it must be very wearing, I hope you get a GP appointment for next week, don’t forget to try being ‘pleasantly assertive’ and stress your blood cancer, how you are feeling and length and severity of your chest infection and hair loss etc.
How are you coping with the hair loss?
As you might know I have had 2 skin cancer ops on the top of my head so look a mixture of Friar Tuck and Worsel Gummidge and being height challenged everyone looks down on my head.
If I thought about it I would never leave home, it is so visual for me and everyone else.
As for not being able to drink your sherry without spilling it, that really is the final straw.
I am glad that although you are falling aport mentally you have not lost your brilliant sense of humour.
I remember you planting all your flowers last autumn, try not to let them drown now.
Please let us know how your get on and ‘Cheers’ to you too @Marylin

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Hi Erica

I am not sure I am coping with my hair loss. There is nothing I can do about it. I have always prided myself on my thick hair which had mostly retained it’s dark colour with a few streaks of grey even though I am 79. Owever pride comes before a fall! I have taken Hydroxycarbamide for nearly two years so am not sure what has caused it to suddenly become so brittle and dead. I am inclined to blame the Atorvastatin which seemed to poison me. My scalp is still covered but at the nape of my neck it has all broken off although the sides remain. I haven’t been able to go to my hairdresser because of this wretched chest infection. There is new growth of about an inch and a half so it looks as if it is growing again. The only steps I have taken is to order a navy felt fedora hat in the hopes of achieving some sort of cover up.

I have spent today trying to transfer money into an Allpay account which Cornwall Council insist I open as they will contribute Towards the cost of my carer. My bank accuse me of being scammed or laundering money and won’t let me do it. This has been going on since September, I am losing the will to proceed and increasingly want to tell Cornwall Council where to put their meagre contribution .

I have managed to make an appointment to attend theApple store in Exeter so that they can show me how to make my iPhone and iPad more accessible, because my tremor is increasing. I wonder it this will go smoothly it’s on Friday. Fingers crossed. Marylin

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Oh @Marylin A navy felt fedora sounds exactly the way to go to me, although, in this weather, I am sporting a navy wooly hat with a bobble on the top, actually from Cornwall, as my generous sister lives there.
As for anything technical I am the last person to be of any assistance !!!
If you can actually find a bank personally I would ask them.
Good luck with your trip to Exeter, please report back.
Things get all too much for me too.
Look after yourself

Hi @Marylin,

I also have my 5 year review coming up! My consultant says this is my last blood test and telephone consultation.

Over the last 5 years (after being diagnosed in May 2018 with Acute promyelocytic leukaemia (APML), i went from actually having to visit the hospital every week to get my Hickman Line flushed and cleaned, to every 3 months of bone marrow biopsies and blood tests for 3 years, then down to blood tests every 6 months for the last 2 years.

I really liked my oncology nurses (chief handholders for my hyperventilation during blood tests and BMB). But i feel like i am just getting dropped off by my consultant.

I have really bad anxiety, which has been made worse by the seizure i had in Sept 2022 (which is likely to be as a result of the brain damage caused by the TIA, caused by the APML) so now i can’t drive til at least Sept 2023.

But not having the 6 monthly reassurance the i am still not cancerous is a bit scary…


Hi @Purplepixie a great big welcome, I am glad that you have posted.
When you say that you feel like you are just getting dropped off by your consultant I know just how you feel as 5 yrs ago my haematologist did the same to me.
Actually he referred me back to my GP for regular blood tests and monitoring, with the proviso if anything went amis I would get fast tracked back.
I felt a fraud, abandoned and tearful, could I still be part of this forum?
I bet you missed your oncology nurses, I had seen my GP nurses twice a week for many months for something else and we were all in tears when my visits ended.
You have had 5 yrs of hospital visits I think you are entitled to your feelings.
Perhaps ask your consultant if you can still have regular blood tests for peace of mind.
Please let us know how it goes.
Be kind to yourself

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Hi @Erica thanks for responding. Will see what my consultant says at my next appointment. Might email my oncology nurses before then. Hopefully will get easier… Will keep you posted

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Hi Purplepixie
Thankyou for empathising with me, i to suffer with anxiety, which is a pain as I seem to have to plan out to the minutest details every outing/event etc. if I can’t plan the day I seem to find it exhausting.
My daughter took me to an Apple store to have some help with accessing my iPad and iPhone. They were most helpful, we were tutored for an hour and it was all free. Apple do not charge for assistance, you must book beforehand, you can either have individual o4 group tuition al free.

My husband and I did gat a face to ace appointment with our GP, my husband has my chest infection and m8 e has Developed into bronchitis. My GP said the consultant would have to prescribe any dosage change of Hydroxycarbamide. Can I be bothered? No.


Oh @Marylin, some good news with your iPad and iPhone, but you and your husband must be really struggling health wise.
I am really sorry to hear you are still suffering with anxiety.
I find that since my diagnosis I feel so out of control of my blood cancer, my future and anything medical that I really try and control other parts of my life.
As soon as I get ill everything gets all too much for me and I cannot be bothered.
Look after yourselves that is the main thing and be very kind to yourselves

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Hi @Marylin I have been thinking about you, how are you doing now?
Be kind to yourselves

Hi Erica
We are very gradually recovering but it is slow and requires effort. I admit to struggling to do anything, showering and dressing takes me an hour. I have to slather myself in double base cream before and after to avoid that burning itching. After that I am exhausted. I don’t know how much is old age and how much is due to Polycythaemia vera (PV) and all the pills I take. Like you I am struggling to control everything and fight the overwhelming anxiety. I have days when I am very tearful and unable to cope. Then the next day things seem improve a little. Physically the aches in my joints are almost unbearable one day then not too bad the next. I never know what is going to ache/hurt next.

How are you doing? It is difficult to live life when it is so unbelievably exhausting. Unless you experience the feeling you cannot understand that even making a cup of tea is beyond you.

Onwards and upwards. Marylin