The fact is that my Haematology team has abandon me. That is the reality.
I am just a number, one of many, suffering, crying for help, the have heard it all before. I don’t matter.
If after my cries for help by phone and email, in several occasions, have not been answered ,… what else am I to think?
I have tried to refer myself to a mental clinic. It is complicated, filling in forms, waiting for someone to get back to me. My GP could refer me, but it is impossible to get an appointment even on the phone…
I am at a loss, my friends. I do talk to the samaritans when I feel very close to the end of my tether. They listen… make some sympathy comments, even some suggestions…I am grateful that they are there…
but that doesn’t relive my nasty symptoms.
You are the best place to go to. You that understand and empathise and support, once again. Thank you and best wishes. xx
Dear @oleconchi
I am so sorry to hear that you have not managed to get the support you need.
Can you call the GP and request an emergency appointment as it feels like this would at least lead to some action for you?
I also wonder if you are not getting the support you need from your Haematology team that you may wish to consider a second opinion that you can request via your GP: Getting a second opinion | Macmillan Cancer Support
As always we are here if you need us and take care,
Gemma
Oh @oleconchi we are always here for you.
Unfortunately I often find I really have to persist and be ‘pleasantly assertive’ to get the service I need and deserve. I am getting better at it, but it is always when I feel the most stressed and fatigued and it can easily get all too much.
Yes, we are so lucky to have the Samaritans they are a marvellous service.
The main thing is you are not a number on here, you are our friend @oleconchi
I’m so sorry regarding your situation, @oleconchi. I hope your GP can help with getting another opinion and on the mental health front - you shouldn’t be suffering like this. X
Thank you soo very much for your replies and support.
There is a total lack of communication,
I went to have a blood test this morning, because I am expecting a telephone consultation from Guys hospital and they need to have the results of my test, so we can discuss on the phone if there is any need for another venesection, and the possibility of change of medication…etc.
The lovely nurse asked me what type of blood test she needed to do, I had a form with me, I just said is for the haematology hospital. She then looked on the screen and my record and informed me that I should have had a test for the renal function (kidneys I think) a month ago…no one told me or informed me about this, the hospital, the GP, …so how am I supposed to feel when I have lost all confidence with my medical team?
The nurse was wonderful this morning. She completed my blood test, took my blood pressure and gave me a bottle so that I can take a urine test and take it to my surgery in the morning.
Had it not been for her, I would have been left in the dark about my important renal test.
I could not refer myself to the mental help clinic. I tried and filled in a form, but I was told that I need to see my GP. I will try again tomorrow.
Thank you for listening, my friends. All the best. love to you all. xx
I’m glad the Samaritans are offering you support but it sounds like you might need longer term support?
Two places you could try for mental health support - Maggies Centres are brilliant if you’re near one of them or can call their helpline. If you’re lucky they might have a haematology suppprt group you could join Cancer support | Maggie's Also Leukaemia Care will fund up to 6 sessions. You still have to find someone with availability but they point you to organisations that can help you do that and tou will get help quicker than the GP. I found a counsellor who had worked as a cancer nurse so ‘got it’. Ann Ashley Leukaemia Counselling Fund - Leukaemia Care
Dear @oleconchi, I am sorry to hear about your problems. It’s very disconcerting when your care doesn’t seem to be being properly managed. I would advise that you contact PALS to make a complaint.
I contacted them as I experienced a lot of problems with my lymphoma nurse during my diagnosis. They were very effective in resolving the problems. I have a very responsive and caring lymphoma nurse now.
In respect of your mental health issue would you consider contacting NHS Talking Therapies (you won’t need a GP referral for this). They offer phone counselling for those suffering from anxiety and depression.
I’m sorry to hear about your situation with your haematology team.
I knew that I had cancer of a type in November 21 after the two blood clots and the platelet count of 1550 in 2019.
It took a professor in haematology to be the first to notice that I was not a healthy man.
The first appointment to inform me I had cancer was made a telephone appointment.
I have been unfortunately a victim of a lack of staff and a system that has been pushed to the limit.
I’m sure that the problem is not the team but possibly the system. I hope that you can find a way forward from your current situation and all I can offer is that you talk about this and do not feel like you are alone as you are not.
Wish you luck and your not alone with this failing system. X
Well this is what i would do…and i say this with respect to you and all the people trying to help you.
I would go to the Doctors…tell the receptionist that you are going nowhere until you see a Doctor even if its only for 5 mins
They will probably urge you to go to walk in…you refuse this and say to the receptionist what you are telling us.
The Doctor no doubt will turn it onto your Specialist/Haemotology and suggest ways of them sorting it.
This is when you need to tell your/ or any Doctor what you are going through and that in your opinion the level of carechas not been good enough
If this fails you ask to talk to the owner/or Manager of the business and say you want an official complaint form .
My feeling is this will promot a better response.
I have had my moments with Doctorss etc…we all do…i have plonked my botty on a chair in the cancer ward and waited for someone to get my Haemotology Nurse before.
Sometimes you have to do things that make you feel uncomfortable…dont have to be rude or nasty…but just stick to your guns and say face to face if this does not improve then i will be back again next week…and the week after.
The system is at bursting point…only people who push there way in a little bit will get extra care.
Will this ultimately help you…i dont know…i really hope so…what is the harm in trying
Please give it a go…if you have done it before then keep doing until someone listens…someone will eventually.
Thank you or your replies, advice and support.
I will try to see my GP first thing in the morning.
I am reluctant to make an official complain. Could it have repercussions on my future treatment?
Could it give me a black mark with my medical team? and make things even worse?
I know I sound like someone timid and no very brave…I do not like confrontation.
This is upsetting me more than I can say.
I know the NHS is under terrible pressure, I am trying to find excuses for the way I feel I have been abandoned. But it has been hard, very very hard to wait and wait for a call or a message when they know how I have been feeling and the severity of my symptoms. I have told them on messages by phone and by e-mails. Anyway. I see if I can get some sleep. I am so uptight and upset, I doubt I will.
Thank you so much. Best wishes to all of you. x
I still have not seen a doctor. Although I spoke to one GP last Friday. He gave me an appointment for next Friday 13th. {I am not superstitious). He said he wants to examine my skin…which confirms to me that they are not listening. There is nothing to see on the surface, the torment is deep under the skin…I have told them so many times… anyway I will of course keep the appointment and try to explain.
However yesterday I had the worse “attack” the stinging and burning went on all day, by evening time I was desperate, crying and in agony. My husband rang the Haematology department in Brighton. I could barely talk, I was in such a state of despair. I eventually calmed myself down and spoke to a nurse, bless him, he asked some questions and informed me that he will send an urgent email to my consultant, He advised me to try some paracetamol which I have never been advised to take, with that and more antihistamines , the torment almost stopped and I finally could get a good night sleep.
The symptoms are back and I am in agony again.
I hope I hear from my consultant tomorrow. If I don’t, I honestly don’t know what I am going to do.
Take care. Sending love to all of you. x
I feel for you so much - it sounds like the haematology nurse was supportive. I hope the consultant comes back to you soon - if not, perhaps a repeat call to the haematology dept is worth another shot? They have to start listening sometime - they HAVE to! In the meantime and for what it’s worth, you’re wished well and in my thoughts x
Oh @oleconchi your saga goes on and on.
I think at least one good nights sleep does help me however.
I hope the paracetamol and antihistamines continue to give you some relief in the short term and your GP appointment and the consultant come to fruition.
You also have the support of your family around you which is priceless.
I think you are doing absolutely brilliantly and especially for managing to calm yourself down.
We are all behind you and sending you lots of love xxx
Thank you. I read your comments and your support and it makes an enormous difference, it really does, just to know that there is someone there who understands and empathise.
I have been waiting by the phone all day…nothing. It is very sad to know that my cries for help have not been answered.
I would like to be able to change my haematology consultant, but I don’t quite know how to go about it or indeed if it possible to do so.
Thank you again, dear lovely supportive friends.
I will keep you posted if there are any new developments. xx
Hi. Do you not get your bloods taken at the clinic? My partner has ET and travels down from Norwich to Guys for his 3 monthly appointments. The bloods are taken when he goes in and are ready for seeing the doctor.
I did have a telephone call from my haematology nurse yesterday. My consultant NEVER calls me, or arranges to see me. She delegates talking to me to the nurse, who in turn, passes my messages to the Consultant. This makes me feel really sad. Why is that, I wonder? am I not worthy a telephone call. nor a face to face visit? My diagnosis , almost 2 years ago, was on the phone. I had to beg for a face to face consultation. She kept me waiting for well over 2 hours and when she saw me, I promise you, she did not look at me, she just looked a her computer and talk to me in medical terms that I did not understand. I was in shock and needed a little warmth , a little compassion, a little humanity…I got non of that. So I am very very sad. I don’t think that it is too much to ask for in the circumstances. I do wish I could change my consultant. IAnd I have decided to ask my GP when I see him next Friday, if it is possible to do that.
I also had a call from Guys hospital. They said that they will review my case and ring me back soon with perhaps alternative medication and help. r a face to face consultation with another Haematologist.
The stress of feeling abandoned by the people who are supposed to look after you, makes the symptoms worse, no doubt about it.
Again, my friends, thank you from the bottom of my heart, for your support and understanding.
Best wishes to all of you. xx
Just to assure you that is not just you. My partner has been seen by nurses, junior doctors and, once, by a senior hospital pharmacist. He attends Prof Harrison’s clinic and she is an expert in her field - MPNs.
Today I saw my GP. A new GP in my local surgery. For the first time in a very long time, I felt that I was listened to properly, and no while looking at a screen. I felt care, compassion and empathy coming from him. What a difference it makes…we discussed possible treatment, both for my physical symptoms as well as my emotional stress. He did not promise that the new medication will completely cured my itching and stinging, but he said there is a very good chance that it will. He is also going to refer me to a mental health support group. I have to agree with him that my emotions and my stress levels are so very high, that I have been feeling suicidal for some time because I have no hope.
So now, I have hope .
Until now, and for almost 2 years, all I have had have been faceless telephone conversations. And meetings with doctors and nurses that look at a screen and not really listen when you describe your symptoms and plead for help.
All I ask, as a patient is to be treated like a human being, with respect and with compassion. I feel that I got that today.
And you, this wonderful group that I am so lucky to have found, has help me more than I can say.
Your support, your understanding, it is invaluable . Thank you so much.
I will keep you informed about my new medication and how it helps. Fingers crossed.
Sending love and gratitude to all of you. xx