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Hello all. Not my usual post about Waitrose egg eating singing badger cubs!
When I last saw my onco in March he told me to start being realistic about my future. My wife who normally comes with me didn't on this occasion as she was poorly. I got home feeling more than a bit upset as I had gone to the consultation feeling optimistic.
I have got a few other related troubles so we were looking forward to seeing the onco with a number questions.
Now having received a text saying I am now having a telephone consultation I am gutted. Not a great word but that describes my feelings perfectly. I have always had the same consultant who understands me perfectly, if someone different phones it will be a waste of time.
I know nothing can be said or done to change this and I know everyone here will be nodding their heads in agreement.
I am good at pity fests having had plenty, there is something vaguely pleasurable about them.
I have not forgotten friends on here who are having horrific times, just having a moment!
I have followed all the posts from members having the same issue with sympathy but it has come home with a bang.
Please tell me off, I respond better to that than sympathy!
Hello Norberry, Umm please tell me off you say.
Norberry, what makes you think that your telephone consultation won’t be the same person that you would have seen in person ? I’m asking that as mine have been exactly who I would have seen, but with out the long journey, although I would really have loved to point to something instead of trying to describe something.
The first time I also forgot to press the speaker button on the phone so my husband could hear, husband not impressed. The second time I proudly remembered then thought I’d cut the consultant off by pressing the wrong button, I hadn’t but felt like an idiot for checking.
I hope your appointment goes as well as it would have done in person.
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I did have a different person once who told me to go off and count my blessings. My Mac nurse couldn't believe it and nor could the consultant when I next saw him. It appears she was a locum and was never asked back!
When you make your next appointment after seeing the consultant the receptionist can tell when each consultant is on and if you dont ask and insist on your onco you could get anybody. It is extra stressful.
I think it could be different in different hospitals but this is genuinely how it works in East Surrey ( dont know if I am allowed to say that but it's done now until admin deletes it)
And of course the technical bit at home will go wrong as you have experienced.
I was so looking forward to this one. Thanks KT.
Hello Norberry I am not going to tell you off:)I have these self pity days too.I just want to advice you to write down the questions or issues you have and you want to ask from the oncologist.I used to see always different doctors I am on a "war path" with all of them and trying to get transferred to different hospital.Now if I need help i call my GP who I know will help.I actually prefer phone calls because my oncology is in one of the virus hospitals and I dont want to sit there for 2 hours to waste my time for useless conversation.If I could I would name and shame that hospital I would.I am sorry you have your own problems didnt mean to whinge:)
I have had all telephone consultations except for one meeting with my Oncologist. It has always been the same Onc.& she was very easy to talk to over the phone.
Having now changed Oncologists I did have the first meeting face to face which is obviously much better,but I have received a letter stating that the next consultation on the 10 July will be by telephone.
Hopefully you will still get the same Consultant,fingers crossed.
Take care, Georgette x
Thanks for your advice Janet500. I will write down the questions but I just think without seeing the face it will be so different. It could be because I talk loudly and wave my arms about, obviously a waste of time on the phone. Best wishes for you current and future treatments.
Hello Georgette, I think I am put out because this was an important consultation especially with how things were left after the last one.
Unlike most people here I always discuss prognosis and I think that is where it becomes difficult when you can't see the person giving their opinion.
I think I have probably confused myself and everybody else now, I should go back to posting about badgers!
It is nice to get other peoples views, after all, this is what the forum is for.
I'm not quite sure what your oncologist means by saying you should be more realistic about your future. If you have everything sorted in terms of your admin, your family are aware and you are prepared to deal with things as they come along I can't see what else you would need to do. It is likely that the date has got a bit closer for all of us but I certainly don't spend a lot of time worrying about when it might happen. daloni posted something clever a while ago about how much intervention suggested whether it was days, weeks, months or years that you had left but I think I have years so being too smart for my own good I didn't bother to remember it. Perhaps daloni can remind me what it was.
I appreciate that telephone contacts are not as good as face to face. We pick up a lot from non verbal communication, much more than we might realise. Is it not possible for you to call the hospital back and check to make sure that it will be your oncologist and if not ask for an alternative appointment when they are available? If they can arrange this for face to face meetings I cannot see why they should not be able to do the same for telephone contacts.
I am like quite a few on here in that I have learnt to be quite pushy when it comes to getting what I want from the medical services. I would suggest that you do the same.
I enjoy a good pity fest as well and think that they are an essential part of our maintaining our equilibrium. Once I have had one I usually feel better for it. In the meantime you enjoy your picnics with the badgers. I understand that they can be good listeners although they are a bit black and white about things.
All the best,
I think I didn't give enough info about my last onco meeting. I bounced in saying I must be his star patient and was looking forward to plenty of future years. That's when he said I had had plenty of years and to be realistic about the amount of time remaining. That was fair enough because I do always ask about my current prognosis. It doesn't suit the onco, it doesnt suit my wife but that's how I like it. So probably serves me right for pestering him every three months!
I will make a few calls to try to ensure that I at least see him, he is probably trying his hardest to avoid me.
The badgers are of no listening value, once they have had their peanuts and egg they bugger off, not even looking back to wave.
Anyway, due to all the replies I do feel a bit more settled about the prospect.
Hi I had a video call yesterday--a friend with me , so we got 2 computers on for video also had phone ready--non of them worked.. Thank goodness he rang me back on the land line.
My Oncologist was my usual one, the prognosis wasn't good so trying to make decision weather to have another chemo to try to hold it . He suggested I try ERIBULIN (HALAVEN) has anyone been on this chemo I will try it but don't want to waste time being ill.
I've just seen quite a few had trouble posting a few days ago., was sorry as a few new people on and couldn't contact them.
Hi again Norberry, at the risk of sounding like I can never push any button correctly.
I thought about you waving your arms around and how you said that was pointless in a phone call. It reminded that the other day I must have pressed the audio description button on the telly that narrated, “they sat in the cafe with a quizzical look on their faces......” I then had to hunt for the controls to get it back to normal.
When there is a prolonged silence on the phone you can’t tell if they are thinking, writing points down, fallen asleep or been cut off ! Remembering to do the occasional verbal version of nodding your head or grunt of disapproval, may be required by both Dr and patient.
As I have a blood cancer I deal with a Haematologist. Before my cancer was diagnosed, I was having treatment for haemachromatosis which is the result of a hereditary mutated gene, there are 3 or 4, mine is H63D. I was with him about 5 years, we became friends. He used to show me his holiday photos, told me about his family and hobbies. He visited a horticultural show to see my entries, stuff like that. Then when the cancer was discovered I went to a different hospital where he had a clinic. He moved to a different hospital a couple of years later.
I then had a different Haematologist for a couple of years who everyone called Barbara, she told people to call her that. She was great, a bit of an eccentric lady, hugged me frequently if my blood wasn't good. Then the head Haematologist of the group of 4 decided that he wanted to move the blood cancer clinic to a Friday. He was the boss and unfortunately Barbara doesn't work on Fridays.
Next was a specialist nurse whose name I forget. I had her for a few months and I was neutropenic a couple of times with her and she was brilliant. Then the corona virus arrived and I have had 3 consultations with different people. I had bloods taken today for my next consultation this Friday coming.
Wish me luck. Give me someone for a few years please.
That would be us if we tried all that Zooming. We are only a few years off of 70, we still can't do decimal never mind telephone conferences!
Cannot help with the chemo, only had common one. Good luck with your choice.
You DO know exactly what I was getting at with my "clear as mud "attempts to explain myself concerning a telephone consultation.
Please reply with your expert clarity to everyone else on my behalf . I would be grateful.
This is your post Norberry, you just carry on, it’s often therapeutic. I’m just really need to look back and catch up on the badgers, we only get hedgehogs
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