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!
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
Pity fest is where I’m at. No reason, just one of those things. Every now and then I need to kick myself up the arse and enjoy today. Unlike you Norberry I need to be allowed to wallow as I’m too bloody minded, someone tell me what’s good for me and I’ll do the opposite. I just need to ensure I don’t let them linger too long. A good walk or some time in the allotment normally helps.
I know other people have bigger issues but our issues are real to us, it’s not a competition.
Telephone consultations are a nuisance, it’s sometimes difficult to hear everything, straining to ensure I don’t mishear you don’t ask questions that arise, I’ve always written questions beforehand to ensure I remember them all.
We do not have voice only, we have telemedicine. Im with you I like seeing my Onc and seeing facial reactions, and Ha I get to look at their house background. Much fun sometimes. Does NHS do any teleconferencing? We use Zoom here but there are many platforms. Curious. See what they do if you ask (insist) on a teleconference. TC is much better than just audio.
Also in TC you can make sure they are paying attention to you and not playing video games....
Cheers and go get them,
Hello MCLkid, thank you for your post, it was informative and made me laugh. I always find it strange that you are so far away yet on the forum it's like you are next door.
I think I wore myself out worrying when I received the text advising of the change but after reading everyone's kind replies I have decided as long as my blood figures are good I dont care!
I am sure I will get another three months so I will insist on a face to face then. Touch wood!
Hope you are doing ok.
I had bloods taken on Tuesday and had a telephone consultation yesterday, I'm still shielding and will be until 31st July.
So Mark phoned (didn't tell me his surname, just that he was a doctor at the cancer unit). Seems to be quite common over here, do they introduce themselves by their first names in GB? Only the consultants use surnames.
Well, my haemaglobin and neutrophils are seemingly healthy, the haemaglobin has not been at that level in 5 years but therein lies a problem. I normally attend the cancer unit every 8 weeks or occasionally a 12 week gap but I have been asked to "attend" in 3 weeks time and not to inject myself before speaking to the doctor again.
Strictly speaking, under the umbrella name of MDS, my blood cancer is refractory anaemia, refractory meaning unmanageable. So with such an increase in haemaglobin level, the doctor is concerned. He stressed that between now and then if I feel shivery, or I'm sweating a lot, I have to first of all ring the emergency number and then get myself up to hospital.
It's going to be an interesting 3 weeks!
At least the weather is a lot cooler, so I won't be drained of energy while I'm working in the garden
After 2 monthly telephone consultations which were really stilted and over in about 5 mins I was given a virtual online consultation with my oncologist. It went really well - clear picture and speech and it was really nice to see a face again. It tickled me that I went to a virtual waiting room first. I was later shown the scan picture and the report by my oncologist and would definitely opt for virtual over telephone every time. The only problem was that my results were not good - my original liver and peritoneal mets were stable but my lung met had increased in size and I had new mets in hip and spine! Having said that I am still glad I was able to see the damage online.
tvman, that sounds a bit scary to me..i hope you will be okay!!!
Now i can join the phone line up here, i always saw my onc in person, and still will. But i now have a Endocrinologist and first consult was on the phone, then blood test and last Friday i had ultrasound and iodine xray for thyroid, and the lady from ultrasound said to me, well it all looks abnormal, she then spoke to doc at nuclearmed..as he does report for both.he said afterwards, pls wait outside for five mins as i have to speak to your doc....so i did...then he comes out and said>>> you can go home now...well thanks. Now i got all that shit in my head, abnormal??? Why , what is it...and now i will have to wait until 16. for a new phone call. Thanks......shi...
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