Are you newly diagnosed and feeling worried about having virtual/telephone appointments?

Are you newly diagnosed and feeling worried about having virtual/telephone appointments with your medical team rather than face to face?
I remember when I was first diagnosed having my emotions on high alert and feeling really shocked, scared and so, so isolated.
If you are newly diagnosed I wonder how you are feeling about having virtual/telephone appointments with your medical team rather than face to face ones? I am finding this is becoming the norm for appointments these days.
I could not string a sentence together when I was newly diagnosed, I had no idea what questions I should be asking and I think it would somehow have compounded my feeling of isolation. I would also have the perception at that time if it was a virtual/telephone appointment it would not thought to be so serious by everyone.
If you would like to chat to someone you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
I would be really interested to know others thoughts and experiences.

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I am not really replying to this in one way but it is related.
If you need blood tests,prior to your phone appointment and normally go to the hospital for them, I would suggest that you phone your GP. Mine were so helpful and made arrangements for me to have them at the surgery ( which is normally closed at the moment whilst work is switched to the ‘sister’ clinic). It felt so much safer than going to the big hospital (due to the cottage hospital being closed). I had not realised I was so anxious until they sorted it for me. Then I felt relieved.
You would of course need your blood test request forms to hand.

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Hi @GrandmaJo, thanks really useful, thanks, have you got any other appointments due?

I was diagnosed with Follicular Lymphoma in February but since then all appointments have been by phone with the hospital. Once they asked for a blood test and sent the form for my local GP to take the blood. All seems to be running smoothly but phone calls rely upon me saying the right things!!

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All of my appointments this year have been by phone all have been brief and the doctor on the other end sounding completely uninterested in my welfare. This leaves very concerned that when my Myeloma resurfaces as it’s likely to in the next year or so then it won’t get picked up. That way leads to broken bones and immobility as I found out last time.

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That must be such a worry for you @Franko, please keep us posted how you get on.

Hello, this is my first post on this forum and was diagnosed with CML in July. (I was diagnosed late having put off going to the doctors during lockdown.) I had a week in hospital for chemotherapy where I met my ‘team’ but as they always wore face masks I felt it was a bit of a barrier to fully establishing a good relationship. All my follow up appointments have been by phone and although I recognise the voices I’m speaking to I feel sad that I can’t visualise who I am talking to. It has been a big learning curve for me and at my last monthly appointment after asking some of the questions on my list, the CNS said she had a big clinic and had to go. The phone call lasted less than ten minutes, however I suppose it’s better than a worrying trip to the hospital. I feel reasonably physically well on 400 mg of Imatinib but it’s the emotional support that’s missing. This is where this forum has been a great help and being able to share all the little things that a CNS doesn’t have time for.

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Hi @Caxford, welcome to posting on our forum. What a time to be diagnosed and having treatment.
You have raised such a valid point about how face masks are a real barrier to seeing a face and establishing a good relationship with your medical team and then having telephone appointments compounds that. It must have felt very isolating and a lonely place to be.
I am glad you have found our forum supportive. I think so many of us have experienced a roller coaster of emotions, elation to tears instantly. Please do persist with your CNS to get the time and support you are entitled to.
I hope you will be able to say how it is for you on here as often we will understand as perhaps others cannot. If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Has anyone else had similar experiences?

I write everything I want to know down beforehand and refuse to be rushed through. Hard for people who maybe don’t feel as confident and who don’t have people around to support them. My husband is always on the call with me.

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Hi @Nichola75 and @Groves1103 and all, I have grown in confidence over the years and I also now say my fears to the consultant or GP. If I don’t understand something I will also ask for clarification and say if I need time to think about something.

I agree @Erica, as time has gone on my confidence has also improved!

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I’m still not comfortable with telephone appointments as I’m afraid something will get missed. My last consultation took less than a minute (I timed it). That’s really not adequate.

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I do get anxious about missing the physical examination. Although I feel for lumps and bumps all of the time I understand what you mean about something being missed!

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Hi @Franko, less than a minute does not give time for the usual pleasantries let alone any medical questions.
What are others experiences?

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