Consultation with the Christie

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I'm feeling quite upset about my consultation with the sarcoma consultant next month. I received my appointment letter and it categorically says that I have to go alone. I had 8 admissions to hospital last year and obviously no visitors which was tough, especially the 9 day admission. I was told over the phone that I had cancer and didn't meet my surgeon until a couple of hours before the operation. After the surgery she came to see me and told me that it wasn't cancer after all. Almost two weeks later the gynae nurse rang me to tell me that it was cancer and it was rare and aggressive but it had all been removed and the cancer was gone. Last week I got a copy of the referral letter to the Christie hospital saying that there was evidence of lymphovascular space invasion. I've lost all confidence with the local hospital where I had my surgery and thank heavens that I'm going to the Christie as they have a dedicated sarcoma team. My husband and daughter (who is a scientist) want to come with me but that's not possible. Deb

  • Hi Deb,  I think it is worth checking with The Christie and making a case for asking if you can be accompanied by someone else at your appointment.  (it might be pushing it to ask if 2 more can come!)  These letters are usually pretty standard and are aiming to discourage too many people attending as waiting room space is restricted.  In the event of that failing, you could just turn up with your husband and brazen it out! 

    Good Luck

    XXXX

    Anne

    (Class of 2015!)

  • Hi . Sorry to hear that. Covid's impacted hugely on normal hospital procedures. I was told by a nurse on the phone I had cancer. The Consultant I met (actually this day last year) didn't do my op, a different surgeon did it - I didn't know that until after, I was under the impression a top laparoscopic would be doing my surgery, mind you she did a lovely job!

    I think you could insist on your daughter coming in with you as your chaperone. I once mentioned to my friend who's a doctor's receptionist (the nice type!) I was bothered when my hubby saw his GP about something as he never takes on board what he's told, nor asks any questions and she said I could be his chaperone - I honestly thought that was something you could ask for if a doctor of the opposite sex examined you. Worth a try!

    Christie has a reputation as the best, youll be in safe hands.

    Big hugs, Barb x


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  • Hi Deb - as oldady says, ring the Christie and check/put your case.  All of my letters from the Royal Derby have said to come alone, but there are always lines of partners/family members sitting in the corridor in chairs which have had a perspex screen attached for just that purpose.  When it's my turn to go in, I've always been asked if I have brought someone with me. Good luck x

  • I rang the Christie yesterday and asked if I could bring my husband. The appointments lady said "is it your first appointment?" I said yes and she said " you can bring someone with you to your first appointment only" I said it didn't say that on the letter and she replied "oh, it won't" !!!! Why don't they say it on the letter? Ridiculous but at least I won't be on my own. I think that my husband has found it difficult being excluded from all the appointments and being told second hand by me what has been said. My daughter is disappointed that she can't come but I'll make notes on everything that is discussed. Deb

  • Winner!  It's great that your husband can feel more involved and that you'll have some back up when you are trying to remember what's been said.  

    When my dad had cancer, my mum went with him and I was also allowed in as they were both in their 80s and needed the support /advocacy (just thinking that you might be able to sneak your daughter in too in some way!)

  • Hi

    I hope you don't mind me butting in as I'm not a member of this group.

    That's great that your husband can accompany you and I noticed that you said you'll be making notes about everything for your daughter.

    Another option is, with the consultant's permission, to record the appointment on your phone and then you can play it back to your daughter. It'll also be useful for you to be able to listen again to what was said later on.

    x

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  • Good idea. I'll try to record it. Deb