Hope you don't mind me sharing this

The situation started with a swelling to the left of my tummy button earlier in the year. I had FIT and blood tests (all clear). I  had an appointment with a colorectal consultant who arranged for me to have had a colonoscopy (all clear),  and a CT scan. The colorectal consultant felt the problem was gynaecology / urology related and spoke to gynaecology and urology colleagues about me. I had an appointment with a gynaecologist whom we could hardly understand and, without asking if we wanted to see the scan, turned the screen towards us. I had no wish nor need to see what my insides looked like. I felt he should have asked if we wanted to see it. He said he would arrange for a biopsy.

5th July I had an appointment with an urology consultant who, I think it was after we told him that the gynaecology consultant had dived straight in with words about cancer, said, words to the effect of, we have to be careful with words but it does look suspicious, and he would wait for results of the biopsy before deciding what to do next; he thought the kidney looked okay.

On the 7th I received I a letter from the gynaecologist, copied to my doctors' practice. It said at the beginning that he had seen us in his oncology clinic, we hadn't known that - as far as we were aware, it was an appointment made by 'phone by a nurse the previous week for me to see a gynaecologist in outpatients; I was supposed to have received an appointment letter in the post but it never arrived. The letter was as if he was writing to a medical doctor giving medical terminology and diagnosis and the wording was very scary. Of course foolishly I looked up some of the words and wished I hadn't.

14th July I had a biopsy. The staff, nurses, doctor, receptionist, could not have been more caring. I told them about the appointment with the gynaecologist. They said no one should give a diagnosis before results received from a biopsy, he should have communicated well and explained about the biopsy, and I did not have to be seen by him again which was quite a relief. Whatever is going on with me, we should be able to understand what is being said. I have since spoken to someone in the hospital to the effect that we would wish to be seen by someone else.

Last Thursday I received in the post an appointment with the urology consultant to take place on 8th August. I rang his secretary to ask if it was for biopsy results and she said a follow-up from the previous appointment and she expected the biopsy results. The next day, Friday, I received a letter that was copied to me, typed on the 17th, sent from the urology consultant to my doctors' practice. He said in that letter things he had not told us such as the words advance malignancy with secondaries. He said it is not classical ovarian cancer because of the numbers, but. He used another c word as a possibility that the gynaecology consultant had used, one I had previously looked up but wished I hadn't. We were shocked, after he had said in our presence words to the effect of, we have to be careful with words but it does look suspicious..

Sorry this has been so long and I have been rambling. Doctors seem to be making life stressful. In the meantime, I still feel very well, have a good appetite and have not lost weight, other than a few pounds in the last few weeks / months that, hopefully, is just down to stress! I've even started to panic and think should I start feeling unwell from reading the contents of those letters? Why am I still feeling well?! Will I start feeling unwell soon?

  • Oh Mary , sending you a hug xx I hope you manage to do this x Do you have any family for support? 

  • Oh Mary ,it is awful. Can you have a friend by your side when you phone . Maybe put call on speaker and they can write things down too . Hugs from R x

  • Thank you, both. I spoke to an answering machine and hope she will return the call soon.

    My husband is here. He is my rock.

  • Lovely to have such a supportive husband , let us know how you get on xx

  • Mary 

    how did you get on today any luck with speaking to your team ? 

  • Thank you, both again. I did speak to the consultant's secretary who will pass on all our questions to him Whether or not we will be given the answers before the outpatients appointment next Tuesday we don't know. My husband also spoke to him.

    I feel a bit embarrassed / awkward at having unburdened myself on the internet.

  • Mary , sometimes it’s better to speak to people like us ,it’s not a burden as we have all been in the same boat and there to support each other x

  • Thank you so much.

  • There's no need to feel awkward or embarrassed ,it can feel a bit strange at first because we all feel we should be able to just get on with it ,but we've all been where you are right now waiting wondering and worried so we understand each other ,its much better than bottling it up ,we all need someone to talk to at times like this and there's some good advice on here ,there's always someone available so just pop in if you have any queries someone might be able to help or point you in the right direction Mary .

  • Mary we are all here for you to chat and listen to you and hope we can help you xx that’s what this place is for for each other xxx 

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