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?

  • Mary I hope everything went ok today ,been thinking about you .

  • Thank you.

  • Thank you. Not the result one would have liked. I'll try and write again tomorrow.

  • Thank you. Not the result one would have liked. I'll try and write again tomorrow.

  • Ok Mary thanks for replying ,just take it easy and if you feel up to it we'll be here for you to support you all the way x

  • Xxxxxxxx 

  • Hi Mary,

    I am so sorry to hear this and know what a shock it is. Please take your time and reply to us when you feel ready. My thoughts are with you and you know that we are all here to support you.

    Kind regards,

    Jolamine xx

  • Thank you, everyone. Rather than type it three times, hope you will see it here. It's rare, some kind of sarcoma.  Finding it difficult to talk about it / accept it, so can't write any more for now. Thank you again.

  • Thanks for letting us know Mary because we care about you ,I hope whatever it is they deal with it quickly no more delays ,I know you have an appointment on 20th I really hope that goes well ,take care of yourself ,Best Wishes to you and your husband x

  • Hi Mary,

    I am so sorry to hear this. It will take some time for this to sink in and you will probably be experiencing all sorts of emotions, from disbelief, to anger, to "why me", etc. It will gradually sink in and I hope that your next appointment on Friday, will help to clarify things in your head. There is no need to say any more, until you feel able to talk about it. Rest assured that we know the agonies that you are going through and that we are all thinking of you.

    Kind regards,

    Jolamine xx