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?

  • I am so sorry to hear this ,a lot to take in . Wishing you all the best xxx

  • Mary 

    quite a big operation, but you will be taken care of well , and plenty of rest you will soon back to yourself x 

  • Thank God they're treating you at the top cancer Hospital in the Country ,have Faith in your surgeon and stay positive it will really help you both .

  • Thank you. We don't think he realised what a shock it was. We had thought they would just get rid of the sarcoma. We are doing our best to be positive but I am feeling quite shaky at the moment. Am trying to get a GP appointment, a lot of things to talk through with someone.

  • I agree your GP is the best person to talk to ,he will be able to advise also maybe able to give you something to temporally get you over the shock to calm your shaking ,it definitely sounds like delayed shock he will have seen it many times before so hopefully you can get an appointment asap x

  • One small silver lining in what is a very dark cloud, they haven’t said that your condition is inoperable. That’s a very hard word to hear. 
    The planned procedure isn’t too unusual, as those organs are very close together. A friend had a similar operation three years ago and has made a full recovery. 
    Anyone would feel shaky given your situation but you have hope on your side.

    The hospital should have appointed a named cancer nurse to talk to. This may be hidden in the paperwork you were given when you met your consultant. Don’t hesitate to ring him or her with any questions - mine was really helpful  at every stage of my treatment. 

    Good luck

    Dave

  • I love your message to Mary ,some very good points and its filled with positivity and hopefulness ,very helpful information .

  • Hi Mary,

    Thank you for sharing your most recent news. 

    I'm sorry to hear the operation will be larger than you had hoped - I'm sure that news is quite difficult to process. I also understand your point about the manner in which news like this is shared by the professionals, many can be very "matter of fact" which isn't to everyone's cup of tea.

    But as others have said, you are undoubtedly in good hands. These types of surgical operations obviously carry risk and come with great apprehension for the patients - but I always try to find comfort in the fact the are something specialist surgeons do regularly. You can be safe in knowing they understand what they are doing.

    As you may recallf from my post, my partner is also suffering from sarcoma at the moment and is likely to have a major operation in the coming weeks.

    Hers won't have as much organ involvement as yours, but comes at high risk due to location near key cardiovascular systems alongside muscles and nerves involved with arm movement.

    I can see the anxiety this causes her, so I truly sympathise with your position. 

    I tell you this as a reminder that "you are not alone" - though I appreciate that comes as little support at a time like this. 

    You are in our thoughts. I'll be cheering for you and hoping for a speedy recovery, just like I'm expecting for my partner. 

    All the best, keep well.