Hi I've not been on here for a long time.Over 3 years ago I was told I had womb cancer. I was put on 6 monthly biopsies as was not ready for a hysterectomy. During these 3 years + my biopsies were forever changing.
I have now been told my biopsy shows complex hyperplasia with atypia suspicious of adenocarcinoma. I have my op date however am not convinced of my diagnosis.
OMG... I am really horrified... Its absolutely shocking the way we are just cast aside. So impersonal, uncaring and cold.
I can totally understand how confused and anxious you are feeling. Our worries will never go away that it will come back and we might not know. What our bodies might do now and who can help us. It's empowering to have the knowledge.
We don't want just old leaflets, do we? We should have keyworkers that we can be guided by. Who will make the right referrals for us. Every one of us will have individual, personal needs and we should get at least, offered support.
I'm a little behind you... Not got results as yet but am already asking these questions. I'm still in pain, bloated, breathless and flushes/sweats. Keep getting a cold nose too lol.. (must have turned me into a dog)
I'm trying to access services and help but it's not easy. They tell you you need to rest and recover. Not do anything strenuous... Well, hello.. I live alone and have no one around me.. They shouldn't presume we all have the right support. Even if you're surrounded by people. And covid is making it so much worse for us.
I am rather outspoken (wait until I'm stronger) however, I"m really nice & caring..
Firstly I would advice that you remove the reference to your phone number. Click on "more" at the bottom of your message and choose edit. . If you want to directly contact someone like Shell56 it is best to ask her to join you as a friend and send a private message . ( See top of page. )
But also I do think that it is very wrong that you have had so little support as an individual living alone. That is just not on.
Oh didn't see private messaging..
I'm so pleased you are still well... It good to hear from someone further down the line who can give us more info.
Thank you xxx
I hope you didn't mind me saying it. Personal info can so easily be misused.
Yes, I do think it is sometimes helpful to hear from someone who is further down the line.. I often wonder about those whose stories I ead 3 or 4 years ago and its nice to know they are still around. That's why I pop back every now and then. To be honest the worry never quite goes away and lingers in the background. I have found that as time goes on one can keep a sense of proportion about it and certainly at the moment and at my age I worry more about Covid!.
I just wanted to say I too had dreadful aftercare nobody asked me if I was ok, helped me outta bed nothing. I was sent home with a urine infection I was so frightened and emotional with no advice at all !
I also think it’s a disgrace hope ur doing ok
Lesley M x
Hi Anna48, I just sent you a friends request to highlight the private messaging part of the site. Let me know if you get it you can except or reject it, its just to show you.
I am rather disappointed putting it politely how some of you have received no aftercare or had some explanation of your diagnosis grade, stage etc and some point of contact from the hospital,this is so important if nothing else some reaccurrance. Lesley M I hope your urine infection cleared OK after being sent home without advice, I do hope you had some medicine for it at least. The last time I was sent home with a uti it went septic hence my quick back into hospital again, I have what is called recurrent uti and just been diagnosed with it and currently on a new dose of preventive antibiotics as well as a new course of antibiotics to treat the current infection which my GP just phoned me to say that the infection is worse then she thought after the tests came back and I need to have other antibiotics as well so I be honest I look at uti rather differently now and feel rather annoyed to hear how they sent you home like that. I do hope you recovered OK.
Apart from everything else how are you all doing Anna48, Shell56, Lesley
With regards to recover I am doing really well. I have had no pain really to complain of. Able to do most things myself but on occasions become really tired. I have suffered from constipation though...ouch.....
I have since diagnosis just carried on with life and have a real positive outlook on life.
I feel like I am on the outside looking in at what has happened but I feel really ok...maybe this is the way I deal with life....
But know feel slightly apprehensive as the only symptom i had a slight salmon coloured discharge on 1 occasion was told I had 1b when post op 1a which obviously is fantastic news but on a couple of times in letters I received from hospital seemed to mix me up with someone else....previous breast cancer I was told which I hadn't had then extensive past medical history and numerous medications which again was untrue.. I would have liked a face to face post op appointment ....not even a letter to reiterate anything.....no aftercare at all
It just gets worse....
Sorry to hear they mixed up your results and records.... Its just not acceptable.
I've not had my results yet.. 2 weeks today since op. I've not been too good after op. In constant pain. Returned to hospital on Sunday as I suspected I had an internal infection. After lots of tests and actually they were very good on this dept. I came home with 7 days of antibiotics. I am having awful side effects off them.
Shell... I put off having this op for over 3 years... The results were all over the place.... I am still undecided.
I think women's gynecological services need to look at these messages and evaluate their treatment procedures. We don't seem to be receiving enough info and care.
Stay well & positive everyone
i was exactly the same after 4 weeks I started bleeding again had 7 days antibiotics and I was one after. Lesley x
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