This is a bit of a long one and I hope it makes so sense, I am reaching out to others who are and going through this utter nightmare
My Sister has just turned 58 and lost her kidney at 21 and was fine for a long time but has been dealing with stage 4 kidney disease for a few years now as well as a hernia.
18 months ago she had odd spotting, she went to the doctors when it happened 3rd time and they sent her for a 2 week fast track appt (that was May 21)
the appointment never happened, to be fair she didnt chase it up either, but she did go back and saw another GP who then sent her for a FIT test and endoscopy all came back clear last October, she was also referred about her hernia and I took her to the appointment, where the consultant took one look at her size and kidney report and said he couldnt do anything, he never looked at her hernia!. She continued to spot and then had a telephone appt where she asked if the test was clear, where was the bleeding coming from, there are numerous emails they (GP surgery) ignored.
There has been a catalogue of errors with 3 GP's and 2 kidney consultants (who largely ignored the bleeding and tiredness probably presuming it was her kidney and weight ).
Fast forward to May 2022, numerous emails to GP's and kidney consultants and calls to GP's and she was more tired, bleeding more and had been having a bloody discharge from her belly button, she phoned to book an appointment to see a GP, the GP was too busy and made her an appointmetnt to see a clinician,,
The day before the appointment she had an appointment with her kidney team did a urine test that was almost claret colour, they commented on saying they 'knew what that means' possiblily indicating kidney failure.
She went to the clinician appointment the next day and the clinican, unlike the GP's really listened, looked at her belly button dressed it and sent of referrals to a number of places.
She went for an appointment in July to look at her womb and to take a biopsy and she started to bleed so heavily and passed a clot the size of a steak! she then didnt stop bleeding, aspiration, MRI scans CT scans and blood test followed and the bleeding got worse.
Last week she was told (by phone, whilst we were away - her choice) she has stage 4 Cancer that has spread, its in both lymph nodes in her groin, in her womb and her umbilical hernia, its aggressive. Because of her size and kidney failure they said she is going on to palllitive care, we (my other sister and eye are horrified) and understandably my sister who this effects is in shock.
Because of the huge bloody loss she was experiencing up until the weekend (they have now put her on Progesterone), her oncologist and team had a telephone conference with another specialist gynae oncologist in radical laproscopic surgery,about giving her a hysterectomy to have a better quality of life for the time she has left,. He intiially refused but has now agreed to see her when they explained what is happening to her, we go on Wednesday.
She will have to have a number of assessments to see if she is fit enough for surgery.
Since then she has been all over the place, which I completely understand because I am and its not even happening to me so for her it has to be so so so much worse.
She seems to think the op is definitely going ahead and it will get these 'toxins' out of her and she doesnt seem to have really taken in the whole situation but perhaps her brain is catching up little by little of the enormity of it
I am so frightened he will say No and she will give up completely, I am also frightened for her if this really hits her.
My other sister phoned Macmillian whilst she was away and they said we need to ask her if she wants to know her prognosis, she has gone from not wanting to know to wanting to know, but I am really worried for her and personally (even though I fully respect this is about her) I dont know if she will be able to take it, she is not as stoic as I am and I believe it will finish her, if the operation doesnt.
I am utterly devastated for her and cannot believe we are in this nightmare, I wish it was me rather than her
Hi Crocodile
So sorry to read this, especially some of the similarities to the way my wife was poorly treated and getting passed from pillar to post.
My wife was very clear from the start that she did not want a prognosis and I really struggled with that. 6 years down the line I know that a prognosis would not have helped us - based on averages and historic data it is often little more than a guess, at best an educated guess.
Even before my wife was diagnosed with cancer she had massive gynaecological problems - frankly I am very glad not to be a woman as the mis-treatment my wife suffered was terrible. Janice did eventually have an emergency hysterectomy because she was in toxic shock due to an infection in her womb. I know Janice also describes this time as like living in a fog - it is really not easy.
Thank you for posting on here though, the more our stories are seen the better it is likely to be for everyone in this position.
<<hugs>
Steve
