Buckle up, it’s my first post but it’s going to be a long one!
having had horrific periods for most of my life and being gaslit by the medical profession I really didn’t have much hope when perimenopause hit hard, the symptoms got worse and I suspected that something was wrong. As predicted I was discharged from the hospital Gyne team after a normal hystoscopy and that was pretty much the end of the line. Well I had insisted on health insurance and decided to push for a full hysterectomy via a private hospital, the surgery was completed within 3 weeks and the histology report returned with adenomyosis, endometriosis, and microscopic high grade serious carcinoma on my right fallopian tube, both ovaries and seated around the endo on my womb.
jump forward 6 weeks and I’m in the NHS having completion surgery which was offered as not really necessary to remove ‘more cancer’ as it was VERY UNLIKELY there was more as my CA125 and scans were clear, but more of a staging tool as I didn’t qualify for any treatments other than the standard 6 rounds of chemo.
I of course went ahead.
5 further deposits of microscopic cancer were found, on my peritoneal lining, some scarring, and my para aortic lymph node. My cancer was upgraded to 3B and I was told that I am incurable and the purpose of treatment is to lengthen the symptom free periods. I do have to say I found this out in a cc’d letter and not face to face. It was devastating.
Where am I now? I’ve completed my chemo, I’m 2 weeks post 6/6 and it’s been a train wreck from start to finish, my meds have been wrong, forgotten and sent in a taxi, they allowed me to continue HRT at a reduced dose during my chemo period but forgot to prescribe for 6 weeks, I have neuropathy in my hands and feet, I’m registered disabled, my veins are shrunken and cannot pass the Paclitaxel which was so very painful. I’ve gained 12kg in weight and I look very very unwell.
i honestly have had the worst experience of treatment and complications related to it, the nurses of course tried their best.
I love seeing all the success stories but I don’t feel represented, my experience has been horrendous, horrifying and so very disappointing. My ‘team’ were so busy with day to day tasks that my last session ended with me leaving with zero pomp or splendour, no bell ringing, just coat on wave bye and go. My oncology nurses haven’t called in over 7 weeks maybe closer to 9, I’ve seen a different discipline and different person for each treatment, appointment, call, since this began meaning over explanation, frustration and confusion. I’ve been shuffled, left waiting and forgotten consistently.
My cancer, though serious is invisible, the tests don’t show it, it needs cutting out and looking at under a microscope.
I am scared, I have no trust in the system as I have experienced it, I’ve had my base line scan and am awaiting my first post chemo appointment.
how can I further advocate for myself?
how can I get me back?
how can I celebrate my 50th birthday in 3 weeks feeling like this?
am I alone in this mess I’ve endured? Surely I cannot be that unlucky?
sending love to all.
x
Hi Rolled_in_glitter76 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
It sounds like you've been through an incredible amount and I can completely understand how you're feeling. You say
how can I further advocate for myself?
so you might find this blog from Macmillan on how to advocate for yourself when speaking to healthcare professionals useful.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
