Hi, I don't know if my expectations are too high but this state of limbo is messing with my head.
In February, whilst on holiday in Europe , I was admitted for an emergency bowel operation as a blockage had led to perforation. Afterwards I was told it was a cancerous tumour with some lymph nodes involved. All info I was given was in another language so I had to use Google Translate. My release notes said there were adnexal (ovarian) masses which needed gynaecological examination.
Back in the UK once allowed to fly I struggled to get into the NHS system. Eventually I started to get appointments for scans, without actually seeing any kind of hospital specialist. I was allocated a colorectal nurse to liaise with who told me that they suspected Krukenburg tumours which have a pretty grim prognosis.
I was booked in for a hysterectomy mid-May but later on the same day as I had attended the pre-op I had a call to cancel that op as a PET-CT scan had shown a hot spot on the peritoneum.
I eventually met a surgeon mid-June when the full hysterectomy was agreed upon, with the proviso that if more peritoneal involvement was found they might stop what they were doing and send me off to a different hospital which specialised in peritoneal malignancy.
After the op the surgeon said that she couldn't be sure what they had found on the peritoneum and wouldn't know until it had been analysed. Which is where I am now.
I finally had the op almost 3 weeks ago but still don't know what my situation is. My 'key worker' tells me that they cannot chase up histology, but that they 'might' just send an email if it's delayed beyond 21 days.
We are in total limbo, not knowing whether I'm OK for now, whether I need 12 weeks of chemo, whether I've got a few months left or whether I'll need more operations or more complex treatment.
Is this how life is when you've got cancer? How do people cope? I try to put it out of my mind and live moment to moment but it's hard to do that in the middle of the night.
Sorry for such a long post.
I'm kind of in a similar situation myself with a peritoneal mesothelioma diagnosis and omental secondaries.... I've had ascitic fluid drained once... Just over 2 weeks ago.... But it's staring to bu
d again!!! I rang the hospital this morning to see where there were with my treatment plan.... I'd no idea who to ask for but explained my problem and needed up speaking to oncology..... Only to finafter 4 weeks of cancer diagnosis and 2 hospital admissions oncology don't even have a record of me...... I have no idea where to turn for help now either.... Or for some sort of assurance that I will get my chance of chemo before its too late
Hi Lucylocket and welcome to the Online Community although I am sorry to see you joining us and to hear about your diagnoses and your ongoing challenges with getting clear information. I have been on my journey with a rare blood cancer for over 23 years and these problems have unfortunately been there a long time.
A cancer journey can be such a stressful time but when it comes to support there is nothing better than talking with others who are in the exact same position.
The Community has various support groups (discussion rooms) so can I suggest that you consider joining our supportive Womb (uterus) cancer group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the Green (Bold) link I have created above. Then once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Give me a shout if you need further help.
All the very best.
Hi SalDee and a welcome to you. Sorry to hear about your diagnosis and the communication challenges you are having - unfortunately rather normal at the moment.
You may want to join our dedicated Mesothelioma support group as this will connect you with others on the same journey.
You can see how to navigate the site by looking at my answer to Lucy.
If you need more help do get back to me.
