Hi
After first reporting my symptoms Jan 2021 to my gp i finally had a colonoscopy , biopsy and gastroscopy 30th November 2021 .
This was after my gp first referred me to gynaecology department which appointments were delayed due to backlog of covid then referral went missing! Then finally told nothing was wrong ! I furthered it again with my gp as I was still in pain and bleeding from back passage which resulted in being referred for a sigmoidoscopy but after another 7 weeks of waiting I'd heard nothing so contacted gp again to which I was told I had to chase it up myself with the hospital ( PALS) to which I ended up waiting another 3 weeks because short staffed and they then gave me the news it allegedly had never been referred and to go back to my gp!! At this point I was on the verge of a breakdown.. sent back and forth ..I put a letter of complaint to my GP saying I feel let down by the whole medical services and I don't care who what why ..I just want someone to sort me out !!! Finally in November I had an appointment with a lovely colorectal nurse who after an examination found a tumour and I was urgently referred for colonoscopy and gastroscopy. This procedure was done on 30th Nov as I stated earlier, whilst waiting for my biopsy results I was given an urgent CT and MRI scan and had the results on 16th December 2021 and was referred from my local hospital to another as it didn't deal with this particular cancer .
I heard nothing from the new referral until 6th Jan, during this time I had no one to turn to to ask questions, it was an awful 3 weeks . I finally had a phone call from a consultant who said I needed a PET scan as according to my ct results in December my lymph nodes were enlarged so need to see if has spread . I had the scan on 14th Jan. The nurse there said the results will take 48 hours .
I heard nothing so I called the consultants secretary by the end of the next week to see if there were any results and to see if there is any news on when I'll be seen by the oncologist or discuss what treatment etc . She informed me that my results were through and waiting to be seen . My MDT hadn't taken place that week because my consultant was on holiday abroad and not back til the following week . I was devastated, I totally understand that people are entitled to holidays but surely they should appoint someone in their place whilst off 
So more waiting...
I waited until yesterday and called again. My MDT meeting has taken place this week and she had the notes ready to type up to send . I asked if she could tell me if I had an appointment with oncologist she said she can't discuss the letter without consultants authorisation. She got back to me and said she had spoken to consultant and that she has now typed up the letter and I will receive it soon .
So yet again I am still waiting, so many questions I have going round in my head , the pain is getting excruciating, I am worried its spreading as even my lady bits hurt now too and I can feel a lump on the wall of my vagina .
I have a lot of support from family and friends but feel I have no support from the medical side of things . I am just in limbo .
Over 6 weeks of being given a diagnosis but no one to ask questions to is so hard , what the treatment is ? what to expect?
I ended up googling it but that made me feel awful !!
I'm so glad I found this forum as it has been some comfort .
I apologise if I have waffled on but I just feel alone .
Hi Trv22,
Firstly welcome to the Macmillan online community although I’m so sorry that you’ve had the need to find us.
What an absolutely awful time you’ve been having, It makes me so angry when things are not appropriately followed up especially with something as serious as a cancer diagnosis! As you have already done I would definitely have put in an official complaint starting with the GP! You’ve had symptoms for a year now which has resulted in this diagnosis, things may have been much easier dealt with had it been picked up when you first presented with symptoms! I can only imagine the stress you’ve been under. I’m also sure details of your appointment could have been given over the phone, I hadn’t received my latest scan results before Christmas & was concerned so I rang my colorectal surgeons secretary & after taking a couple of details to make sure I was who I said I was she quite happily read the letter over the phone to save me worrying whilst waiting for the post.
We advise people to try & not Google as so much of the information out there is pretty outdated & quite scary to be perfectly honest, maybe stick to sites such as Macmillan or Cancer Research as these are reliable sources. Please if you have any questions at all don’t ever be afraid to ask however personal they may seem, I can guarantee we’ve all asked these same exact questions somewhere along the line. I also know how lonely it can feel especially in your situation with not receiving very good support via your medical team but you’re not alone, we’ve all been through this or are going through this right now so you’re in good company with people that understand what you’re facing. I really hope you hear something about your appointment soon if not don’t be afraid to chase it up again.
Nicola
