Absolutely terrified but trying to be positive

 

Rectal bleeding and pain that began in September 2019.

Sigmoidoscopy returned "normal" results although extremely uncomfortable during retroflexion which didn't feel right. Bleeding continued!

Faecal Immunochemical Test revealed worrying results way beyond normal range! (September 2020) 400+

Bleeding continued! 

However, Colonoscopy returned "normal" results.

Bloods apparently "normal" regardless of potential protein markers the GP didnt think important!

Was left feeling completely paranoid by professionals

Is it any wonder, My Father was diagnosed with terminal bowel cancer in July 2020 & died six weeks later. More neglect!

August 2021 - I was still bleeding, bloods continue to be normal....still left to my own devices!

May 2022 - Dietician put me on the F.O.D.M.A.P diet to see if food intolerance/IBS was possibly the problem.

June 2022 - Gastroenterologist "What exactly do you want me to do, all your investigations are normal. You obviously have hemorroids" ??????? (which I did not) He was so rude and obnoxious. It was very upsetting.

July 2022 - I discovered an internal rectal lump, GP confirmed same, indicated that it couldn't possibly be sinister because if it was anything to worry about the shape would be different. "Cancerous lesions are normally jagged & not smooth like this" !!!

On a positive the GP did bounce another referral back to colorectal team. My third consultant in three years and still no further forward !!

December 2022 -  Appointment with visiting locum consultant who finally listened and agreed what was felt was not normal & requested urgent colonoscopy under general anaesthetic. The GA never happened because there were "no beds" but was told that an experienced consultant would perform the procedure. Should every patient not receive an experienced medic EVERY TIME?

December 22nd 2022 - Three days before Christmas, a tumour was located within the original region of the initial sigmoidoscopy. My heart sank, I went into panic mode. Maybe this was three years too late!

January 23rd 2023 - A month after the discovery, T2 Anal Squamous Carcinoma Confirmed which has grown into the muscle but thankfully not spread to lymphnodes or other organs/vessles. Four stone lighter in weight since May!

February 1st 2023 - I begin Chemotheraphy & Radiotherapy.

I feel such a mix of emotions but the one that weighs on me most is that I no longer have my Dad to help me through this because he too was let down worse than myself. It's just not right that we should have been treated like this.

I have huge trust issues and do not feel safe because of all the errors. I am terrified but wanted to share my story so I no longer feel alone. 

 

 

 

  • Dear Shalaway, I was so sad to read your story, and for the loss of your dad so quickly. Whilst I have no experience or knowledge about your type of cancer (I am receiving treatment for breast cancer), I just wanted you to know that you are not alone right now. I can't imagine how let down you must feel and it's no wonder you now have trust issues. I'm saying a little prayer for you that your treatment will be successful and that you will be attended by caring and compassionate staff. Do keep in touch if you would like to, but I hope that others will chime in who have had the same diagnosis and may be able to offer you more support. God bless x

  • What a lovely message, thank you.

    I hope you are also getting the support you need x