Headspinning new diagnosis

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Hello to everyone, new and old on the forums.

I've been reading through some of the relevant threads (very carefully due to my very new diagnosis and delicate frame of mind because of it) and I have to say that this information and support beats "Dr Google" every day of the year.

Not sure if this is the forum for stories, but I am just a couple of weeks into my (and my family's) journey through Rectal Cancer.

It has been a whirlwind from the moment the screening kit landed on the doormat (I am in my early 50s), through doing the test, receiving the correspondence asking for a telephone consultation with a nurse practitioner, the horrible wait for the colonoscopy and trying to calm the catastrophist within me.

Then there was the colonoscopy itself, the moment the the colonoscopist said "oh, that isn't good" or words to that effect (I was sedated), the emotional meeting with him and the nurse specialist later that day, the MRI, the CT and then being told that I would need surgery (TME + ileostomy) for rectal cancer.

This is all while being told that I am lucky given my age, fitness and the fact that I had no appreciable symptoms. Obviously, I am pleased to need as few treatments as possible, but must admit that such a large removal of tissue for a comparatively small pathology seems heartbreaking and incredibly worrying.

What is good is the apparent speed of the team through the process - head-spinningly fast. I'm scheduled for surgery in the next 4 weeks I believe (but do not have confirmation) but that is 4 weeks of wildly swinging emotions as I am coming to terms with the magnitude of the surgery and the long road back, all while trying to tell friends and family just enough without overwhelming them too. Some of the stories I have read here have been wonderfully hopeful. Thank you for all of them and I hope to provide mine in due course.

Kareno62 3 months ago

Hi CohesionC and a warm welcome to the board. Yes we always advise staying away from google and I’m glad you’ve found reading some of the posts helpful.
The first couple of weeks after diagnosis tends to be a whirlwind of scans and meetings but it sounds like you’re going straight to surgery in the next few weeks which is good. It is a big operation but you need to put your faith in the consultants and surgeon - their aim is to get the tumour and any surrounding area (which could potentially contain cancerous cells) away which gives you the best chance of avoiding a recurrence.

Will your Ileostomy be reversible at a later date? There’s lots of help and support on the stoma board but we can link you into that nearer the time. I’ve attached a link to a booklet about the operation and hints on what to take with you (an extra long charging cable is a must).

https://bowelcancerorguk.s3.amazonaws.com/Publications/YourOperation_BowelCancerUK.pdf

We’re all at different stages of treatment and recovery on here and happy to help and support you through yours so please feel free to ask any questions that you might have

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

CohesionC 3 months ago in reply to Kareno62

Thank you so much Karen! I am at the stage where everything is possible and nothing is certain: never a good place for a catastrophist like me to be. I have been told that the goal is for it to be reversible.

I'm trying to compartmentalise as much as possible:

- Managing emotions and preparing for the operation (plus an echo and Surgery School)

- Managing the immediate preop period through to the general

- Giving some consideration of HDU

If I'm not thinking about one aspect, I'm obsessing about another. It is exhausting.

Kareno62 3 months ago in reply to CohesionC

Hi CohesionC Yes it’s a difficult time and everyone deals with it differently. I wanted to know as much as possible when I was diagnosed whereas my husband was happy to come to the meetings and just know what he needed to. We always tell people to deal with things 1 step at a time and I suppose compartmentalising is a step up from that.

Would it help to draw up a list of questions for each stage of the process? Each hospital is different - there was no surgery school for me but then no HDU either. I met with the surgeon in a pre-op meeting and the anaesthetist and member of the surgical team again on the day of the op. I’d never been in hospital before but was well looked after at all stages and lots of support from the stoma nurses around the Ileostomy.

This post was from a member a while ago who found it beneficial so might be worth a read?

Controlling anxiety and panic

Plesee give the support desk a ring too if you want to chat to someone in person - the number is under my name

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm