What to expect

Hi,

I’m so sorry that you find yourself here!

I don’t think the memory of that day when I was diagnosed will ever leave me! I remember so clearly just feeling numb, so numb in fact I could hardly find the breath to speak. How was I going to tell my family? My kids? I’d been in hospital a week prior for what everyone thought was removal of a polyp & repair of an internal ulcer but when I came around from the anaesthetic the surgeon said he’d taken a biopsy instead & 7 days later I was given my diagnosis.

You'll be feeling an absolute multitude of emotions I’m sure. Were you been given appointments for any scans at your diagnosis? My scan appointments were made there & then & took place 4 days later. 

I’ll not overload you with information just now as it’s going to be difficult to take anything in at the moment. Although if there’s anything you’d like to ask please do, if I can help in any way I will. 

My diagnosis was last February, I’m 9 months post treatment now & disease free! 

We’ve all been in your position & know how you must be feeling right now so don’t feel that you’re alone. This forum was & still is a massive source of information & support for me as I’m sure it will be for you. 

Nicola

Thank you for your reply scans are tomorrow morning and will go from there so pleased your cancer free my emotional support is good I’ve cried but now I’m positive thanks again honey 

Hi,

I'm pleased you have good support, it’s really important right now, you’ll no doubt be on information overload for the next couple of weeks, there’s an awful lot of information to take in over a short period of time as hopefully, like when I had my diagnosis, things will move pretty quickly for you. 

I’m definitely an ‘information is power’ kinda gal so I did lots of reading around the time I was diagnosed, we’re a bit of a rare breed as I’m sure you’ve been told already! & I connected with others on here that were a few steps ahead of where I was, I found that really encouraging as there are a lot of us here that have had really good results from treatment. It also gave me an insight into what was ahead in the form of treatment & recovery. 

I hope your scans go well today & there’s not too much waiting around for you. Also, difficult as it may be right now, try & hang onto that positive outlook it will seriously help you through this. 

Stay in touch & let us know how things are going.

Nicola

Hi there,

I’m sorry you find yourself here. However, you're in the right place, anal cancer is rare so this is the best place to meet people who really understand.

I totally sympathise with how you’re feeling, its a scary place. I was diagnosed about a year ago. It was a total shock as I was feeling well, didn’t really have any symptoms and I’d never heard of anal cancer. Fast forward a year and I’ve been through the treatment, my tumour has gone and I’m currently in remission and living life pretty much as I always did.  Our cancer might be rare but it is curable and treatment is very effective. You’ll read lots of positive stories on this forum. 

Believe it or not, where you are now is probably the hardest place. You’ve had the bombshell of diagnosis and you’re now in limbo whilst other tests, scans etc are completed to gain the facts about your cancer. Emotionally you’ll probably be all over the place, with all sorts of questions and concerns whizzing around your head. One minute you’ll thinking I can do this, another minute you’ll be down a rabbit hole thinking dark thoughts. When I look back, this was when I felt most scared and isolated. I then joined this forum and Nikki and I became friends and supported each other through treatment. Whilst we had different staging we started treatment at the same time.

Once your scans are done and assessed by the multi-disciplinary team at your hospital, you will have your first meeting with your oncologist. This will be a daunting meeting with information overload but, this is where you’ll get all the facts about your cancer and treatment. Treatment it pretty standard most people go through 5.5 weeks of chemo-radiation. The treatment is short, sharp and manageable. Once you have your timetable for treatment you will actually feel better. You will be focused completely on the treatment and getting through it, you will have an end date to work towards and a team of medical professionals supporting you through.

For now take one day at a time and use this forum whenever you need it. Any questions, concerns, however small just pop them on here and someone will always get back to you. There will be people on here at the same stage as you and people like me, who are further down the line. Like Nikki, gathering information made me feel better. However, try not to Google. We all do it but from my experience it just makes you feel worse or more confused. Use this forum for questions, Macmillan also have a 24 telephone helpline you can use.

In addition, I’d recommend you have a look at:

https://www.analcancerfoundation.org

This is an anal cancer charity. They are based in the U.S. with an office in London. Their website is full of factual information about anal cancer and they also provide a one to one, peer support programme. I used this and found it very supportive. Essentially I was paired with an anal cancer survivor and she provided me with support and advise throughout my treatment. We are still in contact now.

I can imagine your head feels like its about to explode and you might just want to take time to process things rather than reading websites and forums. Always give yourself time, but please don’t feel alone we are here for you.

I think you’ve now had your scans and are awaiting results. I hope you’re not in too much discomfort many anal cancer patients have already experienced some pain before treatment starts.

Please keep us up to date with how you’re getting on.

Sarah x 

Thank you I had ct scan done and now just playing the waiting game thanks for all your information and support I appreciate it I am in pain but it’s managed 

Hi there

yiu feel relief from tumour pain within 2 weeks of starting treatment- it’s that effective which is reassuring.  Essentially you just want to get in with it and it’s the waiting and planning that seems to drag on but believe me it does go quickly.  You being treated at clatterbridge?  I was.  Immense hospital and I can give you loads of local info if you are being treated there.

best of kuck

cathy x

Cathy thanks for the info I’m local to clatterbridge as live in Wallasey just can’t wait to start treatment ASAP thanks again andrew 

Hi Andrew 

make sure you pop into maggies centre in the grounds of clatterbridge get referred to wirral holistic too - amazing!

this forum is excellent for info.  Best advice I got - invest in portable bidet!  Amazon or ebay

i live in heswall so if you want any info please shout!  

Best of luck to you 

Cathy x