Anal cancer

Affected by anal cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Awaiting diagnosis and terrified AIN3

Midlands20
Posted by

With a CD count as low as mine, I doubt it’ll be useful.  Anyway, as it’s not ‘cancer’ I shouldn’t worry too much.  I’ll see what they say Friday and take it from there.  No doubt, I’ll be alone once again. Fed up with searching for answers and landing on nothing.  This seems like a wonderful platform for people suffering with cancer.  The teams at the hospitals are soo so good. 

JackD
Posted by

You say about being alone all over again. Don’t you have any family? I’m on my own too, I don’t think any of us stop searching for answers, it’s been over a year and my questions keep getting bigger. I’m sorry I can’t help you with AIN3. But I’m looking it up.  What questions have you got? I hope the person  Jessi will be able to help and support you. You do sound so worried, you sound very stressed out. I do hope you will be okay on Friday. But remember we are here for you.

JD
JackD
Posted by

I wish to continue what I’d wrote. So now I’m understanding AIN3. The thickness of the skin around that certain area. are you experiencing any pain? Because of the rareness of the cancer, I can see your frustration.

JD
JackD
Posted by

Dear Sarah.

decided to see how long Jessi was active here. But it has been two months. I’m still new to this online community and it’s the first time I’ve come across someone who hasn’t been active for a while. I hope Jessi is okay. 

JD
smrichie5
Posted by

Hi

You are right, this is a great platform not only for cancer patients, but for anyone affected by or concerned about cancer. Family members, carers and people like yourself waiting for more information. I understand that the waiting is hard and very isolating, you have so many questions that you can’t get answers to. I am sure that on Friday your medical team will give you the full picture as they’ll have had chance to review your scans and devise a plan going forward.

You have done the right thing coming on here. You are not alone, there are lots of people on here who will be more than happy to listen and support you. You can also call the Macmillan Helpline (no. below) at any point, should you wish to speak with a nurse for support or guidance.

Friday is just around the corner. Do you have someone who can attend the appointment with you? from experience, I’ve found that having someone there is not only supportive but they can take notes and remind you of anything that you may forget. Meetings such as these can be very overwhelming.

Good luck.

Sx

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.
smrichie5
Posted by

Hi 

The thing with this site is that people are free to use it as and when they choose. Whilst someone might not be posting messages, they may still be observing and reading posts. By tagging people in messages, they will be alerted and if they are still active on the site they can then choose to get in contact if they wish. 

Sometimes people are very active on the site then for whatever reason, they don’t use it anymore and we don’t always get to know the reasons why.

The Community Champions do their best to keep the lines of communication open but it can be very hard to keep track of who is and isn’t using the forum. Sometimes people direct message me which can make follow-up a little easier.

Sx

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.
Nikki65
Posted by

Hi again ,

I’ve not been on the forum since early this morning, I’ve been at work, I’m not quite sure what’s happened or what post you’ve wanted to remove but please don’t think your diagnosis is any less significant than other members on here.  

We’re here to offer you support throughout this difficult time &  as I found throughout my treatment etc., the advice & support on here is what got me through the dark times. Connecting with others that know exactly what you’re going through & have experienced very similar feelings is invaluable. 

Nobody should ever have to go through this alone & as long as we’re here you shouldn’t feel as though you are alone in all of this. We’re here for you. 

Nicola 

Midlands20
Posted by

I don’t want anyone with me. Diagnosed with hiv was bad enough do used to handling shit news. Whatever the diagnosis of my pre/cancerous condition, people are going through worse. Sorry if I made mine seem the same.  Clearly it’s not. 

Midlands20
Posted by

A comment was made that others have more severe than me.  Made me more isolated.  I’ll be fine.  HIV couldn’t knock me out and neither will this ‘pre-cancer’, if that’s what it is.  Sorry if I’ve upset anyone. Maybe should not have joined this group.  Arrghhhh. This is so frustrating!!! What to say without saying the right thing.  

Nikki65
Posted by

You are in exactly the right place, there are members on here that have been scared that they may have anal cancer, querying symptoms, some haven’t even seen a GP & others that have been staged with everything from AIN, through stages 1-3 right through to advanced stage 4 anal cancer, we all need the same support as whatever the diagnosis it’s a devastating one. If it does result in you having chemoradiotherapy then lots of people here have useful hints & tips to look after your skin etc., during treatment. 

I too have gone through a big part of this journey alone, I was widowed 10 years ago & have brought up my 2 girls on my own since then, I live 200 miles away from my family, although my dad came to stay with me during my treatment, I have good friends also but sometimes feel I deal with things better on my own & as I’ve mentioned before this forum was an invaluable source of support.

You've been through a lot with a HIV diagnosis also. I’ll be keeping everything crossed for you at your appointment & please keep us posted on how it goes. 

Nicola 

JackD
Posted by

Could you forget about whether other people have more severe cancers. Anything to do with cancer is bad enough. You have not upset anyone. Plus the fact, having to deal with HIV is brave. Please do NOT leave this group. This group is small, due to the fact that Sarah had nicely pointed out, anal cancer is rare.  I am sure this group wants you to stay with them. As time goes on, you could support others too. You are trying to finding answers to your questions and whatever knowledge you gain can be of help to other people with this cancer plus the fact, you can help other people to understand it like Sarah is doing. No matter how or tied you are about Friday. I shall be here online showing my support for you. 

JD
Midlands20
Posted by

It’s hard.  Especially when it’s been pointed out hat others have it worse than you.  Yes, this is true.  But this is my situation. It’s no picnic here believe me.  I’m dreading Friday, been 3 weeks of sleepless nights, feel physically sick, irritable and just want it over. 

JackD
Posted by

Three weeks wait for Friday? No wonder you are fretting.  We are all waiting with you, every step of the way. DO please let us know how you get on. I’m now going to bed, I’ll say a prayer for you. Will even light a candle for you in church if you don’t mind. Good night everybody, especially Midlands20. Thank you Sarah for making me more aware of this cancer goodnight and God bless.

JD
JackD
Posted by

Hello everybody. Midlands20, Sarah & Nikki.

just got home. Been thinking of you all . Im most definitely going to be rooting for you Midlands20 for tomorrow. Noticed you haven’t sent any more posts here. I do hope you stay here, it looks a good place. Please do not I’ve up on us. How are you all?

JD
JackD
Posted by

Just checking before I go to bed. Midlands20 didn’t come back.  Hope tomorrow will be okay for him. Goodnight everybody. 

JD