Shock diagnosis

Hi Dahlia, yes you use it from day one and it STAYS on the skin during treatment. My oncologist did not know about it but I knew the Leeds cancer treatment hospital trialed it and found it successful but I think cost came into the decision to continue. I asked them to send me the details to forward to my oncologist and she was absolutely fine about it. Other creams you have to remove before treatment. I purchased the largest tube and it’s spread very thinly. I did end up needing more due to the times I had to reapply after toileting but got the small tube and actually lasted me a good few weeks after treatment finish. 

Julie

Hello Dahlia68

A warm welcome to a forum that I am sure you would have rather not had to know about. We all have great empathy to w hat you are going through right now, we have all been there at some stage and remember it only too well.

I swung between telling people (anal cancer is absolutely nothing to be ashamed of) and then deciding that it wasn't my job to educate people that anyone who has been sexually active is at risk from this; I didn't have the capacity for explanations and just said it's GI cancer.  What was also strange was the less I knew people the more they wanted to know!

Whatever happens as a result of your scans, we are here to support should you want it, and what has already been pointed out nothing is off-limits on here - you are safe and amongst virtual friends.

Please let us know how you get on.

Big hug

Irene xx

I resonate with this.... when people ask, I tend to say rectal rather than anal. Don't know why, but it somehow sounds less embarrassing to me! What I've also noticed, is that when people ask me, and I say 'it's anal', every single time without fail, they say, 'sorry??' like they didn't hear me right the first time and I havd to say it again! And this has been my experience even in A+E when asked by few of the nurses  

I thought to say bowel instead, but that's actually a completely different type of cancer with different treatments and expected outcomes. My Nan had it a few years back. Such a minefield! Not that it's really anyone's business unless they're family/friends or directly involved with your care. It's sad that there's a stigma attached to such things, even if unintentional xx

Isn't it strange that a stigma seems to be attached. I can only assume that people jump to some sort of conclusion about a dubious sexual past. Sad.

I don't like the sound of A&E nurses, I hope you haven't ended up there frequently. Makes me realize that I really don't know what I'm in for at all.

Thank you so much to all of you, I feel more supported and very fortunate that such a group exists x

It's definitely a brilliant group... it's good to have people to talk to who understand. 

Don't fret too much. I won't sugar coat it and say it's all plain sailing. There's a lot to take in and for me atm, being two weeks into treatment, it feels like it's literally taken over my life! I ended up in A+E due to feeling really, really unwell. They give you a 24 hr number to call in case you develop symptoms of infection whilst on chemo. In this case, it turned out I have a water infection and am now taking antibiotics. You will be well taken care of, just take full advantage of any and all support you are offered along the way xx

Gosh that doesn't sound good at all. Was that from the radiotherapy or the chemotherapy do you think? I hope you are feeling much better now. How are you managing with the radiotherapy, it sounds incredibly challenging and long?

The radiotherapy itself is painless and quick (although waiting times vary), but it's 5 days a week for 5 and a half weeks, so pretty intense. You have to hold a full bladder each time, so that may have caused the water infection or made it worse... two weeks in, my skin is still OK. They gave me a big tub if E45, which I pat on thick after each session and before bed - you have to basically cover everywhere from the waist down to above the knees and pay attention to your creases and folds! Lol 

The chemo for most people on this regime is in tablet form, except for one IV treatment at the start. I'm experiencing pretty extreme fatigue. No matter how much I sleep, it's never enough! But that's not the case for everyone. We all react differently to treatment, but it's good to be informed of the possibilities. I have also had a lot of pain for quite a long time (I'm stage 3 and diagnosis took over 2 years!) ...now that I'm fully into treatment, my cancer pain has decreased significantly. Others reported the same. So hopefully that's a good sign that things are working!

Sorry for long message lol but I hope this information helps... I know I've found hearing how others are getting on is good for me in order to feel more prepared.

Ask anything on here, someone will undoubtedly have some experience to share with you!

Jenna xx

I am amazed about the two years to get diagnosed, that is shocking in itself. At least you are being treated and will hopefully have a good result and be pain free. It does sound like you need some luck and I hope your skin continues to hold up well. It's struck me, reading the posts on this forum, how differently everyone reacts to the chemo and the radio, some are exhausted, some are fine, some have terrible skin issues and others not so bad. I guess the takeaway is that you have to treat each day as it comes and be as kind to yourself as possible.

Best of luck moving forward and thanks for all the information xx

Hi Dahlia68 ,

Apologies for being a little late to the party so to speak but another warm welcome from me although I’m really sorry to learn of your recent diagnosis. 

Like you I originally went to have a polyp removed & a suspected internal ulcer repaired only to be told my surgeon had biopsied me instead & a little over a week later I had my diagnosis. 

You are at the worst point right now, kind of no man’s land, you’ve had your diagnosis but need more answers, hopefully you’ll not have to wait too much longer. 

Personally I’m 7 years post treatment & doing well back living my life. 

Please feel free to ask any questions you think we may be able to help with. 

Nicola 

Thank you Nikki65

I am in no man's land that's for sure! I haven't heard anything since I was told I had anal cancer 3 weeks ago tomorrow. I've had an MRI and. CT scan so, hopefully I will hear something soon.There is only one consultant in the trust who deals with anal cancer in this area.

I'm not going to lie, I'm still totally in shock and each day is a struggle at the moment. I'm sure you can relate. 

Of course the mind is very good at making us feel worse. I am now thinking I must have HPV and should I get a smear test to get my cervix checked out. They seem to stop these regular ones when you get over a certain age.

So much to worry about when you just want to get on with life.

I'm so sorry for everyone who has been through this or is currently experiencing this horrid disease.