Hello ladies

Its a really long time since I've been on here but thought I'd share my news. Yesterday after three years post treatment I got signed off from the hospital by my oncologist.

it is the most amazing feeling, relieve gratitude and happiness to be at the end of this journey, something that for a long time I could never envisage. 

i will forever be thankful for this forum, for being able to talk to people going through the same journey, sharing experiences, fears and having a sense of a safety net and making friends. 
I hope everyone is doing ok and wish you all the very best

sending positive thoughts and hugs

Sandra x

Hiya Sandra, 

That's fantastic news, I've also recently been for annual ct ans mri scans, then today got a letter from my consultant booking an appointment for this time next year for a check up, so that tells me my scans were clear. 

I was only thinking of all my friends on here, I am also so grateful for the help and support I got from you all, I'd have been lost without you all.

Sue xxx

Hi Sue

happy to hear from you and that's great news that they were clear and you can get on living for the next year

although most of this year has been totally crazy so far
this really is an amazing group of people. 
 

take care stay safe

sands xx

That's great news Sands!  So glad you are doing well, too Suzy!  

In the US they follow us closely for 5 years.  That's about the only good thing I can think of right now about the US which is in such a mess.  I was being screened every 3 months for two years and now every 6 months.  I saw my surgeon last week and she does the dreaded scopes.  She said moving forward we could go once a year, but in my case she prefers every 6 months and I prefer that as well for peace of mind.  My scans have been good as well, but my weight keeps dropping.  I had a food sensitivity test and the treatment certainly changed what I can tolerate.  No dairy, soy, egg whites, wheat, etc. so it's been really challenging.  
 

I joined a larger private support group on Facebook after we got through treatment, but it's not the same as with you ladies and all of you will always have a special place in my heart.  Lots and lots of sad stories so we are all very blessed because the treatment doesn't always work.  
 

XO Sheri
 

Well done Sandra, that’s such good news. It’s so good to hear and wishing you all the best for the future. My last two appointments have been telephone meetings. This is I guess to stop unnecessary visits to the hospital while covid is around. Last examination for me was October last year and since then not seem my consultant. This is worrying, as it was always good to be examined with the hope that if anything was felt you would be referred...so fingers crossed the covid situation eases and allows routine visits soon. Lovely to see a few of the girls posting and all getting on well...love to all. Mandy x

Hi Mandy,

My oncologist is only doing in person appointments for people currently undergoing chemo.  My surgeon has continued to see me.  It would be troubling for no one to check so I understand your concerns, but I'm glad you are continuing to do well.

xo Sheri

Hi Sue

I hope you don't mind me asking. I am just starting week 4 and am struggling with a really sore bottom, can I ask you what creams you used on and around the whole area but especially the bottom

Any help and advice will be greatly appreciated 

Thank you 

Janine

Hello all of you - Janojan, Jane Lucia, Sands, Gilliebean, Texas Girl, MandyDK, Suzym, Lyndylou67, Lisa1975 and Sunnyshine, original group!

Hello also Bum1, Nata02 Minty1, Taff, Halse and Farrahpops.

Thank you for this group. I has given me enormous comfort spending the last 2 evenings reading. 

Congratulations all of you on your remission(s) and release from regular checks and good luck Lisa1975 with recent events. 

I recognise so much of what you describe. Pre, during and post. 

I was misdiagnosed 3 years ago - consultant did not follow NICE clinical guidelines, did not do a colposcopy so when I did get diagnosed 3 year later  it was Stage 3. Not amazing. 

I had a 1.6cm tumour with 2 lymph nodes, 9mm and 11mm. Stage 3b.

Had a really scary time when at the treatment planning meeting in March 2021 I was told that the CT PET scan showed an SUV value light up in the liver which enormously luckily turned out to be benign and like Lyndylou67 a 1cm in thyroid showed up. Also got a non SUV 1cm lump in lung - not curently presenting as cancer, and not grown so they are watching and waiting. May be nothing, many stay benign but some can turn malignent, all a bit scary at times. 

Also had poor initial experience with first oncologist at the treatment meeting -  (I changed oncologists since) - poor bed side manner - told me me getting a private scan (for when the liver lit up and the NHS could not hit the 2 week scan target so I would be waiting longer) that it was more than 10 minutes of his paperwork. 

I was floored at the time given it looked like not great news and was send cartwheeling for about  a week before landing. It made me worried that an initial consultant had incorrectly not ordered tests as per NICE and now the oncologist was effectively saying my life was worth less than 10 minutes of his paperwork (my interpretation not I am sure his intent, he just had a crap bedside manner!) 

It all felt sloppy, ill resourced and worrying to be honest. 

So came in not fully trusting medical team, which is an additional lingering story, which to be frank still persists. 

I had a sweet (but tough) 50th Birthday in February when friends and family were on zoom, (good old lockdown!) and I loved it, but at the time was waiting for initial cancer diagnosis, so had this weird outside my head feeling that I didn't know if I was to get a terminal or non terminal diagnosis, whilst enjoying the lovely evening with people I loved. 

I am now post treatment (finished May 5th 2021) and have had my initial physical exam with the oncologist last week - all smooth.

Great! First hurdle jumped. 

Now waiting for the first scan to check the treatment worked, August 24th 2021 is the date of the oncologist meeting for the news. 

I wanted to thank you all. Reading your frank and open and warm hearted messages gave me comfort. I had similar pain, (peeing in a specially ran cold 3 cm bath early is a great habit, removed the pain, wish I had thought about the water bucket for number twos!)

Thank you for describing your worries and fears, which I share. Brilliant to see so many of you are in remission or signed off and that in of itself is also encouraging. 

I have had such lovely support from friends and family, for 4 of the 5 1/2 weeks they came to stay with me and look after me and yes the pain afterwards for 2 weeks is really extreme but it does get better. May yet have fond memories of walking like a penguin!

This part I am finding semi difficult. Post treatment, great I have passed the first physical but not yet had the scan to show the tumours have gone. 

I'm usually fairly cheerful, but mood has defo dropped, compbined with s faster happening menaupause night sweats, not sleeping and generally being a little more of a grump than I usually would be. 

How did you all manage during this time, when you are no longer getting treatment but in a weird limbo, wwaiting for the scan to say if it had worked?

Susannah

Hello Susannah,

I'm sorry that you have a need to be here, but I'm glad you found this group.  At the time we were a small group of ladies that helped each other through.  This was the only anal cancer support group I could find and loved the closeness of it.  I'm coming up on 4 years since diagnosis and am thankful that I've made it this far without a metastasis, although that fear has never left.  I think what keeps me going is a bigger support group that I've become addicted to.  I don't like it as much as this group because it is quite large with 337 members with ladies from the UK, Australia and the US.  There are maybe 30 of us that stay in touch on a regular basis.  But it does make me see how fortunate I am and makes me count my blessings.  I do wish I had found it sooner because there were things I knew nothing about (like pelvic floor physical therapy) and now would be a long road to get anywhere close to my private areas functioning again.  I really miss this group of ladies, but they chose to move on rather than think about it on a regular basis.  Many of us, like you, were misdiagnosed.  And almost everyone has lasting damages from the treatment.  A couple of the docs with the big cancer centers in the US are starting to steer clear of 5FU.  

Thankfully I never get anxiety waiting on the scans.  I had my last one this year, which makes me nervous not to have another.  I'm pretty sure I was in a daze that first year and it took everything in me just to put one foot in front of the other.  It never occurred to me that the treatment might not work which turned out to be a blessing to actually be that dumb.   ️  Recently I've had two intestinal blockages from the radiation damage.  Again no one has told me if there's anything I should be doing to try to prevent them so I've done a lot of research on my own.  I'm stuck at an unhealthy low weight and can no longer tolerate the foods that I love (also damage from treatment).  A lot of the group kept a food diary which I tried, but continued to get sick and found it much easier to have a food sensitivity test.  There are foods on it that never occurred to me might be causing the distress. 

I've started listening to music at night and keep it going with headphones throughout the night.  It keeps my mind from darting all over the place.

I know it's such a scary time for you.  I remember being at the exact place you are and wasn't experiencing any damage yet from treatment and didn't know what to do with myself.

I have not been checking my email on a regular basis but I will respond if I see a post from you.

Sending a big hug your way.  

Sheri aka Texas Girl