Hello Nic, How are you traveling? I've just read your thread & I'm sorry to hear of all your conflicting info. It's such a tough journey & so much is unknown, but I guess your teams are just trying to figure out what's the best for you in the long term. I certainly hope you've been able to make some good progress for a clear treatment process. I can only imagine how difficult it was to endure all this through the VIC lockdowns too. Just on a year ago I completed 6wks of chemo/radio in northern NSW for Anal Squamous Cell Carcinoma - T4. Unlike yourself mine was just inside the 'back end', with another internal lemon sized mass pushing on the vaginal wall & colon. Thank God my scan last April was clear as well as my biopsies in June & now I'm on the merry-go-round of checkups.  Well I really hope you're doing OK. Please don't hesitate to message any time. Love & hugs, Heids 💗 ... View more

Hello there HeyJude, I hope you're going well & continuing to move forward through your recovery. Am guessing you may have had some scans/biopsies at the end of last year??? How did you go? And are you coping a little better now? And also your hubby? I often think of you & pray you're all doing well. Sending love & hugs, & Happy New Year wishes & thanks that we're still here to see it! Heids ❤️ ... View more

Hello Terri, I hope you're both going well. Wishing you a Happy New Year... I think I can possibly speak for both of us that we're just happy to still be here to see in another new year! How are you traveling? I'm thankful to be doing pretty well. I think my biggest source of frustration is my mushy brain I'm putting down to the chemo!?!?!?! I used to be a personal assistant so am normally very organised, but these days I can't even manage to bring home everything on my shopping list that is in my hand! My 'front internals' aren't real good either but I have a scheduled 1yr appointment with my gyno In a few weeks so I'm hoping we can address some things. It was good to see my Colorectal Surgeon in early December for a checkup & to  get a good report as well as to hear him say "it's only been a year!". It made me think I may have had higher expectations for myself than was plausible?! All in all I'm extremely thankful for our progress though considering the mess I was in this time last year. Sending Loadza luv & hugs, & wishing you well for the year ahead. Heids ❤️ ... View more

Thanks so much Terri. I'm SO happy to be able to share my news with you. You're so right, there's many positives & even blessings to be found in a cancer journey. That may sound odd to some, but you really do have to see the positives above all the negative. I don't believe in coincidence... Everything happens for a reason, even a cancer diagnosis, & all along our journey there's been others who've needed a smile or a hug (pre COVID) or a listening ear to help them through too. That makes it all the more worthwhile. And yes, I am a very positive person with a deep faith, a super supportive & loving family & a few very special friends who've helped me in so many, many ways. I have SO much to be thankful for. Cute story re: your wedding pic. Isn't it just SO wonderful to have a loving, supportive husband. And lovely to know the Greenwood's too. Take care & keep safe. Will definitely keep in touch. Heids 😊 ... View more

PS. Love your profile pic! 😉 ... View more

Good morning Terri, Well it sounds like you had a lot of fun singing your heart out. Good for you. It's a lot more than many people would ever hope to experience. I have some encouraging news to share with you... My doc called late yesterday to say my biopsy I had back on June 23rd was all clear! Thank God! Such a HUGE relief. So for the next few years he & my radiological oncologist will tag team checkups every 6months with a few CT scans thrown in as well, then yearly thereafter up until 5yrs. If all the results are clear, that's when they'll declare me to be cancer free... Here's hoping & praying. I'm sure you can well relate to all of that. Nice to be able to share some happy news with you. Stay safe, & look after yourself. Heids 😊 ... View more

Good morning HeyJude, Just checking in to see how you're going this week. How are you feeling? I also have some encouraging news to share with you... My doc called late yesterday to say my biopsy I had back on June 23rd was all clear! Thank God! Such a HUGE relief. So for the next few years he & my radiological oncologist will tag team checkups every 6months with a few CT scans thrown in as well, then yearly thereafter up until 5yrs. If all the results are clear, that's when they'll declare me to be cancer free... Here's hoping & praying. Nice to be able to share some happy news with you. Stay safe, & look after yourself. Heids 😊 ... View more

Oh Terri! 😢 I relate to SO much of what you've shared here. Thank you for being so candid. I somewhat understand how narrow that tissue would be without dilators. We had to spend two weeks in Sydney in May moving my mum into full-time care & I stupidly forgot to take my dilator pack. So after only just two weeks without them, 5 months post treatment, I had to restart the process down a size & it was VERY slow going. I can only begin to imagine what the last 23 or so years has been for you in this regard. It's SO, SO beautiful you & your husband have worked out a new level of intimacy instead of giving up all together. He sounds like a wonderful, compassionate support for you. Yes, smoothies are my new afternoon tea! My colorectal surgeon explained that I'm someone who needs pith so my smoothie is orange & pineapple with a little mango & blueberries just for flavour, then a hint of vanilla yoghurt to polish it off. After the chemoradio I can no longer tolerate it for breakfast (instead I have one Weetbix with some Psyllium Husk - which is my new best friend - & homemade granola). So far it's working brilliantly. I just wish I'd known all this 30years ago! I had absolutely no idea my normal was not how it had to be. For the last 25 odd years my GP's have asked how my bowels have been, & I'd always answered 'normal' because they were MY normal. I now wish they would've rephrased that question to be "EXPLAIN your bowels for me"! Anyway, I'm extremely thankful to have that all sorted now. My radiotherapy treatment has brought on menopause. Initially I had occasional hot flushes throughout each day & night, but they seem to have petered off a little which is great. Those shingles sound like a real bugger. What a shame it had such a drastic effect on your already damaged nerves... the absolute last thing you needed. I'm a singer too Terri!!! The year you had your treatment my hubby (guitarist) & I were getting ready to attend Los Angeles Music Academy! I never did anything grand really - not that I really wanted to anyway - but what I did, I enjoyed. Your home sounds stunning, & a beautifully serene place to carry out your existence. We actually spend most of our year housesitting (not so much since COVID hit), but otherwise are based at the beach on the NSW north coast. It's been a beautiful, peaceful part of the world to be recovering so I am also extremely thankful & can relate a little to tranquility of your lake setting too. We are both blessed to experience such peace. Thanks so much for your prayers Terri, & ditto for you both too. Much love to you, and thanks so much. Big hugs back! Heids xo ... View more

Hello Terri, Thanks so much for sharing your story. You've certainly been through the the mill! I'm sure it was a very difficult journey with no one to talk to who truly understood what you were going through, but I'm SO glad you've come so far and are now able to share with us here. For myself, such was the placement of my cancer that I would've had no option for a recection, only a colostomy, & by the sound of things for you I'm glad that wasn't possible! I'm sure you're correct that things have come a long way since your treatment. I too ended up with severe 'saddle' burns because of my treatment zone of pubic bone right around & including the tail bone. It's pretty horrific treatment, & one of my nurses tole me it is the worst radiotherapy there is for a woman, so no wonder you ended up in hospital. I don't know what age you were when you had your treatment, but it's also harder on older women as their skin is more delicate & doesn't cope very well. Yes, 'toilet timing' is always a key factor nowadays, & I don't plan anything anymore in the mornings until the 'garbage has been emptied', but I'm sure it's a far bigger issue for you to try to manage. Isn't it amazing how different we are?... I need to be almost religious about what I eat & when I eat it so as not to get blocked up! I still have the urgency of needing to go immediately though when it does happen. It fascinates me how much I never thought of & took for granted in the past, like even just sitting down without having to think about how I approach that. And there's always new things that pop up, like straddling a puddle! My skin reminded me very quickly that I should've walked around it instead!!! That's wonderful you could help that lady through her treatment & give her someone to relate to Terri. Hopefully that helped you process some of your own journey too. It's very interesting you ended up with VIN & requiring a vulvectomy. My mum had Lichen Sclerosis about 8yrs ago which she ignored for too long (due to assuming it was just her psoriasis playing up), & it turned cancerous requiring her to also have a vulvectomy with radical reconstruction. My gyno said she will monitor me for the rest of my days to ensure I don't go down that same path, as Lichen Sclerosis can easily develop from trauma to that area like we've experienced from the radiotherapy burns. It's something that can be easily controlled with a steroid cream if it's detected early enough thankfully. This is not at all upsetting to me Terri - thank you for having the courage to share with us. I have a few questions, but feel don't feel obliged to answer them... How did you go 'internally' after the radiotherapy? I'm now almost 7months post treatment & my vaginal opening is still incredibly sensitive. I'm also still using 'dilators'. Do you recall what the time frame was before you felt 'normal' again down there? And did your treatment bring on menopause for you? If so, how did you find it affected you most? Thanks again Terri. It's so great to have others to talk to, & I know you understand that. Heids xo ... View more

Sooo glad to hear you had no head-hair loss - that's really terrific! The more 'normal' things can stay, the better I think. Most of my pubic hair has grown back, just not where the burnt skin is. But by the sounds of it your burns are nowhere near as bad, so you might be back to normal there before you know it?! You're doing SO well to be feeling better already - I was still hitting the wall at this point! Go you!!! Yes, I did still feel a presence of my tumour for a while. My colorectal surgeon told me they used to do a biopsy at 3months & 6months post treatment, but they axed the first one as there was pretty much always cancer cells still present in the tissue. By 6months they are mostly gone though, so the effects of the treatment keeps working well beyond the actual schedule. Yes, I think it's really helping me to talk about this stuff with you too HeyJude as someone who relates, so thank you SO much for getting in touch & listening to my stuff too. Big hugs, & keep doing great! Heids 🙂 ... View more