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

My pleasure HeyJude, Well it sounds like you're doing really well, all things considered. And if you don't know what skin fusions are yet, then it sounds like you may not experience them at all?.. which is fantastic - I'm so glad for you. (Basically all my 'girly bits' fused together & I woke up 2 days after treatment finished to no vagina!!! I had to 'unfuse' them every day for nearly 2 weeks post treatment. SO painful, a bloody mess, stung like hell, & just not a nice experience to be tearing flesh on purpose! But thank God that's all behind us. Christmas & New Year's was a total write off). I'm amazed you were able to attend the gym! Go you!!! I could barely walk from the bed to the bathroom most days in the final week of treatment & the few after. I couldn't wear undies for 6 months, & have only just managed jeans in the last few weeks which is usually my winter staple. Our chemo program sounds the same. I had an initial dose of Mitamycin then Flurourocil through the pump in weeks 1 & 5. Did you end up losing all your hair, or has it just thinned? Mine thinned a fair bit so I looked like a 90 year old for a while! It hasn't taken too long to grow back though & is a few inches long now. I've always had long hair though, so shortish hair is a big change for me. My hairdresser has kept some length on the top & front & we'll just keep trimming the length 'til the new growth catches up. Your girls sound so gorgeous. Thankfully the're not old enough to totally comprehend what you've endured. The separation must've been really difficult for you too. We stayed on site at the Coffs Harbour Health Campus for weeks 2-6 which was fantastic as I just had to walk across the carpark to the Cancer Institute. The boys had their own room next to ours. We would've had to have travelled 3hrs a day otherwise, & there's no way I could've physically done that. It's really sad to hear about your hubby's health issues too. Cancer certainly would've been the last thing you needed. I have an older brother with major mental health issues so I understand some of the battles. It's fantastic your hubby's willing to be on meds as it seems crucial to at least get that kick start back to stability, & whether it ends up being a permanent thing doesn't matter... whatever is needed to keep on keeping on. We have friends here who battled to get their stock through the drought, then the bushfires, then near floods with the post-fire rains. Such dreadful times. I really hope your hubby continues to improve. Funny you haven't heard of Strata gel as I haven't heard of numit cream! The Strata gel was almost like a scotch guard for the skin to help alleviate some of the extent of the burns. I had to coat it like a skirt every morning after my shower. It retails for $150 for a 110ml tube!!! Thankfully I didn't have to pay a cent though. I've always been on the 'blocked' side of the spectrum which is what led me to requesting a colonoscopy from my GP to check out why I was spending hours on the loo every day just to pass tiny marbles. The doc that did the colonoscopy has been doing them up here for over 40years & mine was the first case of SCC in the anus he'd ever seen, so I don't think we're a very common breed. Thankfully I didn't have much diarrhoea issues at all, just the urgency of needing to go straight away. I was in my laundry putting a load on about a month after treatment finished & suddenly had to poop in an instant! Plopped straight on the floor! I look back now & laugh, but it was a little distressing at the time... just wondering how long I'd be in that state. Nowadays I still have a slight urgency but I can comfortably get to the loo in time. I don't plan to do anything in the mornings though, not 'til I've pooped & then I'm usually OK. Yesterday I did have a little 'surprise' turn up at Woolies but thankfully they have their own loo. Yeah, we have no sex life yet. We managed to keep going up until about week 4 of treatment, but that was as much as I could take & my hubby hated it knowing it was so painful. My colorectal surgeon warned me that some women end up having to be sedated for a Pap smear their internal scarring is so bad. Do you have to use dilators? Oh! And the itchy bum! Yes!!! That is completely infuriating. I remember being kept awake at night I was so itchy. Have they suggested you take Loratadine? It's the same component as Claratyne tablets which are an antihistamine. I found it alleviated the itch a little, at least enough to sleep better. Unfortunately the itching will continue for a while but it does go as quickly as it came. Glad to hear your breathing through the pain. I was SO thankful I'd already had kids & knew how to breathe through the worst of it. I'm not sure if the burns fade. I'll have to look into that. My bikini days are long gone so it doesn't worry me. That's quite amazing you had the history of abnormal cervical cells. I had HPV back in 2006 & my gyno took a huge biopsy off my cervix. We weren't sure if I'd be able to have any more kids it was so extensive. But we were thankfully blessed with our second son the year after. I'd also had it detected again in the few years leading up to my diagnosis, but at NO time did anyone ever suggest I should keep an eye on the activities of my back end. I reckon I had the SCC for years considering it's a slow growing cancer & the biggest of my lumps was the size of a lemon. The Eyre Peninsula is so beautiful. What a lovely part of the world for you to recover. I just hope & pray the drought effects turn around for you guys sooner rather than later. Please feel free to message any time, & please let me know how you're getting on too. It's also great for me to talk to someone who understands as I haven't had that through treatment either. So thank you. Big hugs, Heids 😊 ... View more

Hello Colin81, Thanks so much for your lovely message. I hope you are traveling well. Also, my apologies for my slow response. Things are going pretty well thank you, & am SO grateful my PET scan in April was clear. Thank God! I just had a biopsy last week & am still awaiting those results, but my doc said he has no concerns which is terrific. I'm so sorry to hear the chemo knocked you around so much, but hope you are going better now. Yes, one of the things I am most grateful for is that I have not required surgery as it would've meant a colostomy bag for sure. My doc was very honest with me right from the outset that there would not be enough function possible if the chemo/radio didn't do the job & he had to operate. Not that it's the end of the world to have a bag as they've come SO far with them these days, but obviously it's preferable not to have one if not absolutely necessary. Thankfully we're up on the NSW north coast so COVID has been almost non-existent up here. My consults have all been via phone since Feb, & I had no COVID concerns with the PET scan or biopsy. I hope you're safe too & going well now. Thanks again. Kindest regards, Heids 🙂 ... View more

Hey Jude! Thanks so much for your message... It's really lovely to hear from someone who understands! I REALLY feel for you & where you're at right now... How are you coping? I'm glad to hear you only had to have 30days treatment... That should help with your recovery time too. Did you have chemo through the PICC line pump, or the tablets? How's your family coping? Do you have a supportive & loving hubby? It's SOOO hard for them to watch on & not be able to do a whole lot to help you apart from the practical stuff.  To answer your question about side effects increasing post treatment... Unfortunately yes. I'll be honest with you, those two weeks post treatment were the hardest weeks of the whole process for me. The skin fusions were a really tough process. Have you experienced much fusing? Most of my skin healed fairly quickly, & once we were finished with the Strata gel I plastered the pure sorbelene cream on at every opportunity, so I'm convinced that helped greatly. It's hard when you're a mum with so much still going on at home, but it really is crucial that you keep up with your dressings. The vulval area & surrounds has taken the longest to heal of the external skin (I still have one little red 3mm spot that is in a high friction area that just won't heal!), & the vaginal opening is still SUPER sensitive & gets upset very easily. Thankfully my hubby is very patient & willing to 'talk to the hand' still!!! 😉 So most of my external skin is pretty normal, although totally scarred. Only just in the last few weeks has the feeling of  'stickiness' subsided from the most sensitive areas of my burnt skin. My bowel movements are finally back to a fairly normal mode of operation. Having said that I just had my biopsy last week, so that was definitely a little setback! The control has definitely improved, but was a slow process. I don't know if you've been told yet, but as soon as your skin is feeling better, start doing pelvic floor exercises as this will help both your bladder control as well as your bowel control. And drink plenty of water. Those larger stools that take longer to pass can be excruciating. I constantly found myself doing birth breathing until the pain subsided!!!  I finished my treatment on December 13th, had a PET scan in April which was clear of cancer, & I just had a biopsy last Tuesday but am still waiting on those results. My doc said everything looks good, all things considered & that he doesn't expect anything untoward which is awesome. It's completely amazing to me to have these results as I not only had the anal cancer detected just inside the anus, but I had a lemon sized lump growing internally that was pressing on my colon & vaginal wall. My radiological oncologist treated me from my pubic bone all the way around & including my tail bone. Was your area of treatment the same? Where abouts are you based? I'm on the northern NSW coast if it's close enough to catch up? Otherwise, please don't hesitate to keep asking questions & communicating on here. It's wonderful you have great community support, but as you say, no one understands like someone who's already walked the path, & I'm more than happy to help in any way I can. One of my nurses told me that pelvic radiotherapy is the worst that a woman can experience. It's definitely the hardest thing I've had to endure physically - harder than childbirth, 'cause at times you question if it's ever going to end especially so the months start rolling on! Sending big hugs, & praying you're coping OK. Much love, Heids xo ... View more

Hi there again S, My apologies for disappearing for a while. Just want to check in & firstly ask  how you're traveling? Hopefully you're continuing to improve. 🙂 I'm going pretty well, all things considered. I'm SO thankful my PET scan in April was completely clear of cancer, & I just had a biopsy last week so am awaiting the results, but my doc said he has no concerns which is just amazing to me... I keep pinching myself. Thank God!!! It's such an incredible relief. Sending big love, Heids 🙂 ... View more

Apologies for my very delayed response, but thanks so much for your warm welcome Kate... greatly appreciated. 🙂 ... View more

Yes, I am extremely thankful for my beautiful family & recognise how blessed I am to have such great support from them. A few people we came across during treatment were not so fortunate & got treated really quite badly by their dismissive partners, so again it causes you to take stock.   We're from the NSW north coast & spend most of our year housesitting in this region as well as south east QLD. We have a little shack at the beach which is our base when we're not out & about. One of he earliest fires in the season at Shark Creek came within a few kms of our little town, but the fires stayed north of us thankfully. Where abouts are you located?   Wow S! What a huge journey for you. It's wonderful to hear you are cancer free so far - congrats! 🙂 My colorectal surgeon who I had my initial colonoscopy through has warned us that if my treatment does not clear all the cancer then I will need a resection resulting in a colostomy bag. They initially detected my cancer literally just inside the anus, but there was also a lemon sized growth pushing against the colon & vaginal wall. I can't feel that discomfort anymore which is wonderful, so we're hoping & praying the treatment has been successful. But even if I do end up having to have the surgery, I'll be thankful just to be alive! I have a lovely friend who is a clinic nurse & she said I need not fear having a bag if necessary as they've come such a long way with them, & many people have them but you'd never know. I hope you don't mind me asking, but how are coping with it all S? Was it a difficult transition for you, or relieving to have alleviated a lot of your risk?   Thanks SO much for chatting - I really appreciate it.   Heids 🙂 ... View more

Thanks SO much for your warm welcome Kate - it's greatly appreciated, bless you!   Cheers,   Heids 🙂 ... View more

Thanks SO much S for replying - it's lovely of you to take the time to message me. And thank you for your empathy. Are you also a cancer sufferer, or have been?   I am doing very well thank you. My treatment of 6wks radiotherapy with a 96hr chemo pump in weeks 1 & 5 finished on December 13th. I don't know if you're familiar with pelvic radiotherapy, but my beautiful nurses revealed to me at the end of my treatment that it's basically the worst radiotherapy a woman can endure - it's pretty horrendous, & I really struggled physically through the two weeks post treatment. I'm still doing two small dressings on a few stubborn spots, but the majority of my skin has healed very well, thankfully. Internally is another story... still very red & swollen, & I don't have great bowel control yet, if I ever will?! & trying to reintroduce certain foods seems to be proving very slow going with regular 'upsets'! But mentally I'm very strong & at complete peace with it all.   My hubby & sons have been truly amazing & an incredible support. They are also very strong & extremely encouraging & caring. The whole process has certainly made us count our blessings & be thankful for every day. Besides the first week of treatment we stayed in accommodation on the hospital campus for the rest, & it was a beautiful opportunity to connect with others going through various cancer treatments as well as hospital procedures, etc. We shed tears, laughed & hugged people we may never see again, some of whom lost everything in the bushfires & then we're facing serious procedures. So it may sound a little odd, but we are all hugely thankful for our journey so far, & thankful for the opportunities it's brought to be able to help others in ways that otherwise would not have been possible.   So now we await a PET scan some time in April, then a biopsy in June to determine whether any surgery is required.    Thanks again for your concern,   Heids 🙂   What is your journey S??? ... View more