can I ask did any of you have pain relief prior to treatment. My cancer was discovered through a failed anal fissure repair and 2 haemorrhoids were removed. Since then I was given tramadol which I used sparingly as I was afraid of it. When I sure the Oncologist on Wednesday he said just use it and they would ween me off when the time came. So I started taking 2 every 4 hours which did help with the pain but I yesterday I could hardly keep my eyes open, I had a headache, felt sick and couldn’t go to wee properly when I looked it up these are common side effects of tramadol. So today I’ve backed off a bit and will phone the hospital tomorrow for advice. Have any of you had different pain relief and if so what?
i won’t have my treatment for another 5/6 weeks and so fed up being in pain!
treament sounds the same, mitomycin given via syringe on the first morning followed by radiotherapy in the afternoon. Then chemo, fluorouracil, given via a pump at home for the following 4 days as well as radiotherapy everyday. Then 4 weeks of radiotherapy only. The last week chemo reintroduced with radiotherapy.
What stage cancer did you have, I’m stage 3 as I have it in a couple of lymph nodes in the same area.
planning session will be in next 2/3 weeks.
i will phone hospital tomorrow to ask about another painkiller I don’t think I can go the next 5/6 weeks without anything especially as I’m still working a the moment.
Hi Lynne, yes same treatment although I have 28 sessions of radiotherapy. Mine was a TX N0 M0 no Mets, but it was poorly differentiated which means it' an aggressive cancer and would probably come back. At first my surgeon was just going to do more surgery to catch around the margin but MDT changed that, although he did say if I preferrd surgery it would have been aggressve and I thought I'd have poo problems later and even then they couldn' t guarantee it wouldn' t return. So here we are!
Hi I know this has nothing to do with this but, my family has passed down cancer from both sides. It may even come to me. I was thinking about cutting my hair off for cancer? Do you think I should?!X
yes another sleepless night!
I had to look up T N M that has not been mentioned to me, I haven’t a clue what size tumour I have. I had to ask the oncologist what stage was I at, and that’s when he said I was stage 3 which I must have looked shocked because he said well that’s better than stage 4.........every cloud I suppose.
im not even sure I have squamous cell, I know I just have it! Try and avoid the c word I can’t get my head round it.
i suppose I am just wanting treatment to start the hanging around is doing my nut in.
wish you all the best for the coming week.
I think most of us with this type of cancer feel bad during chemo treatments, although my nurses have said that everyone reacts differently to chemo. I wasn't in tiptop fighting shape going into treatment. The surgeon nicked my lung putting in the port and my lung collapsed. It went undetected for about 6 days and spent a week in the hospital prior to treatment. What I remember most during the beginning of treatment is the change in the way foods tasted and always being nauseated. It really helped to rinse my mouth with a saltwater solution throughout the day. I was/am able to control the nausea with medication. I don't remember being exhausted in the beginning, but I didn't try to do much during that time. I avoided going out in public because of the wind. There was no control over it or my bowels. That has gotten better, but it is not at all like it was prior to treatment.
Sandra, I was curious if you still had tummy issues and if that gets better in time. We are trying to figure out what is causing mine to continue. In some ways it's much better but in other ways it's much worse (or maybe I'm just tired of it).
I'm so glad you have family with you, Suzy. My daughter was an angel throughout my ordeal. I hope you have a good week next week. And you are not being a big baby. This is tough stuff.
Big hug, Sheri
Hi Lynne, here I am 4.39 in the morning answering you lol, I wake up at odd hours!
I tend to call in bum cancer, they didn' tell me straight away exactly what type I'd got, the oncologist told me mine was 2.5cm x 2.5 cm which was bigger than I first thought.
The waiting is the worst part of all this, you get to thinking they'e forgotten about you. I rang the hospital a few times and nagged or rang my nurse to see what was happening. It doesn' help when these things fall on bank holidays...that holds things up. Hope you don' have to wait too long Lynne.
How are you live?
I will try the salt solution, although I do have a mouthwash from the hospital and my mouth is improving. My stomch has settled a bit so they wind has died down too. I even pumped when I got up from the bed in treatment on Friday.. . I was mortified lolol. Do you think they get that a lot...i hope so lol makes me feel better!
Yes my family have been great I was planning on doing a few jobs yesterday to motivate myself a bit but every time I went to do them my grandkids had done them for me!!
Compared to you I think I've had it easy so far, hope you are getting there and feeling a bit better.
I'm glad your tummy is settling down a bit. My nausea/tummy ache comes and goes all throughout the day. I had an upper GI last week, but it takes 8-10 business days to get the results. I hope to have some answers and a plan in place to feel better soon.
I know how you feel! I'm sure they get it a lot and think nothing of it. I couldn't hold it in front of my 16 year old grandson (he is currently living with us) and I so hated for him to have that memory of me. He saw worse, much more embarrassing stuff while I was sick, but he was so sweet and caring and not bothered by it.
So sweet of your family to take care of you. That leaves more fun time to spend together.
Will keep you in my thoughts. Big hug, Sheri
what a day!
i have managed to get a change in prescription and now have some oral morphine and lashings of laxatives!!!! Let’s see how this goes. Can’t bear to think about constipation after bum surgery!
Apart from that have been very weepy and I don’t know why...is that usual?
Glad you'e got help with your pains. I've found that the help is always there, so don' be afraid to ask. Yes I find I can have bouts of being weepy for no apparent reason, remember what your going thru is no easy or simple thing and again don' be afraid to have a cry and feel a bit sorry for yourself. The least little thing can set me off, a word, a programme on the telly ,anything. The family are used to it, only our dog Murphy struggles with my outburst lol.
I know about the constipation after surgery, I struggled, it' horrible, like torture.
Had my 7th treatment today, a lovely nurse, a bit older than the norm full of advice, she asked me if I'm sore yet, I said don' worry I'll soon moan when I am, she said it's not called moaning it's called keeping us informed.
aww thank you for your replies couldn’t answer last night as I started crying again. So glad I found this little group.
today is another day and hopefully a different one!
take care Lynne xx
Sandra I didn' realise I was quarter way thru, that makes it sound really good. So far so good today , although it' s still early, but my mouth is much, much better. Mandy you lucky thing only 3 to go, nearly there xx. So you will be finished in time for Easter!
I'm looking forward to the break from that journey for 4 days. I'm booked into the hostel after that for the rest of the time, but I'll see how I feel. It might be fun to stay with other people who are going thru the same thing.
Always thinking of you all,
you must look at it that tears are good! It’s a way of expressing how you feel and letting it out. I am feeling less tearful today though. Easter weekend will give us a break from the hospital visit and time with family and friends. I plan on doing little and relaxing though. All will be finished for me Thursday just in time and although I still feel sore, tired and apprehensive.....it’s another part of the journey. It’s great to read all the experiences from the girls on this website. I have enjoyed having you lot along with me on this journey. Have a wonderful Easter weekend and thinking of you always. Mandy xxx p.s. I’ll keep,you posted with life after treatment along the way... xx
glad that you will be finished by Easter, just to take time out and relax and eat chocolate for breakfast!
do you know what happens next?
i am feeling ok today, no tears just tired. Do any of you sleep badly, I do but only since this came along.
have got an appointment on Thursday for CT planning session, must have got a cancellation, to get one that quick! This is the final step before treatment isn’t it?
I was just glancing over all of the notes and saw Suzy's. Suzy, bless your heart....you have been through a lot. Do you mind if I ask you if yours is HPV related? I was curious because you were told it was agressive and would probably come back. I have not been told that although I imagine that is the reason they monitor so closely after treatment. It doesn't bother me to tell people that I have/had-hopefully HAD- anal cancer but I am embarrassed that it is HPV related. I don't understand how it got there, but I suppose that's the last thing I should be fretting over. The American Cancer Society's website has some unsettling statistics; however, the MD Anderson cancer center in Houston has started using immunotherapy with good results. I think that the statistics are going to turn a corner. This is the first change of treatment that the FDA has approved in 48 years. I find it interesting that it is the same treatment internationally.
Lynne, I can't imagine Tramadol touching the pain. You are going to want something stronger and you should take it around the clock or at a scheduled time so that you can control the pain. My medical oncologist said to take probiotic and stool softeners with the pain meds. It is extremely painful if you get constipated. Of course it is also miserable to have diarrhea so you have to figure out the dosage that works for you. I base mine on what I've had to eat that day. I was so heavily medicated during treatment that I wanted to sleep all of the time. Now I usually just sleep through the night with an occasional nap. I wouldn't be able to sleep without Melatonin. I was afraid of it, but a nurse explained how it works and encouraged me to try it.
Sandy, It makes me happy when I think about you having fun in Portugal. What a wonderful way to celebrate.
Gilliebean, I'm thinking of you.
This is such a wonderful website. I could not find anything like this in the US.
I hope the week flies by for everyone.
Group hug, Sheri
Would you believe it but I actually slept all night last night, must have been through exhaustion!
I have had a PET scan and CT and MRI, not sure why I’ve got to have another CT scan tomorrow, but I just do as the Docs tell me. In fact the PET scan showed up not only where the cancer was it also showed a cyst on one of my ovaries, therefore Gynae are going to have a look and next week I’m having a ultrasound on my thyroid as there was something there they wan to look at! The nurses did say that the PET scan is the mother of all scans and they wouldn’t be doing there job properly if they didn’t investigate everything unusual. I just put my faith in them to do whatever.
are you relieved that you only have a couple of more treatments to do? I didn’t realise you had to wait 3 months to find out if it’s worked, more waiting!
I suppose as everyone keeps telling me saying little steps, one day at a time. Not always easy though.
Hiya Sheri, Lovely to hear from you. In answer to your question o don't know if mine is HPV related, all the stuff I've read suggests most anal cancers are, I did ask my surgeon initially where it would have come from his answer was " it's just one of those things". I have looked at CBD oil, I think my daughter would like me to get it. I'm on day 9 today of radiotherapy, no real pain yet,, I'm just aware something is going on slightly. I still got anti sickness tablets, tried to leave them off yesterday but felt nauseated all day, ended up taking one at tea time. My mouth has stopped feeling furry but I'm left with ulcer type sores dotted around my tongue and gums, so painful. Have you finished all your treatment now Sheri? I also have loved having our little community , I tell my daughter about you all. Wouldn't it be nice when we're all thru this and better to have a get together somewhere? Sue xx
My pain medication has now been changed to liquid morphine, only just started it so building up my resistance to the drowsiness. So far so good and be used with the aid of laxatives.
Interesting about cannabis oil, although it’s illegal in the UK. I’ve read stories of people who have after conventional treatments have turned to it in desperation in and it has 'cured' them, trouble is we all have to be careful with fake news nowadays. CRUK certainly doesn’t advocate its use as it’s not been proven. I found that out from this site.
hope all is going well with treatment and you are right this little group has been abreast of fresh air.
so sorry to hear that you have a sore mouth, is eating difficult or do you just not want to eat.
Yes it is planning tomorrow....eek!
meeting up what a great idea, I’ve only been on here a couple of weeks but all the help and support I’ve had from you all has really helped me, especially as this cancer is rare and it’s a job to find anything online.
Hi Sheri, As always you give such sound advise which is so appreciated. I’m going to investigate the meds you mention and see what is available... I love this little group of bottom buddies....it’s been such a warm comfort during my journey. May it continue! Love to all..Mandy xxx
Awh that’s made me smile Mandy “bottom buddies” did you get my wee private message I sent you about stingy peeing?
I’m in Scotland just outside Glasgow think a Texas trip sounds the best lol
just at airport waiting for flight home!
hugs to you all Sands xx
I think it would be lovely to have a get-togehter. I will have to save my money for that unless you guys want to come to Texas.
I'm glad you are feeling ok thus far. The time will go by faster than you think. My radiiology oncologist said most people don't notice any difference for 2 - 2 1/2 weeks. The last 7 days are the hardest. The mouth ulcers sound so painful. It must hurt to talk as well. The salt water rinse doesn't help? I think I used baking soda, too. It really helped me almost immediately and definitely within 24 hours.
I finished treatment 10/10 and the docs say I should not still be feeling this way. The oncologist said mine was not your typical case because it was quite large and in the wall. They got all of the cancer cells which is wonderful; however, they were not able to wipe out the tumor completely. It is still blocking the exit a bit. I also have an ulcerated spot on the inside but close to the exit which is really painful. The doc said it would take a long time to heal because of the location. I'm waiting on biopsy results from the upper GI from last week. The docs thought I might have an ulcer, but they didn't find anything other than acid reflux. I get really intense tummy aches throughout the day to where I'm doubled over in pain. I didn't have the tummy aches during treatment and they have gotten worse over the last month. So it must be food related. And I'm still having bathroom issues where I have to make a run for it. It's happened to me several times while out and so I'm not anxious to go anywhere. I think once we find out what's causing the tummy aches we will find a medication that works. I feel better if I don't eat, but I cannot loose any more weight. I look like a chicken. The protein drinks make me barf but they say they really work for gaining weight if I could just get them down. Chug-a-lug My youngest daughter is getting married so I have a little over a year to get in shape.
I apologize if I've previously told you all of this.
So what did you decide about clothing? It feels better to wear skirts and dresses don't you think?
You are always in my thoughts. Sheri
Well I've had a bad couple of days, not all due to treatment tho. Thursday I had my 10th radiotherapy session at 9.45am, then from there went up to chemo to get my picc line flushed and bloods taken.... I came out of there at 2pm, after I walked out and told them to forget it! The 2 appointments were 5 hours apart, I asked the nurse to change the time the week before but she said it would be fine just to pop up when I'd finished in radiotherapy.
My mouth has only just cleared up, Saturday night the diarrhoea started! Terribly stomach cramps , watched casualty ( my fav programme ) sitting on the toilet! My ensuite looks out at my tv with the door open lol. My bum was super sore afterwards and where I'd had surgery started bleeding. Sunday was much better, but how the hell am I going to manage thru this treatment, I'm so scared
Clothes I've bought some loose fitting, easy to wear trousers ( too cold here for skirts) and I've got loads of Bridgette Jones knickers lol.
I'm sorry to hear your still having so much trouble, I can understand you not wanting to eat but you have to so we can find you when we all come over for our get together! I've never been to Texas it will be an adventure, you will have to help us with where to stay.
Love Sue xx
Good news about your treatment starting soon. That date will soon be here.
Get your stuff ready, I tend to be super organised, I bought loose trousers, cotton knickers, and loads of Simple products, plus some tena lady for when I'm smothered in cream lol. Even some aluminium free deodorant .
glad you found our little group - everyone is amazing on here so good to have people who understand exactly what you’re going through.
hope you get on ok with your treatment and ask anything you want hopefully one of us will have an answer.
warmest regards Sandra
Welcome to this little group, I only joined a couple of weeks ago and have found it invaluable. The girls on here have really helped me. Also it helps knowing that you are not alone.
I have yet to start treatment, I start on 17 April. Hope yours is going well and not being too unkind.
Sandra, Mandy and Gilliebean, phew! Treatment now over must be relieved. I think I would like to do what Sandra did and go away, hope you had a great time.
Sheri, so sorry that you are still having problems and I hope they can sort your tummy problems out soon.
Sue loose clothes and big knickers already bought, what cream are you using?
Morphine is much better that tramadol so have been feeling better in that respect. I have an ultrasound to do this week to look at my thyroid, but apart from that I have a hospital free week from the cancer. Due back at work today but need to clear a few things before I go off again when treatment starts. I find going to work and interacting with my work mates keeps me sane as cancer can be all consuming can’t it?
take care everyone and let us know how you are doing, by the way I call you my botty girls!
Had a really lovely time in Portugal can’t actually believe that’s us back and if you’d told me few months ago I’d have been away wouldn’t have believed you!
big knickers are a must and my specialist nurse recommended creams for me and also had morphine gel which was good - I was ok for the first few weeks so hopefully you’ll be the same.
I don’t know where you live I’m just outside Glasgow all the other girls seem to be doon South - my treatment seems to have been wee bit different as I only had one intravenous chemo then it was tablets daily in conjunction with my radiotherapy.
Im not sure if I’ve put in previous posts but we have a Maggies Centre at the Beatson hospital which has been just wonderful for me - lots of support and just a safe space with other people who know exactly what you’re going through.
Best advice I got be kind to yourself, don’t put up with pain and sleep whenever you need to.
take care and keep in touch
Welcome to our little group, we all have the cancer on here, I've found the girls on here a great help. I' just into my 3rd week of radiotherapy, I too had chemo on the first week via a picc line. I found that week I was super tired but that' gone now. And I had a really sore mouth but that' ok now too. I' just beginning to feel the effects of the radiotherapy on my bum, it' not been too bad so far, although I have bouts of being super itchy! The only cream I'm using at the moment is Diprobase, but I'm due to see the Dr. on Thursday.
What can they do about the lessions they found in your liver? Hope you get on ok, any questions please do not hesitate to ask.
Hi ladies and thank you for your kind welcome. It is so nice to hear others in the same boat.
My mouth is sore with thrush, hospital were great and gave me anti-fungal tablets and a mouthwash so hope that it starts to feel better soon.
Day 6 of radio today, all fine with that.
With regards to the liver lesion, my oncologist said that I need to remain focussed on my current treatment, (chemo should help the secondary) then 6 weeks after I finish they’ll rescan me and decide on the plan of action then.
He said that there are a few possible treatments including liver resection(which I think I’d prefer... cut it all away my liver will grow back!) so a waiting game really.
Anyway you all seem very upbeat on here so that’s fab! I intend to try to be positive too.
By the way, I live in North Wales and attend Clatterbridge Cancer Centre, where is everyone else?
hope you had a good Easter. Pleased your planning has beeen organised. It won’t be long and you’ll be starting and it then feels such a relief. My treatment is over now. The next stage is waiting again to see the Dr before the scans which I am told is around 3 months after treatment, then again 6 months after. I feel tired but it’s manageable... the pain in my bottom is probably the worse which happens towards the end of treatment, together with being sore when you wee. My best advise is organise a small bucket or trug to sit in to ease the pooing if you find it sore in this area...some warm water to poo in and pour down the toilet afterwards, although sounds undignified is wonderful for easing the pain plus a jug to pour water towards the front end when you wee as it can sting towards the end of treatment when weeing....,,it’s still like it now so I’m hoping this will ease in a week or so..fingers crossed.
i will be thinking of you and wishing the best during your treatment. Take easy, rest when you can and be kind to yourself. Mandy xxxx
Hiya Mandy, I'm a firm believer in having something nice to look forward to. I'e always said this to my kids. The kids bought me a helicopter ride over Snowdonia for Christmas, I'm hanging on to that until my treatment finishes and I feel better. Soooooo looking forward to that.
We we are all in this together! Everyone is on the same journey although we are at different parts of treatment. It’s been such a good group to keep in touch with. Any concerns ask, there will always be someone who has had something similar so they can give advise...first hand.
My treatment I.e chemo and radiotherapy has finished. It’s early days, no follow ups yet. I have dr appointment early May and 3 months after treatment I have MRI.
you sound like you have a good plan in motion. The liver grows back so cutting a piece off and it growing back sounds good. Staying positive, laughing a lot and keeping busy helps.
keep in touch and I’ll be thinking of you....Mandy xxx