Hi, I seem to be having treatment at roughly the same time as you. I am 12 sessions of radiotherapy down so far and had the picc line for chemo. Was very sick from the chemo but they gave me anti sickness tablets-stronger ones that sorted that out. I have been reading many forums in preparation but this is the first time I have actually commented as felt too nervous to!! Like everyone else I am dreading the burns and am very worried.
I went to have a standard heamerroidectamy and then they discovered cancer. Felt like my world just came crashing down. Trying to stay positive as most of tumour was removed but need to have full treatment Incase of any rogue cells remaining.
Welcome to the forum and our little discussion about our bum cancers.
Your sounds very similar to mine, I went to go with piles too was sent for surgery and then discovered anal squamous cell cancer. I haven' actually started my treatment yet, still waiting for planning appointment.
Are you getting on ok with the treatment? I'e found this site a godsend , the girls on here are very supportive and you can ask them anything.
It' a very emotional time and it' nice to talk to people going thru the same thing. I found it very hard at first to tell people exactly where my cancer was, but I don't care now and I think people need to be more aware of anal cancer because it could so easily be missed.
Please keep in touch and keep us updated on how your getting on.
as I mentioned there is a lot of forums etc out there but this one seems most current. When I have read others with older posts from a few years ago I got really scared with the posts about the burns and side effects, however we must all remember we are all different. When speaking to my nurse/oncologist the machines etc are so much more advanced than even 5 years ago so the older posts aren’t always as relevant- which gave me piece of mind.
i must admit I did shed a tear when the first chemo drug went in knowing there is no going back and it was now real and starting. However apart from the one night of being sick - before new meds I haven’t had a problem with the chemo and coped with the bottle well. I got the strange taste in my mouth but no ulcers etc.We only have it for 4 days so it does go quickly.
As for the radiotherapy I do get my appt sheet and scribble them out after each session. I’m going for number 13 today. I do have a little bit of a sore bum but nothing too bad. After having surgery in November my bum is used to discomfort. When I initially read forums about having piles removed I was very concerned but I seemed to cope better than others so trying to have positive mental attitude that I will get through this!!
Where are you having your treatment?
I’m at Clatterbridge
its going well thank you! Day 8 today! Nothing much to report really. The radio is painless..just laying down and being zapped. It only takes a few minutes but I guess the more I have the signs of side effects may start to show. The 1hour prior to treatment and waiting to go in add to the visit which takes up a big chunk of the day. Have you any dates yet? I finish radio on 28th March and then see consultant 6 th May to see how it all went. Due to the size of my cancer I am concerned it will still be there at the end of my treatment and so not sure if surgery will be the next step...unless I am just being pessimistic. I have met some wonderful people just sat waiting for treatment and it makes you realise you aren’t the only one going through it and they are all as shocked as you are....nobody is except from this it’s really luck of the draw. Being positive and busy helps. I am still working half of the day....driving myself and going to rely on family towards the end should I require it. Let me know when you have news starting. Wishing you all the best..do keep in touch. Best wishes. Mandy x
My treatment is going well so far, only had sickness for one night and not really got any side effects of radiotherapy yet apart from my bum is a little sore but think it’s quite sensitive after op to remove piles. Not feeling particularly tired or nauseous either. As I understand it from asking in hospital things can start to get worse end of week 4 into week 5. Just trying to take it one day at a time. Hope things go as smoothly as possible for you.
The picc line is nothing to worry about, I have had no issues with it. Even when they put it in it doesn’t really hurt as you have injections to numb the site. You have to have it flushed once a week but they do that at hospital. I can sleep properly without it causing any issues.
i hope all goes well for you, the waiting does make everything much harder. Once everything starts time goes quickly and just keep ticking those days off!!
I don' have dates yet. I rang my nurse on Monday she contacted the hospital and the delay was because they were waiting for the results of the endoscopy, which showed nothing amiss at all.
I think your great carrying on with work and driving yourself and everything. I think you always make good friends in situations like these when your all in the same boat.
Look after yourself and keep us updated.
Same as you really, as a say a sore bum but I have found a gel that helps, it’s called StrataXRT, it’s quite pricey but when I use it, it sort of leaves a protective film on my skin that helps me be more comfortable and certainly helps with going to the loo. I just keep ticking the days off. I have my 2nd chemo bottle on Monday until Friday and then the picc line can be removed. Finding time going quite quickly but can’t wait until it’s all over!! Very impressed you are still driving yourself and working, hats off to you. Best wishes xx
yes they checked out the gel, the radiographers and my nurse and consultant. It helps me with the stinging around the bum. The skin really stings when it touches together but it gives me a little protection.
We all need to stay positive and remember we can do this xxxx
I had to ask for topical ointments. There is a prescription lotion that helps the skin heal. There is also a thick ointment that looks like vaseline (A & D ointment). You can't put the ointment on before treatment (I think it might cause the skin to burn more), but it really helped otherwise. It creates a barrier and makes it a lot less painful to go to the bathroom.
I'm sorry you have to delay the chemo, but they should be able to get you back to where you need to be real quick.
Take Care, Sheri
i found the name of the stuff I was given it was polymemn non adhesive roll you just cut off what you needed dampened it with water and basically put it between your lady bits and bottom cheeks (sorry to be so basic!) it kept your skin from touching and had a soothing effect!
I’m sorry to hear you are all suffering it’s just not nice.
There is however light at the end of the tunnel - I saw the consultant today and got my MRI results - it’s gone and I am officially in remission! Have to get follow ups every three months for a year then if all good will go to 6 monthly check ups. I’m feeling so relieved and happy and can truly say when I was at the stages you are all at I never thought I’d get to this day.
Please all be kind to yourselves and know that you can and will get through the next few weeks months.
Sending warmest wishes to you all Sandra x
Haven' been on for a while. I have finally been for my planning today. Picc line going in next Tuesday then my treatment starts on the 19th.
Sandra that lovely news about your MRI results.
And I'm taking notes on all the advice on what to use for when things get sore. I'e got my hostel booked for the last 3 weeks of treatment. So I feel a lot happier now.
We are all getting there ladies, soon be thru it.
glad that you ve got a date now , hope you sorted out the stirrup thing! I asked my radiologist and she said they never use them! So no need to worry about that! I ve just been prescribed morphine gell and it helps but I m sure that you won't need that until around week 4 .
Yes I sorted the stirrup thing, they were horrified I was told this information to the extent I almost didn' go for treatment. Everyone involved is aware now and the young Dr is going to be told.
Its' been drummed into me to tell them when things start getting painfull, I feel much happier about things now. Several of the staff have said to expect it to get really painful because of where it is, but that help will be there all along the way.
Will keep you updated,
Hi Mandy ,
sorry to hear you are suffering you should have a radiographer review person ,ask to see her and explain about your soreness etc they can prescribe many things and you don't have to pay because you should have a prescription exemption for 5 years because of cancer. Also you may find a cushion with a hole in the middle helps either from the Red Cross ior go on line and see if they are available . Sorry that your chemo has been stopped have they told you what to eat to get your platelets up? Eggs and banana s are good it worked for me ! Make sure the eggs are cooked not runny scrambled is good! It it does get worse of course but you will get through it and I m sure you ll have down days ,remember it's ok to cry sometimes as it's good to let it out!
Thinking of you .
That seems so odd to me. It seems like they would offer a topical that would help the skin to heal. I know it's good to just let it air (giggle). But there is a prescription hydrocortisone lotion/cream that helps the skin to heal. Unfortunately, it doesn't dull the pain, but it speeds along the healing process. You cannot use it prior to treatment that day. Is there a way you can get a second opinion without stepping on anyones toes? I'm not sure that the radiographers would know. I think they are more on the technical end of the treatment. Can you ask a nurse. Both physician assistants that supported my docs gave me misinformation or prescripted the incorrect strength on a prescription. My doc offered the cream, but I asked about the ointment which really shields the skin and makes a huge difference.
I had issues with my white blood count (still slightly low) and the platelets. My white blood cell count was 0.03 when I arrived at the hospital. They were able to stay on top of it daily. They gave me an injection for a couple of days due to the white blood cell count and also a blood transfusion. I had just completed my last round of chemo at the time; however, I still continued with the last two radiation treatments while in the hospital. They said it sometimes takes a year for the white blood cell count to get back to normal. I carry surgical face masks in my bag and if I happen to get around anyone that's coughing or sniffling I put it on. Flu season has been really bad this year so I'm paranoid of germs. Don't worry. They will fix you right up. I had an especially difficult time because I started out so ill and underweight. You will be able to fight it.
I was supposed to see my surgeon last week and would have had an update on the success of the treatment, but her office called and rescheduled 3 weeks out. I've had tummy issues that hit about half way through my treatment. I get really bad stomach cramps and nausea comes and goes. I've been unable to gain more than a pound and really need to put some weight on. Both of my oncologists said that I should not still be having these symptoms from the treatment. They have prescribed several different medications and nothing has helped so they referred me to a gastro doc. The doc I have been seeing is a colon/rectal specialist. So many doctors! I saw the new doc last Thursday after a 3 week wait to get in and she prescribed some antispasmodic medication. If it doesn't work (and it hasn't worked thus far), I will have the scope test (hopefully next week). They said it's quick and they will put me to sleep. I know the chemo had a party in my tummy and apparently they had a lot of fun. I'm ready to feel better! This has gone on for months and months.
Let us know how it goes Monday. You guys are always in my thoughts. Sheri
Hi I have just been diagnosed with Anal cancer on 6 March, all I know is that it is early stages, don’t know what type yet. I have a PET scan on Thursday and I meet the Oncologist on the 21 March I gues they will let me know then. Although trying to be positives about the outcome as it is early stage I’m stil very scared. I look the picture of Health can’t belive I’ve actually got this! Really embarrassing place to get it, is it best just to tell people straight? Obviously close friends and family know but I feel alone!
I have read this thread and decided to join, the treatment sounds scary to be honest I don’t know what to expect but I suppose when I meet the oncologist things will be explained?
i think you are all brave
welcome to our wee support group.
i was the same as you went to the doc with a sore foot mentioned tummy was a bit iffy and before you know it was getting colonoscopy mri cat scan and diagnosed.
It is a really scary time and I think we would all agree it’s the waiting that’s hard. Like you say it is embarrassing but I just called it Botty cancer I don’t like the “a” word!
I think for me it was the unknown once you get your diagnosis and then your planning session done and a start date for treatment I felt a bit better.
Weve all had slightly different treatment plans on here - I had one intravenous chemo followed by daily chemo tablets and 28 radiotherapy sessions - compared to some of the girls I didn’t suffer too badly from the chemo but I think we’ve all suffered from the radiotherapy side effects but there’s lots you can do to help - for now just take it one day at a time, be kind to yourself, let others help you and stay as positive as you can.
Im now 5 months post treatment and got my MRI results last week and was given the all clear - so there is light at the end of the tunnel.
For me this is a great wee forum as you’re able to talk to be people who know exactly what you’re going through definitely helped me feel less alone.
Hope you’ll keep in touch and let us know how you’re getting on and if you’ve got any questions sure one of us will be able to help.
Hi, Welcome to the forum. I joined here for advice and support and I think it will really help you. I am currently having treatment, 20 sessions of radiotherapy out of the 28 done and will have my second round of chemo today. It is all very scary when you get diagnosed and my mind was going ten to the dozen. The side effects you read about are not the same for everybody, I found the chemo manageable, no mouth problems, I was sick mid cycle but they gave me new meds and that was sorted. Only now on my 5th week are my bits getting sore but it is “doable”. I must admit when the dates were set and I got started I just kept thinking each day was then another day closer to the end. Sending my best wishes xx
Hi Lyndy Lou,
it is scary and the wait is grueling, but it should be smooth sailing with an early diagnosis. Without my knowledge my hubby told our friends that I had colon cancer because he felt like it was a private matter. So when I talked to the same friends about my cancer, they were very confused. It is a bit embarrassing, but it shouldn't be.
The radiation treatments are tyipcally quick 15 minute sessions. Most people don't have any issues with treatment for the first two - two and a half weeks.
I hope the time flies by for you and you have this behind you realy soon.
I’ve been thinking of you all at your various stages of treatment and wanted to let you see there is really light at the end of the tunnel- last year when I was going through my treatment and even for a good few months after it finished I could never have imagined getting back to my favourite beach in Lagos Portugal - but her I am yesterday I felt really emotional as we walked into the beach as this was the picture of my “happy place” I imagined during those months.
so you all keep strong and know that you will get through it to and get back to a ne normality y.
sendng you all have warmest regards Sandra x
Hiya lyndylou, good luck for Wednesday, take someone with you if you can, they give you so much information it helps to have another pair of ears, although they gave me loads of pamphlets and things too. Write down any questions you have and refer to them. Shouldn' be long for planning and treatment after that.
Keep me updated.
I will let you know how I get on tomorrow.
yes I ve finished but wasn't prepared for how harsh it was once finishing they did tell me on the last day that it gets worse before it gets better and they certainly weren't lying ! However I have turned the corner now there is definitely light at the end of the tunnel!
Sleep sleep and more sleep! And don't be frightened to take the pain relief ask if you need more or a stronger dose. Thinking of you take care xxx
That' the first week of treatment over but I'm a bit concerned about how I'm feeling already. My chemo pump came off Friday ( week1 done) but my mouth is really sore, even my throat. My stomach is playing up a bit, no diahorrea as such but I'm going to the toilet a lot and the wind is awful. Im' already felling very tired surely it' too early for all of this? Or perhaps I'm being a big baby. Not feeling positive at all at the moment.
a week down that’s great and I think his you’re feeling is quite “normal” there’s such a big relief that you’ve actually started but then the reality sets in.
I onlyhad one intravenous chemo then went into tablets but the first week my mouth was sore and it hen it settled down.
my hubby nicknamed me windy miller- so I understand that as well - I definitely found the first week challenging then I sort of got into a routine and it was wee bit better although I’ll not say it gets easier I think you just have to accept that for the next few week you’re going to feel ****. The tiredness is really draining so make sure you sleep whenever you can and let other people help you - it makes them feel better too feeling they are doing something for you.
i know it’s hard to stay positive and I did get very tearful some days - just keeping counting down the days I had a big countdown calendar and scored off ever day.
if anyone told me when I just stared I’d be out in Portugal just now I’d never have believed them - you’ll get through it.
take care and be kind to yourself you’re in my thoughtsts
Ohhh Sandra thanks for your reply, it certainly makes me feel a bit better. I couldn' remember any of you saying you felt so ill so early. Everything you've mentioned is like me. I do actually feel a bit better today and even managed a little walk with my daughter and the dogs. The family are looking after me, they won' let me lift a finger. I am glad to be getting on with my treatment and now looking forward to getting to the end.
Have a lovely holiday, wish I could join you.