Together we will beat cancer

Donate

Anal squamous cell cancer

8 Apr 2018 17:03 in response to L27

Oh that sounds rotten! Poor you! Hmm I wonder why you didn’t get the 4 steroids as before? I did feel very poorly but was not physically sick. 

I can’t think if I’d of seen you or not, I didn't hear the bell! 

I was at Laurel from 5.30 that day, was a bit late for my 5.45 time slot. Left about 6.30.

Not been into Maggies at all, keep planning to but as my appointments are later, we get there half an hour before and just head straight home. Luckily not had gaps between appointments, may go this Friday as I have my picc line flush and redress but then have a bit of a wait before my radio. 

Lisa xxxx

Anal squamous cell cancer

8 Apr 2018 17:09 in response to Lyndylou67

Hi Lynne,

Glad you’re doing ok, the wait is difficult but just use the time to get prepared, stock up the cupboards and do your housework etc (I can’t relax if the house is a mess!) 

But also rest, you’ve got a tough couple of weeks ahead, so get yourself as fit as possible before hand.

This group seems brilliant, telling you how it is, lots of hints and tips and no scare mongering! 

Take care, lots of love

Lisa xxxx

 

Anal squamous cell cancer

8 Apr 2018 18:30 in response to lisa1975

Girls I can not recommend the Maggies highly enough I started going to the Glasgow one  just as I finished my treatment - I love it.

ivd done a few of the sessions Menopausal Work Shop, Look Good Feel Better was amazing and a lovely goody bag of makeup/ I felt a bit reluctant going as hadn’t lost my hair or anything but it was really lovely and a good confidence booster.

After I finished my treatment I did the 7 week Where Now course I felt it really helped me as I did struggle after I had finished - we were a small group of eight and we are still in touch and planning a catch up soon.

The Maggies was a real lifeline for me and I cant praise it enough so if there’s one near you I would definitely recommend.

hope you all have a good week take care and be kind to yourselves 

Sands xx

 

Anal squamous cell cancer

8 Apr 2018 19:15 in response to lisa1975

I'm with you, Lisa and Suzy.  That is the furthest thing from my mind.  I'm looking forward to the day that I don't have to have my bum examined, but I imagine that is several years away.

Lisa and Sue, I was very ill and didn't follow their instructions of drinking tons of liquids during chemo.  I think you will feel better if you flush it out of your system.  You will be in my thoughts and I'm hoping the week zooms by for you both with little discomfort.  You guys have chemo the third week?  I had mine the first and last week of treatment.  Suzy, I loved being in the hospital.  It was comforting knowing there was help right there.  They sent me from the hospital to rehab to help me get more stable on my feet and I did not like it there and regretted that I agreed to go.  

Sands, that's great news!  I also feel like something is there and blocking and it takes an eternity for things to get going even though it's happening.  Those are the times that I acutally have warning and time to get to the potty.  Guess that's a forever thing.  I love your posts.  You are always so happy and upbeat.  I just want to crawl under the covers and not come out.

Mandy, I'm not in any trials.  None were mentioned.  I hope to join one should I have a reoccurance.

Best wishes to all, Sheri xx

 

Sheri xx

 

 

Anal squamous cell cancer

8 Apr 2018 19:53 in response to texasgirl

Hi Sheri,

We have chemo in week 1 and 5, so sounds the same as you, so I’ve got a couple of weeks before I have it again but dread it as I felt rotten. Should count myself lucky though as you and L27 were very unwell! 

 

Lisa xxx

Anal squamous cell cancer

9 Apr 2018 01:54 in response to lisa1975

Hey Lisa, some people tolerate it better than others.  I've always been a bit of a wimp.  :  0  )  

This article explains the stages.  I still find it a bit confusing.  https://www.oncolink.org/cancers/gastrointestinal/anal-cancer/all-about-...

The doc that called to give me my biospy results said that this is a better cancer than rectal and that once treatment is finished that's usually the end of it because the treatment is so successful.   It's a bit brutal though.  

When we must.....we can.

Sheri xx

Anal squamous cell cancer

9 Apr 2018 21:11 in response to SandsJ
Hi Sands, As you are further ahead than most of us can I ask you or do you know about if we have to tell travel insurance and if there has been a hike in prices when told?. Not sure about the whole situation. Many thanks xxx

Anal squamous cell cancer

9 Apr 2018 21:57 in response to SandsJ

Hi,  I finished my treatment on 19th January.  Is anyone else at this stage and can tell me how your feeling now.  Thank xxxx

Anal squamous cell cancer

10 Apr 2018 03:43 in response to Janelucia

Hi there,

Anyone having tummy aches other than the standard ones and if so, have you found a medication and diet that works?  My stomach pains are almost unbearable.  I've tried 4 different prescriptions but nothing prevents them.  More scans scheduled, but I think it's just from the treatment.  6 months out.  

Sheri xx

Anal squamous cell cancer

10 Apr 2018 08:13 in response to Janelucia

Hi, my husband had chemo radiation treatment, which finished in September. During his first chemotherapy week he developed very bad reflux, to the point the hospital thought he was having a heart attack. As soon as the chemo ended so did the reflux. He has, however,  still got symptoms of LPR. He has seen an ENT specialist, and is due back tomorrow for a check up...there's still no improvement. Has anyone else experienced ongoing problems with this post treatment for squamous cell carcinoma of the anal margin? Xx

Anal squamous cell cancer

10 Apr 2018 09:54 in response to Janelucia

Hi JaneLucia I’ve messaged you x

Anal squamous cell cancer

10 Apr 2018 10:01 in response to L27

Morning

The Maggies centre gave us a list of insurance companies that were ‘cancer friendly’ although some of the people I know were getting absolutely ridiculous quotes!

i have annual insurance through our bank account and when I phoned them and told them I was in remission they wouldn’t cover me for anything cancer related until I’ve been in remission for a year.

i asked the question if I break my leg or have an appendicitis would I be covered and they says yes so I went away for our two weeks!!

this is one of the better companies I think a few of my Maggies pals used

Eurotunnel.com/insurance

08443353535

good luck

Sands x

 

Anal squamous cell cancer

10 Apr 2018 10:25 in response to SandsJ
Hi Sands, Thank you for the info. I have had a family annual policy set up for a few years, I will speak to them, as you I would be happy if they would cover me for everything else as they would normally do pre diagnosis and treatment Thanks again Best wishes xxxx

Anal squamous cell cancer

10 Apr 2018 22:51 in response to lisa1975

Hi Lisa I had a bloody nose with the first chemo , and such a sore mouth and tongue in fact I couldn't put a cup to my lips had to use a straw for drinks. Had swollen lips too. But it only lasted around a week! It depends how much radiation etc and exactly where you have it if you have radiation to the pelvic area then you usually start dilators 2/3 weeks after treatment finishes because as the burns start to heal they heal together!  I think everyone suffers with a mega itchy bum! X

Anal squamous cell cancer

10 Apr 2018 23:47 in response to Kinty1

Hi sorry to hear that your hubby is having a tough time  I have been on lansrapole for reflux for years and was lucky enough not to get any worse during or after treatment and my chemo was via oral tablets so can’t really help I’m afraid - hopefully he will get answers soon and get help rectifying his problems.

Sands x

Anal squamous cell cancer

11 Apr 2018 01:11 in response to SandsJ

Hi Kinty,

I am sorry that your hubby is going through this.  I am 6 months post treatment.  The treatment caused gastric reflux although not nearly as bad as what your hubby is going through.  I'm also having severe stomach pains with no other symptoms.  I have been unable to find a medication to prevent either one.  The liquid antacid makes me barf.  My docs wanted me to see yet another doc so I've added a gastro doc to the team.  Having more scans this week and next.  

Could you do me a favor and let me know if they find a successful medication for your hubby?  I've tried at least 4 or 5 different meds (prescription and over the counter).  Did they suggest a specific diet?

The chemo nurse said that chemo does a number (and made a tornado twirly motion with her hand) from the throat all of the way down.  

I hope his docs can help him real soon.

Sheri xx

Anal squamous cell cancer

11 Apr 2018 07:56 in response to gilliebean

Thanks Gilliebean,

Sore mouth is much better now, nose is still a bit sore.

Itchiness is driving me mad even with piriton. 

Losing my pubic hair at a rate of knots! Hahaha, will be bikini ready if nothing else!

I’m having treatment at Clatterbridge, this is a link to their info booklet regarding dilators.

Hey girls, I did find it amusing that vibrators can do the same job! **off to Ann Summers lol**

https://www.clatterbridgecc.nhs.uk/application/files/4914/8837/4777/Use_...

lots of love to everyone

Lisa xxx

Anal squamous cell cancer

11 Apr 2018 07:57 in response to SandsJ
Thank you for taking the time to reply. He is seeing get the specialist this morning but I just get really paranoid xx

Anal squamous cell cancer

11 Apr 2018 08:04 in response to texasgirl

Thank you for taking the time to reply. He is seeing get the specialist this morning but I just get really paranoid I will certainly let you know what we find out. We have made a few dietary tweaks on the specialists advice. ...avoid fresh juices which are acidic, no caffeine etc.....it's not improved at all.  xx 

I hope you get answers for you stomach problems...have you had any indication as to what the problem may be. I was told that wheat products can cause stomach/reflux issues post treatment. That might be the next route we try.

Kimberley xxx

Anal squamous cell cancer

11 Apr 2018 19:22 in response to Kinty1

Kinty 1,  how did your hubby get on today. X

 

Anal squamous cell cancer

12 Apr 2018 01:28 in response to Kinty1

Hi Kimberly,

It's a traumatic experience for the family as well.  Was the specialist any help today?

Gilliebean (also in our bum lady group) was really having a rough go of it.  Really, really sick.  Out of desperation she tried Cambridge diet shakes (not available in the US) that she usually drinks when traveling and had immediate relief.  She said she has had 5 days of 80% better. She said there is something in them that coats the stomach and prevents the acid reflux. She recommends the chocolate one.  I'm sure she would respond to you as well but has been with a family member who is also very ill.

My gastro doc wants to double check my gallbladder.  I really think that my intestines haven't healed from the treatment.  Last night was the first night in months that I wasn't awakened with harsh stomach cramps.  I'm hoping I have finally found the right medication and diet.  The tummy aches are still coming and going, but it's tolerable.    ,

Did your hubby's specialist recommend stopping all food for a day or two to give the intestines a chance to calm down?  I don't know if it works on acid reflux.  I spent 9 days in the hospital and had a wonderful nurse the last couple of days there. He suggested that I stop eating and only drink water until my stomach calmed down.  Then to start off very slowly introducing food again.  Stay on a soft diet for a while.  It stopped the never ending diarrhea that I had had for a week.  I've always wondered why none of the docs suggested it.  Day after day after day being sick as a dog and a nurse suggests it.

Has your hubby been offered medical marijuana called Marinol?  It's only available in TX to people with HIV or cancer (ridiculous).  It cost me $300 (insurance company paid $900 - how crazy is that?!).  It made me really drunk and wacky after a couple of hours.  Not the right drug for me.  In retrospect I probably should have rolled with it.  CBD oil is only available in TX for people with epilepsy, but if you have access to it, it is really soothing and doesn't get you high.

 

Anal squamous cell cancer

12 Apr 2018 07:33 in response to Kinty1
Hi I have been looking st your posts about your husband and hope you managed to go something sorted yesterday morning. I didn’t get any reflux or cramps mentions but had one brief feeling of heartburn one Morning..nothing more. I hope it gets sorted soon for you and try not to sorry too much, I know it must be heartbreaking to watch but the Drs will sort him out I’m sure. Thinking of you. Mandy xxx

Anal squamous cell cancer

12 Apr 2018 08:12 in response to Janelucia
Hi, they are booking him for an MRI. Took him off all meds as said if there are no improvements by now there aren't going to be. They think the damaged caused during chemo was so bad that this is perhaps just how he'll be now, but they want to be 100% sure so are doing a scan xx

Anal squamous cell cancer

12 Apr 2018 08:19 in response to Mandydk

Mandy, thank you for your lovely message. Cancer is so difficult for everyone to deal with, and I think I have struggled to accept it as Andy is so young  (38 when diagnosed) and always 'played by the book' (slim, active, non smoker, occasional drinker etc etc) He is booked in now for an MRI for his throat. Praying all comes back clear. Xx

Anal squamous cell cancer

12 Apr 2018 09:41 in response to Kinty1
Hi One thing I have learnt from the diagnoses is that nobody is exempt from cancer. I think we always think its going to be someone else and it won't happen to us but that is definitely not true. I have been to the hospital and waited for my treatment and met some lovely people who are in just as much shock. They look well and are all ages - young and old! When I was first diagnosed family members said 'you look well and your diet is wonderful'. I love cooking and prepare a fresh meal every evening i.e. no pre-made frozen food!, not a big meat eater, enjoy a glass of wine with a meal and have never smoked......have a good healthy diet, grow my own vegetables and rear our own chickens...what could be better? You can worry yourself silly as to why but to be honest I have never said 'Why me?' because why not? It looks like it can happen to anyone.... all I can say is carry on being a great support and giving plenty of encouragement. Always but always stay positive! Remember you aren't alone. I wish you husband a clear result after the MRI...I will be thinking of you. Mandy x

Anal squamous cell cancer

12 Apr 2018 09:51 in response to Janelucia

Hi, so sorry, I typed anot update somewhere earlier this morning,  but I'm not very good with this website! He has to go for an MRI scan. He's been taken off all meds as there's been no improvement, so just waiting for a date now xx

Anal squamous cell cancer

13 Apr 2018 08:57 in response to Kinty1

Hi Kinty

 

i do hope they get to the bottom of your husbands problems, sad  to hear that after one battle he has now having to go through this. Pleas let us know how he gets on.

you are quite right about cancer not just effecting the person who has it, family and friends that love you are all effected by this disease.

take car Lynne xx

Anal squamous cell cancer

13 Apr 2018 08:59 in response to Lyndylou67

Thank you Lynne, I will update when we know more. 

Love Kimberley x

Anal squamous cell cancer

13 Apr 2018 11:48 in response to Kinty1

Hi Kinty,

Sorry to hear about the issues your husband is facing, this must be so difficult for you too, when you can’t make it better. I am keeping everything crossed that tests and scans will provide a way forward. Good luck to you both.

lots of love

Lisa xx

 

Anal squamous cell cancer

13 Apr 2018 11:51 in response to Lyndylou67

Hi Lynne,

How are you feeling? All set for next week? Is it the 17th you start? 

I’m officially half way through today! Yay

lots of love 

Lisa xxx

Anal squamous cell cancer

13 Apr 2018 11:54 in response to Suzym

Hi Sue,

How are you getting on? you must be end of week 4 now?

I know that next week will be tough, but we’re here for you, have a restful weekend and I’m sending you lots of hugs and positive thoughts for the coming week.

stay strong

love from Lisa xxxx

Anal squamous cell cancer

13 Apr 2018 12:03 in response to lisa1975

Hi Lisa,

Thanks for your message, yes just had radiotherapy, end of week 4, not doing too bad, bum a bit sore but I've got my morphine gell, they were saying at the hospital that our treatment is one of the worst to get thru, and apparently I'm doing really well with coping with it. I have my bad days but I am able to manage them. Not looking forward to next week, had problems with my immune system not picking up quick enough but it was ok today, so I can finish chemo next week. Also been given my dialator ready for when I need them.

How are you getting on?

Sue xx

Anal squamous cell cancer

13 Apr 2018 12:51 in response to Suzym

71% done Sue that’s great here’s hoping next week won’t be too bad for you.  The gel really helped me 

Take care and be kind to yourself 

Sands x

Anal squamous cell cancer

13 Apr 2018 12:53 in response to Lyndylou67

Good luck for next week Lynne be thinking of you and once you get started you’ll be nearer the end.

Take care and look after yourself

sands x

 

 

Anal squamous cell cancer

13 Apr 2018 13:01 in response to SandsJ

Hi Sands,

I'e only used the gel twice so far and it is good stuff, the good news is I haven' had to shave my legs or under arms for a few days lol. 

Sue xx

Anal squamous cell cancer

13 Apr 2018 15:54 in response to Suzym

Sue hee hee I know every cloud and all that I lost all my hair down south was quite disappointed when it came back in Happy

I also got oral morphine towards the end of my treatment which I found good especially at night as it helped me get some sleep!

Tsk care and the end is in sight xxx

 

Anal squamous cell cancer

13 Apr 2018 19:53 in response to Suzym

Hi Sue,

Well done for getting to the end of week 4! Nearly there!! 

I’ve just had treatment 14 today so halfway there.

I’ve got a sore bottom, literally at my ‘bum hole’ it’s also very itchy. I also have tender lady bits, (feels similar to having thrush in the past!) is that the same for you? At what point did you get the morphine gel? I don’t want to seem like a wimp and ask for stuff too soon. At the beginning of this week, I said it was sore and they said persevere but there is stuff they can give me later on in the treatment. I’m taking piriton for the itchiness, not convinced it’s really helping. I go to the toilet a lot more than I ever had, it’s loose and sometimes is very urgent!

I also feel tired, and can’t summon energy up to do much (not like me at all!)

Is this what everyone else experienced?  

Thanks

Lisa xx

 

 

 

Anal squamous cell cancer

13 Apr 2018 20:27 in response to lisa1975

Hi Lisa

50% well done you - I too had the pain in my lady bits and my specialist nurse gave me into trouble for waiting too long to tell them - she said that considering all we are going through we shouldn’t have to suffer pain too so you’re not being a wimp at all. 

I did  also have to go a lot and had that horrible feeling of urgency it did pass in time. 

I hope the next few weeks go quickly for you and you’re soon finished with your treatment - you take care and be kind to yourself please don’t not put up with pain!

Sands x

Anal squamous cell cancer

13 Apr 2018 20:33 in response to lisa1975

So impressed that ITV wales has shared information about Anal Cancer. 

ITV Wales programme about the Velindre hospital.

was in tonight at 8pm, try and watch it on catch up.

 

Anal squamous cell cancer

13 Apr 2018 20:36 in response to SandsJ

Thanks Sands,

Nice to know what I am going through is the ‘norm’ i’ll hassle next week for something for the pain, I know I’m not a wimp in fact I’m quite tough usually xx

Anal squamous cell cancer

13 Apr 2018 21:05 in response to lisa1975

Hi Lisa do you know what the programme was called? 

Thanks Sandra x

Anal squamous cell cancer

13 Apr 2018 21:13 in response to lisa1975
Hi Lisa, yes everything your telling us is exactly like me. I saw a skin care nurse on Monday, she was the one that organised my morphine gell, she did have a look at my bottom , cause no one had checked it since I started treatment. She told me what to expect as treatment goes on, she gave me loads of Diprobase which I use all the time and I don't have to wash that off before treatment. She also gave me a potty which I love, it is lovely just to sit your bum in warm water. The itching hasn't been too bad for the last 2 days, and my bowels are not the same. I go every day, my poo is small and narrow, and I don't just go and get of the toilet, I can spend 15 minutes at a time on the loo. After my surgery I was left with 2 small skin tags, these are now swollen and feel like troublesome piles, hopefully they will shrink again. I don't think they should be telling you to persevere with any pain. As soon as I've mentioned something going on they have been there to help. Even in chemo today I mentioned I had a bad evening last Saturday when my temp went up and I felt unwell but it only lasted about an hour, I was told today if that happens again I'm to get in touch with the hospital. Sue xx

Anal squamous cell cancer

13 Apr 2018 21:13 in response to lisa1975

Get hassling - none of us are wimps - what we are/went through is/was very difficult so take all the help you can get xx

Anal squamous cell cancer

13 Apr 2018 21:17 in response to lisa1975

I'e been watching this, I haven' watched tonight yet, I've got it on record will watch in later, I saw last week they were going to cover anal cancer tonight.

It's called Velindre: Hospital of hope

Sue

Anal squamous cell cancer

13 Apr 2018 21:21 in response to SandsJ

I was told today the treatment I'm going through is one of the toughest they do. I seem to be getting thru it not too badly although I do have my bad days, I tend to muddle thru cause I don' t want to hassle people, but they go mad for not saying something, you are entitled to hassle, unless you tell them they don' know. They ask me every day how I'm feeling.

Sue

Anal squamous cell cancer

13 Apr 2018 21:30 in response to SandsJ

Hi Sands,

New: Velindre: Hospital of Hope

was

on ITV wales 

Anal squamous cell cancer

14 Apr 2018 08:16 in response to lisa1975

Hi Lisa

feeling ok, apprenhensive about the treatment but on the other hand just wan to get going.  How are you feeling at he end of week 3?

just having a mad dash to get everything done in the house and am going out for a meal tonight with family, my last hurrah!

take care Lynne xx

Anal squamous cell cancer

14 Apr 2018 08:22 in response to SandsJ

Hi Sands

 

thank you, I’m sure you will hear all about it.  Have bought lots of stuff in preparation I.e bidet, squat stool etc. I finished work on Thursday and my colleagues got me some presents a PICC line sleeve, a shower cover and some calendula cream (this is meant to be good for radiation burns). There were lots of hugs and tears, never felt so loved.

Cant wait to be where you are now in the journey.

take care Lynne xx

Anal squamous cell cancer

14 Apr 2018 08:25 in response to Suzym

Hi Sue

Glad you are getting there, do they give you stuff automatically or o you age to ask? Also does the hospital prescribe it or do you have to go through your GP?

it must be a relief to know the end is near.

take care Lynnexx

Anal squamous cell cancer

14 Apr 2018 08:46 in response to Lyndylou67
Hi sue and Lynne, quick message to both. Pleased sue you are getting on well and treatment is almost over for you. Knew you could do it. Take it easy when you finish ...... good luck in the forthcoming weeks after. Xx good luck Lynne when you start. Everything will be fine. You’ll be surprised how quick the weeks go. It may seem a long time but will go quickly....once over you can take it easy and look after yourself. Thinking of you both...Mandy xxx