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Anal squamous cell cancer

14 Apr 2019 11:04 in response to Suzym

Thanks Sue

will ask about the morphine gel. I also have invested in huge cotton knickers and loose harem pants for when I have to wear clothes. I know the end is in sight but just having a bit of a down day. Off to try a salt water immersion. 

Thank you. It all helps. 

Cathy x

Anal squamous cell cancer

15 Apr 2019 05:52 in response to Bum1

Hi Cathy,

I'm butting in here (in more ways than one I suppose).  You shouldn't have to wait to finish treatment for the docs to give you something for your skin.  They should prescribe an ointment that has some lidocaine in it.  If the doc or the nurse isn't examining you prior to treatment they don't know how badly your skin is burned.  You might need to speak up.  A group of four lady technicians positioned me on the table but they did not have any say about my burns.  I saw a nurse first and then the doc, but not each day.  

Even Vaseline would help.  If you coat your vagina area it will keep the pee from hitting the skin and burning.  You must not have anything on your skin when you are receiving radiation.  Morphine gel that Sue was prescribed sounds like heaven.  Nothing really helps  the pain when you have to poop (maybe the morphine gel) and it takes a couple of weeks for the skin to heal enough to be tolerable.  Four more sessions is great!  Almost done.

Big hug, Sheri xo

Anal squamous cell cancer

15 Apr 2019 06:28 in response to Bum1

A traumatic experience would make one afraid of it happening again.  I made the doctor appointment and wasn't expecting him to take it out in his office since they put me to sleep to put it in (different surgeons though).  Honestly, it was not a big deal at all.  At one point some of the deadening agent started to wear off so he just injected more.  They like to keep them in at least one year or a year and a half.  But I'm very skinny and it was protruding from my chest and hurting a bit.  It felt great to get it out.

It sounds like you have a wonderful life.  I know all about self employment.  My hubby was self employed most of our lives together until the last 10 years when he finally started working for the city.  

I hope you have an easy time these next 4 days. 

Hugs, Sheri

Anal squamous cell cancer

15 Apr 2019 06:43 in response to texasgirl

Hi Sheri

tha is for your kind words. I have been given creams for the burns but was really struggling yesterday so was really just asking what people had that worked best. 

I am feeling a bit better today but still really struggling with the pain. I will see a member of the medical team today for my review so will ask for both stronger pain meds and burn cream. 

Four sessions left..  onwards and upwards!

Cathy. Xx

Anal squamous cell cancer

15 Apr 2019 16:55 in response to Bum1

Hi Cathy 

well done you are nearly there! I had my picc line taken out 6 weeks after treatment which was very disappointing but they kept it in as I had had an infection so they were not keen to take it out for some weeks, not that that will happen to you but I m just saying! When it did come out no problem at all and it doesn't hurt. They had trouble putting mine in and had to do it twice so I guess that's quite common. Try not to organise anything for at least the first 2 weeks after treatment you will be physically and probably mentally exhausted as you have been on the go constantly for 6 weeks plus all the emotions etc so be kind to yourself! I could not walk by the end of treatment and I had lady bits resembling a purple cauliflower and was in a wheelchair for the last few weeks as it was unbearable to walk. After treatment I had terrible reflux but found water with lemons in , cucumber every day and protein shakes helped tremendously ,that went on for some months but I m good now a year later. For me I have to find what my new normal is as I will never be able to do the amount of things that I used to everything is at a slower pace now and listen to your body if you re tired go and rest . The mitomycine can give you a nasty spotty rash even some months after treatment , I spoke to a guy who showed me his legs after treatment so I was warned ,I thought he was just unlucky but my back broke out 8 months after treatment and is only just calming down now 4 months later. Never suffered from anything like that so was quite shocked. That's not to say it would happen to you but again just in case it does don't go into panic.

we are all different a and is really wish you a great road to recovery the hardest thing for me to learn is to delegate or accept help from people but it's a case of having to so that's what I do now. We all recover at our own pace but it is nice to know that others have been through and can share some of their experiences as well as giving you support on those down days! 

I also found that after treatment I felt quite alone with my thoughts, I have the most fantastic supportive husband but all the time you are busy with the hospital and getting support is great but when you finish treatment you can feel that nobody cares anymore and everyone thinks you ve done treatment so you are better now! I found it one of the worst times to come to terms with everything that had happened in those months previous . 

anyway remember we are all here if you need us and the best of luck for your good recovery . Big hugs 

Gilliebean x

Anal squamous cell cancer

16 Apr 2019 07:01 in response to gilliebean

Thanks Gillibean

your description of your ladybits hits the spot!  I am still managing to walk the short((ish) distance from the car to the treatment rooms. But only just. I am not sure what I resemble but a poorly penguin comes close!

i was at the point of no return with the pain yesterday and cried all over the nurse when she asked how I am...  I now have oramorph which is helping and they are going to ask for a doctor to look at my burns to see if there is anything more they can do. The radiotherapy nurse gave me some dressings to use overnight and they did help if only by stopping my inner thighs from touching anything....  the whole area is weeping so much it actually runs down my legs!  

The mitomycin did make my face break out in spots. ( I generally am blessed with good skin and couldn’t tell you the last time I had a spot prior to this!  But it was short lived. I am still struggling with a really bad throat and mouth ulcers but again, due to the tears yesterday have been given some extra strong mouth wash to try to combat that... I shall now be aware that the side effects may come back to haunt me in weeks or months to come!

ah well, I am now counting the hours rather than the days and fully intend to do absolutely nothing all over Easter weekend. I have warned my family so hopefully they won’t be disappointed!

i feel like I am just posting a long list of whinges and woes so apologies for that but I am really finding it hard to be positive at the moment. That said, it really does help to hear from others who have gone through the same, to know that I am not alone and that, eventually things will get better 

 

happy Easter to you and yours. Continue to enjoy life!

Cathy xx

Anal squamous cell cancer

16 Apr 2019 08:31 in response to Bum1

Morning Cathy,

What Gillibean says is absolutely right, I feel for you so much, I remember those last few days so well, I too had trouble walking into the hospital , I remember my daughter saying she'd fetch me a wheelchair and I went mad, why I don't know it would have been a godsend. And the nurses used to ask me every day how I was and was I coping with my skin, so always tell them if you need help. I too had 2 lots of mouthwash which helped a lot, as my mouth was really bad, my friend ( who I met at the hospital) didn't have a reaction like that at all, I remember she had oramorph too.

It's a horrible time to go thru but your nearly there, try and have a lovely Easter break, let the family spoil you, I'll be thinking of you.

Sue xxx

Anal squamous cell cancer

26 Apr 2019 16:17 in response to Bum1

Hi Cathy 

just wondering how you are doing is there some light at the end of that tunnel now? 

I m hoping that you will be starting to turn the corner , there are many emotions after finishing treatment and also the feeling of being dumped as everything comes to a halt and although the relief of finishing treatment is great it's very difficult to get your head around what you have actually been through. 

Then there is the waiting to see how successful treatment has been we have all been at that stage so don't forget we are all still here to suport you. I had my worst times after treatment when everyone just assumes you are ok now! 

I am here waiting for results from my latest MRI and no matter how positive you are it's still a mental torment . Don't forget you will have to find the "New You" as not many people are the same after treatment so be easy on yourself especially in the early days I was very frustrated how tired I got and still do but have come to accept the new me now and things are getting a lot better at last. 

Anyway here if you need any support and take care xxx

 

Anal squamous cell cancer

26 Apr 2019 17:58 in response to gilliebean

Hi Gilliebean

i am currently lounging on the sofa in my pyjamas...  having forced myself out of bed at lunchtime!!

i am still struggling with the pain and dread every visit to th toilet!!  Every day is a day closer to feeling better though... and that should start to kick in at any day!

i completely understand what you mean about being dumped...  although I knew the intensive interest would finish along with the intensive treatment it does seem a little strange to be completely on my own now...  although I do have friends and family of course!  I am asking myself what happens now? I know I can’t just slip back to how I was before but am not sure what the new me looks or feels like. I find myself thinking about exploring part time work (not sure if this is viable in my current job) or even seeing if I can release my pension (very) early and stop work altogether....

on a slightly less deep note I have just done a mega clothes shop online as I am looking forward to binning the shapeless tunic things and harem pants that I have been relying on for the past month or so

i also am incredibly tired all the time. Sleeping 16 hours a day is not unusual at the moment but I expect this to improve in time. 

I am a bit unsure as to what happens now? I have an apt with my oncologist at the beginning of June but assume this will just be a post treatment review rather than to tell me that the magic wand has worked and I am completely cured...  time will tell I suppose.   How long post treatment was it before you were told whether it had been effective?

anyway, enough of my waffling. I am thinking of you and fingers crossed for a positive MRI result

again, I really do appreciate all of the support from this site it really is helping

kind wishes

Cathy. Xxxx

Anal squamous cell cancer

29 Apr 2019 12:24 in response to Bum1

Hi Cathy

dont worry about feeling tired all the time that's quite normal , rest is a great healer and your body needs it! Yes those toilet visits are horrendous but it does get better. 

It will be a while before you find the new you! Believe me I haven't found the new me yet although I m working on it ,it takes acceptance on not expecting all those things that you did so easily before treatment to what you can do now. Time will tell but listen to your body and take as much rest as you need.AND salt baths I swear by them great for healing those burnt bits! You ll know when to stop.

depending on the extent of your cancer will determine how the hospital monitor you and each hospital is different however I had MRI after 3 months followed by consultant, ct for the bones after another 3 months followed by consultant and then another MRI after another 3 months followed by consultant which is coming up! Are you in uk? 

Take care and slowly slowly! 

Love 

Gilliebean x

Anal squamous cell cancer

30 Apr 2019 09:46 in response to gilliebean

Hi Gilliebean

i have just had my first salt bath and am now wondering why on earth I waited so long!!! (Usually a shower girl). I could quite easily have stayed there all day....  

sorry, just felt the need to share that with you. 

I must be feeling better as I am now starting to feel frustrated that the sore bits are still sore rather than just feeling sorry for myself. I am looking forward to the time that I feel able to drive so that I can get out and about a bit. Not least to have my hair cut!  Again, must be feeling better if I am staring to consider such vanities Happy

yes, I am UK based, on a farm in beautiful North Yorkshire which does mean that I can either lie and enjoy the wonderful views from the window or sit in the garden and enjoy the fragrant (!) countryside aromas!

so....  onwards and upwards. Hope things continue to improve for you, and all of us on here

 

take care, love

Cathy xx

Anal squamous cell cancer

30 Apr 2019 09:59 in response to Bum1

Hi Cathy,

 

Just picked up your conversation with Gillibean and see you are enjoying the wonders of the salt bath.  The funny thing was I was told from my specialist....and I know all are different...that she didnt like any painkillers, keep it all natural were her words!  She told me  from day 1 have salt baths, even before treatment...so I did.  I had one every other night and it healed a treat. I got so use to using salt instead of bubbles it was quite a relaxing and enjoyable part of the day.. my skin also felt super smooth, hairless and smooth! Happy So pleased to hear that you are making a speedy recovery and starting to look at yourself differently....i.e. not the patient but at you!  Good luck with the hair cut, I remember how I fet

l when I went for the first time since the treatment, it really gives you a lift.  Go and buy yourself something nice to wear, you deservce a little treat!  All the best...and to all you girlies out there who I have enjoyed reading about.. Mandy x

Anal squamous cell cancer

1 May 2019 00:31 in response to Bum1

Hi Bum1 Cathy,

The radiation continues to work for months after treatment has stopped and they will continue to monitor you.  They monitored me every 3 months for the first 17 months.  I still have to see my surgeon every 3 months (she said for the rest of my life) for a scope which is unpleasant but takes maybe a minute and a half.  I take a pain med before I go.  My scans have been bummped to every 6 months IF the insurance will continue to cover it.  I'm in the US and Medicare/insurance is going down hill with our current administration.  I'm hoping things turn around for the US real soon.  

I remember the feeling of not knowning what to do with myself after treatment.  That only lasted about 5 days before I started feeling bad again.  But I don't think my situation was typical.   

My hair still looks silly.  It has come back full force but the sides are much shorter than the rest of my hair  and doesn't look real "with it".  And the layers are so short that it makes it doulbe in size in any humidity.  Better than no hair; however.  I think I'm going to have to embrace the curls which make me feel like an old lady for some strange reason.  I think because when I was growing up my mother and her friends always got permanents to make their hair curly.   

It sounds like you have a lovely life.  I'm so glad that you handled the treatment ok.

I love hearing from you ladies.  xo Sheri

Anal squamous cell cancer

2 May 2019 10:18 in response to Bum1

Hey Cathy!

somglad you have started the salt baths it's just so soothing on all those sore bits and it works wonders for healing ,I had them all through treatment and kept with them for a month afterwards. 

Sounds like you are starting to feel a lot better already that is great news and each day will get a little better although you will have days where you will feel totally done in, just accept it and you will continue to improve, the body needs rest to repair itself. I ate lots of alkalising foods after treatment because I had  very bad acid problems from all foods ,you can google acids and alkaline foods and you will see a list if you have any problems in that area ,I know some do and some don't . Me and Sherri suffered greatly in that area and I am here if you need any advice in that area as believe me when I say I know so much about foods now through research in my desperate state!!   Pleased to report everything is under control now though and I ve worked out a great diet .

anyway stick with the baths and have a great recovery xxx

Anal squamous cell cancer

2 May 2019 10:51 in response to Mandydk

Hi Mandy hope you are doing well now x

Anal squamous cell cancer

2 May 2019 11:41 in response to gilliebean

Hi Gilliebean,

Its lovely to hear from you.  How are you doing?  Im fine and pretty much back to what I was before...a little more anxious with every ache and pain but I guess thats to be expected. Love reading all the posts on this site, it does take you back to your own experiences...there is light at the end of the tunnel.. love to you and all on here..xx

Anal squamous cell cancer

26 May 2019 20:28 in response to Mandydk

Hello, I wasn’t sure if this group was still active as I saw the last post was  24 days ago.  I to have recently been diagnosed with anal squamous cell cancer and have not been able to find much about it.  I started my chemo and radio therapy last Thursday and found the chemo side effects have come in quite quickly.  I am very Lucky and have lost of support but am extremely anxious about the next five weeks and was just reading through all your post which have been really helpful x

Anal squamous cell cancer

26 May 2019 21:03 in response to Sunnyshine

Hello Sunnyshine,

 

Yes, I’m still here. Don’t worry.its all quite daunting at the start but any questions please ask. I was diagnosed 10th January 2018 treatment started 19th February and completed 28th March. The treatment is very successful. Just remember that there is light at the end of the tunnel. The treatment will be hard towards the end but it won’t last. You’ll get there. Any question please ask. Wishing you lots of love on your journey. Always here. X

Anal squamous cell cancer

26 May 2019 21:18 in response to Mandydk

Thanks for replying,  I am so happy to hear your treatment has been successful.

 yes it’s been a bit of a rollercoaster for me and the family over the last 6 weeks but am taking everyday step by step.  Reading through the post I can see the last few weeks are painful but am certainly listening to everyone’s advice to say so, I’m also going to start having salt baths everyday to!!! 

Xx

Anal squamous cell cancer

26 May 2019 21:27 in response to Sunnyshine

Hi

I haven’t been on for a while but saw your post - I’m now now 18 months in remission after six weeks chemo radiotherapy - this wee group was/is an amazing support.

Everyone is very honest about their experiences and it is hard and I personally found once I had finished the treatment that it was worse before it got better. I’ve just been reading back over the chat and can’t believe how far I’ve come - be kind to yourself when you’re tired rest up and do t try to rush back to things. 

I dint know where you live I was the only one in the group in Scotland I think I’m just outside Glasgow and have found amazing support through the Maggies centre.

Wishing you a speedy six weeks and if you’ve got questions there’s usually one of us can try to help 

take care kind regards Sandra x

Anal squamous cell cancer

26 May 2019 22:00 in response to Sunnyshine

Hiya, 

I live in North Wales and had to travel from Anglesey to Glan Clwyd every day, the treatment isn't too bad except at the end of radiotherapy, I am 14 months post treatment now and except for still getting tired more easily than before I'm more or less back to normal, I also had surgery first before they realised it was cancer. Be kind to yourself if someone want to help to look after you....let them! It helps you and they feel useful, just give us all a shout if you need a bit of moral support, this group are fantastic and I'd have been lost without them, xxx

Sue

Anal squamous cell cancer

27 May 2019 08:04 in response to Sunnyshine

Good morning Sunnyshine

i am just 5 weeks post treatment and would like to reiterate what all the other lovely ladies have said. This forum certainly kept me sane at times and it is good to be able to chat to others who really do understand what you are going through. 

My advice would be to accept all help offered and not to try to ‘be brave’. I thought I would be able to cope alone (well with Darling husband) but once I accepted this was not the easiest way and let my family come and stay (one at a time) it was such a relief. Just having someone to shop/cook/hoover/chat to really helped. 

Other advice, be kind to yourself, allow yourself to have a cry or a down day...  but try not to wallow!  And sleep as and when you need to!  I am still in need of a daily nap. 

Let the radiotherapy nurses know - honestly - how you are doing. They will know what will help. And don’t forget that it will get better and the treatment is saving your life!!

and those salt baths.....  my daily treat!

dont be afraid to ask anything or just to chat on here it is all very fresh to me!!

take care,

Cathy x

Anal squamous cell cancer

8 Jun 2019 17:48 in response to Bum1

Thank you all for your lovely words and advice. I’m glad everyone got through the treatment, with a few challenges but nevertheless I can see the smiles on your faces via the words you have writte. Half way through my treatment now, I’m pretty sensitive to the chemotherapy as I started being sick with 5 hours of having it, being and feeling sick, until they decided to put a driver in that gives me anti sickness 24 hours. My friends and family have been amazing and I would not be as sane as I am now without them.

Must admit I’m dreading the next few weeks, I struggle to sit down now never mind in a few weeks.

Hope you are all well xxx

 

Anal squamous cell cancer

8 Jun 2019 18:42 in response to Sunnyshine

Hi Sunnyshine

 

welcome to the forum....One thing I didn’t mention on this forum was I did used baby bottom butter from Waitrose..it was wonderful...soothing as you would expect for babies and smelt wonderful. I left my areas free from anything other than very regular salt baths...which got fewer the sorer it got. What you have to remember is it will get better once treatment has finished. A little peek occurs after treatment that feels the worse time but it will go quickly. Allow plenty of air to the area that’s sore. When you are home go knickerless...soothing water to the front of your girlie bits when you wee and sitting in water when you need to do no.2. Oh how we find talking about this area the normal now...keep your chin up and keep smiling..we are here to see you through! Any questions do ask.  Mandyx

Anal squamous cell cancer

8 Jun 2019 23:37 in response to Sunnyshine

Hi Sunnyshine,

You are right at the part of treatment where it becomes more challenging and painful.  If you keep your lady bits covered in some sort of ointment it will prevent the pee from hitting the skin and burning.  But just make sure it's all washed off prior to radiation.  Nothing really helped with the pooping pain, but pain pills help a lot but not completely.  Allow the area to air.  When I was in the hospital I stacked pillows around me so that I wouldn't just be exposed should someone enter the room.  I still sit on a pillow because I'm underweight and I sat on my hip for the last two years.  I think I've got my spine out of whack from sitting sideways.  I apologize if I'm repeating myself.  I didnt go back and read previous posts.  I hope this time breezes by for you with minimal discomfort.  Several months ago I started putting on headphones and listening to music or a podcast or watching youtube videos.  It got me through some days that I wasn't feeling like doing cartwheels.  

I live in Texas and wasn't told to go to radiation with a full bladder.  Apparently this is to protect your bladder from the radiation.  I also was not referred for pelvic floor physical therapy (not fun at all) but it is important to get that area back to what it was prior to radiation.  

Your body needs nutritionn to fight the disease so try to keep your weight on.  I lost around 34 pounds and it's be reallly hard getting it back on.

Will keep you in my thoughts.  Bum1, Cathy I'm glad you are doing ok.  xo Sheri

 

Anal squamous cell cancer

18 Jun 2019 18:32 in response to texasgirl

Hello everyone, 

thank you for your words of advice, Texasgirl I will certainly take on some positive wellbeing.  Luckily I can afford to lose some weight but it must be so hard form you to try and put weight on, sadly I can’t give you any ideas as I’ve always been a bit chubby myself.  Glad everyone ok.

sunnyshine 

Anal squamous cell cancer

27 Jun 2019 04:47 in response to Sunnyshine

How are you feeling Sunnyshine?  Hopefully the worse is behind you now.

Some of us should be hitting our 2 year anniversaries of when we were diagnosed.  A little longer for our end of treatment anniversaries.  Is everyone doing ok?  

I have a lot of digestive issues and my bum still hurts (some days worse than others) and i still get fatigued easily.  But so far, no evidence of disease. Yaaahoo!

Think of you ladies often.  xo Sheri  

 

Anal squamous cell cancer

27 Jun 2019 05:00 in response to texasgirl

Hiya Sheri,

I'm still here lol. Still getting on ok, my hospital appointments are down to every six months now, so all is ok there, I'm loving the summer months, me and my grandkids love the beach and as I live in a beautiful part of the world I get to the beach often. I still get tired easily and sometimes need the toilet urgently but I suppose that's a small price to pay.

I too think of our little group often, I would have been lost without you lot!

Sue xxx

Anal squamous cell cancer

27 Jun 2019 05:38 in response to Suzym

Hi Suzy,

Unfortunately, I think the digestive issues are part of it.  Every few days it hits me unexpectedly so I don't eat if I have to go out and about.  I found some digestive enzymes that have helped tremedously.  

What fun to be able to spend time at the beach with your grandkids!  It has gotten very hot here.  We are on our way to a record heat summer.  

Love hearing from you!  xx Sheri

Anal squamous cell cancer

27 Jun 2019 09:39 in response to texasgirl

Hi there all

i am now 10 weeks post treatment and slowly but surely starting to feel human again...  unfortunately I was struck down with a bad case of shingles...  down my bottom and the back of my left thigh....  so just as I was starting to feel better I was once again unable to sit down comfortably...  that has just about gone now although I still have some residual nerve pain...  I must have been really bad in a former life!

My daughter had a beautiful baby girl (grandchild number 3) 5 weeks ago and the thought of being able to spend time with them really kept me going throughout the rigours of treatment. Unfortunately I was not well enough to visit when the baby was first born and then had to wait another month due to the shingles, but I am finally here and loving every minute!  Today the sun is shining, I am surrounded by family and loving life!  There have been times when I have wondered if I would ever feel this good again..  

i know that I still have a long way to go, my oncologist was unable to examine me at my 3 month post treatment check due to the shingles so I still don’t know if all the blasting has had the required effect..  I now have an appointment in September and will have scans just before so I am trying to enjoy life, learn to walk like a human and forget about all things hospital related

Sunnyshine,enjoy the good weather and know that however bad it feels now it will pass and we are all here empathising and wishing you well... I really did value the long cool salt baths especially towards the end and after treatment. 

Sherri I hope it’s not too hot for you..  I’m sure a good hot summer for us is equal to your mild spring. 

Cathy. X

Anal squamous cell cancer

29 Jun 2019 06:14 in response to Bum1

Cindy, I am so sorry to hear about your bout with the shingles.  A couple of my family members had them and they say it is the most painful thing you can go through.  It sounds like it's behind you now and you are feeling well enough to enjoy the grand babies.  That's wonderful!  I miss having little ones to play with.  Our 17 year old grandson lives with us which we love and my daughter’s girls are 13 & 9.  The 13 year old is into her own thing and tolerates grandparents, but prefers to be elsewhere which is understandable.  The 9 year old is full of ***** and always happy.  She wakes up super early excited that it's morning.  I am definitely not a morning person.

We typically do not have much of a spring here in Texas.  It gets hot pretty quickly by June and doesn't cool down until well into September and is still warm but bareable in October.  It was on our national news tonight that France was experiencing record heat as well.  

It was great to hear from you and your positive attitude.  My grandson had a bad stomach virus earlier in the week and I caught it a couple of days later.  It's a challenge to get my system back in whack AND to get the weight back on.

Hugs to all, Sheri xx