Together we will beat cancer

Donate

Anal squamous cell cancer

31 May 2018 07:34 in response to Mandydk

Hi everyone 

glad you all seem to be doing well and have survived treatment!  I m starting to pick up now at last but the gastric is still a problem ( like Sherri) I have to be so careful what I eat no meat ,dairy or pastries of any kind which really limits the diet but a small price to pay! I can still feel the lump but hope that it's free from the dreaded nasties! Scans on the 15 th June and then a 6 week wait for the results which I m not happy about really but that's the waiting time this end for things to be processed because of the NHS cuts Sad just keeping everything crossed that it will be a good result. Think of you all every day what a journey this has been!  I m so glad that there is so much positivity amongst us I suffered terrible nerve pains in my legs and hips for 2 months but they seem to have gone now I m so relieved! Still have to walk slowly as my legs feel like lumps of lead but  I'm sure in time that ll get better too.

sending lots of love to you all and hope you all get good results from your scans etc. 

Gilliebean xxx

Anal squamous cell cancer

31 May 2018 08:26 in response to gilliebean

Morning girls,

I can' believe we all got through the treatment. I personally think we all did well to get there sane! 

I' m 5 weeks post treatment now, and I'm feeling ok most days, I too do tend to watch what I'm eating, no real issues and I haven' suffered with diarrhoea but I do try to keep my diet on an even keel. I don' t seem to have an appetite, I could quite easily go all day without eating and think nothing of it. ( I haven' lost any weight tho).

It's the toilet thing for me, I have one day that I constantly feel as tho I need to poo, maybe up to 7 times in that day, then it settles and I'm normal then for a couple of days. Only occasionally do I need to rush for the toilet. And the whole thing is getting better with each day.

Have any of you been given the dialators and have you started using them? I'e been told I need to use them every day for a few minutes for 6 months! Then a few times a week for the foreseable! That I find is a ball ache.

I too think of you all, all the time. It's a lovely thought that we are all the other side of this horrible journey .

I had a holiday booked to Thailand and Cambodia which was booked before my diagnosis, to go in October but I'm thinking of cancelling it now because the holiday involves living in the villages and eating local food and I'm not sure now if my stomch can cope with that, although I never had issues of that sort before my treatment. I have my first follow up appointment on 11th June so I though I'd ask my doctor and see what she thinks.

Love to you all,

Sue xxx

Anal squamous cell cancer

31 May 2018 15:14 in response to Suzym

Hi All

Yes Sue I was given a dialator when I visited the Dr on my first appointment after the treatment finished.  She was annoyed as it should really have been given the day I completed treatment....I was told its important as although not everyone is having regular sex, in the future you may need a smear and it will be more comfortable to still be nice and open in that area Wink Its very uncomfortable for me at the moment and i'm only on the small sizest size...I have quite a few more to go through until I use the broom handle she gave me!!  Your pending holiday sounds lovely Sue and I hope it will go ahead.  You never know October is still a little way off and you are improving each day.  Gilliebean I too had the nerve pains  down my legs,  thankfully they disappeared. I was told to take pain killers and they did go after a day or two but I know what you mean...it can be quite painful.  If I have been doing a lot of walking I do find that the pelvic area aches more than usual. Im guessing all the radio in that area has caused this...I hope!  Forgot to ask Sue has she taken the helicopter ride yet over Snowdonia?  I remember you saying it was a gift and saving it up for when feeling better.... Gilliebean I feel there may still be something there i.e. lump but the Dr did say it was hard in the area that the radio was given and radio causes this so with a bit of luck it won't be the dreaded C still around.... Love to you all and as always thinking about each and everyone of you! Mandy x  

Anal squamous cell cancer

31 May 2018 16:02 in response to Mandydk

Hiya Mandy,

I have started using my dialator, mine was given to me by the fem care nurse at the hospital a week before my treatment finished. I'e been getting on not to bad with it, although I did ache for about an hour afterwards, so I've started using it at bed time, that way if I ache it will be while I'm asleep!

I too get the aches down the back of my legs, mainly when I go to the toilet a few times in the morning, I've found if I take a painkiller it gets it under control and I can carry on as normal for the rest of the day. Living near Snowdonia I love walking the hills, but I've not attempted them yet although I do love paddling in the surf, which is enough for now.

I haven't done my helicopter ride yet, I was saying to my granddughter I can organise it now.... I can't wait. I can put my holiday off for a couple of months, so I'm thinking of postponing it until about Jan or Feb, give me a bit more time.

Sue xx

Anal squamous cell cancer

31 May 2018 16:58 in response to Mandydk

Hi Girls

 

i’m only 1 week post treatment, so still having sore botty problems. But I have been on a bland diet since my second week of treatment as I couldn’t control the diarrhoea, this is mainly white bread, rice and pasta very boring but haven’t felt like eating that much anyway. Although today I did have a bacon roll it was lush but not sure how it will effect my tum, so far so good. Am looking forward to getting back to normal eating I haven’t had any fruit or veg for weeks now! I normally have a high fibre diet as I suffer with IBS so this was the best diet for me to help with constipation which I often suffered with.

Dilators were given to me on my last day of treatment, obviuosly I’m not ready  to use them yet, but I was told to use them for 5 mins 3 times per week for at least 2 years! My follow apppointment is on the 21 June, but I will also need another biopsy on a lump they found on my thyroid, the last one was inconclusive. I just take each day as it comes.

And finally I’m fair skinned and freckly. My Dr told me ladies that have problems with haemorrhoids and anal fissures are more than likely to develop the cancer.

good to hear you are all doing well.

Lynne xx

Anal squamous cell cancer

12 Jun 2018 04:38 in response to Lyndylou67

Hey Lynne,

Was thinking about you and hoping that the side effects have subsided by now and that your mum is home and well.  

Warmest wishes, Sheri

Anal squamous cell cancer

13 Jun 2018 08:40 in response to texasgirl

Hi Sheri

very spooky, thought I’d look at this site and because it’s been quiet for a while and  would write a post, and there was one from you!

i doing ok, 3 weeks post treatment. My skin has healed but it still stings to pee and poo! Also feel very tired, I trying to go out for a little walk every day, only started on Monday, to build my strength up. I’ve got   Slight bowel incontinence, is that normal?

Fortunately my choice of foods has improved, although I steer clear of anything too fatty or spicy! 

Apart from that I’m enjoying the sunshine and being able to sit in the garden, I’m signed off work until the end of June, don’t know when I will go back don’t want to rush it, I wan to make sure I’m strong enough because it will full on when I do.

hope you are ok and managing to have your problems sorted out?

to the rest of the girls on here, hope you are all ok too and well on the road to recovery

take care all Lynne.xx

Anal squamous cell cancer

13 Jun 2018 08:41 in response to Lyndylou67

Nearly forgot when should I start using the dilators?

Anal squamous cell cancer

13 Jun 2018 10:06 in response to Lyndylou67

Hiya Lynne, 

You sound just like me. I' m 7 weeks post treatment, bowels are just sorting themselves out! I get slight bowel incontinence, usually in the morning, but it's sgetting better every day. The worst I had was going to the toilet about 7 times a day, I took painkillers to calm it down and that worked. I had my first follow up appointment on Monday, my doctor said everything I am experiencing is normal, still early days and to give it time. I' m not back at work yet, hoping to go back begging of July, it' just the bowel thing I'm a bit anxious of.  I started using my dialator 4 weeks after treatment, it gets on my nerves to be honest remembering it every day. I also found the fatigue crippling at times, but that is much better now. I still have to be careful how much I do cause it quickly catches up with you,. Same as you with food, I did loose my appetite completey  ( it' s still not great now) but I still watch how much fibre I'm having and I steer clear of spicy foods.

It's lovely to feel almost back to normal now, and I love being at home, I too have spent a lot of time in the garden enjoying the lovely sunshine. I must say we picked the ideal time for this I think lol.

Love to everyone.

How is your mom Lynne?

Sue xx

 

Anal squamous cell cancer

13 Jun 2018 18:28 in response to Suzym

Mum is doing ok, she came home but went in again last weekend. She had another UTI, she is just prone to them, as she has tumours on her kidneys, never been confirmed if it’s cancer as the procedure too evasive and if they did a biopsy would make it worse. So she Is home  again now with massive antibiotics!!

just have to keep going as there  isn’t much they can do because she has numerous other conditions which could be risky. Funnily enough they even  considered radiotherapy to reduce the kidney tumours but after talking to a Doctor yesterday he thought it would be too much. And as we all know that having been through it it’s not pleasant and causes it’s own problems. 

I suspect this could go on for a while, my poor Mum.

Lynne xx

Anal squamous cell cancer

14 Jun 2018 01:39 in response to Lyndylou67

Hey Lyndy,

Unfortunately, I think that bowel and/or bladder incontinence can occur from the treatment.  I'm 8 months out and it still hits me every once in a while, but it has definitely improved.  I could go into detail, but I'll spare you from that.  I have been on a low fiber diet since treatment and it really seems to help with the potty pain, but it's difficult to get the proper nutrients.  My guess is that the location of the cancer makes the potty pain linger longer for some than others.  There is a huge difference if I eat fiber.  Ointment also helped tremendously with the painful pee.  It adds a layer of protection.  I'm so glad you have gotten passed the two week mark and things aren't as bad for you.  I am finally getting my gallbladder out next week.  It's taken way too long to get this accomplished.  I should start feeling better once my body adjusts.  

No dialators for me.  They weren't offered.  I'll probably regret it at my next yearly physical.

I'm so sorry that your mom is having those issues.  That's tough when you don't feel that great yourself.  I agree about making sure you are up to returning to work.  I don't remember how long it took before I didn't feel wiped out all the time.  I still get tired, but I'm ok for several hours.  My tummy has kept me down.  Hang in there.  Baby steps.

Hugs to all, Sheri

Anal squamous cell cancer

22 Jun 2018 05:20 in response to texasgirl

Hey Lyndy,

I hope it has gotten better for you this week and that your mom is feeling better as well.

Have any of you ladies noticed a head fog?  My long term memory has always been bad, but I've noticed that my short term memory is also a bit foggy (like remember what the doc said).  I don't know if it's from the trauma of the diagnosis or from the medications and was wondering if any of you have noticed a bit of a change.

I miss chatting with you ladies, but I'm so glad that the worse is over.  Gallbladder out yesterday.  Lots of pain in the middle of the night and today, but I should be fine in a few days and can to start fattening up.

xxSheri

Anal squamous cell cancer

22 Jun 2018 05:37 in response to texasgirl

Brain fog? I appear to have a significant, ongoing cognitive impairment. No memory, long or short term. Unable to think in the abstract, thoughts are purely reactive. Inability to worry/care/plan/ponder or hold a negative thought. Sometimes completely deatched. Forget words, sometimes struggle to get words out.

All of this while appearing to remain articulate. Meant to write something else but I've forgotten what it was.

But I ent ded. Which is nice.

 

Anal squamous cell cancer

23 Jun 2018 05:56 in response to texasgirl

Hi Sheri

hope you fell better soon, hopefully having your gallbladder removed will help.

i don’t seem to have brain fog, but I think constantly about what my bowels will do during the day. Frightened to go out sometimes!

starting using dilators last night, it was ok but had a dull ache afterwards, but soon went to sleep and it seems ok this morning. 

Take care

Lynne xx

Anal squamous cell cancer

23 Jun 2018 20:29 in response to Taff

Hey Taff, I forget words as well.  Not sure I would mind being unable to hold a negative thought, but I'm sure that all of it must be very difficult for you.  Did you notice this after diagnosis or was it an issue before?  

I'm back to where you are, Lyndy, with the constant worry about potty issues.  I had several mishaps while out and about for 2-3 months after treatment.  It did get much better and controlable....but now a setback with this surgery.  Hopefully it will level off in a few weeks.  

It will get better for you.  It just takes a little time.  And I was eating lots of fatty foods trying to gain weight which made it worse.  

xxSheri

Anal squamous cell cancer

28 Sep 2018 16:04 in response to texasgirl

Hi everyone

As I was one of the last go through the treatment I wondered how every one is doing?

i had the results of my scans yesterday and heard the magic words “you’re in remission”. Am so relieved.  I now don’t have any appointments until November with the colon-rectal team and oncology a the end of January.

 I still have issues with my skin in that area but my oncologist did say I had been fried! Loving the menopause  that I was pushed into especially the night sweats during our hot summer! Still using the dilators but can’t move from the second size to the third, it’s till too painful.

apart from that I’m now back at work and have takin up cycling, decided to look after myself a bit better.

take care Lynne.xx

Anal squamous cell cancer

29 Sep 2018 00:35 in response to Lyndylou67

Hi Lynne,

It's great to hear that you feel well enough to be back at work.  How is your mom doing?

Thankfully I am still in remission.  Next scan the end of October.  They do a scan every 3 months during the first year and then every 6 months.  I still can't venture far from my potty.  The potty issues became controllable a few months after treatment, but it's been uncontrollable with the gallbladder issues.  I'm seeing a nutritionist and a gastro doc, but the gastro doc has been unable to determine the cause of the tummy issues and the nutritionist tells me to eat anything and everything.  Normally I would be more selective with my diet but I have to eat, eat, eat to gain weight.  I spent another 9 days in the hospital which I have actually grown fond of.  My weight was dangerously low.  The hospital doc thought my stomach pains might be from gastroparesis.  They could not do the scan because I was on pain meds which they tapered me off of, but they gave me the medication to treat it.   I have been able to gain a pound a week but have 23 to go to get to my normal weight (which is still considered underweight).  It's been scary and I wasn't sure I was going to be able to pull myself out of it, but I'm feeling stronger and better mentally althouogh I now have chemo brain.  I think I'm older than the rest of you ladies and was probaby more susceptable to it.  The radiation permanently damaged the tissue and I have lots of scar tissue so I will always have bum pain.  I am seeing a pain management doc and I hope to get a nerve block.  The pain grates on my nerves.  Of course all of this could still be withdrawals from the pain meds.  The length of withdrawals is different for everyone and I was on a very large dose.

I think of all of you ladies (and Taff) often and I'm so glad to hear from you and that it's good news.

Group hug, Sheri

 

Anal squamous cell cancer

23 Feb 2019 21:29 in response to Lyndylou67

Hello everyone, 

How are you all doing?

Was thinking of you all, and thought it might be nice for  a catchup, you all were such a support for me while I was going thru that horrible time, I'm more or less back to my normal self now, still get tired easily and fell my age a bit more but otherwise doing great.

Please all let me know how you are

Love Sue xx

Anal squamous cell cancer

25 Feb 2019 10:29 in response to Suzym

Hi Sue

Lovely to hear from you. Pleased you are back to your normal self.  Same here, although a little weary of what I eat and like you feeling a little more tired than I did before or is it I am analysing things a little more?  Still having regular visits for check up at the hospital, as I am sure you are.  Next will be end of March and meeting again in April with my consultant.  Lovely to hear from you and appreciate the little conversations this little group held which gave me strength when I needed it most.  Love to you and your family and wishing you health and happiness in the future.  Love Mandy x  

Anal squamous cell cancer

26 Feb 2019 02:34 in response to Mandydk

Hi, this is Texas Gal.  I am so thrilled to hear from you ladies!  I’ve thought about you often.  

I was hoping to go back to normal after treatment but I did not handle the treatment well.  I’m 15 months out and still struggling.  I have pelvic radiation disease.  I still have inflammation and pain in that area that grates on my nerves.  That entire area atrophied.  The radiation destroyed my hip bones and the base of my spine and I’m nauseated off and on throughout the day.  It affects the heart and teeth.  I’m scared to go to the dentist.  I stay pretty close to my bathroom.  I’m still struggling to put more weight on.  I gained 20 but need to gain at least 11 or 12 more but I’m stuck.  Any suggestions?  I doubled the protein drinks but it’s not helping.  No evidence of disease.  Next scan in May.  I found a great personal care physician that has referred me to pelvic floor PT which I’m dreading but hoping it will help.  My oncologists never mentioned it.  Since the treatment is universal I chose to stay in Austin; however, I’m discovering that some docs know more than others.  For instance, I was not told to go to treatment with a full bladder to protect my organs.  I learned this from another support group but after I had completed treatment. 

I miss chatting with you guys and still hope to meet you one day.  My youngest is getting married in May so all fun money is going towards the wedding.  Maybe in 2020. 

I am so glad that Sue and Mandy are doing ok.  I hope all of you are strong and healthy. 

XO Sheri

Anal squamous cell cancer

26 Feb 2019 08:01 in response to texasgirl

Hi Sheri, 

Its lovely to hear from you, I think of our little group often, it's almost a year now since treatment, I never thought I'd ever get back to normal, but considering how rough the treatment was I'm feeling more or less back to how I was.

I'm so sorry your still suffering, they always insisted with us here in the UK that we drink at least 3 cups of water before radiotherapy in order to lift your organs out of the way. As for putting on weight I'm not sure what to tell you, I wish I could loose a few pounds but at least I'm not putting more on! Lol

Congratulations on your daughter getting married ,

I've just come back from a holiday in South Africa , I went with my sister-in-law and had an absolutely fabulous time. I was worried a little bit about coping with the journey but I was fine.

We are having a bit of a heat wave here in UK at the moment, it's lovely, makes everyone feel much better, can't believe it's been 18°C and it's still only February!

Keep in touch, hope all goes well with you, 

Love Sue xx

Anal squamous cell cancer

26 Feb 2019 08:07 in response to texasgirl

Hi Texas Gal

so good to hear from you and the wonderful news of the forthcoming wedding. You do seem to have had a rough time and I can’t believe no mention of the water drinking prior to treatment. It was something I just assumed we all had to endure. There was a girl having treatment with me who just couldn’t manage the amount we were told to drink.. 4 1/2 cups Within the half hour prior to treatment..so your bladder was full and she struggled to hold it in. It also made weeing afterwards so painful because of the raw area......I’d never drank so much water in a short space of time in my life! You have managed to increase your weight which is good...not too much suddenly may have a chance to stay on...I always feel small meals and very regular help to keep weight on... Plenty of creamy pasta, roasted potatoes and puddings with every meal! Easy to say if you have a great appetite... I’m still in touch with one girl who started her treatment and finished prior to be starting mine and we met up in the summer which was really lovely. It would be good to meet you all some day....thank you for staying in touch. Love you all my dear friends. Mandy x

Anal squamous cell cancer

26 Feb 2019 08:14 in response to Mandydk

Hi Mandy, 

Lovely to hear from you, I'm glad your getting on ok still, you sound in about the same place as me , I do still get quite tired easily, and I do have to watch how much fibre I eat, but after what we've been through I'm amazed how much better I feel, I do still fart a lot too!!

I'm back at work full time, and not had any more days of sick since! I think my worst complaint is how much back pain I sometimes get but I know what painkillers to take now to get that under control,  and I don't need them all the time.

I've just told Sheri I've not long come back from holiday to South Africa for 3 weeks, it was a fantastic holiday and I thoroughly enjoyed the experience, I did wonder at one time if I'd ever be able to do long haul again but I was fine.

Love to you and your family, hope they are ok,

Sue xx

Anal squamous cell cancer

26 Feb 2019 08:43 in response to Suzym

Hi sue

forgot to mention the farting. Yes like you it’s quite something. My family will vouch for me in saying I never did it before but I just don’t seem to be in control now. It has got better so hopefully I won’t be an embarrassment to them for much longer. The holiday sounds great. I’ve not be outside the Uk yet, for no other reason than work and other commitments.. I’ve kept myself busy which I found to be my saviour. I only had 4 days off after treatment which was straight after the Easter break and took a few shorter days I.e. finished work at 4 instead of 5.30... I found this helped as it kept my mind free from nasty thoughts and constant googling..which I am sure we are all guilty of. I do feel less tolerant in conversations and easily loose concentration..unless it’s just age that’s causing this ..do keep in touch and wishing all you girlies well. Mandy x

Anal squamous cell cancer

26 Feb 2019 08:45 in response to Mandydk

If anyone is on Facebook I would love to keep,in touch..I don’t post regular I.e. what I have just eaten or where I have just been...but it keeps you in touch with friends easier...up to anyone but happy to. X

Anal squamous cell cancer

26 Feb 2019 10:11 in response to Mandydk

Hello everyone,

What a lovely idea that you are connecting with other members on this thread, forming great friendships and exchanging Facebook details. It's nice to see you are all getting on so well. 

However, please do not exchange details of your Facebook profiles on this thread as by posting publically you would be sharing this information with anyone who sees the thread which is against our terms and conditions

You can however safely exchange this information via private messaging Wink 

Thanks a lot for your understanding and best wishes, 

Lucie, Cancer Chat Moderator

Anal squamous cell cancer

26 Feb 2019 20:09 in response to Suzym

Hi Suzy,

Yes, it's very frustrating to me that the radiology oncologist did not know this or maybe he expected his nurses to tell me.  I actually started feeling better last December but still have a long way to go.  If I could get my weight back on I could eat different foods that would be more gentle on the digestive tract.  

South Africa sounds wonderful!  I'm so glad it went well and your are back to your old self before treatment.

Big hug,  Sheri

Anal squamous cell cancer

27 Feb 2019 15:28 in response to texasgirl

Hello girls how lovely to reconnect with you all!

im currently in Cuba this was the holiday we had to cancel when got diagnosed so it’s a major milestone to be here. All is good with me although yep Mandy the farting can be a bit embarrassing lol and sometimes when I need to go I need to go! But on the whole physically not too bad I do seem to get tired a lot quicker and the concentration isn’t what it used to be but maybe that is just age!

i did struggle a bit mentally at the end of last year thinking everything just caught up with me and the reality of what I’d ben through hit me. I’ve got great support at the Maggies centre and made friends with a few lovely ladies - it’s just taking it a day at a time. 

Ne g check up 23rd March so fingers crossed. Sorry you’re still having such a rough time Sheri hopefully in time things will improve

love to all my lovely bum friends xx

Anal squamous cell cancer

27 Feb 2019 15:33 in response to SandsJ

Hi SandsJ

Lovely to hear you are good and enjoying some time away....say hello to Cuba for me!

I know what you mean,  everything catching up with you....I get that feeling every now and then but having suport from friends and family have pulled me through it those low moments... Its good to hear from you and wishing you good health, happiness and lots of love inthe future.  Do keep in touch every now and then.....Mandy x

Anal squamous cell cancer

28 Feb 2019 09:46 in response to SandsJ

Hiya Sands,

Lovely to hear from you, I'm so glad so far we have all survived , we all seem to be experiencing the same after effects, I can't believe what we've been thru and managed to come out the other side more or less ok.

Hope your having a lovely time in Cuba, I came back from South Africa 3 weeks ago, that was a fantastic holiday which I thoroughly enjoyed with my sister-in-law.  

My next check up is in April, hopefully it will move to every 6 months after that, ( I still struggle with those dreaded appointments)

I too keep in touch with a lady who I met at the hospital with the same cancer as us, she lives locally to me too, and she is doing ok as well.

Love to you all, 

Keep in touch

Sue xx

Anal squamous cell cancer

28 Feb 2019 09:52 in response to Lyndylou67

Hiya Lynne,

Are you ok? Have heard from you,  How is your mom?

Hope she's getting on not too bad. Let us know if your ok when you get 5 minutes. 

Love Sue xx

Anal squamous cell cancer

9 Mar 2019 18:36 in response to SandsJ

Hi to all 

how strange have not been on here for a long time and had the urge to log in tonight so glad you are all doing well , I have a few days where I struggle with everything that has happened and can't quite believe the reality of it all going back to this time last year! What a journey we have all come . So glad that I had support from you all especially you sands you kept me positive in those dark days and I did have a few! 

Getting on with life is somewhat hard sometimes struggling with the effects of treatment I have peripheral neuropathy in my feet and leg cramps caused by the chemo and it is worse at night when I am inactive, I know it Is a small price to pay but it is still something I am learning to cope with.

apart from that I m doing very well and delighted to hear that you are all good too. 

Love to you all Gilliebean xxx I won't mention the farting hahaha

Anal squamous cell cancer

10 Mar 2019 17:18 in response to gilliebean

Hi there

I have recently been diagnosed with stage 3 anal cancer and have found reading these posts really helpful. I start chemo and radio therapy tomorrow and am somewhat apprehensive. 

Good to hear from those of you who have been through this and are out the other end....

Anal squamous cell cancer

10 Mar 2019 17:37 in response to Bum1

Hello, 

Good luck with your treatment, I think it's fair to say we all found it hard towards the end, I personally managed till week 4 before I would say it got hard going.

Are you having a picc line and 5 weeks of radiotherapy?

If you need advice or just someone to chat to while your going thru it, just post on here and one of us will answer. I found this site such a huge help and consider the ladies now my friends.

Sue x

Anal squamous cell cancer

10 Mar 2019 18:32 in response to Suzym

Thank you so much for your reply. I must admit it feels a bit lonely at times and I really welcome the opportunity to chat to people who understand what I am going through. 

I had a Hickman line inserted last week (which was a very unpleasant experience ) and will have 5 and a half weeks of treatment. 28 sessions of radiotherapy along with two weeks of chemo. 

My tumour is large (7 - 9 cm) and there is involvement in lymph nodes in my groin. I feel a bit lost at times and am very up and down emotionally. I think I will feel better once treatment actually starts and I feel as if I am doing something positive to fight the tumour if that makes sense? 

I am lucky as I have a very supportive family and a daughter who is a doctor so I can ask her some of the naieve questions. Although I am aware that she is not a cancer specialist and is my daughter first and foremost. 

As I say I really look forward to being able to chat to someone who has been through it all and is out the other end

thank you again

Cathy x

Anal squamous cell cancer

10 Mar 2019 19:48 in response to Bum1

Your treatment is more or less what we all went thru , you will meet a lot of lovely people as you are going thru it, both staff who help you and other patients, I live quite a way from the hospital, so the last couple of weeks I was able to stay in the hostel at the hospital where I met a lady with the same cancer as me and who also lived locally to me, we have remained friend and still support each other when we go for check ups. I also had my youngest daughter who was there for me all the way thru.

I can't believe now it's been a year since we all went thru it, don't be afraid to ask questions at the hospital, and keep them informed of how you are feeling, your skin will get very sore..tell them, they have loads of medicines to help , ask if they provide pottys , mine was a godsend when treatment got difficult, you will feel her tired, go to bed and rest, I had a few weeks when I just took to my bed and let my family wait on me for a change. Your family and friends will feel useful if you let them look after you, and most of all don't be afraid to have a cry!!

Sue x

Anal squamous cell cancer

10 Mar 2019 20:58 in response to Bum1

Hi

welcome to this little bottom club. Keep your spirits up and if you feel liking asking a question no matter how trivial or silly it may seem at the time ...ask away. I’m 1 year past treatment and in myself pretty much back to normal apart from the Bottom burps! I also had stage 3 so please ask away...anytime. We are here for each other. At the beginning I felt so alone but once I joined in this little group it helped enormously..love to hear from you...on your journey. Best of luck tomorrow. Mandy x

Anal squamous cell cancer

11 Mar 2019 00:49 in response to Bum1

Hi there Cathy (Bum), I’m 17 months out. I was also 3b. I was misdiagnosed by 2 docs and was pretty ill by the time treatment started.  Currently no evidence of disease.  Next PET scan in May.  I didn’t know at the time what I know now and have learned from ladies in another support group. I apologize if I’m telling you things you have already learned.  Be sure to drink lots of fluids during chemo to flush it out of your system. A full bladder during radiation protects surrounding organs. And you need to do pelvic floor physical therapy pretty quickly after treatment. Otherwise everything atrophies. Most people don’t notice anything from the radiation for 2 1/2 weeks. The docs will prescribe ointment and pain meds to make you more comfortable. They can prescribe something for nausea if you should need it.  Eat small meals throughout the day and avoid fried, spicy and fatty foods.  Once you start to feel the burns use lots of ointment to keep the pee from burning when it hits the skin. But make sure you don’t have any on during treatment. Sleep without underwear and allow the air to hit the area.  Sitting in a tub of warm water helps with the discomfort.  If the pain meds make you constipated take a stool softener.  

It was very scary to me, but I’m a big OLD (68) baby.  In fact, I’m still scared.  A few of the ladies managed quite well with treatment. The treatment is universal, very successful, but really tough. I have discovered; however, that some docs know more than others. I may not see your posts right away but I will always respond. Hope this time breezes by for you. I will keep you in my thoughts.

Hang in there.  It DOES get better. Sheri

Anal squamous cell cancer

15 Mar 2019 04:27 in response to Mandydk

Mandy and SandsJ  I somehow overlooked your post.  I saw my radiology oncologist Wednesday and asked about having a full bladder prior to treatment.  Apparently the team has never heard of it and don't understand how it would help anything.  I took information on a pelvic floor therapy place that my new PCP referred me to.  When I gave the oncologist the information she said "oh, we refer people to .......".  And I'm sitting there wondering why they didn't refer me.  Luck of the draw I guess.  I'm getting help now so that's super.

Thank you for the suggestions!  I am eating everything I can think of but it's just not working.  There is a 6 week Cooking After Cancer class starting April 1st.  I didn't feel up to going the last round and it is not conveniently located (peak traffic getting there), but I'm determined to make it this time.  My hubby took over the cooking years ago because I worked long hours.  He is a great cook but he cannot understand no fatty meats and nothing fried or spicy.  So I'm going to tackle it.   

Sands, I'm sorry you were struggling mentally.  It's a traumatic diagnosis for us and for the entire family.  I feel like I'm walking a fine line holding on always a bit emotional, but I'm going to make it just fine.  And chemo brain is real, but I'm hoping that this is as bad as it will get.  

Mandy, I sent you a message with my FB info.  I rarely post but always seeing what everyone is up to.

Much love and big hugs, Sheri

 

Anal squamous cell cancer

10 Apr 2019 21:23 in response to Bum1

Hi Cathy 

how aare you doing? Just seen your post  ,I guess you will be in week 2 or 3 of treatment? It can be quite daunting ,they actually operated and removed my cancer in the lymph node in the groin as they believed my cancer was somewhere else but when they checked the other parts they removed it was not the case and found that the lymph was a secondary and the primary was not where they had thought ,they had missed mine on two examinations and then found it on a pet scan so after 4 operations they then found the primary which of course was anal! So then it was treatment! 

I was worried because it had already spread to the lymph gland in the groin and also to some nodes on the pelvis but the treatment seems to have worked ,it is harsh but you will get through ,just take each day and don't plan to do anything as you will be absolutely nackered! The worst time for me was the two weeks after treatment when you are not going to  the hospital anymore and you feel abit deserted and you do feel very much like ****! But I knew that was coming and soon I began to get better.I am now a year post treatment and so far everything is looking ok. Yes I have side effects but I m grateful for my life! I hope that you have people by your side to help you through the tough days.

good luck with the treatment and tick those days off! 

Dont forget to take all the creams and potions they offer you and slap it on every night to stop the skin from breaking it helps if you do it from the start.

make sure you have your 5 year exemption certificate for prescriptions also.

let us know how you get on will be thinking of you .

gilliebean x

 

Anal squamous cell cancer

11 Apr 2019 03:28 in response to Bum1

Hi Cathy (Bum1),

How are you feeling?

Sheri

Anal squamous cell cancer

11 Apr 2019 06:54 in response to gilliebean

Hi Gillibean and Texas girl

 

i am now in week 5 of treatment and second week of Chemo. The time has passed surprisingly quickly as I have a 2 hour round trip to the hospital, so that plus treatment time takes up half the day and then all I want to do is sleep once I get home. 

It has been had at times and my skin is now very sore and painful. I joke that I am either walking like a penguin or reclining like a Roman goddess!

the first round of chemo was rough as I had very burned hands and feet and a mouth full of ulcers along with almost constant nausea. This time not so bad as they haven’t given me the Mitimycin. Is this usual? I just assumed I would have both drugs again. 

I was determined to do this on my own as much as possible and try not to rely on family and friends but after one week of patient transport I gave up and have had a separate family member stay with me for a week at a time to ferry me to and fro and provide company. My family all live at the other end of the country so this has been quite an undertaking but, of course they all did so willingly. My husband is a sheep farmer and so this is his busiest time of year so unfortunately he needs to keep the business running and is not available to help much on a practical level from the point of view of lifts to hospital  

I am very grateful for the patient transport volunteers etc but it just didn’t work for me. I didn’t know within a 2 hour period when they would collect me and I didn’t have less than a 2 hour wait after treatment for a lift home. Often it was a taxi firm and I felt guilty for costing the nhs a large taxi fare. Also the nasty chemo side effects were not helping. 

I have 7 radio sessions left and an appt a week after Easter to have the Hickman line removed but I’m a bit confused as to what happens after that. Can anyone enlighten me?  I am also interested to hear about your experiences of having the line removed, I had a particularly bad experience with the insertion ( after 90 mins of trying the doctor called for a consultant to do it,) so I am feeling very anxious about the removal... although I know it is not as complex as the insertion....

oh dear, I am aware that I am sounding like a right morning so and so....  please put it down to treatment fatigue. I am quite jolly really!!

thank you for your help, sharing of experience and advice

i am off to slather more manuka honey cream on my undercarriage and lie with my legs splayed so that the air can get to the sore bits before by brother ( latest taxi driver) gets up.

oh and I am really glad to hear from you bum cancer veterans that there is a life after all this!

take care

Cathy x

Anal squamous cell cancer

11 Apr 2019 08:19 in response to Bum1

Hi Cathy,Gillibean and Sheri

lovely to hear from you all...Cathy ..it will get better and when you reflect in a year or so you will think it wasn’t really that bad. It’s only a few weeks and as you say time has already gone quickly.  I had an appointment with consultant yesterday and everything is looking good. Just a general tomorrow at a local hospital and no more scans for a year..follow ups every 3 months, but this is good. It shows you are being  monitored and no body has forgotten you post treatment.  Thanks Sheri for the FB message, I’ll look when back on. I don’t use much but it’s nice to see people’s busy lives after treatment ... Gillibean it sounded a rough ride but you are through it....a few bottom burps but really most things are sort of back to normal. Cathy like you my husband and I are self employed so there was really no time off for me. I was tired straight after treatment had 4 days off which happen to be Easter hols but then straight back into work. I am however grateful for this. It didn’t give me time to ponder or google things. It kept me busy and this worked for me. It’s not for everyone I know but it was definately my saviour. I didn’t get the bell! Sad about this most of you girlies had a bell to ring at the end of treatment but the hospital I was under didn’t have one...so it ended and seemed a little flat without the journeys at the end...Cathy one little tip..my best investiment was a plastic bucket to wee in.  Haha! When it gets so sore to go to the loo it was a pleasure in a bucket of warm water...sounds terrible but at least I didn’t dread going. Wishing you all well and Cathy all the best for the final weeks of your treatment..keep them legs spread eagle and you’ll get through it! Love and kisses xxx

Anal squamous cell cancer

13 Apr 2019 06:18 in response to Bum1

Hi Cathy,

My medical oncologists said he would like to keep me on the same mix that he gave me the first round of chemo IF I could handle it.  I told him I could.  I was wrong.  It was much worse the second round.  Since you had a bad reaction on your first round of chemo, it's possible that your doc tweaked it a bit.  I live in the US but at the time, this was the only support group I could find and these ladies are wonderful!  My point being that I don't know what a Hickman is.  I had a port and the doc nicked my lung putting it in which caused it to collapse.  So off to a rough start.  They put me to sleep to put the port in, but I was awake when the surgeon removed it.  Piece of cake.  No pain and no big deal when he took it out.  He deadened the area and we chatted the entire time.  

I've also recently (this week) found a digestive enzyme that actually works and keeps me from running to the bathroom all day. I'm hoping that it will allow me to absorb nutrients and gain the last 10 pounds that I've been trying to put on for months.

Doesn't it feel wonderful to only have one week more to go?!  I was so happy to get my port removed.  I'm not sure of the protocol there, but I saw both oncologists and my surgeon every 3 months for the first year and a half and had PET scans every 3 months.  I'm now on a 6 month schedule with the oncologists and the scans, but the surgeon still wants to see me every 3 months.  

Hang in there Cathy.  Just one more week to go.  It does get more painful as you go and it takes a couple of weeks before the pain eases up. The radiation continues to work a few months after treatment has ended. 

The wife of a sheep farmer sounds like a wonderful life.

Mandy, I'm surprised you were a stage 3 and handled the treatment so well.  Maybe a lot of it is attitude.  I'll be the first to admit that I'm a whimp.

Take Care,  Sheri xo

Anal squamous cell cancer

13 Apr 2019 09:27 in response to texasgirl

Hi Sheri

thank you you for your reply.  It does indeed feel wonderful to have only 4 days now left of treatment. Although I have been warned that the pain will get worse before it gets better....  it will be nice however not to have the two hour round trip to the hospital to contend with. 

The hickman line sounds the same as your port. I am just being a wimp about having it removed as I had a bit of a traumatic time when it was put in. Although nothing as bad as having a lung nicked!!!  Once that is out I will really feel like I am on the route to recovery. 

 Being the wife of a sheep farmer is indeed a wonderful life..  most of the time. But as farming, and self employment generally is a rather unpredictable life I work full time in education. It’s a job that I love and find really enjoyable so I am looking forward to returning to that once I am well enough. It’s difficult to judge when that will be as I am still suffering from round two of chemo and with a an extremely sore undercarriage!!

it is good to hear that you and the other ladies in here are doing so well and that really helps when I am feeling sorry for myself. 

I look forward to being able to chat with you all as we continue our recovery, and to helping future members with their worries

hope everyone has a lovely Easter

Cathy x

Anal squamous cell cancer

13 Apr 2019 09:43 in response to Bum1

Hiya Cathy,

I had a picc line for my chemo, and I too had trouble getting it inserted, I ended up having to go back after 4 attempts and a Dr put it in using x-ray, but when it came out I never felt a thing! I too had a bad reaction to my first session, my mouth was really bad, I lost my appetite completely, my immune system went down to zero! Second bout wasn't as bad and I got they that a bit better.

Your skin will get worse for a week or so after radiotherapy finishes, but when it starts getting better you see an improvement quickly from then on.

Ask your hospital for a potty, they are a godsend, I'd have been lost without mine, fill it with warm water ,sit in it for wee's and poos!

I too had a long journey each day but my hospital provided hostel accommodation attached to the hospital for those living a long way away, I stayed there for the last 2 weeks of treatment.

Follow up appointments are every 3 months to begin with, I'm due my next one on 2nd may, I'm hoping they will go to every 6 months if all is ok.

Sue xx

Anal squamous cell cancer

13 Apr 2019 17:19 in response to Suzym

Hi Sue

it sounds like I am having a similar experience to you. I have just finished round 2 of chemo and the side effects this time are not as bad..  and seem to be later starting. I have a very sore throat and some mouth ulcers but not as bad as last time. I also have sore hands and feet but not the burnt peeling skin I experienced previously.

the worst thing for me is the sore and peeling skin around the whole genital area, especially the tops of my legs which make walking or even just any movement below the waist extremely painful. I have developed a very interesting hobble...

I like the potty idea and will ask about this at my next review on Monday. It is a real balance, trying to eat and drink enough whilst always being aware of what goes in must come out...  

I have very little appetite and a constant metallic taste in my mouth. I have gone from a 10 cups of tea a day girl to not being able to bear the taste. Hopefully this will return to normal in time. My radiotherapy team have warned me not to lose weight before treatment ends as the machines have been carefully calibrated..  so I am doing my best to eat well. Shame really as I could do with losing a few pounds...  every cloud and all of that! 

I can’t tell you how much it has helped being able to read about the journey of you who have gone through treatment before. And being able to chat on here. To be able to share experiences and fears with someone who really does understand makes a massive difference and has really helped when I have been feeling low and scared. Hopefully I can do the same for someone else in time. 

I am glad to hear that you are all doing well and I wish you continued improvement and optimism. 

Onwards and upwards!

kind regards,

Cathy x

Anal squamous cell cancer

13 Apr 2019 19:06 in response to Bum1

I know what you mean about the burnt skin, I would even look at my radiation burns, the only bit I could see were the tops of my legs and they went a horrible grey colour before peeling, I was so glad when I had my last session,  but once I got home I felt sooo I'll, my daughter made me go to bed and that's where I stayed more or less for a week.

They gave me a load of protein type milk shakes and juices at the hospital when I had no appetite,  even now I can't have too much fibre, they told me to eat what I fancied the most so at least I was getting something, the funny thing is I didn't loose very much weight at all! 

When I went thru it there were about 6 of us on here which helped such a lot as we were all at different stages, we got each other thru. You'll be ok, don't hestitate to message if you need a bit of support or a bit of a moan,

Sue xx

 

Anal squamous cell cancer

14 Apr 2019 09:45 in response to Suzym

Hi Sue

are you able to recommend any magic creams or lotion??  I have only four more sessions to go. It the pain is really bad...  each time I go to the loo I leave a layer of skin on the seat...  and walking is just pure agony. I have medihoney and a pink cream (the name escapes me) and I know they will give me cream to use once treatment finishes but I am hoping someone has happened upon a magic solution...

I also know that things will get worse before they get better...

any help very gratefully received!!

Cathy x

Anal squamous cell cancer

14 Apr 2019 10:24 in response to Bum1

Hiya Cathy,

I managed with what the hospital provided which was Diprobase cream and little vials of morphine gell, I would risk using anything from over the counter, the morphine gell helped a hell of a lot, and the gave me loads for when I stopped going to the hospital, I kept it in the fridge, I had so much I threw some away afterward, let the air get to it,  wear loose cotton, I even bought big cotton knickers. I use to sit in warm salt water every day too. Not much help really am I, another couple of weeks and you will start to feel better.

Sue xx