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Anal squamous cell cancer

14 Apr 2018 09:02 in response to Lyndylou67
Hiya Lynne, they have given me stuff automatically, my first lot of Diprobase was given to me by the lad who does my radiotherapy, then on Monday last they had automatically booked me to chat to the skin care nurse she gave me more Diprobase, the potty and organised my morphine gell. They have to prepare that so it takes 3 days, then when I went for radiotherapy on Wednesday they had it ready for me. Then on Thursday I'd got an appointment booked with the fem care nurse, again done automatically.. I can't believe it's almost over, I know things can start getting a bit worse from now on, but I just take one day at a time. You will soon be where I am now, good luck, I will be thinking of you. Sue xxx

Anal squamous cell cancer

14 Apr 2018 17:15 in response to Suzym
Hi Sue, Don’t let it worry you too much about it getting worse before it gets better, it really all depends on how your skin is now. My Radiographers told me that they tell people this as standard as if their skin hasn’t broken meaning it can get worse when it does. Mine however had already broken so never really noticed it getting worse after it finishes but what I will tell you is that when you hit that special day and turn the corner your skin heals up really quickly. It’s amazing how quickly it regenerates but what I wasn’t prepared for is how tight the new skin felt as keep applying tons of cream as soon as you can! I am just over a month post treatment and have been managed to do a bit of weeding in the garden today so things do get better!!! My thoughts are with you all Best wishes

Anal squamous cell cancer

14 Apr 2018 23:33 in response to Lyndylou67

Hi lynne

great to meet you the other day I m not on here much at the moment but have been thinking of you , what time are you having your pic line in on Monday? I ve been up there every day visiting text me if you want to meet up for coffee in Macmillan love Gilliebean x

Anal squamous cell cancer

14 Apr 2018 23:48 in response to gilliebean

Hi everyone 

have been thinking about you all and hope that you are all coping in your various stages ,I m getting stronger everyday but it does take it's toll! If anyone gets the acid reflux ,I have found purely by accident really that a protein shake works ,I take lansoprazole when I wake up and wait at least half hour ,then have a Cambridge shake ,chocolate works for me but not with laxative as they do several !  I add twice the ammount of water and blend it then sit and drink it slowly I wait at least half an hour before I have a cup of tea and then just be sensible with the eating tomatoes seemed to be setting it off so I m leaving them our for now ,I don't eat meat and I would advise not to have cheese as it's a strong flavour . I seem to be good for the rest of the day and take Gaviscon before bed. One day I did a test and didn't have the shake and it came back!  Obviously the shake is not for dieting I had them in the cupboard as I use them when I am away so that I know I m getting all the necessary vitamins. I swear there is something in them that settles or lines the stomach ,I was suffering so much and tried one to see if I could keep it down as I was bringing every thing up and couldn't believe it when it worked!  Maybe if you don't try that one you could try another make it has to be worth a go!  Hope it works for someone else! Anyway I have some family issues just now with a sick relative so that's why I ve been quiiet unfortunately it's the dreaded cancer again! So am up the hospital most days .love to you all and best of luck to you Lynne for Tuesday call me if you need me!  Love Gilliebean x

Anal squamous cell cancer

15 Apr 2018 10:01 in response to gilliebean
Hi gilliebean, good to hear from you....sorry to hear you had been having problems with acid reflux and have a poorly family member. I wish them well. Hopefully you reflux will sort itself out soon. I haven’t had this problem at all. I seem to have got away with side effects...my skin broke down badly by week 5 but this thankfully has all healed. I am getting stronger each day and not feeling so tired ....even did some gardening yesterday. I hope everyone is managing well with their treatments and side effects they may be encountering. I think of you all lots...it’s been such a wonderful little group to keep in touch with. Although I don’t post that much I read messages as they come in and it’s comforting to know your not alone. Lots of love Mandy. xxx

Anal squamous cell cancer

15 Apr 2018 10:39 in response to L27
Hiya, It's Sunday morning, tomorrow is the start of week 5, I'm in a bit of pain this morning with a sore bottom, so slapping on the morphine gell. See how it goes as the day goes on. Sue x

Anal squamous cell cancer

16 Apr 2018 11:43 in response to Suzym

Hi Sue,

Just saw your last post, I hope the morphine gel helped. I’ve been thinking of you this morning and wishing you well for this week. Take care, lots of love Lisa xx

Anal squamous cell cancer

16 Apr 2018 11:46 in response to Lyndylou67

Hi Lynne,

Just a quick message to say good luck, been thinking about you today. Today is the first step to recovery and beating this thing. We’re here for you! Keep us posted.

Sounds like you had a lovely last day of work and had some very thoughtful gifts. You’re obviously highly thought of. 

Lots of love 

Lisa xx

Anal squamous cell cancer

16 Apr 2018 12:41 in response to lisa1975

Hi Lisa

thank you have butterflies the size of elephants! Just getting ready now.  Will let you know how my first week goes,already have slapped on the calendula cream I was given.

well here goes....eeek!

Lynne xx

Anal squamous cell cancer

16 Apr 2018 18:58 in response to Lyndylou67

Hi Lisa,

Thinking of you.  Hoping it's smooth sailing this week.

Big Hug,  Sheri XX

Anal squamous cell cancer

16 Apr 2018 19:12 in response to Lyndylou67

Wishing you all the best Lynne - sooner you’re started sooner your finished - take care xx

Anal squamous cell cancer

17 Apr 2018 03:11 in response to lisa1975
Hi Lisa, Wishing you all the best, I hope your treatment goes as well as mine, I've 4 days of chemo left and 7 sessions of radio, except for first thing in the morning for a couple of hours no real pain after that. Keep slapping on the cream and bathing your bottom. Thinking of you, Sue xxx

Anal squamous cell cancer

19 Apr 2018 11:32 in response to Suzym

How is everyone?

I'm feeling miserable today! Just received a curt letter from Payroll saying that my full pay ceased on the 13th April and my half pay will cease on the 13th June.

The last thing I need right now is money worries and now it means I’ll possibly be returning to work way before I am ready and well enough! Not happy!

Trouble is, I know at some point I will be having further treatment for this liver secondary, but I don’t have a clue, how long off that is, what they’ll do and how long i’ll need to recover after that!?!  Just fed up.

Lisa xx

Anal squamous cell cancer

19 Apr 2018 11:47 in response to lisa1975

Hi Lisa

Thats not so good last think you want to worry about. I know they’ll say oh it’s standard letters but really a wee belter t of compassion and common sense should be used. At the Maggies I go to there are benefit advisors who help you see if you are entitled to any benefits while you are unable to work - I think MacMillan offer a similiar service it is definitely worth checking out and one man I know gets a work pension  but was also entitled to a benefit - can’t remember the name of it - do you have any of those services near you? 

I think they make it really difficult to put people off so if you can get help I’d try.

How are you doing apart from that?

Ive had a rubbish week too - I’d b en getting wee floaters in my eye for the last few weeks and kept getting it checked and told they’d go away but on Tuesday my optician had a more detailed look and sent me straight to the eye hospital where they found two wee tears in my retina so had to get it lasered there and then! 

Honestly if it’s not one thing it’s another so Iwas  feeling pretty sorry for myself :-(( but then I remember that my treatment is over and I’m in remission so gave myself a shake and getting on with it lol!

you take care and see if you can get any advice

Sands xx

 

  

Anal squamous cell cancer

19 Apr 2018 12:10 in response to lisa1975
Oh Dear! poor you ...try not to worry too much as I am sure there is some kind of benefit that hasn't been mentioned yet. Do ask! As you say you don't know how you will be feeling or when you want to return to work so its best to try and get everything covered while you can....wishing you all the best and speedy recovery. Mandy x

Anal squamous cell cancer

19 Apr 2018 12:49 in response to lisa1975
Hi Lisa, go and have a chat with the Macmillan people, they might be able to help. I still get my full pay but without shift allowance for 6 months and I've just received a grant off them. They help with travel and clothes expenses. But I do know they can sort out any benefits you may be entitled to. There should be a better way for people to get financial help while going thru cancer treatment, but it's sadly lacking. Sue xx

Anal squamous cell cancer

19 Apr 2018 13:00 in response to lisa1975

Hi Lisa

Sorry that you are fed up but try Macmillan, this gave me a booklet on benefits cancer patients can claim and I’m sure they would help you male a claim too. 

I’m still on full pay at the moment so couldn’t claim anything but that’s ok with me.

hope treatment going well, I’m on day 3 and it’s okish so far I do feel queasy and have heartburn but my main problem is sleep which I think are the steroids, woke up at 2 am today but have had some naps from then to now. I supoose I’m just glad I don’t have to do anything, hubby is looking after me!

take care Lynne.xx

Anal squamous cell cancer

19 Apr 2018 13:05 in response to SandsJ

Hi Sands

good job you noticed something wrong with you eye, my hubby at the end of January had an emergency op as his had become detached, all good now though he is just waiting for final follow appointment and will probably need a change in his prescription. Apparently it’s quite common for those of us who are shortsighted. Another thing to add to the list!

keep smiling Sands you will get there.

Lynne xx

Anal squamous cell cancer

19 Apr 2018 13:23 in response to Lyndylou67

Thanks Lynne glad your hubby doing ok hopefully they got mine in time to get check up next week!

Was just feeling sorry for myself if it’s not one end getting zapped it’s the other

I found helped he sleeping hard as well wide awake during the night then could sleep all day - just you r st as much as you can take care

Sands xx

Anal squamous cell cancer

19 Apr 2018 23:08 in response to lisa1975
Hi Lisa, I am in the same boat as you, my sick pay will run out while I’m off sick and I will have no income of my own. The McMillan ladies are great at Clatterbridge, they helped me and they even filled in my forms for me, it was a huge help. I got a grant from them and they applied for PIP for me. I have had my face to face interview for that and am waiting to hear the outcome of my award. I will get something but don’t know how much yet, and the award is for a year and importantly this payment can continue even when you are doing reduced hours etc on returning to work. I researched loads as I thought it was so unfair I get no other help...as I only work a few hours per week I don’t even qualify for SSP!!! So will be left in trouble. Apparently under the old system I would automatically qualify for ESA however that has finished in my area and been replaced by universal credit which I don’t qualify for as my husband works . Find the whole system VERY unfair. All I can say is try not to worry, we have enough on our plates but Clatterbridge McMillan will help you. All the best to everyone Xxxxx

Anal squamous cell cancer

20 Apr 2018 10:34 in response to L27
Oh and I forgot to add make sure you apply for your medical exemption certificate, it entitles you to free prescriptions for 5 years, as I was hospitalized I ended up needing all sorts of things which would have cost hundreds of pounds xx

Anal squamous cell cancer

22 Apr 2018 05:08 in response to L27

Hi Girls

How is everyone getting on?

I’ve completed my first week of treamtment, was very nauseous but have coped.  Sleeping has been been awful, well at night, I think that is the steroids! Taste and smell have been horrible and I’ve eaten because I’ve had to rather than want to. Everything white, white bread, white rice, porridge etc.

take care xx

Anal squamous cell cancer

22 Apr 2018 10:49 in response to Lyndylou67
Hi Lynne, First of all well done for completing your first week. Keep ticking off those days. The horrible tastes will soon subside and your mouth will feel like your own again. Best wishes xxx

Anal squamous cell cancer

22 Apr 2018 11:22 in response to Lyndylou67
Hiya Lynne, at least your on your way now. I had the bad mouth thing too. No appetite, no taste, furry mouth and gums and ulcers, sexing time around it's not as bad. I've only got 3 radiotherapy sessions left now, but I'm not doing too well today. It's the pooing that causes most trouble. Can't wait to get it finished and maybe feel as tho I'm winning. I take medication for acid reflux and I've found the chemo makes that twice as bad, that's what caused the problems this morning. I still think of you all every day, hoping your all coping ok. Sue xx

Anal squamous cell cancer

22 Apr 2018 11:49 in response to Suzym

Great news Lynne and Sue!

Lynne, one week down! Well done! xx

Sue, wow 3 days to go! Soon be over xx

I’ve got chemo this week, then 4 days of Radio the week after.  I am feeling well in myself, my skin has not broken, wonder if it’s because I used the bidet early on, and cream up every time I use the loo (so approx 8 times a day) I have the softest skin ever haha

It does hurt to go to the toilet properly, and this is quite a few times a day. And the itchiness is still a problem but I take 2 different  anti histamines a day, one in the morning and one later in the evening to help during the night.

Thank you to everyone who replied the other day when I was down about money and my pay. I’ll get some further advice and keep you posted! Hubby said we’ll cope and that he doesn’t want me to worry or get stressed about it and that I’m not going back to work til I’m well enough!  Might be living on bread and water lol

take care everyone xxx

Lisa xx

Anal squamous cell cancer

24 Apr 2018 17:13 in response to lisa1975

Hi girls

Although I’m not on here as much now I’ve been thinking about you all - how are you all doing?

Thats me starting to get ready to go back to work- I have a seasonal job at Glasgow airport and had to leave early last year when I got diagnosed as it’s shift work and couldn’t really fit in with my treatments. 

Usually start in April for the summer but they gave me a later start  date of June - a couple of months ago I couldn’t actually imagine going back but now I can’t wait to get my uniform and the red lippy back on!

So there really is light at the end of the tunnel - hope everyone is going ok and taking care of yourselves.

love Sands x

 

Anal squamous cell cancer

24 Apr 2018 18:01 in response to SandsJ
Hiya Sands, Lovely to hear your going back to work, I moan about my job but I do miss my work mates so much, it's the last day of my treatment tomorrow...soooo excited! Sue xx

Anal squamous cell cancer

24 Apr 2018 19:38 in response to Suzym

Awh Sue that’s amazing 96% done!

Just make sure you look after yourself over the next few weeks - I thought I’d be back to “normal” straight away but was so very tired so just take it easy.

At the Beatson you rang a bell after your last treatment - hope they do that at your hospital it’s such a fabulous feeling.

Good luck for tomorrow and let us know how you’re doing

Sxx

Anal squamous cell cancer

24 Apr 2018 19:47 in response to SandsJ
Hiya sands, Thanks for your message, yes we have a bell and in the chemo dept. So I will ring it in the morning. I will look after myself, I've got all my cream and loads of morphine gel, and today I was given a fridge full of protein shakes too because my appetite is non existent at the moment, once the chemo gets out of my system it will come back. Can't believe I've nearly finished, looking back the time has flown. I will keep in touch. Sue xx

Anal squamous cell cancer

25 Apr 2018 08:41 in response to Suzym
Hi Sue, I’m so happy for you that your treatment is nearly over, no more daily visits to hospital really makes a huge difference. Get yourself prepared with tissues for ringing the bells, I found it very emotional especially the radiotherapy one, it was so heart warming that everybody in earshot stops and claps to celebrate with you and wish you well. Well done for getting nearly at the end. Take care and best wishes xxxx

Anal squamous cell cancer

25 Apr 2018 12:32 in response to L27
Weh-hey! Treatment finished, I managed not to cry when I rang the bell! Lol Just got to get rid of my sore bum now. Sue xx

Anal squamous cell cancer

25 Apr 2018 13:25 in response to Suzym

Sue So happy for you!

im on day 7 of radiotherapy, just getting myself sorted now. I gone from going to the hospital nicely dressed to now wearing jogging bottoms! I have at least brushed my hair.

Sands

it so nice to hear that your life is getting back to normal, gives me hope as at the moment I don’t feel it will ever be normal again!

Lynne xx

Anal squamous cell cancer

25 Apr 2018 16:55 in response to Lyndylou67

Lynne

25% done already! I know you feel it’ll never end and you’ll never get back to normal - but you will - jiggly bottoms are a MUST!

you take care and be kind to yourself xx

Sue

so pleased for you now rest and take it easy  xx

Anal squamous cell cancer

25 Apr 2018 16:56 in response to SandsJ

Oops meant JOGGY bottoms :-))

Anal squamous cell cancer

25 Apr 2018 20:45 in response to SandsJ

To be fair I do have a jiggly bottom! :-))

Anal squamous cell cancer

26 Apr 2018 10:19 in response to Suzym

Well done Sue!! Congratulations, now rest and recuperate xxx 

Anal squamous cell cancer

26 Apr 2018 10:21 in response to Suzym
Well done Sue! Now take it easy - wishing you all the best! Mandy xxx

Anal squamous cell cancer

26 Apr 2018 12:36 in response to lisa1975
Thanks Lisa and Mandy, I'm spending the day in bed today, telly on , no knickers, morphine gel on....making pom-poms lol Sue xxxx

Anal squamous cell cancer

26 Apr 2018 13:47 in response to Suzym

Hi Sue,  That sounds good! Take it easy and don't rush....you'll be surprised how quickly you start to heal.  One minute I was sore, sitting on my potty and dosing front and back with water because it was painful....now less than a month later I have totally healed and its been like that for nearly a fortnight.  I don't even feel that tired anymore....its early days but you'll be surprised how quickly the body recovers from such grueling treatment..take care and wishing you and all the girls on this site well for the future. Love Mandy x 

Anal squamous cell cancer

26 Apr 2018 16:10 in response to Suzym

Awh Sue that made me laugh - I’d forgotten about the “knickerless” dats :-))

Mandys right you’ll be surprised at how quickly you heal!

i was at the Maggies today catching up with the guys I’d met on the course and we had an excercise and boxing session was great - although I’m pretty knackered now but it’s a “happy tired”

take care

Sxx

Anal squamous cell cancer

30 Apr 2018 12:55 in response to SandsJ

Great to hear your doing ok Mandy and sue , Lynne into your 3 rd week now end of this week you ll be half way there! And Sandra  great to hear you are getting more active! Sherri you ll get there in the end  and Janelucia you were brave enough to start off this thread in the beginning how are you doing? 

Thinking of you all Gilliebean x 

Anal squamous cell cancer

30 Apr 2018 12:56 in response to gilliebean

Sorry Lisa I forgot you sending a hug your way x

Anal squamous cell cancer

1 May 2018 14:08 in response to gilliebean

Tough few days both physically and emotionally.

Had bad diarrhoea for 4 days, skin has broken at bum, just inside my lady bits and up both sides of my groin, thrush in my mouth(again).

Tired and fed up, getting some tablets for the thrush later today, was given polymen dressing last night for my skin, told to take one Imodium for the diarrhoea, and told to alternate paras and ibuprofen for the pain.

Used the dressings last night, fiddly as you have to cut a piece and fold it and put it in between your bum cheeks then cut some for your groin that stays in place with your knickers. Not ideal but does seem to have given some relief. 

The Imodium seems to have worked.... touch wood!

just need to get through the next few days

 

Radio number 26 today, so will be bell ringing in Thursday afternoon, Yay

hope everyone is doing ok.

 

Lynne.

I’ve lasted well before my skin breaking, I know everyone is different but moisturise as often as possible, never too much. Do it right up between your bum cheeks and your groin. Use a bidet early on and ditch toilet paper early on.

Get some men’s stretchy boxer shorts so you don’t have any knickers lines on your groin to irritate it. 

Take piriton daily for any itching.

These are probably my key pointers to get through this treatment, hope you’re doing good well.

Sue, I hope recovery is going well for you? 

Hugs to all the other lovely ladies on here, hope all is well. 

love Lisa 

Anal squamous cell cancer

1 May 2018 21:15 in response to lisa1975
Hiya Lisa, Ohhh I know how you feel. Where are you now in your treatment? You sound as tho your feeling exactly the way I felt. I am one week post treatment now. Agony doesn't describe the pain, I know they warned me but it felt like it would never end. Walking less like a penguin now, I spent most of the last week in bed. The skin in my groin is healing, I have one patch by my lady bits that is bleeding quite a lot and around my bum where the cancer was, but it's manageable. Used my potty a lot, and the morphine gel with Diprobase and painkillers. So remember about a week after treatment finishes it starts getting easier. Thinking of you Lisa, Sue xx

Anal squamous cell cancer

1 May 2018 21:38 in response to lisa1975

Hi Lisa

 

its sound a complete nightmare. I’ve completed day 11 appear to be over the effects of the chemo, although still a bit of diarrhoea it was really bad last week, even had an accident last Tuesday at the hospital I was mortified! But the radiographers were really kind and tried to put me at ease.

My bottom is just starting to get sore, was given morphine gel today to help. I have ordered some men’s cotton boxers waiting for them to arrive. I have been moisturing every day but I haven’t used my Potty yet, although been bathing.

You are nearly there Lisa, I hope that it will be better for you soon.

Lynne xx

Anal squamous cell cancer

2 May 2018 04:04 in response to lisa1975

Hi Lisa,

Sorry to hear that you are having a rough time of it.  You are in the most painful week.  Thursday is just around the corner so hang in there.  I wanted to tell you and Lynne that I had a really hard time with diarrhea (8 days uncontrollable).  I finally got a nurse that suggested that I completely stop all food until the diarrhea stopped and to slowly introduce bland food.  I only allowed myself about 1/3rd of a banana when taking pain meds.   It took a couple of days and I was really hungry, but it was worth it.  So that's an option should you get it again.  The problem I find with Immodium is that it makes me constipated even just taking two and then it's really painful and becomes a vicious circle.

Sue, I'm so glad you are starting to feel better.

xxSheri

Anal squamous cell cancer

4 May 2018 14:20 in response to texasgirl

HI all

 

yay 50% completed.

Please don’t let anyone play “ring of fire” by Johnnie Cash, feeling uncomfortable!

hope you are all ok ladies.

Lynne xx

Anal squamous cell cancer

4 May 2018 14:36 in response to Lyndylou67
Well done Lynne, soon be finished. Sue xxx

Anal squamous cell cancer

5 May 2018 07:52 in response to Suzym

Yay, I finished my treatment on Thursday and I rang the bell! Follow up appointment in one month and he’ll book my liver scans then. 

Very sore down below and I’m just not fussed on the Polymem dressings as they make the area hot which I find even more irritating, so using nothing apart from pain relief. Clatterbridge and the trust they are in don’t allow the use of creams or gels, only aquamax and the Polymem dressings!

Can anyone recommend any over the counter products? 

Thanks xx

hope everyone is doing well xxx

Anal squamous cell cancer

5 May 2018 08:01 in response to lisa1975
Hiya Lisa, I wouldn't know what to advise on over the counter stuff, I only used what the hospital gave me. What is aquamax? You'd think the hospitals would use the same stuff wouldn't you? I've got 2 tubes of unopened Diprobase I could send you, if you think that would help. I've got quite a bit of the morphine gel too left over but I don't think that would survive the journey as it has to be kept in the fridge! But other than pain relief that's all I used. What about asking your own gp for some potions and lotions? Hope you get on ok, it does get very painful over the next week or so. Sue xx