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Anal squamous cell cancer

26 Jan 2018 21:32 in response to Janelucia

Hi JaneLucia 

Sirry to hear you are having a tough time  - the two weeks after my radiotherapy finished were pretty rough  - I felt worse than when going through treatment - pain and emotionally struggled also felt very “abandoned” had been in a routine for six weeks then it was a bit like right that’s you finished off you go!

I was lucky had an amazing colorectal nurse who I talked to and r abused this was quite “normal”

i hope you’re getting good pain medication and after about two weeks I did turn a corner and started to feel a bit more normal.

i hope you begin to feel better soon / thinking about you

Sands x

Anal squamous cell cancer

27 Jan 2018 02:13 in response to SandsJ

Janelucia, if you have privacy it helps the skin to heal if you don't cover it.  Maybe leave off underwear and wear a skirt or sleep in a gown and maybe only use the bed covers on one side.  I was able to do that while in the hospital, but it became difficult once I got home due to my teenage grandson in the house.  

It takes a while, but I hope you feel better real soon.  

Anal squamous cell cancer

4 Feb 2018 17:00 in response to Janelucia

Hi JaneLucia 

Been thinking about you hope you are doing a bit better and that you’ve started to heal?

Sx

Anal squamous cell cancer

7 Feb 2018 00:35 in response to SandsJ

Hi Janelucia 

how are you doing. I started my chemo and radiation today .i hope that you are not suffering to much since finishing your treatment however even the nurses have told me that a few weeks after is the worst! You ll soon be on the up I m sure.  Sending best wishes to you for a speedy recovery and relief from the burns love Gilliebean x

Anal squamous cell cancer

7 Feb 2018 23:30 in response to Mandydk

Hi Mandydk,

The wait is miserable, but so is the treatment.  The first 2 - 2 1/2 weeks aren't so bad.  Hopefully the days will fly by for you.  

Anal squamous cell cancer

7 Feb 2018 23:40 in response to texasgirl

I'm curious to know if anyone else experienced hair loss?  My chemo oncologist said that most people do not loose their hair with this treatment, but his PA said that I would. ??? I lost most of mine, but it did not come out in plugs like other cancer patients.  Thankfully I had enough hair for two people so it's just super thin now.  I'm not confident enough to shave it unless it falls out more although I see many women that have and they look great.  The chemo nurse said my hair loss was related to my nutrition.  I got off to a rough start and lost 20 lbs that I didn't have to loose.  It seems to have leveled off now at 17 weeks post treatment.

Anal squamous cell cancer

8 Feb 2018 10:36 in response to texasgirl

Hi

 

Thank you for your reply. I am in touch with Janelucia and she has been a rock with all her experiences but its also nice to hear from others going through similar. I feel that my tumor was simlar to yours in size, spread etc so guessing that the experience of the treatment may be similar. I however, have felt fine except for a sore bum!  I hope you are feeling better and and wish you well at your next followup.  I see you mention hair loss in another post...  I was told its unlikely I will lose hair but again everyone is different so I am anticipating its possible.You seem to have had a rough time with weight lose but hopefully you have a better appetite now? xx

Anal squamous cell cancer

8 Feb 2018 20:06 in response to Mandydk

Thank you, Mandydk.  I felt fine with just a sore bum until about a week before I got in to see the doctor for a third opinion.  I waited too long to try to get a third opinion and it was a 6 week wait to get in.  I kept thinking I would get better, but that didn't happen.  I got off to a rough start.  Spent lots of time in and out of the hospital.  I've always had an appetite but there were many days that I had to stop eating to get my tummy under control.  I'm getting better each week.  

Did you start your treatment or do you have another week to go?

Anal squamous cell cancer

9 Feb 2018 10:08 in response to texasgirl

Im just to start the treatment and meeting the Dr on Tuesday. I am having mixture of chemo and radiotherapy and chemo tablets. I will be going every day for 5 1/2 weeks.  I think most on this site are the same.  All I know is that my tumour is large - or as they say advanced. Its not spread elsewhere so localised. The thing with me is I had no symptons. No pain, blood etc.  im sorry to hear you had a rough start but hopefully you are on thte road to recovery ....getting your appetite back will definately help - its good to hear you are getting better each week - this is good news! xx    

Anal squamous cell cancer

9 Feb 2018 18:51 in response to Mandydk

You are so fortunate that it is localized and that it was discovered.  

It is often overlooked due to the location.  And it is usually pretty bad by the time one has symptoms.  

IMost people don't have issues with the radiation treatment for the first 2 - 2  1/2 weeks.  I will keep you in my thoughts.

Anal squamous cell cancer

12 Feb 2018 08:27 in response to texasgirl
Hello everyone, I have been reading your posts about anal squamous cell. I was diagnosed early December, after going to my gp with what I thought was a prolapsed hemorrhoid. They didn't realise it was cancer until it was removed, my consultant is sure he got it all but as it was an aggressive one I'm waiting now to see the radiotherapy oncologist, which I hope will be next week, prior to my p!anning appointment for radiotherapy, I'm told I will have chemo too in tablet form. All this waiting is terrible!

Anal squamous cell cancer

12 Feb 2018 08:44 in response to Suzym

Hi Suzy

I totally agree the waiting is by far the worst bit - hopefully you’ll feel a wee bit better once you’ve seen the doctor and have a plan in place. 

I was diagnosed last Aug and had 6 weeks radiotherapy and the chemo tablets - they weren’t too bad. 

I’ve got my mri scan today as that’s me 4 months post treatment in December when I saw the consultant and he did an examination he said as pleased that the tumour had gone just need to get this confirmed with the scan.

For me this is a really good site as there are so few of us diagnosed with this type of cancer its good to be able to chat to others who’ve been or are in the same surustion

i hope you get on okay over the next few days and get your plan in place - if there’s anything you want to ask me just get in touch.

kind regards Sandra 

Anal squamous cell cancer

12 Feb 2018 15:02 in response to texasgirl

Hi Texasgirl

Thank you for coming back to me regarding the treatment.  All in all I just want to get on with the treatment...it seems to be forever the wait.  Everyone says the same.....weeks feel like months.. How are you feeling now? You seem to have had a difficult start but its always best to keep a positive head .....I wish you well and do keep in touch.  x

Anal squamous cell cancer

12 Feb 2018 22:04 in response to Mandydk

Hi Mandy,

Yes, the wait to start treatment is grueling.  The wait for the scan results after treatment is also grueling.  

I started to turn a corner about 10 days ago and I'm feeling much better. The nause still comes in waves, but not as often.  I seem to feel better if I stick to a soft diet.  Thank you for asking.

I hope the time flies by for you.  Let us know how you are doing.

Anal squamous cell cancer

12 Feb 2018 22:22 in response to Suzym

Hi Suzy,

My oncologist said that this is one of the tougher cancers due to the location.  It's often overlooked due to the location and is often misdiagnosed as hemorrhoids.  The wait to start treatment is grueling as is the wait after treatment to find out if it was successful.  The treatment is tough, but most people don't notice it for the first 2-2 1/2 weeks.  And you will start to feel some relief a couple of weeks after treatment stops.  

Hang in there.  We are with you in spirit.

SandsJ, I know your results are going to be great!  Let us know when you hear something.

Warmest Regards, Sheri

Anal squamous cell cancer

13 Feb 2018 00:27 in response to SandsJ

Hi Sandra,

Thanks for the reply, I'm really pleased I've found people that have either gone through or are going through the same thing. I really worry about everything, I feel scared of everything, and I don't think my family and friends realise how much it affects you. When I had my CT scan it was clear except for a thickening in my stomach, they don't seem worried about it at the hospital, could just be inflammation as I've suffered with acid reflux for years, and I've got an endoscopy booked for next week. I'm petrified of that, and its just another thing to worry about. What side effects did you get with your radiotherapy, was it bearable? 

Sue.

Anal squamous cell cancer

13 Feb 2018 00:36 in response to texasgirl

Hi Sheri, 

Thank you for your message. I really feel as though I've done nothing but wait for scans, results, appointments for months now. I had my op on the 4th of December so that was only 2 months ago, but it feels so much longer. The trouble is when eventually I do go for my treatment the hospital I have to go to is 50 miles away, that's going to be tough making that journey every day, especially when the after effects start. 

I'm sorry for sounding so negative,

Regards,

Sue.

 

 

Anal squamous cell cancer

13 Feb 2018 02:06 in response to Suzym

You do not sound negative at all.  I found it really challenging to remain positive with an anal cancer diagnosis and while feeling so ill.  I was so scared of the chemo and radiation and had to fight back tears during the treatments.  And because I still have an ulcerated area which is painiful, I was convinced that the treatment was not succuessful.  Thankfully, I was wrong about that.  I think most of us tend to worry at every little pain now.

It's probably not the most ideal situation having to travel 50 miles each way for daily treatment, but they can give you anti-nausea meds which will help should you need them.  Lots of folks breeze through.  It does get painful towards the end of treatment due to the radiation burns.  But there's lotions for that, too.  I was already underweight starting out which made it a difficult fight.  

Is there a non-profit that provides housing for people that are going through treatment?  Maybe you could ask the facilitator of this website.  Or post on this website and ask if anyone has any suggestions. I was fortunate enough to lie down in the backseat of my car while my hubby drove me to appointments.  Will you be commuting via tram?  If so, I suggest that you take some sort of pillow to sit on.  Now that I'm up to driving, I position a small one under my thighs so it keeps my bum from hitting the seat.  

I was scared of everything, too.  But they have had tremendous results with this treatment. They made no changes to the treatment since 1970 so it's tough, but it works.   In the last few months the government approved funding for research on this particular cancer and they are making headway.  

I'm sure the nurses will tell you to drink lots and lots of water to flush out the chemo and to eat small amounts of food throughout the day.  It makes it much easier to tolerate.  

 

Anal squamous cell cancer

13 Feb 2018 10:48 in response to Suzym

Hi Sue

i know exactly how you feel it’s so frightening and all the waiting g doesn’t help - I found that once I actually started the treatment I felt more positive.

The actual radiotherapy and chemo tablets weren’t too bad and I had weekends off - did me it was the tiredness after about two weeks so you just have to accept it and get as much rest as possible - after about three weeks maybe skin did break down quite badly but I got good pain relief and good cr and that helped - don’t wait until it gets unbearable don’t try to be brave take all the meds and help you can get.

i normal fed that you’ve got a fair bit of travelling to do that’ll be hard if you’ve got family and friends that offer to drive you let them - at first I wanted to do it all myself but then my nurse pointed out that your friends and family can feel quite useless so if you get them to drive you they feel that they are helping in some small way.

I live in Glasgow and was treated at the Beatson the staff there were amazing and also pointed me in the direction of the Maggies centre not sure if you havd one near you - they are amazing so supportive and thx one here is a wee sanctuary to relax in.

i hope you get on okay over the next few weeks keep in touch and ask anything at all 

take care 

warmest regards Sandra x

Anal squamous cell cancer

13 Feb 2018 11:04 in response to Suzym

Hi Sue

Like you it does seem such a long wait ......I start Monday for the 5 1/2 weeks treatment. I was diagnosed early January but first symptons were mid-November when I went to the Dr. I am feeling apprehensive but can't wait to get started as the wait does seem forever. I was told the treatment is so complex that it needs lots of planning prior to starting - in this particular area.  I guess the only way of looking at it is - the time being taken by the hospital in planning the treatment...which is taking weeks to do will treat only the area affected and it won't harm any other parts that maybe near by ... I am sure you will be starting soon like me.  I think everyone on this site is encouraging and have explained their treatment well which helps  to understand and manage your concerns/thoughts prior to the treatment. I wish you well and do keep in touch. x Mandy

Anal squamous cell cancer

13 Feb 2018 11:36 in response to Mandydk

Hi Texas girl, Sandra and Mandy, 

Thank you all for your messages, it does help a lot. I've received my later this morning to see the oncology doctor next Monday, so I at least feel as tho things are on the move. I know I'll be OK once I've met the radiotherapy team, one other thing that is worrying me a little bit is how much of your dignity do you loose, are you left half naked while having treatment. They do offer transport here if you live a long way away but it could mean you would spend all day waiting around which will be hard going from about half way into treatment, so I'm going to drive there every day, or my daughter and son in law will. Apparently they do offer a room to stay during the week for the last 2 weeks of treatment if it gets too much. So ey do try and help. I feel better today and a bit more positive. Can I ask you all did you invest in clothed.... Natural fibre pants and the such like?

Mandy I hope you get on OK with the start of your treatment, let me know. 

Thanks again everyone, I look forward to your messages.

Sue x

Anal squamous cell cancer

13 Feb 2018 12:09 in response to Suzym

Hi Sue

Good news regarding next Mondays appointment - good luck!  I will be thinking of you.  Regarding dignity....so far I haven't felt embarressed as they do seem to cover you up well...not sure what to expect when treatment starts but maybe Sandra or Texasgirl can elaborate on that... i'm planning on driving myself the 35 mile to the hospital and back for the first 2 - 2 1/2 weeks and then I have a son, sister and husband to take the wheel.  Its best to think of a back up plan - just in case you don't feel like it.  I am sure all will be fine - its always best to go with a positive outlook - we are here to give each other support.  All the best Mandy xx 

Anal squamous cell cancer

13 Feb 2018 12:35 in response to Mandydk

Hi sue and Mandy 

good luck with your treatment , I m now in my second week glad that I m finally being treated , it is tough and chemo seems to have different effects on people , for me I had waves of sickness although I wasn't actually sick! Make sure you take your anti sickness through chemo as I m sure I would have been a a lot worse had I not taken them. I have a very sore mouth and lips and a bit of a swollen throat but I m glad to be chemo free for a couple of weeks!  Aparantely it's still working in your body with the radiotherapy so the tiredness some days really  kicks in. I seem to have a good day and then a couple of tired days but just take each day at a time. All the waiting to start is a nightmare for everyone it seems but I started feeling much more positive once treatment has started . 

Wishing you both best of luck it always helps having others that you can relate to.

love Gilliebean x

Anal squamous cell cancer

13 Feb 2018 16:55 in response to gilliebean

Hi Gilliebean

That all sounds positive and at least you are underway.  Only another 3 1/2 weeks to go! I will be glad when I have started.....keep me posted with your treatment and I will with mine.

 

Wishing you all the best.  Mandy xx

Anal squamous cell cancer

13 Feb 2018 22:39 in response to gilliebean

Hello Gillibean and Mandy,

Mandy so you have a bit of a track too. I think I'm going to drive myself for as long as I can. Then I'll lean on my family a bit, the trouble is I live in north wales with my youngest daughter and her little family, the rest all still live in Birmingham, so I'm a bit limited on drivers, but I'm going to stop stressing about it and just get on with it.

Gillibean I'm glad your treatment is under way, it won't be long until we've all done it!  Can't wait to get back to being boring and mundane lol.

Do you all work? Your not trying to carry on working while having treatment are you?

I love this site, I'm so glad I found you all.

Sue x

Anal squamous cell cancer

14 Feb 2018 03:39 in response to gilliebean

Hi Gilliebean,

It really helps to rinse your mouth with a salt water solution after you eat.  It healed my mouth very quickly each time an ulcer was trying to pop out.   I got a nasty looking huge ulcer on the roof of my mouth during treatment (it looked like a boil).  The salt water solution was very soothing and offered immediate relief.  It would help your throat, too if you can gargle (I choke when I try).  In case you aren't familiar with it here are the portions.

 

8 ounces warm water

1 teaspoon salt

2 teaspoons baking soda (optional)

 

 

Anal squamous cell cancer

14 Feb 2018 04:26 in response to Suzym

Hey Suzy,

I lost 20 pounds and have not invested in any new clothing because I hope to put the weight back on.  They went after my lymph nodes and vagina (as well as my bum) and my skin broke down towards the end of treatment.  The nurses suggested that I allow everything to "air".  I wore a skirt around the house and no underwear while going through treatment.  And I slept in a large t-shirt and no underwear.  When I was in the hospital I would stack the covers and pillow on one side to shield myself from anyone that might walk in and I left the covers off of that area.  Leggings are really soft and comfortable although not my best look while so skinny.

I was given a sheet to wrap around me during radiation treatments.  All clothing from the waist down must come off, but they covered me in a sheet.  If you wear a skirt or dress you could probably just pull it up.  There are so many doctors and nurses and they all want to/need to take a peek.  Although I hate for anyone to see me naked, the inhibitions went away pretty quickly.  

Also, unscented wet wipes are best to use.  Toilet paper can take the skin off.  And dab instead of wiping.  They should prescribe a lotion that helps the skin to heal, but also coat the area with ointment when not going to treatment.  I hope I'm not offending anyone or this isn't too much information.

I'm so glad you have the option of a room should you need it.  I was so happy to have people taking care of me and cried when I had to tell them bye.  

Anal squamous cell cancer

14 Feb 2018 07:52 in response to texasgirl
Hi texasgirl, thank you for this info. I know all the treatment is to make me cancer free but you've answered my concerns about everyone seeing my bum... not that I have a particularly big one or anything! I already use water wipes for the toilet part, after my surgery I found them much gentler than paper. All the advice does really help and will help others. Sue x

Anal squamous cell cancer

14 Feb 2018 22:03 in response to Suzym

Hi Sue

i was just thinking - here in Scotland there is a website called cancercars.co.uk they arrange to pick up patients and take them to their radiotherapy appointments - it’s a fantastic service that a few people told me about. I don’t know if there’s anything similar in Wales and England.

or maybe at the hospital you’re attending g they’ll have something similar.

good luck Sx

Anal squamous cell cancer

15 Feb 2018 00:37 in response to SandsJ

Hi sandsj, they do provide transport  in a taxi I believe, but I've been told they could pick you up at 8 am, and you might not get back home till teatime, as you have to wait for everyone in your taxi to have treatment, I've decided I'm just going to drive myself as long as I'm OK to, then my daughter and son in law will help if it gets too difficult.

Sue x

Anal squamous cell cancer

18 Feb 2018 01:07 in response to texasgirl

Hi Sheri 

thanks for that I will try it , am finding it hard to drink any warm drinks and then I tried with a straw which obviously by passes your lips and it's great ! Feeling very tired and having a lot of nerve pains in my legs did you get that? So glad to have this weekend off the burning around my groins is very uncomfortable but am slapping on cream whenever I can!  When I blow my nose it's bloody too that's from the chemo they said. Laying down is much more comfortable than sitting now! Hope you re feeling better.  Gilliebean x

Anal squamous cell cancer

18 Feb 2018 01:24 in response to Suzym

Hi Suzy 

I worry about you driving yourself isn't there anyone that could drive you?  People always say is there anything I can do maybe you should ask your friends if they could help out I m sure people are only too willing to help but you have to let them. I m lucky that my husband takes me every day but you must know somebody? Do  you have a start date yet ?  I know Mandy said she is starting on Monday but can't remember if you said you have one , anyway it is better when the treatment starts you feel at last something is being done! I was not so lucky in that mine had spread in the months waiting for treatment but it was 3 months ! I do wish you all the best .

Gilliebean xxx

Anal squamous cell cancer

18 Feb 2018 01:58 in response to gilliebean

Hey Gilliebean,

You just need the water warm enough to dissolve the salt or baking soda.  The water does not have to be warm when you swish it around in your mouth.  I used it at room temperature.

I'm so sorry you are feeling bad.  The burns are really miserable.  You and I both had issues towards the front as well.  How many weeks have you been in treatment?  It eases up a couple of weeks once treatment stops.  I didn't get shooting pains in my legs during treatment, but I had an unpleasant experience a few days ago with pain in my leg all day long.  A varicose vein was protruding all of the way down my leg.  I was worried about a blood clot, but it was fine the next day.  My hipbone really ached until after treatment.  I was so worried that the cancer was in the bone.....but of course it wasn't and it would have shown in the PET scan prior to treatment.  The doc didn't have an answer for me (said she was just a bum doc).  I think the tumor was pressing on a nerve which caused the pain in my hip.

I am still experiencing pain when I sit on my bum 4 months out.  But I have an ulcerated spot that is going to take a long time to heal due to the location.  I try to position a pillow under my legs so that my bum doesn't actually hit the bottom of the chair or sofa.   

I'm feeling so much better, but the nausea is tough to deal with.  Even with the nausea it's much better than the last 8 or 9 months.  I'm going to see another specialist for that.  I would rather not, but the docs think it's necessary.  I'm almost back to my old self (if that's possible).

Anal squamous cell cancer

18 Feb 2018 09:25 in response to gilliebean
Hi Gilliebean, I thought I'd replied to your message but can find it now!!! Aww thanks for your message, I was really touched by your concern xx. We have sorted me getting to and from treatments now. I do live with my daughter and her husband, her husband works so is now always free and my daughter suffers really badly with anxiety, so I was trying to come up with suggestions for travel without being too much of a burden to them. We all had a good chat last night after she got really upset as she feels she's not doing enough for me ( she is there for me which is more than enough). She is going to drive me and the days her hubby is free he will drive, the trouble is we live 50 miles away from the treatment hospital and although she passed her test 2 years ago because of her anxiety she tends not to drive much, it we've decided this will be a good experience for her and hopefully help her and me! She nursed her husband thru bladder cancer last year... He is OK now, he did loose his bladder but the surgeon reconstructed a new one from part of his bowel. And now I've got this, sometimes it just feels so unfair. I do have other children but they live in Birmingham, 150 miles away from us! Although my eldest daughter will come over later in the treatment to give those 2 a break. I'm seeing the oncologist on Monday so hopefully I'll be starting radiotherapy soon. I will be glad when its done and I can get back to being my boring self lol. How are you now, how is your treatment going? Sue xx

Anal squamous cell cancer

18 Feb 2018 09:51 in response to gilliebean

Hi gilliebean

You sound like you are suffering. I hope it eases soon....texasgirl has given good advise so I hope it works for you.  

I don’t know if anyone had a cold  prior to treatment? I had the flu jab on Monday which I was advised to do and now have an awful sore throat and tickly cough..with little bit of runny noise. Do you think treatment will still go ahead? I also had a call from the hospital Friday to say that my treatment time had changed from 9am tomorrow to 3pm.....shame as I am anxious to start but at least it’s still starting tomorrow! Have you heard of anyone with a cold prior to treatment? Did you have a flu job?

good luck with the days ahead...I will be thinking of you! X

mandy

Anal squamous cell cancer

18 Feb 2018 11:51 in response to Suzym

Hi Sue 

hope you get started soon - my hubby doesn’t drive sk st first I was determined just to drive myself but my nurse told me that friends and family can feel really helpless when someone is going through this do letting them drive you lets them feel they are helping. My best friend was like your daughter not very confident and although passed her test years ago only ever drive to the shops and back - so I felt guilty when she said she’d drive me most days after the first couple of weeks - but you’re right it does help with their confidence  - we didn’t have such a long journey as you but she was whizzing up and down the motorway in no time at all.

Ill be thinking of you next week take care and be kind to yourself xx

Anal squamous cell cancer

18 Feb 2018 11:54 in response to Mandydk

Hi Mandy

i didn’t get the flu jab last year and I’m not an expert but maybe your symptoms are just a wee side effect of the jab. 

I think I did have a wee bit of a cold at one point during my treatment but it didn’t stop then it - you’ll just want to get started now - hope you get on ok I’ll be thinking about you take care Sxx

Anal squamous cell cancer

18 Feb 2018 13:46 in response to SandsJ
Hi Sandsj, Yeah my daughter actually said to me in the end that she wants to drive me, she is out doing a dummy run at this minute to see how far it is. It's an easy road it's dual carriageway all the way almost. The trouble with me is I'm so used to being independent, I'm never I'll and am usually the one who does the looking after, I need to learn to accept help now. It's just the first oncology tomorrow and that is at my local hospital just up the road, so thats ok. Not sure how long after that ill have to wait for planning, hopefully not too long. Love Sue x

Anal squamous cell cancer

19 Feb 2018 00:57 in response to Mandydk

Hi Mandy 

i was advised to have the flu jab before my treatment even my husband, we had a sniffle from the jab but it soon went. Try and stay away from people with coughs and colds if you can as your immunity will be very low especially once chemo starts. I m into the third week tomorrow get so incredibly tired but you just have to give in to it and reast is a wonderful thing!  I m usually very active so find it hard and a bit frustrating not being able to rush around! I don't envisage me ever rushing around again at the moment but maybe it's time to take things at a slower pace now!  My husband and I are like the tortoise and the hare! It sounds like your treatment could possibly be a couple of weeks away but once it starts you will feel better that something is happening! Make sure you have a bucket in the car just in case!  You may not need it but just knowing it's there gives you peace of mind. Sometimes although we only have a short journey to hospital , if we get stuck in traffic and coming back from treatment it sometimes makes me feel abit nauseous. Again fingers crossed that you ll start soon . Love Gilliebean x

Anal squamous cell cancer

19 Feb 2018 01:00 in response to gilliebean

Sorry just reread and I see you ve got  your start date I d confused that bit with sue , chemo brain!!!  Good luck x

Anal squamous cell cancer

19 Feb 2018 01:08 in response to Suzym

Hi sue 

so glad that you are not driving and it always helps to have someone to support you, I m sure that your daughter will feel that she is realy able to help by doing this and it may help with her anxiety too. 

It sounds as if you are a few weeks from treatment yet but try not to be despondent as soon as it starts you ll feel relief that it is actually happening!  

I m sure you re not a t all boring I bet you are an absolute rock to your daughter and to value life and the small things you will realise that they are the things that matter . 

Dont make plans other than going you your hospital appointments because it does get very tiring and I find myself even falling asleep in the middle of my favourite programmes sometimes I only see the first 5 minutes and I m gone zzzzzzz .

take each day at a time that's what they told me and that's what I m doing! 

Take care Gilliebean xx 

 

Anal squamous cell cancer

19 Feb 2018 10:00 in response to gilliebean
Hi Gilliebean, You and your husband sound exactly like me and mine! I'm everything at full pace and he is much more 'i'll do it tomorrow' kind a guy. I get frustrated if I see something and can't do it so not sure how I will get on either. I am starting later today so will let you know how I get on ...thanks for the advise regarding the bucket and colds... I will also take your advise and talk plenty of rest s and when I need them. Thanks again for your reply. I'll keep in touch and let you know how going. Hope you are getting on well with yours. Mandyxx

Anal squamous cell cancer

20 Feb 2018 21:07 in response to gilliebean

Hello gilliebean and mandydk, just a quick update on the last couple of days.

Met with the clinical oncologist on Monday ,a lot of info! She told me my cancer was actually in the margin too, which I wasn't told before, and because of that there are almost certainly still cells there, so its 5 weeks of radiotherapy with chemo, originally I was led to believe the chemo would be in tablet form but now I've been told I will have a picc line inserted. 

I went for a endoscopy  today because of a thickening showing in my stomach on the CT scan but nothing at all showed up on that so that was god news. 

Planning will probably be a week on Thursday and treatment will start 2 weeks after. We worked it out my treatment will start about 19th of march.

They do have a hostel attached to the hospital for people that live a long way away, you get a self contained an suite room with all meals included for free. Which is fantastic, hopefully I'll use the room for the last 2 weeks of treatment.

Sue xxx

Anal squamous cell cancer

21 Feb 2018 10:08 in response to Suzym
Hi Sue Pleased things are moving forward. What do you mean about the cancer was actually in the margin too? I am on the tablet form and unsure why some are on this and some on the Hicc line. Does anyone know? I Started my treatment on Monday so at least its underway. So far so good. I am driving the first 2 - 3 weeks and then others are helping out. Its good that you have found accommodation at the hospital which will help enormously nearer the end. Wishing you all the best and keep us posted. Best Wishes Mandy xx

Anal squamous cell cancer

21 Feb 2018 17:14 in response to Mandydk

Hiya Mandy, 

On previous reports they described my cancer as being personal and the way the oncologist was talking being on the margin was slightly worse but after googling it its the same place!

I've been led to believe that I had a small cancer which had been taken away with surgery, but now I'm being told they haven't got it all, although I was told without more treatment it will come back, so it makes sense now why my surgeon was so sure it would come back. I did say I thought I'd have chemo tablets ( so I was told) but he just said no we want to put in a picc line.

Do you have far to go for your treatments? Your nearing the end of your first week now, do you still feel "normal"? You will be nearing the end by the time I start.

Thinking of you Mandy.

Love sue xx

Anal squamous cell cancer

21 Feb 2018 17:16 in response to Suzym

That shouldn't read personal it should read perianal, 

Anal squamous cell cancer

21 Feb 2018 17:20 in response to Suzym
Hi Sue I have been in contact with others with anal cancer and even when a tumour is removed they still do radio or chemo to check everything is gone and nothing will come back...so its not a bad this. My treatment has started - finished day 3 today! So I now have 5 weeks left!! At the moment I feel no different but everyone keeps telling me it will hit me with burns and tireness so I am just waiting... I has advised by my nurse to start soaking in salt baths in preparation for it to start so I am gradually doing this every night which is lovely.....I did also air myself last night to try and keep things as dry as possible..... I am still working. I have dropped from 40hours to 20hours because of the journey and so far don't feel tired. I am sure I will as I Progress so prepared to have a week or so off should I be suffering. I will let you know how I get on ......wishing you well for your next appointment. Kind Regards Mandy xx

Anal squamous cell cancer

21 Feb 2018 17:33 in response to Suzym
Hi Sue I have a 1 hour drive.....traffic permitting - all appointments are different times and you get a sheet showing these dates prior to when you start which is good for planning. I have already met lots of lovely people who sit waiting for their treatment, all ages and range of different cancers. Do you know why you are on the Hicc line? It must be something to do with the position or size of the tumour....I was told tablets from day one. I have a 10 minute intravenous of chemo on the first day and radiotherapy...followed by each day of radiotherapy and the oral chemo tablets....These are to be taken only on the days of radio treatment so nothing to take at the week-ends...I am also taking a steroid tablet for just the 3 days I start, anti sickness tablets if needed plus antibiotics for the duration. I will keep you posted and thinking of you. Mandy xx

Anal squamous cell cancer

21 Feb 2018 17:36 in response to Mandydk
Hiya Mandy, The different things they tell us.. I asked about having baths they said definitely not, just showers and not to soak the skin, or is that maybe later when the burns start. I'm not going to work once treatment starts, but don't think I'd manage the traveling anyway, it will be 50 miles to the hospital and I work 23 miles away from home. Let me know how you get on especially with any little tips. Sue xx

Anal squamous cell cancer

21 Feb 2018 17:45 in response to Suzym
Hi Sue Yes this is prior to blisters or burns - soaking in salt water. Then its dabbing and drying with a hair dryer when sour....oh the wonders of technology! I have been told it could be like sun burn but have spoken to others and not that bad...so I guess we are all different. The other things they have mentioned is sore hands and bottoms of feet and mouth sores... Again not everyone gets them but they like to tell you just in case you get any of these side effects and so you are aware its normal....I will keep you posted. Take care. Mandy xx