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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