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

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

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

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

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

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

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

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

Thanks Sue

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

Thank you. It all helps. 

Cathy x