Hi Cathy,

I'm butting in here (in more ways than one I suppose).  You shouldn't have to wait to finish treatment for the docs to give you something for your skin.  They should prescribe an ointment that has some lidocaine in it.  If the doc or the nurse isn't examining you prior to treatment they don't know how badly your skin is burned.  You might need to speak up.  A group of four lady technicians positioned me on the table but they did not have any say about my burns.  I saw a nurse first and then the doc, but not each day.  

Even Vaseline would help.  If you coat your vagina area it will keep the pee from hitting the skin and burning.  You must not have anything on your skin when you are receiving radiation.  Morphine gel that Sue was prescribed sounds like heaven.  Nothing really helps  the pain when you have to poop (maybe the morphine gel) and it takes a couple of weeks for the skin to heal enough to be tolerable.  Four more sessions is great!  Almost done.

Big hug, Sheri xo

A traumatic experience would make one afraid of it happening again.  I made the doctor appointment and wasn't expecting him to take it out in his office since they put me to sleep to put it in (different surgeons though).  Honestly, it was not a big deal at all.  At one point some of the deadening agent started to wear off so he just injected more.  They like to keep them in at least one year or a year and a half.  But I'm very skinny and it was protruding from my chest and hurting a bit.  It felt great to get it out.

It sounds like you have a wonderful life.  I know all about self employment.  My hubby was self employed most of our lives together until the last 10 years when he finally started working for the city.  

I hope you have an easy time these next 4 days. 

Hugs, Sheri

Hi Sheri

tha is for your kind words. I have been given creams for the burns but was really struggling yesterday so was really just asking what people had that worked best. 

I am feeling a bit better today but still really struggling with the pain. I will see a member of the medical team today for my review so will ask for both stronger pain meds and burn cream. 

Four sessions left..  onwards and upwards!

Cathy. Xx

Hi Cathy 

well done you are nearly there! I had my picc line taken out 6 weeks after treatment which was very disappointing but they kept it in as I had had an infection so they were not keen to take it out for some weeks, not that that will happen to you but I m just saying! When it did come out no problem at all and it doesn't hurt. They had trouble putting mine in and had to do it twice so I guess that's quite common. Try not to organise anything for at least the first 2 weeks after treatment you will be physically and probably mentally exhausted as you have been on the go constantly for 6 weeks plus all the emotions etc so be kind to yourself! I could not walk by the end of treatment and I had lady bits resembling a purple cauliflower and was in a wheelchair for the last few weeks as it was unbearable to walk. After treatment I had terrible reflux but found water with lemons in , cucumber every day and protein shakes helped tremendously ,that went on for some months but I m good now a year later. For me I have to find what my new normal is as I will never be able to do the amount of things that I used to everything is at a slower pace now and listen to your body if you re tired go and rest . The mitomycine can give you a nasty spotty rash even some months after treatment , I spoke to a guy who showed me his legs after treatment so I was warned ,I thought he was just unlucky but my back broke out 8 months after treatment and is only just calming down now 4 months later. Never suffered from anything like that so was quite shocked. That's not to say it would happen to you but again just in case it does don't go into panic.

we are all different a and is really wish you a great road to recovery the hardest thing for me to learn is to delegate or accept help from people but it's a case of having to so that's what I do now. We all recover at our own pace but it is nice to know that others have been through and can share some of their experiences as well as giving you support on those down days! 

I also found that after treatment I felt quite alone with my thoughts, I have the most fantastic supportive husband but all the time you are busy with the hospital and getting support is great but when you finish treatment you can feel that nobody cares anymore and everyone thinks you ve done treatment so you are better now! I found it one of the worst times to come to terms with everything that had happened in those months previous . 

anyway remember we are all here if you need us and the best of luck for your good recovery . Big hugs 

Gilliebean x

Thanks Gillibean

your description of your ladybits hits the spot!  I am still managing to walk the short((ish) distance from the car to the treatment rooms. But only just. I am not sure what I resemble but a poorly penguin comes close!

i was at the point of no return with the pain yesterday and cried all over the nurse when she asked how I am...  I now have oramorph which is helping and they are going to ask for a doctor to look at my burns to see if there is anything more they can do. The radiotherapy nurse gave me some dressings to use overnight and they did help if only by stopping my inner thighs from touching anything....  the whole area is weeping so much it actually runs down my legs!  

The mitomycin did make my face break out in spots. ( I generally am blessed with good skin and couldn’t tell you the last time I had a spot prior to this!  But it was short lived. I am still struggling with a really bad throat and mouth ulcers but again, due to the tears yesterday have been given some extra strong mouth wash to try to combat that... I shall now be aware that the side effects may come back to haunt me in weeks or months to come!

ah well, I am now counting the hours rather than the days and fully intend to do absolutely nothing all over Easter weekend. I have warned my family so hopefully they won’t be disappointed!

i feel like I am just posting a long list of whinges and woes so apologies for that but I am really finding it hard to be positive at the moment. That said, it really does help to hear from others who have gone through the same, to know that I am not alone and that, eventually things will get better 

happy Easter to you and yours. Continue to enjoy life!

Cathy xx

Morning Cathy,

What Gillibean says is absolutely right, I feel for you so much, I remember those last few days so well, I too had trouble walking into the hospital , I remember my daughter saying she'd fetch me a wheelchair and I went mad, why I don't know it would have been a godsend. And the nurses used to ask me every day how I was and was I coping with my skin, so always tell them if you need help. I too had 2 lots of mouthwash which helped a lot, as my mouth was really bad, my friend ( who I met at the hospital) didn't have a reaction like that at all, I remember she had oramorph too.

It's a horrible time to go thru but your nearly there, try and have a lovely Easter break, let the family spoil you, I'll be thinking of you.

Sue xxx

Hi Cathy 

just wondering how you are doing is there some light at the end of that tunnel now? 

I m hoping that you will be starting to turn the corner , there are many emotions after finishing treatment and also the feeling of being dumped as everything comes to a halt and although the relief of finishing treatment is great it's very difficult to get your head around what you have actually been through. 

Then there is the waiting to see how successful treatment has been we have all been at that stage so don't forget we are all still here to suport you. I had my worst times after treatment when everyone just assumes you are ok now! 

I am here waiting for results from my latest MRI and no matter how positive you are it's still a mental torment . Don't forget you will have to find the "New You" as not many people are the same after treatment so be easy on yourself especially in the early days I was very frustrated how tired I got and still do but have come to accept the new me now and things are getting a lot better at last. 

Anyway here if you need any support and take care xxx

Hi Cathy

dont worry about feeling tired all the time that's quite normal , rest is a great healer and your body needs it! Yes those toilet visits are horrendous but it does get better. 

It will be a while before you find the new you! Believe me I haven't found the new me yet although I m working on it ,it takes acceptance on not expecting all those things that you did so easily before treatment to what you can do now. Time will tell but listen to your body and take as much rest as you need.AND salt baths I swear by them great for healing those burnt bits! You ll know when to stop.

depending on the extent of your cancer will determine how the hospital monitor you and each hospital is different however I had MRI after 3 months followed by consultant, ct for the bones after another 3 months followed by consultant and then another MRI after another 3 months followed by consultant which is coming up! Are you in uk? 

Take care and slowly slowly! 

Love 

Gilliebean x

Hi Gilliebean

i have just had my first salt bath and am now wondering why on earth I waited so long!!! (Usually a shower girl). I could quite easily have stayed there all day....  

sorry, just felt the need to share that with you. 

I must be feeling better as I am now starting to feel frustrated that the sore bits are still sore rather than just feeling sorry for myself. I am looking forward to the time that I feel able to drive so that I can get out and about a bit. Not least to have my hair cut!  Again, must be feeling better if I am staring to consider such vanities :)

yes, I am UK based, on a farm in beautiful North Yorkshire which does mean that I can either lie and enjoy the wonderful views from the window or sit in the garden and enjoy the fragrant (!) countryside aromas!

so....  onwards and upwards. Hope things continue to improve for you, and all of us on here

take care, love

Cathy xx