Nephrostomeys

Hello Kellypops

Although I haven't had the same experience as you I just wanted to ask you if you know about the charity Jo's Cervical Cancer Trust as you may find other ladies on their forum with similar experiences. They also have a helpline which is very supportive. The Eve Appeal is a women's health charity for all gynaecological cancers and also a place of support. I hope you find this useful and that you are able to connect with others in your situation.

Hugs

A

Hi Kelly,  Are you kidding me? As a Warrior who battled twice on the field, who held fast, stood strong and refused to yield. You showed true heart and had the guts to take part in the fight for the life we hold so dear. Take pride you didnt hide and could rely on the strength inside because you are still here.

In the first battle you launched a surgical strike that caught the enemy by surprise and you cut and sliced them all down to size. According to all reports your efforts were a huge success as all enemies had been slayed and laid to rest.

Your valiant victory was not without cost and the price of the enemy's loss left you ran through, but being drawn and quartered didnt slow you down or stop the fight in you. While you were resting to heal, you heard the news that some of the enemy survived and they were located with sound. That's when you stood up and marched in for your second round.

They fortified their forces and you did too. As you approached the field, a laser ambush hit you 14 times 2. It was so hard that it spun you around but you only kneeled, you couldn't be sent to the ground. You continued the fight well into the night until there wasn't one left in sight.

Another impressive victory that everyone should see, I still cant believe you didn't fall to the ground and only took one knee. Warriors and fighters dont think much about their acts, they're too concerned with attacks up ahead and how they'll leave the enemy dead.

Spectators were left in disbelief watching the awesome display and were so shocked by your strength, they were speechless with nothing say....but all are still thinking hooray!

Allow me to be perfectly clear, please listen to what I say, you are a Hero my dear and now a part of everyone's heart who knows the part you played.

The cuts and scars from battle that didnt leave you dead can seem so severe and rattle about in your head, it can put you in a mood and ruin some days. Sometimes it's easy to forget how we got where we are and things can be unsettled. Until we think of those fights during some long miserable nights and realize our wounds and our scars are Badges of Honor, they are Medals.

So wear them proud, because you're better than the crowd, have been through more than they've ever seen. Pity and tolerate them if they are rude, crude or mean.

You are a Warrior and Hero Kelly and about the talk of those you meet, they who claim to have been around the block, remember that they've never seen, much less ever been on, one of your streets.

I'm routing for you and I know it sucks to be alone. Atleast you have your babies and they have their mom and you couldn't really get along with anyone who didnt appreciate your Medals of Honor and the fact that you're still on your feet. It still is nice to have someone, even if they cause you some grief, but I believe we get what we need and for you it's somebody true who will bring love, appreciation and a little relief.

Hi,

I'm in a similar situation. I didn't have a surgical option, so I did rad/chemo, another round of chemo in 2016. Then, SBRT radiation in 2017 when it initially came back, now I'm receiving an immunotherapy (durvalimab/vaccine combo) clinical trial. Over the last year I've had one nephrostomy, then trialed using ureteral double j stents that failed, and now have bilateral nephrostomies. I'm actually 36 as well and have three little girls. I find the nephrostomies painful, it's hard to shower, and I feel like I just can't do as much with the girls. After so much has been taken away already, this is just hard to deal with.

I will say that they said there were options to repair the ureters, but I wasn't a candidate since I am on current treatment. Since it seems like you're not, could this be an option for you right now? May be worth asking around!

Hi Kellypops, I was just wondering how you feel now as your post was 3 months ago. Long story short I was diagnosed with cervical cancer in March 2019 whilst in labour. After a difficult pregnancy not knowing what was wrong with me, 9 months of intense treatment, being told the treatment was successful and then a couple of months later that it was wasn't and after a host of treatment related issues I had a nephrostomy a week ago. I have managed to stay postive for my little boy from diagnoses to now but this procedure has just been one too many and am really not coping with it. Am in agony all the time and feel like my life has been taken away from me. All my family and friends just keep telling me how strong I am but their not listening when am telling them I am struggling to even get out of bed in the morning. Anyway I hope you are doing well and you are feeling more positive about things. Any advice you have for me would me gratefully recieved.

H x x x 

Hi Kellypops, I was living a normal life until last year when i was feeling pretty bad and went to my local surgery and they sent me for tests.  Turns out i had kidney failure caused by an undiagnosed tumour that i had had for a number of years.  I ended up having 2 nephrostomys and one year later am still finding it hard to accept as i cannot do things that i earlier found normal.

It does get easier, the more used to them you become the more confidence you have.  It is hard to accept that you cannot bend and do active things like before (i was a yoga instructor, complete career change) but i look on the bright side that without them i may not be around.  My doctor has told me that it is possible that the kidneys may recover and the nephostomys may be removed, there is always hope.