My Story

For the last year or so, almost every month (or sometimes more frequently it seemed), I have suffered from bladder infection after bladder infection. I’m not sure whether it is because I am a female but monthly plights just seemed to be part and parcel of being a woman.

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I have had run ins with endometriosis since my early 20’s (perhaps earlier and despite my doctor treating my UTI’s (urinary tract infections) with varying antibiotics I guess deep down I felt that something else might have been causing my discomfort..

Perhaps it was the endometriosis coming back despite the fact I had had our 3 children? My laparoscopy back before the conception of our eldest did reveal severe endometriosis with extensive lesions/adhesions all over my bladder and kidneys so I kind of felt safe in the ‘knowledge’ that it was more than likely that my bladder was just a little aggravated  and that eventually another operation might be in order.

It wasn’t until we were holidaying at the beginning of the year that I noticed blood in my urine. Not a small, trace amount but bright red, cranberry juice stuff! Naturally I freaked out.Our internet connectivity was limited up at the north north of the South Island, New Zealand but I did google ‘blood in urine+bladder infection’ and found:

Common causes of blood in urine include:

I think we all have in the back of our heads the possibility of cancer but it always seem like such a pessimistic, ominous almost hypercondriacal thing to suggest to a doctor (especially during a casually made appointment at your bach’s local medical clinic! )

After being seen by a wonderful female nurse then young female doctor they explained to me that gross haematuria (visible blood in urine) is often just a common side effect of a bladder infection and so they gave me yet another prescription for yet another course of antibiotics. (NB to self- ring this clinic!) The young doctor did make the suggestion that I might need to take (like so many females) a single dose of antibiotic at the beginning of each month. I left feeling more confident that what I was experiencing was in fact a common problem for so many females. To think I had even contemplated the ‘c’ word- how dramatic!

Once back home I rang my lovely gynecologist who had also delivered 2 of our children. Luck would have it that she is also a urologist!

She arranged for me a bladder scan which came back clear and put me a on a long, 3 month course of antibiotics, designed to clear up any residual lingering infection.

All was good.

Until the bleeding started again.

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I made another appointment to see my urologist who suggested we investigate further. A CT scan and pelvic scan were arranged for the following Thursday.

Come Tuesday morning having spent the night vomiting (with a coincidental 12 hour gastro bug) I woke and spotted a tiny blood clot in my urine. I rang my urologist and she arranged for me to be seen in the hospital emergency department straight away.

After meeting with the urological registrar and giving him a brief run down of my histology (and a urine sample) I was admitted up to the urology ward for the night. My vomiting had well and truely stopped and I was feeling really good. No pain and a bit frustrated at having to stay a night.

I was sent to the radiology department for a CT scan where they injected a contrast dye into my veins which during the scan would highlight my renal function (kidneys, ureters and bladder)- all new lingo back then!

By 5pm, the nurses informed me that I was all booked in for a cystoscopy the next day then could go home. So, with no news in my book meaning good news, I had a ‘good’ nights sleep (despite the plastic under sheet and pillow which public hospitals are popular for!)

No news NOT good news.

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The horror of a cystoscopy! There I am, in a brightly lit room on another hard hospital bed with 2 nurses and a young urologist and one very mean and uncomfortable looking cystoscope (google it) and YES, it does hurt.

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Before the procedure began I discussed with the urologist what his feelings were as to what was going on and he felt confident that he would find nothing ominous and that I shouldn’t be concerned (easy to say when you’re on the other end of the cystoscope!)

OMG!

Trying to relax while the cystoscope was being navigated was awkward to say the very least and may I point out that there is no anaesthesia. Next stage was to have my bladder filled with saline so that it became completely full. A crazy sensation. I felt like peeing the whole time. The urologist had a good look around inside my bladder and even commented that it all looked good. And then my wee world was shattered.

With the 3 words, “I’m so sorry”, our lives were changed. Believing that this procedure was just going to be a routine followed by me being discharged from hospital directly afterwards- at there alone on the bed and cried and cried. The nurses and urologist left me- tears welling up in their eyes too. I honestly believe that they were all shocked- I’m 34 and just not a real candidate for anything as sinister as bladder cancer.

I rang my husband who raced straight in to be with me. We obviously discussed all possibilities but felt that we would remain positive (it was bound to be benign or even some random growth for sure?)

Next step, a biopsy needed to be taken using a rigid cystoscopy which would require me to be put to sleep under a general anaesthetic. They sent me home for 2 nights and booked my operation for the Friday morning.

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I won’t go into the details of the operation but will say that I was really nervous and kept looking at the specialists eyes for reassurance that this wasn’t a big deal and that they felt the results were going to be that it was benign. no such luck so I was put to sleep in tears and woke up in recovery in tears. When I came round my husband was there and the leading urologist told us that the tumour, she felt, looked like cancer.  (please let it be  benign!)

Pathology results could take up to 10 days but they said they’d fast track it. Even that put the heeby geepies up me!

Once again we went home determined to remain positive, sending benign benign benign out into to  universe….

Six days later and the results were in.

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Off to the outpatients department we went, joking and feeling good…

 

A new urologist walked in, shook our hands, sat down and said-

“You have high grade massive invasive bladder cancer,” he went on..” your entire bladder needs to be removed along with a radical hysterectomy where we will remove your uterus, cervix, part of you vagina and your lymph nodes.”

My husband asked him to stop so that we could take a breathe-he, like me had stopped breathing for a minute.

“The tumour is aggressive so an aggressive approach is necessary. Chemotherapy for 3 months prior to the operation to try to stabilise the cancer and to attack any microscopic cells that may have mestastasised” (they found 2 small ‘nodules’ on my lungs- which are hopefully normal nodules-we’ll find out after my operation.)

So, my life changed.. Our life changed. Our universe as we knew it was flipped on it’s head, never to be the same again. We made phone calls which changed the lives of our family and friends.

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26 Comments

  1. Ur amazing strength and honesty is humbling we are with u in ur story. Giving u strength and love along the way u are a fighter . Be strong and carrie on .xx

  2. True Courage to write this story Carrie and something to look back on when you kit its butt and think “Wow I did this”

  3. Yes you are amazing Carrie and thank you for sharing the history leading up to today. This will be such a special recollection for you to look back on because if anyone is going to beat the odds dear CC ‘Courageous Carrie, …… ‘it’s you!’

  4. Carrie, I have just read your story and I’m sincerely sorry that you are going through this, I to have endometriosis and had all the above infections growing up. I hope everything goes well for you and you beat this ten fold.

  5. Carrie. That is the scariest thing I have ever heard. You are amazing to share it with us. Be strong, you have an army of friends and family behind you and with you every step of the way. xx

  6. Carrie I have not stopped thinking about you and your beautiful family since I read your story. You truly are an inspirational woman. I feel absolutely in awe of how you are fighting and beating this. It does not have a chance! Xxx

  7. You are in my thoughts every day dear Carrie. Keep that fighting spirit going hon, we are all fighting this with you. Sending all my love chick. xxxxxxxx

  8. I love our honest you are honey and how tough you are! Man there are some BIG words in your story… I bet ‘C’ is thinking about packing it’s sad arse bags and day now and shipping off, not point hanging around I bet it’s thinking.

    Big kisses
    Jo M

  9. Hi Carrie. Jacki here from Rangi Preschool. I’m so sorry you are having to go through all this. You are such a lovely family. We are all thinking of you.

  10. Carrie I think everyone can learn a lot from you. You are so inspirational, your positive outlook will get you through this. Wishing you all the best. xxx

  11. Carrie, you are really a very brave woman. I am so proud of you! So happy to have you in my “French memories”! Lots of love from Chalo and me for you and Sam…. Our lovely neighbords in Romagnat

  12. Carrie – I don’t know you! But yes I know your beautiful sister and her Facebook lead me to your blog! I just read your story and it brought tears to my world! It’s hard to know what to say – but my thoughts are with you to beat this cancer! Take care – big hugs xx

  13. You’re an incredibly brave and strong woman for sharing your journey with us. My heart aches for you but is also warmed by your positive energy and outlook. Kia kaha gorgeous girl, our thoughts and prayers are coming your way xx

  14. Hi Carrie, you may not remember me but our girls were great friends at Rangi Ruru Preschool. My daughter was Ava. I was lost for words when I read this. You are an incredibly strong woman. You have such a beautiful family. I want you to know that our thoughts are with you. Xxx

  15. Beautiful Carrie…..you continue to give us all so much inspiration & strength with the enormity of your bravery……everything that you have had to endure already at chemo island and with what is coming up is incredibly huge, and so sad to read; yet you keep on keeping on being super strong to kick that evil Mr C in the butt!!!!! I think of you everyday, and send you loads of special thoughts to you, Sam & the children. Keep smiling gorgeous……..Big loves & hugs Foxy & Craig xxxxxx

  16. Carrie, ive just seen your storyhere, you are so brave for sharing this. I met you at Waimairi school (Nico’s mum) I think you are beautiful and amazing. My heart and thoughts go out to you and your family. xxx

  17. Hi Carrie, What an incredible blog! I am the founder of a charitable trust set up to support young New Zealanders (20-45) who have been diagnosed with cancer and just thought I’d let you know we exist and would love to help you out in any way we can 🙂 You can visit our facebook page http://www.facebook.com/cancerland and our webpage http://www.wholelottalife.org. I live in Nelson but make my way to Christchurch regularly. Kia Kaha, love your attitude girl!

  18. Dear Carrie,

    After reading your story, I can have to say you are powerful individual, and you have my respect. I’m no cancer survivor; the closest I’ve come to cancer is through a computer screen. However, that doesn’t mean I don’t know anything about it.
    Recently, I did a presentation on bladder cancer for my Thanatology class. I learned the facts, along with how malicious this form of cancer really is. For a type of cancer that predominantly affects older men, your blog really changed my perspective of what I learned about this disease. We all read and hear things about cancer, and while we accept the facts that this disease is extremely real, and give our daily condolences to those who suffer, rarely do we feel these facts. Your blog helped me put these facts into perspective, and made me realize how unpredictable this disease really is.
    I really want to thank you for this change in perspective, and while this response might just be another “comment on a screen” to you, the impact you made on me is very real. The fact that you are so young, and have children; children who mean the universe to you, just rips me apart. Anyway, I just want to say thank you, and I wish you the best of times and strength in your journey.

    Sincerely,
    Someone who cares

  19. Hi I just wanted to say sorry for what you’ve been through. Although I’ve not had cancer I lost my bladder when I was 28 (43 now) to I.C. I didn’t get a neo-bladder I got a urostomy. I hope you are on the road to recover now.

  20. I am 36 years old and was diagnosed with bladder sarcoma in March. I had my bladder and uterus removed and a neo bladder put in. If you have time, I would really like to talk to you, as our situations seem very similar. Please email me if you get a chance.

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