Pat’s Story

[Nightingale]

Briefly, last August…it was a Sunday evening when it all started.  I had extreme pain in my right side all of a sudden out of the blue.  I had no idea what it was. My husband came upstairs and said that I had a kidney stone.  I said, “You’re crazy. I’ve been healthy all my life.”  But off to the hospital we go because I just couldn’t take it.  Sure enough, I had a kidney stone.  It was too big to come out by itself so they kept me in the hospital so that they could blast it. When they blasted it that is when they saw some little lesions in my bladder.  They said it was no big deal and they would book me for an OR time and get rid of them and send them to pathology and follow up on that.  I cancelled the September time that they gave me because we were going on a trip out west.  They gave me one in October.  I was there at the hospital all day and got bumped for an emergency. I never got my surgery. I went back to the hospital on November 15th and that was when they discovered two large tumours and did a bladder resection at that time. The pathology report came December 1st.  It was explained to me at that time that it was an aggressive muscle invasive tumour so I wrote down T2 high grade.  The report said that it was aggressive muscle invasive urothelial carcinoma that had invaded the lamina propria, the muscularis propria, positive for lymphatic intervascular invasion.

 

They moved really fast.  They said that I wasn’t a candidate for another resection or BCG treatment.  They automatically recommended bladder removal. That was December 1st. On December 7th, I went for a chest x-ray. On December 14th I had a consult with the surgeon. He gave me all of the options, including doing chemo beforehand and gave me some idea of what to expect.  In the afternoon (December 14th) I got a call from the cancer centre to see the oncologist the next day.  I started chemo on December 21st.

 

Right from the beginning, my urologist was so positive. He said that bladder cancer was one of the best cancers to have because it was the most treatable. Right from the beginning I had this feeling inside of me that everything would be okay.  I didn’t worry about dying. I didn’t worry about that the cancer was going to kill me. In my mind and in my body, it was going to be okay.  I try not to worry about things until I actually get there.  I just have this feeling from day one when they told me that even though it was bladder cancer and I had to have my bladder removed and that was a biggie. I said “Oh well, and I’ll just go with it.” They have options, right?  How many cancers are there where you don’t have options? My husband and son came to the surgery consultation with me.

 

I’m a bath person.  I love my baths. My next biggest thing after the needles and the chemo was to decide which alternative to choose – the neobladder or the conduit. It was going to be hard to choose.

 

Then my urologist explained that I was a good candidate for the neobladder. I was quite happy thinking about that. I thought my mind was made up but his nurse gave me some names of people to call that had the neobladder or conduit. They all had positive things to say. There are pros and cons to both of them.  I’m pretty strong but when it comes to some kinds of bodily functions I’m kind of weak.  I went on YouTube to watch how to change a pouch.  I just thought I don’t know if I can do that.  Now, the con for the neobladder is that you have to get up two, three times a night.  I get up in the night anyways so that wasn’t a big concern. I was still leaning towards the neobladder and I called this one person where it didn’t work for her.  She was 5 years post neo and a nurse and has to self-catheterize six times a day. I didn’t know if I could do that. I was going back to the idea of the ileal conduit because I didn’t know if I could do that self-catheterization.

 

Later when I was in church, and sitting quietly with a good friend of mine and we had a chat.  I felt a lot of peace and calmness.  I came home and I went on YouTube and looked up how to self-catheterize.  I thought that I could probably do that because the tube is so tiny. Then I sat on the toilet and opened my legs to try to find out where I would put the tube in but I couldn’t see past my tummy and I’m not a big lady.

 

I’m not tiny but I’m medium.  I wear a size 8-10. I just couldn’t see. I said to Robin, “How can I do this?” She said that they use a mirror. I said that I’ll drop it in the toilet.

She said that if it became necessary she would show me how to use a mirror.  I think it is doable.  Reading the thing on YouTube it seems doable.  It doesn’t go far in; not even an inch, as opposed to dealing with a hole in my body that doesn’t appear healed.  I’ll take my chances with that. Once I made my decision I had no doubts whatsoever.  I was very confident with it.

 

The hardest thing for me about this was the chemo.  It was the worst. I will say to this day, if I had to do it again, I wouldn’t do it. I had many, many side effects.  I had swelling and blood clots.  I had to start to give myself injections. I’ve a great fear of needles. I said, “You’ve got to be kidding?  I can’t do this.” I didn’t like it but I did it.

 

The chemo was so bad for me. I had four cycles and I didn’t take the last half of the fourth cycle but they said that was okay. I said to my surgeon that this chemo is so hard for me and I think that the surgery will be a piece of cake in comparison.  He didn’t like that.  He thought I was minimizing the surgery but that is not what I was doing.  For me, once I had the surgery every day after would be an improvement.  It would be getting better.  That was how my mind worked. With the chemo every day was worse and worse.  Yes, it is an eight hour surgery, but it is going to be a piece of cake in comparison to the chemo because I know that there will be positive progress.

 

It is going to improve unless the surgery didn’t work, and then you will be in a bit of trouble.  You will qualify for this or that. When you make these choices you have a pretty good idea.  You go into the surgery with the plan but you have a Plan B. If you come out with Plan A, that is a bonus. I’m older.

 

I was 65 when I had the surgery and turned 66, 27 days later.  When he did the radical cystectomy he did a total hysterectomy and removed everything. I was lucky that I was through menopause.  I took a herbal remedy. I had some sweats at night.

 

The surgeon named all the things that he may have to remove including part of my vagina if the cancer had spread there but it hadn’t. So that was all good.  That was on April 3rd, when I had my surgery.  I went home 7 days later and saw him on April 26th for a follow up and got my pathology report. It was awesome. I was totally cancer free.  I had a follow up CT scan and everything was normal.  My urine cytology was normal. Gladys (my neobladder) and I have learned to get along very well. There is no divorce in this relationship. Men make their bodies but I think women know their bodies and want to make it their friend.  I just thought that “Gladys” was very appropriate for me.

 

When I first came home, I was home for three days and ended up back in Emergency because I had a bladder infection. They gave me some antibiotics and that took care of it. I went back to Emergency again three days later.  I felt that my catheter was falling out. I didn’t want just anybody playing with my catheter and asked for the urology specialist.

 

I couldn’t use the leg bag. If I used the leg bag it didn’t flow as well as with the overnight bag.  I tried it three times and it just didn’t work for me.  I tried to think, how could I go out with the floor bag?  You are supposed to walk and how could I walk?  I just had some long dresses that had a slit in the front and I pulled the tube up and put a sweater over it.

 

That is one of the perks with the ileal conduit.  You don’t go home with a catheter. You have to learn how to adapt with your new device but you don’t go home with a catheter which is a big plus.

 

When I went to the doctor and had the catheter taken out I asked where I should go to buy catheters in case that I need to self-cath. He said that I wasn’t going to need that and not to worry about it. I said okay.  We are going on a Mediterranean  cruise. This is our reward for getting through this last year. Joanne asked me if I’d picked up my catheters for the trip and I said no. In my mind I can’t see my body not working. It’s just a feeling that I have.  When you are on a ship they have a doctor. I just don’t see that as a problem.  Maybe I’m being naïve.

 

I’m getting to know my body.  I have to drink two litres of water a day.  If I drink my bottle really fast, I need to stay close to a washroom for half an hour or 40 minutes. I’m pretty active.  In the morning I will drink my 20 ounces of water after my coffee pretty fast.  If I’m playing bridge, I will bring my second bottle of water and sip at it very slowly. If I know I’m going to be walking, I won’t drink any more water until after I’m back.

 

I’m back at the gym doing all the things that I used to do including sit-ups.  I’m 66.  I went zip lining with my 13 year old grandson. You know, I didn’t have the nerve before but this is a second chance for me and I take advantage of the spur of the moment.  Going through something like this certainly changes your perspective a bit as to what is important in the grand scheme of things.  One of my other friends lost her husband to cancer and I was telling her that I had another friend whose husband who is in palliative care right now because of cancer, and I feel so guilty.  She hit the nail on the head and said that that is survivor’s guilt. I thought that is exactly what it is.  Why am I okay and you are not? This is out of our control. There are some cancers that there is no control and nothing that you can do about it. I happen to be one of the lucky ones that they could do something about it.  I want to make sure this time around I give back more.  If I can help with the bladder group in any way with any new people coming.

 

One thing I want to mention that is important for me is support. I remember that I got this inner strength to tell my son.  We went for breakfast and I told him about the surgery and about the options.  I said that it will be good in the long run.  It was like God was inside of me and saying that it would be okay.  That kept him from panicking too much. So he and my daughter-in-law were so supportive and so was my husband. He was unbelievable. Not only through the chemo and the blood tests and hospital visits but when we came home and had to flush the catheters every four hours.  We had to sterilize all the things that we had to use to do it.  I had to do this for 23 days until they took the catheters out.  That is one of the benefits of having the ileal conduit.  You don’t have to do all that but having said that, I feel I made the right choice for me and I’m happy with it. I’m down to one napkin a day. I haven’t graduated at night to a napkin yet.  I haven’t had any accidents because I can make it to the bathroom on time.  I think when I finish this box of Depends I will switch to a napkin. If I’m going to the gym I wear a heavier napkin.  I’m getting to know my body quite well.

 

Going to the bladder support is new and if I can be of use with some of the qualifications that I have, I would like to pay it forward. People were so good to us.  With the chemo towards the end, I was gasping for breath. People provided food.  I have now prepared meals for others that have been sick. They have been so thrilled. It is such a little thought thing to let people know that you’re thinking of them.

 

For words of wisdom to those that are newly diagnosed; Don’t lose hope. Don’t be shy about seeking out others that have been through it. It is can be humour and relief.  You can share with people about what you are going through.  Where else can you talk about how your pee is doing or what kind of napkin you wear? I happen to meet a guy going to the same information session and at the bladder support. We had a conversation.  Before my surgery I was talking to another lady and she invited me for coffee saying that I could pick her brain for information. I’m so grateful for my outcome.  I don’t know where my sense of peace came from in the beginning.  It had to have been spiritual.  There is always fear of the unknown. It was the peace that got me through the fear.

 

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