Sue's Story
Hello!
My Name is Sue Cavanagh
and in 2009 I had a Urostomy because of bladder cancer. I’m 55 years old I am married with no kids but have a dog a nutty little Staffy called Bugsy and a cat called Lily, I have widespread Osteoarthritis which put a stop to me working as it affects most of my joints but mainly feet hands and hips/ back. Hobbies I like to crochet and when the joints allow gardening
What led to my surgery?
For that I will have to go back to 2006 I started to get attacks of cystitis, I did the usual, drank plenty of water and cranberry juice and at first it worked, the trouble was it came back about a month or so later. I repeated what I’d done before and again it went away. This went on for quite some time as I am not one to run off to the Dr for every little thing. Eventually though, I gave in and came home with the antibiotics I had expected. Then the cycle commenced, where the antibiotics would clear it, there would be a break and it would be back again.
Eventually my GP said I think you may have a polyp … so I was sent to have an ultrasound, by this time I was constantly needing the loo and had permanent lower tummy pain and we are now in 2008. So I arrive for my ultrasound only to be told there wasn’t enough urine in the bladder and that to get a better view I would need to drink a pint of water and wait an hour –not possible 5 mins would be my max- so I said no I’m sorry what you have is all you are going to get!
The technician didn’t like it and got a bit snotty but she worked with it. They found “red sore” patches apparently. So the next step was a CT scan, again they found “raised, sore” patches (the word cancer had not even been mentioned yet).
The next step was a Cystoscopy where a flexible camera is inserted into the urethra –whilst you are awake and they have a look about. Again they found these patches and I was told I would need a TURBT (Transurethral resection of bladder tumor) under general anesthetic, to remove what was there and see what it was (still no mention of that “ C” word ).
Anyway, all was done and I went back to see the consultant who was talking about changes and how they got all the “suspect cells” (still no actual mention of that word) and that in a few weeks I would need another cystoscopy to check all was clear – it wasn’t!
So another TURBT and this time a Mitomycin wash, now that word finally rears its ugly and terrifying head. Talking with the consultant he merrily chatted on about it being the best Cancer to treat and how they have good results with BCG, all of this is going on over my head. I heard one-word CANCER and it terrified me.
Then he said do you smoke? no, do you drink? no, did you ever work with Chemicals? no. Then he homed in on my husband, do you smoke? – yes he did but we had only been together about 4 yrs at this point so come on, it isn’t his fault! and he’s since stopped smoking because of my diagnosis! Then I got, “it’s unusual in a woman of your age”, Sorry but I’m here now and you’ve just diagnosed it so not being funny but I don’t give a fig about statistics.
Fast forward a bit and I am to have a series of 6 BCG installations into the bladder –not painful, but not the most pleasant experience in the world. Oh yes, and it didn’t work as was shown at the next cystoscopy.
So I was faced with two choices to try again with the BCG or to go for bladder removal and it was decided that BCG was pointless as it had had no effect. It’s at this point I am sent to see Bill Turner In Addenbrookes hospital,(we are now up to June of 2009) – lovely man – he did a cystoscopy and by this time they have found cancerous cells in the neck of the urethra so he gave me two choices, well ultimately 3. I could go for a Urostomy, an Indiana internal catheterisable pouch or I could do nothing. Well, obviously the latter was not on the list. My initial reaction with no info whatsoever was, I don’t want a bag, “they show and they smell,” ignorant right? Well, I’d never even thought about bladder cancer and the thought of a bag filled me with horror. However, I still needed to get my head into gear and sort this out. So I started to read, I was given a couple of leaflets but that wasn’t enough info to make such a massive life-changing decision with. So I went to the Macmillan site and read up on there about both procedures and the more I read about the internal pouch, the less I liked the high chance of complications, the messing about with self-catheterisation, the training of the pouch to stretch it, oh yes and the very real possibility that I would need a Urostomy anyway. I wanted this to be a hassle and hitch-free as possible so despite my initial reaction I chose the Urostomy.
The op was done in Addenbrookes because at that point my local hospital simply didn’t have the capability to deal with such a huge op. And so it began. On 8th August 2009 I was admitted to a single room on the MALE urinary unit in Addenbrookes there was another lady in the room opposite to me who had also had the same op. I was absolutely terrified, anyone that knows me will not associate that particular emotion with me but I was most definitely terrified and I was certain I wouldn’t come out of it alive. But obviously, I did.
I passed a dreadful night –despite the sedation, early next morning I was taken down to premed and they inserted an epidural –this was for postop pain relief if it worked –I expected it to hurt like hell but it didn’t it’s the weirdest feeling, feeling your legs going cold and numb. Then I got the “good stuff”, the next thing I remember is being woken up. As it turns out straight out of surgery – by Mr. Turner tweaking my big toe and pushing a phone in my face. The surgery had taken twelve and a half hours and my husband was climbing the walls. I think he said Mr. Turner rang him 3 times during the surgery. I was now in fast-track recovery with a nurse literally sitting at the end of my bed monitoring my every breath. And the worst part was my mouth was so dry it felt it was full of sand. Gradually a probe was removed from my neck – I was glad of that- and after a couple of hours, I was taken back to my room. I was monitored constantly and all was well. I didn’t get out of bed for 5 days because of the epidural, but when that had gone to be replaced by oral pain meds I was out and about. I was into the hospital for a total of 9 days during the op they removed my bladder both ovaries, 20 lymph nodes, and my urethra. I accepted the stoma because plainly it was bag or box no choice really I didn’t fancy death so stoma and bag it was. My husband has no problem with it, he says he would rather have me alive and it’s just a part of me. 8 yrs later it doesn’t bother him at all.
Before you have a urostomy, all sorts of things go through your head, How will I cope?, how do I change the bag? (you think you will never get the hang of it). How do I get my supplies, all sorts of things?
It’s now the new you, and the best thing you can do for yourself is to just accept it.
You are taught to change the bag before you leave the hospital – they won’t let you go until you can. You will be sent home with supplies and a stoma nurse will either visit you in the hospital or when you get home and set up your supplies for you, and they are delivered to your door. I order my supplies once a month. Personally, I change my bag once per day, I have sensitive skin and over time I have learned that no matter what brand of bag I use I cannot leave it longer than 1 day. If I do, one of two things will happen, either the bag will leak or it will irritate my skin and some bags for me are just awful. it is trial and failures to find the right bag for you. There are one piece and two piece bags, for me I prefer one piece for a few reasons but mainly because with arthritis in my fingers I can’t snap the two parts together. I also use adhesive remover – essential for sensitive skin – and barrier spray again essential and for me. That’s it, other people use different things but each of us is different. It hasn’t affected my work life since due to disability I no longer work so, therefore, any leaks etc can be easily dealt with at home.
Recovery – that is a full recovery, took about a year- I was up and about on my feet within days. I didn’t attempt a shopping trip for about a month. Highs of recovery – simple, I was cancer free, lows of recovery – overwhelming tiredness and frustration that the most, silly simple things would tire me so completely that I needed to go to bed and you find yourself reliant on others for even simple things
The tiredness is still there I just do not have the stamina that I used to have but hey I’m alive!
What am I most proud of – I’m still alive I beat the beast.
What I would say to anyone else facing this. Don’t be scared it really is not as bad as you fear, the reality isn’t that bad – our brains are our own worst enemy. Oh and wear support undies, it makes all the difference, your stomach is now a very delicate area, the stoma has weakened it and it needs support.
There ’s one more thing though, my overall state of mind from the beginning of the journey to the culminating surgery was that I went into a Limbo, my life just stopped. I still functioned and interacted but it was as if it wasn’t me, I was sort of outside looking in does that make sense?>/p>
I’m now at the point in my recovery where I have a yearly check, bloods, x-rays, the odd renal scan, and CT. My care is shared between my local hospital and Addenbrookes and so far I’ve been clear