Today I am excited to introduce the amazing and inspiring Anita brown aka My Big Fat British Bladder Tumour (on Twitter). I have had the pleasure of meeting Anita in person and cannot wait until we meet again to natter the day away!
So, take it away Anita...
- Can you tell me a little about how you got your urostomy?
I was diagnosed with small cell bladder cancer in 2016. By the time it was found it had already spread to my lymph nodes, liver and bones, I’m classed as terminal. Had 2 x 6 palliative chemo and 3 x radiotherapy sessions, this has deactivated the cancer for now. However, small cell is fast growing and aggressive, so now it's all about quality of life for me. Once chemo & radio had finished I was still in immense pain due to ulcerations within my bladder, so it was recommended that I have my bladder taken out and a urostomy formed.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
I think those first few weeks whilst recovering from the operation are the hardest. Your body is healing, for me, it took a while, and you are having to deal with something that is totally alien to you. No matter how prepared you think you are I don’t think you can truly understand how you will feel until you have it done. I found that some of the nurses were not understanding, especially when it came to pain relief. I was told that I couldn’t go home if I was still on a morphine-based painkiller, regardless of the fact I was taking oramorph before the op. This didn’t seem to be a “big deal’ to the nurses, however, this was a big deal to me I had just lost my bladder! Once I came home I realised I needed the V-shaped pillow to be able to sleep, half sitting up, as I usually slept on my side and couldn’t do this due to the op and the pain. I have advised others before their ops to get one, as it helped me so much. I also ended up back in the hospital after 6 weeks as still couldn’t eat much without gagging and had an infection. I think the main bit of advice I would give is to remind others that we all heal and recover in our own time and not to rush this. Rest when you can, drink plenty of water, and walk around as much as you can bear to. You know your body, listen to it!
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
A V-shaped pillow is a must or lots and lots of cushions. Good pain relief. I found that having smoothies helped, as I didn’t get my appetite back for 2 months. Also eating small meals… big tomatoes cut up and sprinkled with salt and pepper. I also found milkshakes and rice pudding were great go to foods. I found I slept a lot, so when I felt myself napping I would connect a night bag, otherwise, I would not wake up and have an accident. Keep telling yourself that this is temporary, it will pass, you will get back to “YOU” again, you have to learn to be patience.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I found that many people on Fight Bladder Cancer Support Page had either gone through the op or were about too. Being able to speak to others certainly helped me, also seeing the full lives that they were living gave me hope. The page was also great for picking up tips on bag changing, night bags and such like. Knowing that others were going through the same process as I was, helped so much.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
I have found that other than Fight Bladder Cancer support Page, most of the stoma pages I found were for people with a Colostomy rather than an ileostomy. And Colostomys seem to be accepted more and spoken about more,
- How do you feel we can raise awareness for urostomies within the general public?
I think talking about it more, educating others, including healthcare professionals as well. People have been curious about my bag for life, so I encourage questions and show Sally Stoma to anyone and everyone who wants to see.
- When you are having a down day what one thing do you do to keep positive that you find helps?
I tell myself “that this too will pass” in fact that has been my motto through everything, chemo, radiotherapy, the rough days, the tough days. I also tell myself that its ok to feel like this and not to beat myself up after all we all have down days whether we have a life-limiting or chronic illness or not. It is natural to feel down and sad, we need those days to fully appreciate the fabulous days or not.
Wow, thank you Anita for being open and honest about your story! You are really helping raising awareness of Bladder Cancer and it is exciting to see where you next go!
Please join us next Monday when we have the lovely Richard Cornell sharing his story!