Honest opinions 2 Stomas

Hi Jane

Thank you for sharing your experience

Julie

Hi Stacy,That is so much to go through,you are remarkable.I’m so sorry to hear you may be facing further surgery.It doesn’t seem fair at all.Love to you Jane xx

I'm 21, it's definitely been quite the journey for my family and me. I've met so many other patients that were a lot younger than me back when I was an inpatient, and their strength is always so amazing. This site looked very active, and the love and support that the members on here provide everyone and their families is truly wonderful. 

I was trying so hard to get my life back on track after my amputation, and now it's incredibly hard not to feel completely defeated, that all of my hard work and tears were for nothing no matter what decision I make moving forward. I know I shouldn't feel that way, but it's hard not to have those feelings.

I feel like a lot of the members on here that are cancer survivors or still currently fighting must feel like their lives just get put on hold during these awful journeys. It's always been hard for me to see my sisters and friends out living their lives and starting families, and I always feel like I'm stuck. Don't get me wrong, because I'm truly happy for them, but I miss my old life. If I decide to have the rare surgery, it will be my family and friends that convince me to give my consent. Mainly my niece and nephews, because they mean the world to me, and I want to see them grow up so much! I just don't know if I'm prepared to endure it mentally and being even more physically disabled than I already am. Time isn't on my side with my choice, but I want to focus on the holidays, and then hopefully make my decision. I'm blessed and lucky that it's never spread to my lungs or anywhere else in my upper body. The word "lucky and being a bone cancer warrior doesn't really fit in the same sentence, but I'm thankful I've made it this far.

Please accept my heart felt thanks Sarah, Julie, and Jane, for your warm thoughts and support, it really means the world to me. I've only been part of this site for a couple of days, but I feel comfortable sharing my journey on here.

~Stacy

Hello again Stacy

I can’t believe what you have survived, I know I replied yesterday but I am clearly still processing this and I am not even you haha. I think you’re amazing the mentality I have experienced from just a doctor saying I have cancer has been a real shocker for me. I have spent at least 5 years practicing ‘mindfulness ’ so I can be free of certain thoughts. Apparently being told I have something from someone, about my body gave me a victim mentality because as it is my body should I not have known first. I did actually know something wasn’t right I was just waiting for someone to name it so they could fix the pain and I could work uninterrupted. So I should have been prepared for it all. The more I have to have conversations about ‘cancer’ the more it annoys me. Cancer covers a vast spectrum as a medical professional telling me this I would prefer the proper type term and specification. I think for me when you tell someone they have cancer from the off it means it’s really bad. Well I am still here a year later, my employer had to let me go as ‘cancer’ doesn’t really help an employer understand how they can support you and not having had cancer before I don’t know what I need to help me live normal again. I have dropped from earning 25,000 a year to £400 on the 2nd of every month and my rent gets paid. Honestly do not know what to do with myself.

And then I look again at what you deal with you are amazing  

Julie x

Hi Julie,

I can totally relate to the shock of hearing the word cancer. However, it wasn't really the word cancer that made our hearts skip a beat, it's when the sports medicine specialist that I went to referred us to an orthopaedic oncologist. My original doctor was under the belief that my pain was caused by being an avid ballet dancer and playing sports in high school, since certain injuries are just part of those activities. The pain kept getting worse though, and after almost a year of trying to manage it and get some kind of a legit answer, we made an appointment with a sports medicine clinic, and it didn't take long for them to refer us to an oncologist, and that's when my panic started to set in.

Scanxiety is such a real condition, and it's something I've suffered with since that first set of scans that showed what was going on in my pelvis, as well as the biopsy that later confirmed the type of sarcoma that I had. The size and location of it at that time is what was causing the increase of pain in my hip when walking or just putting weight on it at times.

I'm not sure if I would say I was annoyed during our appointments, or just trying to somehow accept everything they were telling us. I was so close minded to everyone and a complete emotional mess, I just saw my life ending as I knew it, especially knowing that losing my leg was the only surgical option that would allow me to have clear margins. One of the hardest parts of knowing you have cancer is putting your complete trust in the hands of someone you don't know. Feeling like you're at the complete mercy of the oncologists and surgeons to somehow get you through all of it. I'm so incredibly thankful that the care I received back then and once again with the current situation I'm in, they make me feel like I'm more than just another patient or number to them. I think that's important to everyone who has cancer, no matter what type it is.

Despite still living at home with my parents, I was actually working for a friend of theirs after high school as a secretary and billing. I was so thankful to have that job, they were totally understanding with me needing to call off from work for appointments, and even though it's not the career I wanted, it made me feel good to have something to do and kept my mind busy. Once we learned that I had a new tumor, I haven't been able to work anymore, I've just been too overwhelmed by everything. Not knowing what to do with myself is something I struggle with everyday, working gave me something else to focus on, but I just can't anymore.

If I somehow woke up tomorrow, and said yes to the main surgery, they suggest doing the ostomies as soon as they could schedule me in for the surgery. Under more controlled conditions like for tumors or a severe bone infection, they want to do the ostomies first and make sure I don't have any infections, or other complications before undergoing the main surgery. I still want to enjoy the holidays and not be recovering in the hospital, but I do understand the need to move things along should I agree to it. Providing there aren't any issues, my stay in the hospital wouldn't be too long after the ostomies, but there's always that risk with any surgery. My stay after the main surgery would be a long one, with no given timeline, since people who have had this surgery faced different challenges. So even if I went forward with the ostomies now, the main surgery wouldn't be until shortly after Christmas. I just don't know what I should do... My family and friends support me with whatever decision I make.

I try to focus on other things that bring me joy, and not overwhelm myself but that's easier said then done sadly. Speaking of distractions and being off topic, your Snoopy photo in your signature on here makes me keep looking forward to watching It's the Great Pumpkin Charlie Brown with my niece and nephews for Halloween. Anyway, I'm sorry to ramble so much, my mind is always so scatter brained anymore, and the lack of decent sleep takes toll on me. 

~Stacy 

Dear Stacey,

You have had a big shock and I think you are coping very well with all that your illness means or may mean to you. I have one stoma - the bladder replacement one and that is genuinely not so very hard to cope with - It reminds me of changing a nappy/diaper - everything I used to do for my daughter when she was tiny I do for myself and then put on a new stoma bag. I imagine that having two stomas means it is similar and as Sarah says they usually need replacing at different times. And both are easily reachable which helps a lot. You get used to dealing with your own bodily waste very quickly: I joke that I am now an expert in bulk liquid disposal and adhesives (the pouches or bags stick to your abdomen around each stoma using medical adhesive - part of the bags).

You have already had life-changing surgery with your leg and so you know a lot more than most people about coping after surgery. I think that gives you a lot of knowledge too about yourself and your body that you can use in making your decision on how you want to move forward. 

I try to remember that worrying doesn't cure anything and that turning things over in my mind just stops me sleeping. I hope you can convince yourself to think the same way so that you can continue to recover and make a sensible decision for you, your family and everyone that cares for you. 

Is there any chance you could speak with someone besides those people to help clear your mind? In Britain there are opportunities for counselling and hopefully you can access some too. I think being able to say what you want without having to worry about how the person listening to you will take it would be beneficial.

Enjoy your holidays and take good care of yourself.

All the best,

Latestart x

Hi,

Thank you so much for the warm thoughts and sharing some of your journey and experience with me. I value all the information I can get at this point, even though there are times when I just don't want to think about any of this. Hard not to though... 

You're 100% right about the worrying part, the endless anxiety and pain from the new tumor, my phantom pain, and lower back pain that I have keep me up at night and sleep deprived. Which is why I'm always posting in the Awake and Up All Night thread on here. My mind is always going so many places at once.

I've subscribed to several YouTube channels to better inform myself about what is involved with having ostomies, LetsTalkIBD is the one I watch the most on there. She does a good job in explaining everything and the products she uses in her videos. There's also a channel I'm subscribed to about the even more rare amputation surgery, but a lot of their videos are pretty graphic and extremely hard for me to watch. His was due to trauma at work 6 years ago, so it wasn't a planned surgery like mine would be. Mine at least would be broken up in having the ostomies done first, and then the main one once I'm well enough and no infections from the first surgery. He was only 19 when he went through it, and him and his girlfriend make vlogs about his everyday life. It was incredibly hard for me to become disabled as a teen, and here I am again having to make another life altering choice. 

If I do agree to the surgery, which if I'm honest with myself that seems to be the direction I'm heading in. However, there's still a big part of me that doesn't want anymore surgery and pain, so I don't know. My most important reason is living as long as I can to see my niece and nephews get older despite the psychological issues and post op risks. I have to get new scans before they do anything just to make sure it still hasn't spread anywhere else, and then it's mandatory to get counselling to make sure I'm mentally prepared and aware of what my decision means as far as my quality of life.

So basically everyone is just waiting on me to make a decision. My family and friends support me with whatever I decide and won't make me feel guilty if I don't go through with the surgery. I just wish these decisions were easier to make, or that cancer never existed in the first place, but this world isn't fair. Despite all of my crying and emotional moments, I can somehow still show everyone that my sense of humor is still alive and well, and that the old Stacy is still in here somewhere...

~Stacy

You sound very well balanced to me. Like you I am able to use my sense of humour to help myself and others cope. Even black humour counts and gets us through.

Take each day as it comes is my advice and try not to do too much 'what ifing'. Have a happy Halloween then it's a countdown to Christmas and New Year's. Enjoy them with your family and friends.

Good luck with your decision.

All the best

Latestart x

Hi Stacy

It’s hard to imagine how difficult the decision you have to make will be for you-I think it’s beyond our imagination.

I didn’t watch anything in advance of my own surgery, didn’t research it beyond what I was told by my surgeon, and still cannot watch anything about it. I suffer from ptsd now, and it would be impossible for me, but at the time I was facing my surgery, I just didn’t want to have any images in my head which might scare me so much I wouldn’t go through with it as the surgery involved so much more than “just” having stomas formed. 

All I wanted was for the pain to go, and at that point that was the most important thing for me. I knew nothing about life with stomas, so I basically learned about that as I went along and discovered what worked for me. 

Over the years since that surgery I’ve gradually become more disabled due to a different pain, to the extent that I am unable to walk much, even with 2 sticks, and can never go outside on my own. I use a wheelchair when I do go out and need help. 

Unfortunately I wasn’t told about scan results for yet another (different) problem more than 2 years ago where severe osteoarthritis was confirmed. Long story short, I saw a surgeon recently to discuss more surgery-a hip replacement. It took me a long time to accept the possibility of further surgery, but once again my pain levels brought me to consider it. 

I was devastated to be told it wouldn’t be possible due to an unacceptably high mortality risk for me because of other conditions I’ve had-a stroke, pulmonary embolism, renal disease and diabetes.

Suddenly my surgery option was snatched away. I will never be able to have surgery, my pain will increase and I will become even more reliant on the wheelchair. My dream of walking again without pain has gone and that has been very hard to accept. 

I appreciate that this is nothing like your situation, or the decision that you have to make, but after having cancer and recurrence, massive surgery and now permanent disability for another reason, I feel at least I have some empathy.

I don’t know how long you have before you have to make your surgery decision, or the implications of you waiting to make your decision, but it’s an incredibly hard one for you especially at your age. 

Sarah xx

Dear Sarah,

I hope you don't mind me responding to your comments. I hadn't realised how hard things are with you.

• I know that hip surgery is tough (I had an emergency hip replacement after mine  fractured sponateously 10 years ago) but I also know that these days they can do it via spinal block rather than general anaesthesia.

My 81 year old husband had his knee replaced that way last year (he'd had cancer, heart attack, triple bypass, borderline diabetes and investigations for potential lung problems) and the anaesthetist was a bit worried, but he sailed through it. The end of the pain gave him a new lease on life.

At the time of my cancer op, I'd just had a PE which I had to dissolve by daily injections. Again, the anaesthetist was worried but kept me going despite at least one complication along the way.

Could you seek a second opinion? One's quality of life is so important. More than quantity when you get right down to it.

All the best,

Latestart x