Honest opinions 2 Stomas

Hi Latestart 

Thanks for your reply-I do appreciate you telling about your experiences and those of your husband.

I’ve had to do the daily injections on several occasions myself after my embolism and surgery. The doctor was astonished I had actually survived the embolism, and I had 6 months of blood thinners orally after the injections. 

I haven’t asked for a second opinion for a couple of reasons. I researched the orthopaedic surgeon before I saw him, and found out that he is a top guy in his field with extensive experience. He did say he was prepared to discuss further with the anaesthetists, but he spelled out my risks, kindly and with no sugar coating. If I survived the actual surgery, my chances of dying in the days post op would be astronomically high-and it could be very sudden, with no warning. If I did go ahead and survived, he reckoned my recovery would take 6-8 months-much longer than the norm. I’m not sure how I’d cope with that as I’m alone at home in a house with very steep stairs and obviously 2 stomas to manage for 10 hours a day and no-one to help me.  

Before my exenteration surgery I had an epidural prior to the general anaesthesia, and it was a horrific experience. I had gone through one when I was in labour with my first daughter which was very effective and straightforward. Before my surgery was very different-it was done by a trainee anaesthetist and he couldn’t get the site correct in my spine so it caused incredible pain. It then failed completely and the fluid leaked out of my spine, which no-one seemed to realise at first. 

My ptsd would simply not allow me to try a spinal block again. It is mentally beyond me to go through that kind of experience as the fear is too great, and too real for me with fragile mental health. 

I think my feelings about quality vs quantity of life are also different. I have been close to death on several occasions in the past few years, but I’ve always had the feeling somewhere deep inside that I would pull through, even when it was doubtful that I would. I don’t have that optimism nowadays.

I have my partner, my daughters and a new granddaughter to consider in addition to myself and I cannot put myself at an unacceptable risk of not surviving, having got this far! 

I would rather be alive, albeit it in pain every day, than not here at all. I try not to think too far ahead about the fact that we can’t afford to move to a more suitable property like a bungalow, and accept that this is the reality for me now. 

Life still has so many positives for me, that I choose to focus on them as much as I can. There’s no point in looking back to the fact that my arthritis wasn’t discussed with me when it was identified-the doctors were too focused on saving my life from a blocked bile duct and life threatening infection raging through my body, so I understand this was the priority at the time. A hip replacement would have been possible then, before my stroke, but I can’t change the past so try not to think about “what if” questions because they won’t help me. 

So for now, I take painkillers and other pills and try to get on with life as best I can. There are others who have far more to deal with than me, and for now, at least, I can cope. 

Sarah xx

Dear Sarah,

I get that you've reached the point where you can say with confidence 'so far and no further'. I can empathise too with the epidural and your reaction to it. 

And I agree that you want to live rather than take unnecessary risks - me too.

I hope things continue to make life bearable for you for as long as possible. In fact that goes for all of us, doesn't it?

With love,

Latestart xx

Thanks so much Latestart 

I think I’ve pushed my luck enough times now! Life can be difficult at times, but it’s not impossible and I still get on holiday with a lot of help so I’m grateful for that. 

Just have to keep going and try to keep smiling!

Sarah xx

Hi Sarah,

I truly wish none of us had to live with this horrible pain, and that there was some option for us to live a pain free life. It's so hard losing your independence, and being forced to come to terms with being disabled. It's a very frightening and humbling experience to have to go through at any age. Cancer battles change are bodies in such a horrible way, and takes an awful toll on us mentally. I think we all have a huge amount of empathy for each other.

I'm so sorry that surgery isn't an option for your hip, that alone is a tough pill to swallow when you know that the pain will only get worse and losing the ability to walk makes you feel like the weight of the world is on your shoulders. As crazy as it sounds, there's some part of me that wishes they never told us about current surgical option for me, I feel like it would have been easier for me to accept things, and focus on my quality of life by just managing the pain. 

In one of your replies to Latestart, you talked about quality versus quantity of life, and that's something that weighs so heavily on me daily. Even with the surgery I'm still going to be facing severe issues with pain, along with psychological issues that I can't even begin to imagine. 

I totally get your thoughts on not wanting to watch anything or research it more beyond what the surgeons told you, and I was the same way back before becoming an amputee, it was hard for me to search hemipelvectomy on my own to see what the recovery was going to be like from other survivors that have been through it. Looking back at how emotional as I was back then, I feel like it better prepared me for what was ahead. It's one thing hearing the surgeon explain it to my family and I, but an entirely different perspective hearing someone share their own experience. 

I guess that same kind of thinking is still very much a part of me. I just want to know what I'm in for in having two ostomies, and going through yet another life changing amputation at my age. I guess it's how I've been able to process things as much as I can, no matter what I choose it seems like an impossible path ahead that's going to be shortened with whatever choice I make. The surgical option might extend my life a little more, but at what cost as far as pain and psychological trauma is it going to do to me. It's always the "what ifs!"

One of your recent replies over on the Awake and Up All Night thread really connected with me. I also spend a great deal of time scrolling through my old photos and videos on Facebook, and here at home. It's hard looking back at my life before I had osteosarcoma, and seeing how full of joy I was back then. Ballet, playing sports, going out with my friends, and actually enjoying vacations without the memories of bone cancer. I still hang out with friends, and have went on family vacations, but it's different now. Even as I type this, my room that once had such a cheerful vibe to it, is now filled with mobility aids no matter which way I look. My bathroom is filled with grab handles, and a shower chair to help reduce the risk of me falling. I still enjoy decorating my room for the different holidays, but it feels like it's changed along with me. It's hard to describe my feelings on it.

Anyway, again I'm sorry to ramble so much, it's good for me to just write sometimes, and clear my head. I hope you're having a lovely weekend! 

~Stacy

Hi Stacy

Wise words from you.

When you’re much older, like me, I think you can be maybe more accepting of a decline in health as you age, and maybe it’s easier to come to terms with. We know in the normal way of things we have less life to live than we have already lived. 

Being as young as you are is a whole different ballgame. You have faced unimaginable things in your life already, and have potentially more to come. You are younger than my daughters, and they’re still my babies so I cannot imagine how I, as a parent and grandparent, would feel if my girls had to face something so devastating. 

While I have briefly at times thought about the quantity vs quality argument, my desire to live, no matter what, always wins. I lost my dad exactly a week after my 21st birthday-he was only 52-and I know how that affected my whole life thereafter. My daughters are older than that now, but I don’t want to leave them, or have them face their lives without one of their parents. 

I have been very lucky in my life-a very happy childhood (which I know we also gave our daughters) and many wonderful experiences-travelling all the world, having a job I loved, and generally being very happy with my lot. The past 7 years since having cancer have had some awful times, but also some wonderful ones, so I still consider myself very fortunate. 

I look round my house, with walking sticks in every room, grab rails, stools in the kitchen and bathroom and a chair in the shower, grabber sticks and a gadget to put on my socks and sometimes wonder how it came to this-but it wasn’t cancer, it was something completely different…just one of those things that happen as you age, The loss of my independence has been a bitter blow, but my partner would rather have to shower me and make my meals than visit my grave.

So I keep going, because it’s what I’ve always done. I moan about my pain some days, about the fact I’m confined to the house 24/7, but then I remember how lucky I am to be with someone who adores me, would do anything for me, and who makes me laugh every single day. I won’t take the risk of losing all of that for the chance of not being here if I chose to take the unacceptably high risk of surgery. 

I truly don’t know how you can weigh up your options in your own situation-it must be beyond difficult for you, and your family. You are a remarkable young woman.

Sarah xx