Feel like changing my look/clothes to feel better - anyone else?

I have osteoporosis possibly 10 years having had this many years I had walking issues stairs so hard but weirdly since the tumour was removed I don’t have this although joint pains nothing like when I had the tumour and being told this has been there 15-20 years answers many questions of poor posture mobility too 

I used to teach yoga t’ai chi and Pilates when I was younger so have been flexible and even though skinny in some way fit just slackened off over the last 10 years of me doing very little 

I am looking to get back into this but working with some cancer groups to help others like or similar to me and my situation to maybe help me too I am thinking this may be another thing I could consider doing I am still needing to heal first 

my mind’s in overdrive body lagging behind at the moment 

I am very much into vitamins and stopped coffee but have Spacegoods mushroom coffee and I really think this has helped me (worth a look!) 

I do some small amounts of t’ai chi and that’s helping me mentally and lessening some of the body stresses and pains I think sticking at this will eventually make me more comfortable and stronger

i suppose the recovery has to happen first but I thought I would be at a better place by now but I am not and I’m getting to understand this and my healing process 

thank you for sharing I feel I’m doing ok do again thank you for that too 

I suppose we have to accept us and us and enjoy things as little as they are and I’m am learning. That too 

I know for me it took much longer to recover than I thought it would. I had connected with some other ladies who had been through the same surgery as I had-a total pelvic exenteration-and they told me that it would take a year to recover. I met them for lunch one day so I was getting information right from the horse’s mouth as it were

I thought, surely not! But they were right as it turned out. And it is sometimes not a linear recovery, so it can feel you take one step forward and one step back, so don’t beat yourself up about seemingly slow progress. Every little bit of progress is important, and even tiny steps  make a difference.

You mentioned stinging on your skin with leakage from the stoma. Think of a baby with nappy rash-their skin gets sore if their nappy is on too long and it’s the same for us! If anything leaks onto my skin under the bag, say when I’m asleep and I’m not aware of it, I’ll wake up with sore skin. I dab some calamine lotion gently onto my skin around the stoma and let it dry (I use a hairdryer on a cool setting) and make sure my skin is completely dry before putting on a new bag. It really helps calm and soothe my skin. 

I was encouraged by others to set up an online private support group specifically for ladies who have had the same surgery as me, and I’ve had that running for more than 5 years now. It’s been a real success, so you might benefit too from doing something to help others. It gives you a nice focus and sense of extra purpose to your life, plus you meet people who have been through the same experiences as you have. I find it very beneficial to chat to others who know exactly how I feel. 

Sarah xx

Me massively so x

i am still dealing with the after effects of the surgery as only has my operation on the 13th June had emergency surgery and have a huge huge scar that’s not healing well if anything worse than when I came home 

I have district nurses coming once a week now using these manuka honey patches thick dressings on top so my tummy is completely covered it’s much much harder than I ever imagined 

I had to change clothes in so much as I needed to too and I’ve kept me just adapted it to have wide pants maxi dresses and maxi skirts cool jackets blazers but I love my trainers that’s stayed the same 

I felt I needed to become a new me to be able to transition post surgery and having a stoma I know maybe shallow to some but for me it was like throwing the past away and looking forward but I had to out weight on as I dropped to 29 kilos and was horribly poorly!!! I am 40 kilos now feeling and people say looking better which is helping me get there as I am still managing things as they are that’s not moving as fast as I would have thought 

I think it’s very isolating too in some ways but I’m little but loud and proud I survived and I think anyone that has should celebrate that 

Thanks again Sarah I think I will and your help and advice has been so amazing xx

Ooh, I haven’t got any experience of the manuka honey dressings but I know others have found them really good. It must be difficult to have your whole tummy covered so I really hope they help with your healing. 

My abdominal wound was vertical and it did open up a tiny bit which gave me a fright at the time! It became infected, and it was very difficult to get help as the first Covid lockdown had just started, and the nurses wouldn’t visit. Luckily my partner took a photo and got advice from the local pharmacist about dressings for me. It healed up quickly luckily. 

Reading your posts today, you are sounding much better in your own mind-thinking ahead, planning good things and I’m sure you’re doing better than you might think! 

Sarah xx

Thanks you 

I have been so overwhelmed with the diagnosis to surgery being sent home wishing just really months and kind of left to cope and manage things 

I have had only a little sickness more pain tbh !!

the leaking was horrible and had to go back to the hospital twice as the nurses first said it needed more care than they could offer but the hospital didn’t !!

since reaching out to stoma companies for samples all have been really helpful except coloplast they were awful unhelpful and completely disinterested

I spoke to unora and DANSAC both incredibly kind and helpful and I have been using DANSAC Two piece drainable until the wounds heal more that’s helped me manage the aroma and the wounds now separately that’s much less stressful 

the unora is I think going to be my go to or DANSAC once I’m done managing the wounds 

I feel I survived this with a purpose what that is I have to discover but I’m sure I will 

I love that you spent the time to reply and explain things from your own perspective and experience it’s really helped x