APR Resection Barbie Bum

Hi Linds 

thanks so much for sharing your experiences. They have been so reassuring at this time for me. You sound as if you have coped so well and is it 5 years now ? I only hope I have your strength. I'm booking my hair colour tomorrow! 

Annie xxxx

Thank you Linda.

You seem very knowledgeable about this having all that has happened. I have been very positive but I think it helps if you have a great partner and family cheering you on at every step.

ImI 57 ish nearly the 58 I have met wonderfully courageous people having chemotherapy radiotherapy nothing phases them and always with a smile on there faces.

The NHS staff, nurses,doctors at Northern General, and Western Park Sheffield I cannot praise enough absulutly wonderful and always helpfull and will listen even when rushed off there feets 

The only critical thing I have to say is the food at Northern General was Sh.t but we always had fun tasting the invention on the plate even if we did go yuk. My taste buds have changed cos everything tastes of strawberry cheesecake so I have learnt I no longer like any veggies, salads stuff,crisps,cakes,etc chicken fish mash peas and beans and nimble bread seems all I like at the moment but I try every once and a while to see if I can tolerate anything else. The Oncologist says as long as I'm eating I'm ok and have not lost weight.

My treatment was open Surgery and when I can out of surgery and into HDU the drugs made me have a psychotic episode out of it for 4 days but after 6 more days I was home, think you recover better in your own home better.

I should stop waffling on sorry.

Have a great day 

George xx

George, I had my APR back in March. I used a valley cushion (loaned to me by my stoma nurse) until mid May (about 7/8 weeks). I gradually weaned myself off using it, used normal cushions. Gave back the valley cushion end of May and now just over three months post-op I’m slowly getting myself used to sitting on hard surfaces. If I’m able to, i use a cushion, but when there are no cushions, I sit slightly leaning to one side, so I’m not sat directly on the wound. It’s just baby steps. I’m still not a fully sitting person but with easy tweaks, it’s so manageable now.

My nurse said that it’s huge surgery, and even three months post-op is still massively early days, so much healing going on inside. She said to realistically give myself a year to fully heal, but the way I’m sitting now is totally right for how long since the op. Keep talking to your nurses, keep giving yourself tiny mini goals. I promise you’ll get there. I was so so frustrated in the early weeks post-op, thought I’d never sit again, but now I know I will! Good luck x

Jmas it's so frustrating I was thinking I could be doing so much by now I'm a go and do it person. I am still struggling with my energy levels wanting to do but body not able to do getting on my nerves.

I am coming off pregabalin, Atorvastatin,and oramorph all gradually but have had some side effects but not sure if the tablets or from the chemo radiotherapy Jan of this year. The feet get cold then my legs and then I start to shiver, don't understand this as it baking hot here at the moment but hey ho I can deal with this.

I am starting to sit for little bits but have to change cheeks then I lay down again or go for a little walk.

We went shopping yesterday but the stoma was playing up so I would not go to the check outs and pay instead just got into the car, also drove a couple of times for very short distacesd.

All in all its its  going to take time and I need to get my head arround that.

Thanks for writing and I wish you a speedy recovery but your making great progress and should be pleased with your achievements.

I shall try the setting goals that's after watching England play football on Saturday playing Sweden. Watched the other night sitting on the settee boy my bum could not take any more and then we're into penaltys think my bum went into shock lol.

Hope you have a great day and weekend.

George x

I’m sure you weren’t the only person in shock with the penalties! You’re doing well though to already be driving short distances. I wasn’t ready for that at 7 weeks post-op! Loving driving now though; furthest is 15/20 minutes at the moment, nice to have some independence back!

Hopefully someone else may be able to help with the side effects from the tablets you’re on. But with the energy levels, that slowly comes back. It’s a case of being active when you can, but not too much, and resting. Trying to get a good balance isn’t easy! 

Hi George 

When was your op. It sounds like It takes some time to recover? . I am just starting chemo/radiation soon but how quick did you have your op after chemo/rad ? So scared about op xx

Hi Anniemc50.

Firstly don't pannick. Just take it step by step in your own pace and rest plenty.

I had chemo with picc line 2 sessions over the radiotherapy period started mid December 2017 and finished mid January 2018. Unfortunately for me chemo radiotherapy didn't work as in a bracket of people that the treatment doesn't work for.

The chemo was easy and the radiotherapy too also had a marvelous appetite during this. In fact couldn't stop eating as it had steroids in the chemo 5FU and Mito.

I had a ct scan at about 6 week after the above treatment and after that I  went to see my oncologist at Doncaster 7 week after my chemo radiotherapy he told me my treatment hadn't worked but there was loads of options still open to me. 

2 weeks after seeing the oncologist at Doncaster there was a MGT meeting Northern General, Western Park, both Sheffield and Doncaster  they discussed my case and made plans. 2 weeks later I went to see a brilliant consultant at Northern General he looked and said I would need a MRI and another Biopsy that was about may it was carried out.

In the meantime I had more CT MRI and Pet Scan so the team had every picture and up to date, when I had the Pet Scan I had a pre op also. Forgot to say I suffer from claustrophobia so the radiologist, GP was Brilliant had diazipam this helped as I completed them all every time yes I was nervous but at every stage I thought positive and also was not ready to go from my lived ones.

My operation was 10 hours but my doctor at Northern general broke his finger so had him observe and a brilliant women doctor step up both have a wicked sense of humour and a brilliant plastics team, the operation was done at the end of May. As said earlier I had a reaction to the drugs but I am fine.

For six weeks I was told to lay on my sides which I did, I have made great strides but it's not quick enough for me but every day I'm doing more.

Most people I have spoken to got thought this Surgery quite easy so think positive, big believer in this and not to feel sorry for yourself and to push yourself to get back before all this started.

Good luck your be brilliant, please tell me how it goes.

George xx

Hi George 

I got quite emotional reading your post. Thanks for taking the time to reply to me. It gives me strength. I still can't quite believe this is happening.  I will try to face it with the same courage that you and so many others have. Do you know why you didn't respond to radio / chemo or is it just something they don't know? Best Annie xxx

AnnieMC50

I was trying to say but when you write it down it can come over rude.

Think Positive, Stay Strong, Be Courageous, you have so much Strenght inside you, you just don't realise it.when you think you can't the can comes out.

Good Luck not that you need it , keep me uptown date please.

George.xx

Hi George,

What you have said about not realising the inner strength you have is so very true! Good to hear that you're making progress - everyone gets through it all in their own time - listening to your body is key to it all, as well as staying as positive as you can. I was stage 3, surgery removed the cancer, and what an odd feeling after surgery, looking out of the hospital window to see the sun starting to set and knowing that I was now cancer free. Onwards and upwards after surgery! It'll be 6 years this September that I had my surgery, and people I meet now, that I didn't know then, have no idea... about the treatment I went through or the permanent stoma. And every now and again you sometimes feel you need to give yourself a "Go Me"!!!!!!!!!

Linda :-) x