Newly diagnosed, just saying hello.

Hi Adajay

i too had APR surgery last October and a permanent stoma. It is a big surgery and it knocked me out for the first couple of weeks but I made a gradual and good recovery. I was very careful about not sitting down, always going from one side to the other for several weeks. I found after showering I would use a jug of salty water (like when you have a baby) which was very soothing and then a hairdryer to ensure my wound was dry and everything healed very well. So this obviously worked well for me.

I had one lymph node affected but obviously this was removed with the APR surgery. I did have some chemo but couldn’t tolerate it as I developed severe diarrhoea so was advised to stop it. 
Unfortunately in August my op developed a hernia underneath which I am now waiting to have repaired, this is in fact the most difficult part of my journey but I’m hopeful of its successful repair.

I’ve had no problems with my stoma, I would have liked more support from my community stoma nurse regarding what I could eat etc as it seemed all the fruits, veg and salad I love were not on the menu! However I’ve just gradually introduced them and now there’s not much I don’t eat. 
I’m really wishing you all the very best, my diagnosis and op was such a shock as all along I was told there wasn’t a problem even when I had a polyp removed. I was told it looked benign so I it was a huge shock and hard to process. 
Try to take things as easy as you can before your surgery and treat yourself, anything that takes your mind off things even for a short while is great. 
Sending lots of love and positive thoughts Evadaisy

Thank you so much for sharing your experience and tips Evadaisy; it helps to hear real examples, it makes it a little more real, but also a little less scary - hard but do-able. I'm sorry to hear you're having further problems and hope you can get treatment for the hernia soon.

I am very much with you on missing my veggies, especially my greens! Stewed pears and apples have proved useful in keeping things running smoothly stoma-wise, but likely to get boring. i'm going to miss sprouts season altogether- definitely not recommended for a new stoma. 

I thought I just had bad haemorrhoids,  like my Dad. They kept offering me anusol, which was useless; so I stopped asking about it.

I don't feel like I have information yet, so appreciate this all the more, thanks again. I'll be thinking of you and hoping you get that hernia sorted as soon as may be, hugs Maggie xxx

Hi Maggie 

Thank you for your reply I hope you’re sleeping well and not feeling too anxious. I must admit it all felt very unreal at the time as you are trying to take in so much information. 
I’m sure over the next days, weeks there will be a plan put in place for you and you will be able to ask any questions you have with your team. 
I had the usual CT, MRI and PET scans prior to my surgery. Then a period of limbo while I was waiting for my surgery. I was in hospital for 12 days. Once home I was soon able to potter round and felt so much better. 
Please keep in touch, it’s not a common surgery and it’s lovely to hear others positive journeys. If you would like to ask anything about mine please do. 
Sending love and a big hug

Evadaisy

Thanks so much Evadaisy , I really appreciate it.  Sorry I haven't replied sooner,  I've been getting a bit low chasing more information and not getting it; also having issues with the stoma, which thankfully seem to be resolved... we'll see. Maggie x

Maggie

It is totally understandable that you are scared, and also that you want to refuse treatment.  BUT this is the best, and probably only chance of ridding you of this horrible disease.  You aren't alone, all of us here have been through it or are going through it and are here to tell the tale.  One small blessing that you have is that you already have a colostomy so won't suffer the painful bowel movements that go hand-in-hand at the end of the radiotherapy.  And the side effects don't all come at once, it is probably around the end of week three that you will start to notice, and it really is a very gradual thing.  And I remember at an early check-up after treatment the oncologist said the nodules in your stomach haven't changed, and my heart missed a few beats.  She reassured me and said if they were to scan everyone, they would find nodules that are mostly harmless, so I am hopeful it will be exactly the same for you.

Sending you a big hug.

Irene xx

Thanks Irene75359 I won't refuse, but the instinct to run from this is strong isn't it?! I hadn't considered the stoma an advantage and  that helps.

I was on methotrexate about 10 years ago  low dosage for rheumatoid arthritis and didn't cope well with it. So, despite horror stories about burning bottoms , it's the chemo that was worrying me most.

Thank you so much, you've helped me concentrate on the necessity and made it feel more manageable.  Maggie 《3 x

Hi Maggie

So sorry to hear you’ve been feeling low. I’m sure youll feel better when you know more. I so hope your stoma is ok now?Are you any nearer having a plan for your treatment going forward? I didn’t have any radiotherapy as the APR  surgery was deemed enough. I was really apprehensive about chemo but started it and it wasn’t as bad as I thought but after my first course I developed severe diarrhoea and my oncologist said she didn’t think I should continue with it. Of course I was relieved i but terrified too. 
Are you to have any treatment prior to your surgery? I so hope a plan is in place for you very soon, I think then you’ll find that you can plan and begin to look forward, past the surgery and any treatment. 
This time of year can make things seem more difficult too I think. I found the short days very depressing and longed for the spring. In fact I hung on to the thought of spring with longer days, sunshine and watching everything come into bloom, imagining sitting in the garden with a coffee just kept me going. (Yes sitting!!) Try to just take one day at a time and treat yourself to anything that makes you happy. You deserve it!  You will get there. 
Sending love and a big hug. 
Evadaisy