6 weeks post op part 1

I will have a look into the stoma powder. I think I will definitely need some. All these tips will always come in handy. 

Hi Matthew, after reading through my letters from hospital I think my cancer is rectal cancer although my tumor was in the anus. Very confusing but my last hospital letter says rectum as the site of the tumor. What do you think? I have read they are different. 

Hello positivepal23

I have read your story with interest, as I too had a tumour in the rectum, however the oncologist said that this had probably travelled from a polyp near the anal rim which was cancerous.  But what is key is the type of cancer, the majority of anal cancer cases are squamous cell carcinoma, so although my tumour was in the rectum it was still regarded as anal cancer.  As another member has pointed out, the gold standard for anal cancer is five and a half weeks combined chemo/radiotherapy.  I don't know of anyone who has been offered an APER section as a first option, that is normally reserved for cases where the cancer returns to the same place or isn't eradicated by the combined chemo/radiotherapy.  I am sure someone will correct me if I am wrong!  In any case you seem to be making a remarkable recovery from extensive surgery and getting to grips with the stoma.

Please keep posting on your progress!

Irene x

Hi Irene, thanks for the reply. The reason I thought I had anal cancer because every time I went to the toilet Ithe tumor popped out bleeding. So I  could feel it. So that is why my gold standard was an APER with a permanent stoma and no further treatment. That is why I was confused. 

So to carry on my story . When I got home I felt OK apart from the normal after effects of my operation. After a week I had an appointment at the GO to inspect my wounds, change my dressings and take my bloods. Everything was OK. Then the next day I felt something pop and a trickle down my leg . So I had a discharge from my backside wound. So this wound wasn't dressed when I came out of hospital but it now needed to be as I was leaking all the time. My other wounds that were dressed were OK. After a few days I had a pre booked outpatient appointment at the hospital for another check up. By this time the pain was becoming unbeatable and I couldn't sit down anymore. So after spending 7 hours at the hospital I had a CT scan and they found I had an infection. Also I had bladder retention. So I was re admitted to hospital with a catheter fitted and back on the ward with morphine and antibiotics. I  was monitored round the clock and had a blood test everyday also pain relief round the clock. Eventually after a week in hospital I was allowed to go home with morphine, antibiotics, blood thinners and also my catheter still in with a flip / flow valve which I still have in . Also my stoma stopped working for 4 days in hospital but after being issued laxatives is OK now. So after 5 weeks post operation I had meeting with my consultant and colorectal nurse. He told me that my  APER operation had gone well and they had removed all the cancer.  They had caught it quite early and I  was clear. So no further treatment was required. I  am currently weaning myself off the morphine and slowly healing and able to sit up with my special cushion. So fingers crossed I  will make a full recovery although it has been slower than anticipated....Thanks PP23.

Gosh positivepal23, you really have been through it.  Hopefully all this is behind you now (that's not intended as a joke) and you will continue to make strides in your convalescence.  The consultant's news is really positive, and It must be a relief to have this all over before Christmas too. Look forward to a cancer-free future!

Irene xx

PS Morphine gave me chronic constipation and I should have taken stool softeners the minute I started taking opiates, that was a hard lesson to learn whilst in the midst of recovering from radiotherapy.

Hi Kirsty, thanks for the reply.

Sometimes I can forget how far I have come in a relative short space of time. From coming out of surgery and being in such pain and being absolutely helpless in my hospital bed not able to sit up in bed and not being able to eat. But here I am 7 weeks post operation able to get out and about and do more each week.

Recovery has been slower than anticipated but after reading your story that you have been signed off for 6 months. I thought I would be going back to work before Christmas but having not driven yet I thought is was a bad idea to drive on morphine. Although I have nearly weaned myself off morphine but there is the odd day when I feel I need the pain relief.

I keep being told to be more patient and give myself more time to heal. Because I had a setback and was re-admitted after week 4 with an infection to my backside wound it has taken longer to heal.

I have learnt so much for being on this forum from people like you that has helped me so much during my recovery. Reading people's stories has made ne realise hopefully I have been quite lucky and I do feel for people who are worse off than me. Emotionally I think having a permanent stoma has effected me quite badly especially in the early days.

As you are further along than me hopefully I will come to terms with the reality of it all. They say time is a great healer.

Thanks for your help. PP23

Hi Irene just jumped in here to say I was also offered APR as a first option but that was due to Crohn’s Disease. Apparently radiotherapy doesn’t always work as well for people who already have serious bowel conditions. That’s according to my surgeon anyway!

Hi again,

Definitely dont let yourself forget that only 7 weeks ago you were totally dependant on other people. This is such major surgery and it really should not be taken lightly to go back to work in my opinion. Originally I wanted to go back in November but I also had an infected bum wound like you and it still hasn’t quite healed (was 7cm deep!!!) so I am glad I have waited for a bit longer. As well as the physical side of things I really think getting your head around the major surgery and impact on your body is a LOT and you need time to get back to feeling more normal before diving into work. 

I won’t lie and say you will wake up one day feeling amazing but I am glad I went for this option because the surgeon seemed very confident it would help to stop the cancer from returning (at least not where they have removed everything anyway). Hopefully you can make peace with this as well. Just take some time to enjoy Christmas would be my advice - work won’t be going anywhere and when you are more rested and healed you can go back. Hope this isn’t too bold for me to suggest to you!

kirsty 

I remember you well!  But I think you were the exception rather than the rule.  So happy to hear how positive you are with what was major surgery and thank you for coming on here and offering support to others.

Irene xx

Hi , thanks for the reply. I am now 8 weeks post operation and feeling better every day. I am actually in hospital to get my catheter removed today and have a TWOC trial without catheter . I think this will be another big step in my recovery. I am able to sit down more and virtually off the morphine now. I just want to have a normal life now whatever that may be with a stoma. Thanks PP23.