Hi, my partner was diagnosed with SCC anal cancer at the end of July. And has just completed her round of chemo radiotherapy (though the chemotherapy was stopped two & half weeks into a five & a half week treatment program, due to low platelets). Her journey is, as are everyone's on here very bumpy. She is a nurse and there is no concealing the medical truth from her, or buttering things up, she knows!
This our story so far.
It started back in the beginning of April with a bit of blood when passing stools. Piles I suggested (being a born optimist)? None the less she went to the doctor for a check up, and was referred for a non urgent colonoscopy. Roll on to the beginning of June and I hear a scream from the bathroom and my partner is bleeding a lot and she asks me to have a look and take a photo. Something was protruding from her bottom. I think it might be a prolapse? But she knew! Armed with the photo of this thing, she returned to the doctor and recieved an URGENT referral for a colonoscopy. Roll on 5 weeks and she finally has the URGENT colonoscopy. I'm in the waiting area and I recieve a phone call from her, and I can hear the fear in her voice. "It's not a prolapse, I've seen the bloody thing!" I get called into a room to sit with lovely lady who only came into my life one year before, and they describe it as a tumour. "Don't be alarmed", the Nurse said. "We reffer to any growth as a tumour." My loves eyes are welling up, and I'm getting choked up seeing the fear in her, because if anyone knows, she knows! CT scan and MRI scan over what felt like forever and actually took us in to the beginning of August.
August the 9th, I've left to spend the weekend with my children and I recieve a phone call from my partner, and she says, "It's cancer, they've just phoned me and it's cancer!" I'm heartbroken and angry all at the same time. How can they just tell you over the phone when there's nobody with you, just like you have a mild infection, they've just told you, you have cancer!!! It gets worse, they've picked up a second growth nearby on the MRI.
Another week goes by and another colonoscopy. "That wasn't there last time you had a colonoscopy," they told her. How was that missed?
A week later we see the Oncologist, and we hear the words "curative intent," followed by, "if the PET scan shows no spread beyond the pelvic region".
Another week goes by. PET scan. Following week, called in for a mark up scan. This has to be positive news, I say to her. They wouldn't call you in for a mark up scan if they weren't going ahead with radiotherapy, and the oncologist said they would only be giving you Chemotherapy if it wasn't confined to the pelvic. The first positive bit of news that we still hadn't received. On to the mark up scan and I ask the radiographer if they'd had the results of the PET scan. Yes he says, there are two growths, one in the anus and one in a nearby lymph node.
Roll on six and a half weeks and my poor lady is still in a massive battle with pain from the broken skin following the radiotherapy. It seems to be getting worse. Tonight before she finally fell asleep sobbing she said she needs stronger pain relief, but she's already taking 10ml of Oramorph. Can someone please tell me it starts to ease for her soon, tomorrow will be her 5th day since she finished her radiotherapy.
Feeling helpless right now.
Hi kaleb, firstly let me welcome you to our wonderful supportive group. Am I glad your lady has you by her side during her toughest time. When you actually finish the treatment you have what is a build up of effects as the treatment continues working to help kill the tumour. So she is going through her toughest period yet and getting the pain relief right is the plan. See if it’s possible to up her morphine which is what I did and also I took paracetamol and ibuprofen alternating every two hours so that it stayed in my system. Bowel movements can be pretty painful to due to the inflamed skin so get a portable sitz bath from Amazon where she can fill with warm water and do her business in it if she needs to as it helps and these are great for soaking in with a bit of sea salt to ease the skin. I hope she has been given some creams to help the skin heal. Members on here vary where some don’t need so much pain relief and that’s great for them but others are not so lucky and I was one of them. I have seen on here that some peoples skin blackens then rapidly peals and starts healing for around two weeks after treatment stops. My skin stayed completely intact but had a lot of internal swelling and it took around a month. She will start to feel better when she passes the crucial period and find ways of easing the discomfort like the sitz bath, loose underwear and I bought some great harem trousers so nothing rubbed that area. With her being a nurse is great and hopefully her experience helping others can be an advantage when muddling through various creams etc. The bowels for some misbehave for a while and regularity is a challenge and a big must when taking opiates is to take STOOL SOFTENERS and not laxatives. I took movicol every night to help with bowel movements. In this group we talk about bowel movements, future sex lives, dilators and anything really. Wishing you both good healing physically and mentally.
By the way, I am over three years post treatment and doing great and just have one lasting side effect of treatment and that is I’m lactose intolerant and my bowels are very fragile with certain foods making me either constipated or the other and try to stick to a simple diet and no alcohol unfortunately , or CHOCOLATE! But at least I am healthy.
Julie
Thanks for your kind reply Julie. I'm glad that you're 3 years on and healthy. My partner has so many different things to take and apply, but applying anything to what's in effect an open wound in an area that is so sensitive anyway is so incredibly painful for her. She has broken skin all around her anus, and just inside her vagina, she's in absolute agony. She's already at the maximum recommended dose of 20mg of morphine. She has morphine gel, Flaminal, Cetraban, and she had those pink dressings (but she gave those back because they caused her more pain) to apply. I know she's depressed, she's lost her appetite, and won't eat without me putting a bit of pressure on her to, presenting her with meals and food (I think it's partially the fear of what goes in must come out, and the depression).It's hard to watch someone you love, who was so independent and strong become so fragile. She knows what she needs to do to help her heal, but the physical pain and the depression are making it feel almost impossible.
Hello Kaleb - you sound like an absolute star in your support of your partner! I am 17 months post treatment and for me the pain and discomfort was bad until 11 days after I finished and then it miraculously faded gradually. I was in a dark place for the first 2 weeks and couldn't stand any clothes so wore loose skirts with nothing underneath. The fatigue was like a fog I thought I'd never come out of and I slept a lot. I carried on with the oramorph for 6 weeks and gradually lengthened the time between doses and amount I took - don't worry the nurse told me - it works on pain and you don't become addicted. She was right. My skin turned black and then peeled and I was delighted when I saw normal pink skin underneath. I completely lost my appetite and so just ate very little but often. But as the nightmare fades away you start to recover appetite and sense of self. It sounds like you are the perfect person to see your partner through this. She will recover.
All the very best
Carole
Hello Kaleb,
As Julie has said, this is probably the worst part, so hopefully your partner will be over the worst soon. If she is still in pain then contact her medical team, and they should be able to help with this, and of course any other issues as they arise, but we have all had different reactions and different side effects, so try to take each day as it comes. Make sure she uses the creams she will have been given to try and limit the skin damage. I would agree to get a sitz bath, helpful in many ways. even if it's just to dip her bottom in to soothe and clean it.
I am three years post treatment and all is well so far; The chemoradiation is tough, that's for sure, but you know it is considered very effective. I wish you both well and healing and comfort for your partner as time passes.
Kaleb
Every one of us on here can empathise with what your partner is going through right now because we have all been through it and apart from a few who weren't quite as badly affected, a lot of us remember only too well what a really tough time it was. And once the next few days have passed she will turn a corner and start to heal, honestly. It seems to go on forever at the time but there is a light at the end of the tunnel now, it just takes un uphill climb to get there. I am so pleased she has you by her side, it makes the world of difference to have that support.
Julie has given you some excellent advice on pain relief, and I can only underline what she said about doing a bowel movement in the Sitzbath - it honestly is less painful when the bottom is submerged in luke-warm water, and the bath is easily emptied and disinfected afterwards. And I just wanted to check, is it Flaminal Forte cream she is using? There are two different creams and the Forte is for exuding open wounds, which I had as well.
And don't forget that opioids cause constipation - as mentioned, Laxido is essential, the last thing she needs is to become constipated on top of everything else she is going through.
A gentle healing hug her way from me.
Irene x
Hi Carole, thanks for your kind reply.
The pain relief was increased, to include slow release morphine to be topped up with Oramorph if pain spikes occurred. My partner is now at the black skin in the groin stage, but all of her broken skin has pretty much healed. It turned out that she also had a staph infection, so a course of antibiotics was prescribed too. I can't believe it's 9 days on and she's in a completely different place healing and pain wise. She has experienced no pain now for about 3 days and is considering coming off the slow release morphine too.
Hi Irene, I think the gentle healing hug may have had an effect. My partner has turned a corner, and though she is still very much exhausted, the pain has all but gone and her broken skin healed. Antibiotics were prescribed and slow release morphine, because on top of the damage from the radiotherapy she also had a staph infection. We just have to sit back and wait and hope that the treatment has been effective.
Kaleb - that's wonderful progress - well done to you both! I would advocate caution in coming off pain relief too soon. Its easy to think you are coping great but to forget that the morphine is actually taking up the slack! Try lengthening the time between doses. She is on the road to recovery now - it can be long but you will get there. To find out about infection must have almost been a relief in you realising something else was having an effect.
Carole
I whole heartedly agree with you Carole regarding coming off the pain relief too soon. When I was on it and pain dropped I got brave and thought I didn’t need it. I had an appointment and my nurse asked me what dose I was on and I proudly announced I had stopped the morphine the day before and felt great. She was somewhat surprised and didn’t look amused and said it was the morphine helping me and it stays in the system for a couple of days. She was so right and the pain came back with vengeance and it took a couple of days to get back to where I was with the pain control. Was assured I wouldn’t become addicted and it was monitored.
Julie
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