Hello group,
I'm on week 2 of chemo radio therapy. Today I had my first review, I had a few questions, the first being what stage am I ? as nobody ever told me. The answer was T4 N2 M0, I was shocked as I thought stage 4 cancer was the worst ! so I was gibbering a bit, I said the thing must be enormous ! the nurse said no, its called T4 because it has grown through the wall of your rectum, all news to me . . .. so anyway I said what about my lymph nodes, were they biopsied ? she said no, so I said well why nuke my lymph nodes if they haven't got cancer ??? she said we (nuke) the whole area, to different extents, just to be sure. I was a bit sceptical about this and she started on about how serious cancer was etc I said yes I know but surely you would biopsy a lymph node before destroying the lymph drainage in my groin, I have herpes which inflames my lymph nodes and active diverticula which flare and have infection from time to time all of which will get my lymph nodes going, but they know best ...... yes, so then she offered me a pack of wipes, full of petro chemicals and animal derived stuff, I said no thanks as I react to lanolin, which is stearates.
I wondered if it would affect the arthritus in my left hip in the long term, again she said it was a very serious thing cancer and just to have the treatment which means yes it will ? She was helpful, and I was grateful but it is a blunt instrument.
She said what painkillers was I using? I said none, she said I may feel ok now but by the end of it I would be on morphine for the pain ! that was not good to hear, as I haven't had any pain killers yet, and 'cos of my dodgy guts dont really like to take them. I said but it was very painful after biopsy, will it be worse than that ? she said "Yes. " Flip !
She gave me a cushion with a hole in the middle, to add to my collection, I will have it on my telly chair. She also gave me some honey ointment which we looked up the ingredients and it is all ok, no lanolin, parabens, petroleum jelly etc so that's nice, will try it later. I went and bought some pant pads as I had to change my knickers 3 times yesterday, and I found those Water Wipes I have seen mentioned here, at the supermarket, also with no nasty stuff in them, made in Ireland, so feeling more prepared. Ordered calendula cream and a portable bidet. The nurse is asking the doctor if I can use my pure coconut oil suppositories, I make them in a silver paper tube, keep in the fridge and snap off a couple of cms to use. I haven't used since I started treatment, but they were a relief after biopsy, they are nice and cold and you just pop one in at bedtime and it lubricates everything for the morning dump. I put turmeric in mine and it shrank my tumor and stopped the bleeding. But they told me to stop so I did. So I'm asking if I can just use coconut oil.
She is going to ask about whether I should be on an antiviral for the herpes, or if its better to only use it if I get an attack.
I was worried that if it had grown throught the wall of my rectum, when it was gone after treatment, would I have a hole there and develop some awful fistula, she said she hoped not, but it can happen, but mostly the sides grow back together and no, they can't stitch it up or clip it if it doesn't.
Hmmm I better be good and careful and rest and everything. It's not for long, I'm glad I found our forum !
Sarah.
Twigley Hi Sarah, you seem to be choosing your battles wisely. Medics may know a lot about average cancer treatment but you obviously know your own body better than they do. Like you I’ve had a lifetime of learning what works for me (40 years of IBS etc etc) so I tend to listen to medical advice then follow my own judgment.
I was devastated when I was told I had T4 & an anal fistula but the vaginal leakage stopped after radiotherapy & hasn’t been a problem since. The consultant thinks it unlikely I’ll need any treatment for it in the future. It was tempting to say “define unlikely” but I resisted
Coconut oil suppositories with turmeric - you’re amazing!
Painkillers are a whole can of worms, aren’t they? Personally I’d take them ‘as & when’ if they helped but they’ve seldom done much for me. Other people in this group would disagree. The only drug that always helps me is diazepam, it gives me a good nights sleep. It’s highly addictive for many people so GPs don’t like to prescribe it.
Sleep well, Toni x
Hi Sarah (Twigley),
Good to hear you’re asking questions along the way. I find the staging of cancers quite confusing too as different stages mean a different prognosis in different cancers so it’s good that you were given an explanation & good to know you have no mets also! Although I was under the impression that the N2 in your diagnosis means that 2 nodes have flagged up on your scans so that’ll be why they’ve been mapped into your radiotherapy. Just to add to that I think possibly the 2 nodes will have shown up as inflamed on your scans & with your T4 diagnosis there’s a higher chance there may be cells there too although you’re correct that the only way to tell 100% if the nodes were cancerous would be by biopsy but the whole of the pelvic area gets the fallout of the radiotherapy anyway so to have these mapped in is extra reassurance that if there are any cancer cells present there then they will be eradicated also.
I also avoid parabens, sls etc., in all of my skincare products, including shampoo, conditioner, body washes & make-up etc. I try to keep my diet as clean as possible too, although like everyone I do enjoy the occasional treat! I only ever buy ‘clean’ personal care/beauty products although I have found the only thing I can wash with ‘down below’ is unfortunately aqueous cream as even the cleanest of products sting a little & are too drying for the new skin even almost 3 years post treatment!… I don’t know if you’ve heard of the Chuckling Goat company? I buy & love their live goats milk kefir, I drink it every morning before breakfast it’s incredible for gut health & therefore the immune system although I was advised by the chemo nurses not to take it during treatment as any live bacteria is dangerous during chemotherapy even when it’s friendly bacteria! Point being they also do a great natural skincare range, a lot of which is kefir based, I’m going to give their cleansing bars a whirl instead of the aqueous cream & they also do a sensitive skin balm that I’m wanting to try too. Also if you’re happy using coconut oil I would ask if there’s any reason why you shouldn’t use that as a moisturiser during treatment, although you may need something more medicated further into your treatment.
If you suffer with regular herpes outbreaks it’d probably be wise to get some rescue meds in that you can start taking straight away ( I’m sure your GP will be happy to prescribe these) as when the chemo wipes out your immune system you’ll more than likely suffer an outbreak. Pain relief… I only ever took paracetamol & ibuprofen throughout, alternating every 2 hours when needs be, all any of the opiate based pain relief did for me was cause awful constipation unfortunately & that’s not something you want when your bottom has been radiated to within an inch of its life!
Yes I agree, concentrate on getting some good quality rest, this is when our body does it’s most effective healing. Find some good box sets on tv or a good book & feet up!
Nicola
Hi Sarah (Twigley),
Thats good that you can carry on with the coconut oil & also good to hear they’ve given you rescue meds for the HSV! Aren’t those weekends a welcome sight? I used to tick off those daily appointments on my treatment schedule & before you know it you’re at Friday again & doesn’t a bit of sunshine make you feel better too?
I know it’s quite irritating when you can’t sleep at night but it really doesn’t matter when you get the sleep as long as you get enough & it’s of a decent quality.
My lady bits suffered every bit as much as my bottom during treatment & on our weekly meetings between myself & my oncologist every conversation seemed to begin with the word vulva lol
Thats good that you’ve not had to use any pain relief yet but don’t be afraid to when you need them, like you up until probably almost the end of my treatment, mine was only 23 treatments rather than the standard 28, it was more discomfort than actual pain.
Enjoy your weekend & I hope the sun continues shining for us all.
Nicola
