Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Fanged I would call your chemo line if doing chemotherapy, if not would try GP but explain cancer treatment. My dentist also said to go to him with any mouth issues. I never had any during chemo etc, I used to eat ice lollies all chemo sessions non stop and zero taste or mouth problems, think it stops as much chemo reaching mouth. Hope they can find something to help.

Hope results are OK Podge. I actually chickened out of my 1 year check up on the grounds I told myself I could not possibly have cancer 3 months after chemo, many MN threads reassured me that all cancer treatment is overtreatment 😂

Sorry to hear your news @Podgedodge it’s what we all fear. Fingers crossed it’s scar tissue.

@FangedFrisbee you just had a big operation so it might be a reaction to something. Have they taken swabs? My rusty medical brain is saying Stevens Johnson syndrome. But don’t leave it get it seem tomorrow if you can.

@HauntedDishcloth one of the few bonuses of cancer no 2 is they let me stop the AIs while I was on chemotherapy so I haven’t taken any for 6 months. I’m pretty sure my liver issue is just due to greed. I am not taking any pills except paracetamol.
I am aching so badly I have just crawled into bed. Cheered by my cycling success I took a boat out on the river tonight but it was so tiring I am broken. Too much too soon! My friends just laughed at me which is fair. I am ridiculous!

Top x

@TopOfTheCliff the Christie agree with you and I'm sat in the oncology assessment unit feeling like a real fraud because they've given me a room because I'm clearly infected with something and everyone else here is neutropenic from chemo. Had bloods and waiting for fluids. Until the bloods come back they're going to treat me for stevens-Johnson syndrome. There is no real treatment it's just supportive fluids whilst it gets worse but I've had some serious pain killers.

Apparently I'll need an ng tube tomorrow as I haven't eaten for 2 days.

I think I'll be here for a few days/ weeks

@FangedFrisbee - that looks really sore, glad you're in getting treatment.

@TopofTheCliff - sounds like you had a lovely day, but, like you say, maybe did a bit to much, I'm still at that stage from my heart op even though it's been ten weeks now, my brain is telling me I can carry on as normal like before, but my body hasn't quite got the memo yet.

I actually chickened out of my 1 year check up on the grounds I told myself I could not possibly have cancer 3 months after chemo, many MN threads reassured me that all cancer treatment is overtreatment 😂 kind of same here @Silkierabbit - the guidance is that I should’ve had a three month checkup, but actually it’s 5 1/2 months and I haven’t pushed it, I have followed up some things that I’ve been worried about in the meantime with the GP and the CNS. When I read into the research around endometrial cancer, for lower risk cancer the routine checkups make no significant difference to detecting recurrence anyway, if I stayed at 1A/1 I would have been signed off immediately and only checked on demand. Although I was restaged as 3A/1 the characteristics of my cancer still make me pretty low risk, so I figure I’m in the same place really.

@FangedFrisbee glad you’re getting some treatment, but it does sound grim. My daughter is studying nursing in Manchester, I’m waiting for details of her next placement, I do wonder whether she might get the Christie. Well done @TopOfTheCliff for the diagnosis, dredged from your cancer brain!

Good news for me yesterday, although my neutrophils are lower than they should be, my CRP has returned to normal, which was the measurement that I was really worried about, so looks like that was just bad timing of the blood test after I was recovering from an infection, two weeks off anxiety for nothing!

Glad you got better results Siena Yes when I asked them about the annual check they are offering me, it does not check for reoccurrence at all, it does not check the side that had 2 cancers at all as had mastectomy that side, its using a method which misses 50% of the cancer type I had 2 of, lobular and misses most early stage as grows as a spiders web so it seemed a bit pointless to stress myself out for that. I asked for a different type of check and they said no. The nurse agreed it was a not a great check.

It is a bit nerve wracking though @Silkierabbit turning down things, I turned down radiotherapy because I couldn’t see that it made more than 1 or maybe 2% difference to recurrence, and absolutely no difference to survival, but I do feel like if I do get a recurrence they will say I told you so!

@FangedFrisbee - so sorry to hear (and see!) how much pain you are in. Hope you get some effective pain relief and sustenance into you soon.

Whoever said the universe needs a reset is right on the money - so many difficult experiences on here recently. I am pressing the big reset button right now - wonder how long you have to hold it for?

@AGreatUsername Thank you for the Mountain Lion!

I have a feeling phone appointment with my oncologist at the end of the next two chemo sessions and the last one will be face to face as he’s suggestions radiotherapy at that point. However I got a letter on the post yesterday saying I have a face to face appointment I’m not my usual hospital with the oncologist next month. Could this possibly about radiotherapy? To get me prepared? Or would it say that on the letter and be a different appartment.

they also found a 5mm nodule on my right breast last month at the CT scan but I’d only just had a mammogram the month before which was clear. They weren’t worried but now I am could the appoint be for that?

I have a very unexpected diagnosis. I was seen by infectious diseases today, and they've decided it's not Steven-Johnson's it's oral shingles and strep because I've swabbed positive for strep and the blisters are all over a nerve.

Absolutely perfect

@FangedFrisbee - wow you poor thing, glad they've found out what it so though.

Yes Sierra I turned down abemaciclib as side effects for another 2 years would have been too much and data looked patchy. I do occasionally wonder but it was helpful there was a lady on another forum same time as me saying no brainer not to take it and she took it but I checked and a month later she had stopped as far too ill on it. Its hard to know though, some people do every treatment going and get reoccurrence and others the opposite. I wish there was a crystal ball, if there was I'ld quite like to stop these hormone tablets if not needed.

I do so many other things @Silkierabbit around diet, exercise, supplements et cetera, but I think put me in a better place than somebody who does the treatments but none of these extra things. But yes, for the majority of people, the treatments don’t make any difference at all either it’s always going to come back or its never going to come back. You just don’t know whether you are in the say 5% that the treatments will make a difference to.

@EachandEveryone that happened to me. Not all oncologists or hospitals do radiotherapy so you might be seeing a different person for this. They explain it all and you sign a consent form then they send you a planning CT scan appointment before the treatment starts.

@FangedFrisbee glad you are being looked after.

I am so stiff today I can barely move. Pretending life has gone back to normal isn’t working. But it is rather lovely.

Thanks for that. Im glad they are cracking on with it. Anyone go to free Rieki? I wen5 for a second session today, Im not sure what it does to be honest but there were a lot of strange huffs and puffs falling out of me. Is it even advised?

I had some Reiki, it was just a nice lie down really though I am going to try craniosacral therapy next week to see if that’s any better. I carry a lot of tension in my body from a lifetime of stress and I realise I need to do something about it so that I can actually relax properly.

Oooh how do you get the reiki free? I too struggle to relax and so am looking for tension relief - my back is killing me!

I had a brief session of reiki when I was in for my blood transfusion and really liked it but I think that’s because being separated and single I really miss being touched. I haven’t had a proper hug in months.

Maggies centres do reiki and massage for free

If you are in London I go to Cherry Lodge. Theres all kinds of places but funnily my Maggies tends to do a lot of therapy but not the physical type😃

I've had reiki before, it's lovely, really enjoyed it. You should definitely go if you're able too

I received my biopsy diagnosis yesterday, I have invasive ductile cancer grade 3, now waiting for an mri appt to decide on best way forward, I feel strangely upbeat and normal, but my partner and Dd (23) are distraught, is my turn coming or am I just a bit odd? Would love to hear from others with this brand of cancer….

@Scandimandy no experience of that type, but recognise your feelings, think it’s something to do with now you know you can deal with it. Hope you are ok, be gentle with yourself, there may be a crash. ( but that may be just me) x

@Scandimandy Sorry that your diagnosis turned out not to be benign. I have grade 2 invasive ductile breast cancer, diagnosed start of Feb and have since had a lumpectomy and sentinel node biopsy and started radiotherapy a couple of days ago. Like you, I've been in this strangely upbeat frame of mind whilst my husband and daughters (20 and 22) have found it difficult. I've also been waiting for a 'crash' but it hasn't come yet. I think it's the not knowing that's the worst and once you have a diagnosis you can just start 'getting on with it'.