Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@Babamamananarama thank you. My main concern is the children so hearing how someone else navigated it is really useful. It doesn't help that my 7 year old is always desperate to know exactly how everything works and what comes next. (He gets that from me).

Sorry for name change I don't know how to keep it on this and not @DuckingCancer without overtyping it which I keep forgetting to do.

If it's any comfort, @ChickandLamb, my DS was seven when I was diagnosed (eight now) and he seems to be coping ok. We got the school involved from the start which has been great, as they are looking out for him, too. They arranged a counsellor who he talks to every week - not necessarily about cancer, but just so that he has the opportunity there if he needs it. The only thing he has really openly struggled with is changes to my appearance - so he hated seeing my PICC and doesn't like seeing me without a hat. I have every sympathy with you - I hated introducing cancer into his life. It is one of my biggest regrets about all this.

The discussion regarding lymph nodes is really interesting as I also had some issues with mine. I was told it was incredibly unlikely they were involved. But then, on the operating table, it turned out the sentinel node was positive. They did an axiliary clearance of I think 34 nodes in total, and the surgeon told me in recovery that they looked v enlarged so to prepare myself for more being cancerous. However, on analysis it turned out that only one of those 34 was positive. Bloody typical!

And yeah, I get your point @KentishMama - sorry, I didn't mean to imply that everything is perfect now! But it is so nice to hear about ordinary (and exciting) stuff like house moves!

Good luck for surgery tomorrow @Acinonyx2 and @Vinorosso74

@AlbertCampion and @ChickandLamb, my little boy was 5 when I was diagnosed, 6 now. He has coped very, very well - much better than I expected. I explained about the lump, and that it is called cancer, and needs to be removed. Then explained that I need some real super hero medicine just in case any lumpy bits are left anywhere. And then we likened chemo to Kryptonite, because that can also have some side effects for some people! He asked a lot of questions, and still does, but we have been very open throughout and it worked ok. We also let the school know early on and his teachers have been amazing!

Good luck for surgery, @Vinorosso74 and @Acinonyx2!

@Acinonyx2 and @Vinorosso74 - wishing you all the best for surgery tomorrow.

@TopOfTheCliff - my parents are a similar age - I feel your pain but have no advice to offer. Mine just get more and more demanding and indignant as time goes on.

@KentishMama - you sound like you’ve got to a really good place. I hope to get there too.

@ChickandLamb - I’ve had 2 friends who were diagnosed when they had children under 10. The parents kept to the facts in simple terms and the kids coped really well and took it all in their stride. School can be a great source of support too. I’m trying to keep routines as normal as possible. I hope you’re doing ok.

@AlbertCampion some people are already clearly seeing me as being 'done' once this surgery is over which makes me want to bite them. There's radiotherapy - and 10 months of chemo-lite being back in the chemo suite every 3 weeks infusing through my port. As long as I'm doing that I don't think I can feel done.

On lymph nodes. I had 4 abnormal on my first MRI - but one I could feel a lump in any case and it had already been biopsied and found positive. They were all clear on my second and third MRI and I might have had just a biopsy done tomorrow except that one of the original abnormal nodes on the first scan was level 2 not just level 1 - so my surgeon felt we need to do a complete clearance. I'm not crazy about having that done as that is the more troublesome part of the surgery but I see his point - he's being cautious. So I will also be waiting on the pathology to see if my nodes really are clear now or not. I won't be surprised if they are not but hope it's not extensive. My follow up treatment will be the same in any case.

I've managed to lose my pyjamas I don't see how this is even possible. They don't know if I'll be in overnight or not.

dh found my pjs mysteriously crumpled at the back of the wardrobe.

Acinonyx2 do we assume from this you usually sleep au naturel ?

Does anyone know how common having normal looking nodes on scans but then distant metastasis elsewhere is? It's this thought giving me the most worry. I wish I could switch my brain off.

@Acinonyx2 & @Vinorosso74 I will be thinking of you both tomorrow.

Thank you to all who have suggested brilliant ways of speaking to the children.

Hi all! I was first on these threads in 2013 when I was dxed with TNBC in both breasts, aged 36. Turned out I was brca2 positive. I had chemo, rads, double mastectomy and ovary removal.
Chose not to have reconstruction.
Back on as I've been having niggling ache around left ribs for a while, and finally phoned breast clinic today, have appointment on Tuesday.
I thought I'd come and join you lovely ladies for a bit as I wasn't planning to say anything to anyone except DH.

@weebarra Pull up a chair and make yourself comfy.

@Acinonyx2 and @Vinorosso74 Good luck both of you for tomorrow.

My lymph nodes were involved when I was diagnosed and I had an axial clearance two weeks ago which my surgeon said took him three times longer than it usually would. I am known for being an awkward bugger.

@thereisonlyoneofme you are correct - and I will find it very tough staying overnight in hospital in PJs.

@ChickandLamb you need to ask your oncologist about the odds given your specific cancer type/size/grade etc. It's generally uncommon compared to node-positive though - and this is a future risk, not something that is likely right now.

@weebarra hope this is a brief visit for old times sake only!

@MrsPnut you must be about to get your pathology back? And how is the arm after the clearance - any issues?

I have an appointment tomorrow so will ask the questions @Acinonyx2. I have the distinct impression my consultant doesn't look like too much questioning though.

@weebarra everything is crossed for you.

@Acinonyx2 Hopefully next week, seeing my surgeon next Thursday.
I took pj’s with me but was in my gown all night and get dressed in the morning. I put my pj’s on when I got home next day.
Arm is ok, armpit is numb and some swelling still in side of boob/armpit. I was walking around with a stegosaurus under my arm earlier to see if some heat releases the fluid.

Just had an Ooer!! moment. Got results back from my debulking op. Two tumours, one 25cm the other 10cm, and various other lumps apparently benign, which hadnt come up on the CT scan.Just shows they dont know whats in there until they dive in. Also a rare tumour on my appendix, trust me to be different. Waiting to see what happens next now.

Hope Fizzy is OK after her op Tuesday.

@thereisonlyoneofme That is an Oo-er moment indeed. I did say to my surgeon this morning when he popped into the wound clinic to look at how I am healing, that if anyone is going to be tricky - it'll be me.

I too hope Fizzy is OK, I'm sure she'll be back with us soon.

I have had my stitches out today and dressings off. I did tell the first surgical assistant that I wanted waterproof dressings if I needed any. I told her I would just change them at home if they weren't waterproof because I wasn't waiting any longer for a shower.

I've got waterproof dressings over the three sites where she has removed stitches today and I can shower from tomorrow. I think she understood me pretty well.

Fizzy said she would be out of contact while in hospital. Hopefully everything went really smoothly for her

Thinking of those having surgery this week and sending positive healing vibes.

Chick my DC's are 4 & 9 and I've kept the conversation simple. I actually could say v little at the time without crying so H did most of the talking. . I've explained I had a tumour in my tummy that will need lots of medicine that might make my feel unwell, will lose my hair etc & they were ok with it. Couple of family members had cancer and I explained it was the same kind of thing. I've not used the word cancer though as my 9 years old has a tendency to google and I didn't want him scaring himself. I will probably need to address that at some point but they are taking it in their stride the now. Neither like seeing me with my pump chemo attached though.

I have a question about chemo & diarrhoea (the joys). Have others suffered this horribly? I had unstoppable diarrhoea for few days that only responded to codeine, so I've basically been asleep as a result for three days. I feel this may prevent my next chemo and just wondered if others experienced this and if anything helped.

I guess we are about to start a new thread so I will sneak in quick before the end. I got away by train eventually! It's nice to be home.

Good luck @Acinonyx2 and @Vinorosso74 we will all be thinking of you.

@HauntedDishcloth to add to the lymph node debate I had a total axillary clearance of Tier 1 and 2 as I had a stonking 25mm tumour in the sentinel node but all 28 others were clear. I was worried about Lymphoedema but the surgeon was quite confident they could avoid it and it has all been fine just some nerve pain and numbness still.

@quinin with the chemo diarrhoea you need to take at least 8 loperamide 2mg a day in my experience. Then you get constipated and have to take laxatives !! Oh the many joys of treatment.

@thereisonlyoneofme I'm glad you got your results. It sounds quite positive, have they said what happens next?

See you all on the next thread. Best wishes to all awaiting results
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@quinin I've been taking a product called lepicol daily. My DH takes it for IBS. I get diarrhoea from my radiotherapy but constipation from my chemo. The lepicol has so far balanced the 2 out along with some loperamide.

Hi all. I’ve just given myself my 3rd day’s injection of Nivestim/Filgrastim. I felt ok with it yesterday but feel dizzy now. I don’t have any other side effects. Will this pass? Is it typical? Thanks