Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Worry I had a good friend with a child like that though he was actually much younger than DS but would do things like put sand over his head and open the bathroom door if he was on the toilet and laugh at him and used to fight other kids a lot. His Mum used to just go that's not nice and not do much. Though I suspect he's undiagnosed asd as well, he's been diagnosed with dyslexia now but he was a biter at school as well. I used to only go places were the kids could be separate. I think telling a parent their parenting is rubbish or their child isn't nice is never a discussion that will end well and can break friendships so I would be careful with it. But I am not at all sure I would go camping together unless you can always make sure he stays away as that's horrible for your DD. I would say something to the child though I think like don't hit my DD.

If you do speak with the Mum I would phrase it more like my child is very distressed by his behaviour rather than your child is out of control / you are useless at parenting. It may just be the age though that sounds quite extreme. It'll become more obvious as he gets older if SN is involved, seen it go both ways maybe 50-50. With my friend in the end I said I think its best if we don't do playdates as our kids don't seem to get on. It just wasn't fair on DS in the end and she seemed unable to change his behaviour.

@HerbalRefreshment I had a problem like this with my youngest child (4 kids - no chance of pfb). I ended up avoiding meeting my friend with her son.
You can tell the difference between kids being kids- and a situation you actually have to avoid

@WorryMcGee it's definitely not what little kids are usually like. I think in your place I'd be telling my friend that I want some child free meet-ups and arranging things that are just for the two of you. Cancel camping and use cancer as an excuse, eg you're sleeping badly and being in a tent sounds horrendous to you right now.

Good luck

I am counting down to surgery in a week. Lumpectomies plus node clearance. It feels like a rush trying to get everything done that I want to- get up to date with the laundry, get work stuff sorted and handed over, tackle the gardening, get my hospital bad packed, clean the whole house...

.... kind of like a really depressing version of "nesting" in late pregnancy!!

Just an update from me.

Colonoscopy this morning showed diverticula and colitis with no suspicious areas. The prep was the only unpleasant part - up all night and it gave me a banging headache. The actual procedure I had done with sedation and I can remember nothing at all about it!

I wanted to thank all those who provided support and advice here when I most needed it. You are all extraordinary people. ❤️

Oh that’s great @spiggydit!

That's great news @spiggydit - though obviously still unpleasant conditions. I'm pleased it's not worse news for you.

@AllotmentTime - can you try to cross some of those things off your list without actually doing them? I had my surgery in September, and a lot of autumn gardening didn't happen as a result. Some things are a mess in consequence but I have lowered my standards and am trying to focus on the fact that it's still a green, calm space, in spite of the mess.

@WorryMcGee - that's a tricky situation, and agree with others that criticising her parenting won't end well. But you have to protect you and your DD from the stress and potential actual harm from her DC. Can you use the technique of framing everything you say as an 'I' statement, then it's about how you feel and how it affects you? (This is a suggestion a work colleague who also worked as a counsellor gave me years ago for dealing with conflict in work situations and I've found it useful.) So you don't say 'your son is out of control and hurts my DD deliberately' (even if that's true). You say something like 'I am tired and vulnerable at the moment, and I find it hard when my DD gets upset. I know she gets upset when x happens. Can we try to find a way to avoid that happening?' etc. But you could just say that you don't think it will work to go - you have a perfect, genuine excuse.

Great news @spiggydit . I hope the other conditions can be bought under control effectively.

Had clinic this morning. The consultant didn't know about my blood clot - fair enough, it only happened Friday but was a little bit taken aback by this, maybe unfairly so.

Asked if it would impact brachytherapy and she said it might be an issue as I'm on the anticoagulants so would need to stop them for the epidural and whether that was safe etc but she didn't really know and it sounded like I knew more about it than she did (in her words!). She's going to have a chat with the anaesthetist and see and if not it's going to be ten additional external radiotherapies instead.

Any other questions about anything I should/shouldn't be doing wrt the blood clot were pretty vague.

I'm a bit upset. Brachytherapy is apparently the gold standard treatment for cervical and I really wanted to have it - if I absolutely can't medically that's fair enough but she just seemed so blasé about it and I just wanted to shout 'its my bloody life at stake here!'. Probably being melodramatic but it's really rattled me and I've lost a bit of faith in my treatment.

@spiggydit I am cheering here! Not nice to have diverticula but hooray it’s not cancer!
@WorryMcGee usually I would say a two year old is too young to be deliberately evil and it’s a parenting fail. Of course this child may be a tiny psychopath but it’s more likely he hasn’t got proper boundaries and isn’t being taught kindness. I’d be withdrawing my child from the situation sadly. You can’t do much without losing a friend. Having said that when my DS was 5ish his friend was a little shit who scribbled on my walls and wrote swear words on the kitchen whiteboard. His mother never knew I read him the riot act one day and he never did it again. He’s a lovely young man now and she’s still my friend.
@ClashCityRocker its so frustrating for you. Could you get your specialist nurse on board?
I am sooo tired today. These chemo drugs are like a premed drug making me drowsy. I’ve managed to fall asleep in yoga and do one one load of washing and that’s all today. Bleagh
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Thank you so so much everyone who replied with advice and experience! I definitely need to say something and I’m going to use the “I” statement thing. This thread really is a great place ❤️

@TopOfTheCliff quick question about Cape - how is it distributed? Does it come in a ton of blister packs or bottles or what? I didn't realise this was going to be pill-o-rama until consultant mentioned it. Do I need to bring a carrier bag with me on Monday when I start?

@HerbalRefreshment I collect a bag of pills each time. 140 tablets in blister packs, and a box of loperamide and domperidone each time. A small carrier will suffice.

I'm struggling today 😢 I'm filling up with fluid again & worrying that I'll be really uncomfortable & not able to go with dd1 to her prom hair and nail appointments, and then to see all the kids dressed up for the evening. Us mums are close friends & they've all rallied to help & make sure someone will take me comfortably in their car & I know they'll make sure I'm there if I can be, or pick up the slack if I'm not. It's just getting to me.

The BCN I met a couple of weeks ago, told me last Weds to ring her if it needs draining again, and she'll liase with my consultant to organise it. So, I don't know whether to ring now (well, it'd be tomorrow now, bearing in mind last week's took place a week after speaking to my consultant) or wait a little while so it might 'last' for that week.

@WorryMcGee really sorry - I posted and tagged the wrong person

i agree with others - I had a problem like this with my youngest child (4 kids - no chance of pfb). I ended up avoiding meeting my friend with her son.
You can tell the difference between kids being kids- and a situation you actually have to avoid

Great news @spiggydit

Really good news @spiggydit hope they can sort out those other conditions for you!

@WorryMcGee it doesn’t sound like you are being precious to me - my younger one is quite feral (!) but I would never let him behave like that. He knows when he has been naughty, I think they know quite early on what isn’t kind to other kids. I think the statement that @dotty2 gave was a good one, I would try that and I guess if nothing changes you might have to keep a bit of a distance until the kids are a bit older?

Ive been watching Sarah Beany. I told myself I wouldnt.

@spiggydit fabulous news, so pleased for you!

@lucysmam I've been where you are trying to second guess how much I will 'fill up' in advance. It's awful, just so uncomfortable and of course you want to be well enough to be there for your DD. Could you ring your BCN tomorrow and ask her to book you in for a date around the optimum time for you? When I spoke to my CNS, she spoke to Interventional Radiology and then came back to me and said 'they can see you on xxxx' which was a week or so away as they have to keep appointments for those coming in from A&E. For me, I went to A&E 3 times due to massive ascites but they won't drain without an admission and I was there for a couple of nights each time. Not ideal, but if you can't get an appointment to suit you, this might be an option.

@EachandEveryone I watched too. It's left me feeling v thoughtful and a bit tearful but I'm glad I did. There were quite a few parallels with my life (unfortunately not the stunningly massive countryside estate though) and her comments about when she was first diagnosed and not wanting to tell anyone and just get through it on her own were exactly how I've felt. It made me think about how maybe I should be a bit more open with those around me. It also gave me a bit more insight into how my husband may have been feeling (and maybe helps explains some of his not so brilliant reactions).

It also made me wonder whether I should cut my hair off. I'm 8 days post first chemo and it's still hanging in there but my scalp is tingling and I think it's only a matter of time before it sheds. I saw a wig lady yesterday who seemed to take unnecessary pleasure in telling me that it was unlikely that I was going to die but my hair definitely would (honestly, it's just as well I'm in a pretty good place mentally atm). And then tried to sell me a wig for fifteen hundred quid...it was a v nice one but still!!

I have yet another question after advice from someone yesterday. Do you need to be careful around others when you have radiotherapy? It was suggested that I won’t be able to cuddle DD…is this correct?
She’s wanted to sleep in my bed recently, she’s needed a lot of reassurance.

@LemonDrizzle10 I wasn't told that at all, still gave my boy lots of cuddles. Didn't keep away and he was in my bed more often than not during that time. I acted no different. I had pelvic radiation, was 25 daily sessions, plus internal, so was probably quite radioactive.

I did set some sort of security alert off at Heathrow though!

@Atreus I'm four weeks in and my hair's hanging on, so maybe don't rush to buzz cut it. Mine's thinning very slowly rather than coming out in chunks & I was going to cut it short, but didn't get round to it. I'll get the girls dad to take it off when it looks patchy to me.

@Fantasea she's ringing me tomorrow so we'll have a chat then. So far I've avoided getting back to as big as it was, and it seems to have remained a steady size this week, so maybe mid-end of next week would be ok. Friday would interfere with chemo though.

@JlL2013 thanks. What happened at Heathrow!!??

@Atreus my hair thinned after 3 weeks and I thought it’d all fall out - rushed off to pick up wig..which is still in the box.

I almost forgot to ask - did/do any of you have really dry skin on paclitaxel? I seem to be really dry in places even though I'm moisturising.

I also seem to be tanning rather quickly from just pegging washing out & bringing it in the past few days - my shoulders, arms, and tops of my feet are really brown.