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**Tamoxifen** the 30th thread !

996 replies

MaryAnnSingleton · 26/10/2012 15:32

Am wheeling the trolley over....

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Copthallresident · 18/11/2012 14:18

MAS How horrible to still be feeling poisoned. No need to apologise. We've all been there! I remember an irresistible urge to share the full gory painful details of my constipation with the Mums at the school gate who were telling me how "brave" I was during chemo. Perhaps think of the diarrhoea as a fast lane to getting it out of your system. Glad you are getting some work done though. I so agree with the importance of keeping things normal. In fact the whole experience does make normal feel special, hooray for the mundane and boring!! Sadly for my DD who at 16 has long stopped enjoying sharing a bus with all the snotty 11 year olds and inevitable mad person, I have never recovered the joy I took in doing the school run during chemo! I also have a policy of severely rationing bathroom cleaning activities, being a strange mixture of slattern and OCD so that I can tolerate mess but once I start cleaning the bathroom it can very easily end up with me cleaning corners with a toothbrush and emptying the Lakeland shelves of all those niche cleaning products for people who clean corners with toothbrushes.

smee Angry at your GP. One thing that I hated about Cancerland was people assuming how you feel. I feel a bit that way about them wittering on about reconstruction every time I see them.

KK and gigs Looks like lots of us have miscarriage stories, I did all my infertility, miscarrying and anti natal at the Old Queen Charlottes hospital in Hammersmith during it's dying days, it was a great Women's / Maternity Hospital but they only had one surgical gynae ward for all the problematically pregnant, infertile, ectopic, incontinent, prolapsed and miscarried, it was a manifestation of the potential misery of being a woman (though without the Cancer). They didn't even have the sense to try and strategically arrange the beds. Most traumatic was being in a bed next to a devastated woman who had just had to have a huge operation for a horrific ectopic pregnancy with a much wanted child, and facing the possibility of being infertile as a result whilst I was in having my cervix sown up to keep my pregnancy, glowing with joy I had got this far this time. I had to ignore the doctors and get up to see No 1 DD in the day room because that would have really been rubbing it in. Still after what I saw there I have ALWAYS done my pelvic floor exercises.....

SR We had a family outing to Skyfall, we all loved it, indeed as we are off to HK at Christmas (we lived there very happily, so it is a fix ) DH has booked a side trip to Macau though I feel certain that casino was actually in a pond in Pinewood...

sandripples · 18/11/2012 19:39

Rare for me these days but I do have a cancer drug question - I know few (if any ) of you are on Arimidex - but if anyone is, or perhaps on Tamoxifen, have you experienced any hair thinning? I was so pleased when mine grew back after chemo that generally I take the line that I'm lucky to have what I've got, but I do think its getting steadily thinner on the drugs. I keep it very short (Judi Dench look!! ) but worry a bit in case it will continue to get worse.

On a more positive note, I did a lovely walk today - the Ramblers did a 5 mile walk starting about 300 yards from my house, so it was great - nice sunny day here.

AND I did eventually pack a lot of Christmas presents, AND I've defrosted the freezer and thrown out a load of old food from my pantry to make room for Christmas (and ok I admit it I did see a weevil in a bag of flour which spurred me on! Only one...) AND I watched the Scandinavian jumper-wearing programme last night. Busy w/e really!

smee · 18/11/2012 20:51

SR, I haven't noticed the hair thing. Must be mighty annoying though. Mine's taken nearly two years to lose it's chemo curl. Shock

MAS, hope it's all calmed down a bit by now. Remember to drink lots won't you? I know you know that, but feeling dehydrated's awful. Sad

Envy at Copthall's trip. Sounds like a rather fantastic Christmas for you then. Not to mention warm...

Party was fun. Overly trendy, but it was dark, so I didn't frump out too much. Grin Spent today pootling around on my bike. DS and DH busy, so I cycled to shops to buy a birthday present for my niece. Bought Christmas presents for relatives in the US too, but forgot wrapping paper. D'oh!

MaryAnnSingleton · 18/11/2012 22:54

I didn't have any hair thinning on tamoxifen, but that's prob not helpful for you SR
smee you aren't frumpy - haven't been to a party in ages,though invited to one up the road soon- nice neighbours with fab extension at back and in attic- quite envious. We went to a party there earlier this year which was fab,so am quite llooking forward to it.
I feel dehydrated all the time- probably why I crave fruit ! My lips are dry and my nose bleeds whenever I blow it (not massively flowing blood but it's in my tissue)
My editor Gaby,who is on fb has obviously seen bits of the current work I've posted and it seems that I've done unnecessarily detailed drawings (vignettes arer required really but I can help but elaborate) she was worried I was doing too much,more work than they're paying me for,so am to just do occassional illustrations for jokes and little filling in illustrations to dot around.

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Turningupsidedown · 18/11/2012 23:12

Hello I have been posting on MrsShrek's thread about DH with cancer and I noticed that some you posted on there at one point saying this is a thread where people with cancer are supporing each other and I wondered if I could ask you all a question.

My DH has been diagnosed with a soft tissue sarcoma which is on his shin. He is having this re-operated on this week as they did not get it all during a previous operation a couple of months ago. We have just been told at the pre-op assessment that this will now involve a 6-8 hour operation to remove the rest of the tumour and they will then do a reconstruction with a free flap taken from his thigh. They have said he will be in high dependency for the first 3 days and in hospital for 5 to 10 days. I was wondering whether anyone on here had any experience of this type of surgery? We have information on what is likely to happen in terms of surgery and nursing care but it is hard to think of what he will feel like or need IYSWIM. The last time if only involved a skin graft so he was only there overnight, this has suddenly got much more major sounding and I am wobbling a bit to be honest I can't seem to get my head around what needs organising.

I am trying to figure out what sort of things to pack, and to try to plan my time so I can be there when he needs me most. I am not sure whether he will want me there most in the first few days when he will be getting a lot of attention from nursing staff but will probably feel rotten, or whether more when he is feeling a bit better. I am trying to balance it all out with being around for our DD's as well. My DP's are coming to help look after them, but the hospital is a 3-hour round trip from ours, so I can't just nip back and forth. I can get a room in the on-site hotel when I want it.

I know to some extent it is all a bit unpredictable but if anyone has any experience of similar, can you tell me how you felt and what support you wanted? Any tips on things you wished you had in hospital or that you found really helpful?

Thanks Smile

MaryAnnSingleton · 18/11/2012 23:46

So sorry to hear this and loads of good thoughts to your dh - hope we can support you through this . Gigondas is the person to talk to about sarcoma - am sure she will have lots of good advice Smile

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smee · 18/11/2012 23:52

Hello Turning. Yes, Gig knows about sarcoma. Am sure she'll be back tomorrow. Sorry your husband's having to go through it all. If we can help at all, even just in helping you through, natter away. We all get how scary it is.

MAS, the dehydration sounds horrendous. I do remember never being able to drink enough and my hands were bleeding at one point as they were so dry. Horrid for you as an artist and I'm sure yours are far, far worse than anything I went through. Really hope this week sees you climb out of it quickly. xx

Turningupsidedown · 19/11/2012 00:15

Thank you both for replying Smile and for support. Will check back tomorrow Sorry you are all going through it too.

Gigondas · 19/11/2012 07:19

mas sore

turning sorry to hear about your dh but they are very good about doing surgery for sarcoma so take comfort from that.

I was in for about a week I think when I had my tumour removed. main issues were food - can you take bits in for your dh? I would imagine soup (get a food flask), homemade sandwiches and whatever snacks ( fruit,crisps, chocolates) he wants plus soft drinks.another idea to take is Ribena or some kind of squash plus maybe fizzy water as its important to keep hydrated.

Something to keep him entertained (although may well be quite groggy due to anaesthetic and painkillers so may just want to dose) is good. If you have an iPad or kindle could load that up with mags, papers, audiobooks, films or tv . I also got a digital radio with headphones as sometimes I just liked to sleep or rest with radio on.

Also need to do the bossy partner bit in way it's advised for mums when just out of hospital. When I was in hospital for chemo , I loved visitors but some days I had loads and some stayed for ages (thinking it was kind which it was but was tiring). Try to ration people seeing him (ideally suggest that they do it when he is home as probably going to be too tired) and for no more than half an hour at a time.

Waves to all - tired here as mini gig up early .

Gigondas · 19/11/2012 07:21

Sorry lost bit of post to mas - boo about sore nose. Can I suggest aloe Vera juice to help your tummy? It seemed to help my system as I suffered from either diarrhoea or constipation at different points during chemo but aloe Vera (just a spoon full with meals) did ease things.

MaryAnnSingleton · 19/11/2012 07:44

thanks gig -good advice.
I naively expect the side effects to disappear during week off.

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Gigondas · 19/11/2012 07:46

I found my tummy was worse in week or so after chemo then resettled.

Have you tried straw to sip water constantly? Somehow that helped me. Also aloe Vera mouthwash was great as am sure helped keep mouth ulcers at bay.

MaryAnnSingleton · 19/11/2012 08:06

I should be drinking more water I know- my own fault.

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Gigondas · 19/11/2012 08:15

Easier said than done though

topsyturner · 19/11/2012 08:24

Morning All

Welcome to Turning and sorry you are feeling crappy Mas

Sorry to post and run , got a really bad tummy bug . Been up all night .
Just waving DD off to school then I'm going back to bed .

Was meant to be meeting Gracie for coffee today , but the last thing she needs is my bug !
Have texted to tell her but no reply yet , so just incase you are about on her Gracie , I'm really sorry !!!

Gigondas · 19/11/2012 08:29

Oh poor you topsy - dh had something like this at the end of last week. Apparently lots of beer at rugby was the cure in case you want to follow that tip Hmm.

sandripples · 19/11/2012 08:40

Turning- I did not have a big op but was in hospital for 3 small ops at various times and stayed for a max of 4 nights.

Stuff to listen to -definitely. Although my hosp had an individual TV/radio/pc which swung down over the bed and I loved that - was lucky as I'm a tennis fan and it was the Oz Open!

Spare PJs for a daily change as they get sweaty/marked quickly due to the wound and just being in bed so much.

All that Gig said.

Fruit.

Some change in case there's a machine that needs it.

Advice to visitors re parking which can be a nightmare.

Washbag and light dressing gown for modesty when he's able to get up for the loo (in case can't wear PJ trousers?)
Good luck - One step at a time. Perhaps you could ask the visitors to check (briefly) with you in case you've forgotten anything. 3 hours is a long trip.

topsyturner · 19/11/2012 08:42

Envy (for sick not envy !) Gigs !!!

MaryAnnSingleton · 19/11/2012 10:17

oh poor topsy - huge sympathies- keep snuggly and hydrated (hark at me !)

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smee · 19/11/2012 10:31

Topsy, hope you rise from the pit again soon. Who gave it to you?? Hope DC aren't going to get it too.

MAS, v.hard to keep drinking. Have you tried a straw?? Not sure why that helps, but it does seem to.

Turning, taste dependent, but download lots of R4 programmes like Desert Island Discs or whatever might distract him. Very useful for the middle of the night to block out neighbour's snores.. Pack him some ear plugs too. Small pack of non scented baby wipes is a good idea too, as he'll probably be stuck in bed. Tiny hand fan if he's the sort who gets hot? Throat sweets in case he has a sore throat after op. (They often put tubes down.)

MaryAnnSingleton · 19/11/2012 10:41

I love straws -we have loads as I have always thought drinking through a straw would protect T's teeth (fruit juice mainly) I still put one in his drinks Grin
I am quite obsessed by freshly squeezed orange juice and chocolate soya milk (I realise that soya not a terribly good idea but don't drink excessive amounts) And green tea is a favourite...

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Gigondas · 19/11/2012 10:43

Green tea is good as lots of antioxidants but caffeine can be dehydrating in it so maybe have it with water.

Blush just been out for massage only to get there and find my appointment is this afternoon not this Mornjng.

smee · 19/11/2012 11:07

Freshly squeezed orange juice is my favourite too. Smile We have lots of straws too. Got a lovely multicoloured pack from Ikea a while back. Purples and greens. Smile

Is it wrong of me to have just eaten a lindt Father Christmas..? Grin

Turningupsidedown · 19/11/2012 11:27

Hello, just popping on quickly to say thank you lovely people for all your replies. I am at work and not supposed to be on here so will have a proper look later. Smile Thanks

MaryAnnSingleton · 19/11/2012 11:32

see you later turning !
Bah gig Smile
I think we can allow a Lindt father Christmas smee - have bought one of the bears with a red heart charm for little girl next door Smile

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