Tamoxigang thread 49 when Sumer is y cumen in and we get out the Pimms

[Lilymaid]

New thread!

[RahRahRasputin]

Ooh wow lily when are you off to Borneo?

[Handbagsatdawn]

Ok I also think I may have uploaded a photo, but not sure. Someone check it for me!? Also going to bed, nighty night.

[MomOfTwoGirls2]

Posted my hair photo last week. I'm getting used to it, both 'style' and colour. But meanwhile, i am quite happy to have other people admire it. Though someone told me yesterday that it took 20 years off me. Wonder how old she thinks i am !!

[MomOfTwoGirls2]

How can I view profiles, is it possible on my phone?
I thought I just needed to click on posters name..
I want to checkout those hairdos !

[MaryAnnSingleton]

thank you rah rah and waves to lilymaid - am slotting swimming in between recovering from a broken foot and my next chemo which will be docetaxol and am pretty sure I shan't be swimming then,which makes me very sad ! Borneo sounds very exciting !
really no need to be so cross, I wasn't judging or anything,simply asking what was happening with the mets, surely your onc. is seeing you regularly to monitor ?

[Shootingatpigeons]

really odd response, MAS is a gentle soul with a secondary diagnosis who has on this thread helped support many people cope with their diagnosis both primary and secondary over a long long time. There is no better guide for coping in the moment but a mets diagnosis is what it is, you can chose to cope how you will but is a bit unfair to someone else who has coped with it to first minimise it's impact and then suggest they criticised you for the way you are coping when all they did was wonder from your response if it had happened in the first place?

And you have had a long rough treatment, almost unbelievable what you have gone through for the rest of us who have been through it ourselves. I absolutely understand that we all cope in our own way and head in the sand is a perfectly good coping strategy but I do hope you can reassure all those who find themselves in this place, whether with a primary or secondary diagnosis, that you were really really unlucky with your treatment and outcome and that now your doctors are really closely monitoring you for both the mets and the brain bleed and looking after you. If not there are a few of us in London who will be only too happy to help you make sure they do / help you move to a different hospital / consultant. I am just concerned that if I was newly diagnosed your story would be scaring me silly and yet after 12 years of my own experience and knowing so many people who have been through it, the vast majority of us even those of us who were told we had lousy odds have had brilliant care and thankfully were able to move on and have every reason to suppose we will die of some other b*** xx

[MomOfTwoGirls2]

And...
Only one week of rads left! Wed next will be my last boost.
Glad to say skin is still holding up. It is red in a few spots and a little itchy at times, but it hasn't broken.

Along with the mooGoo , I'm applying cold calamine tea. My radiologist is really big on the calming effects of calamine tea on the treated area. Anybody else try that?

I also tried the MooGoo on my scalp. Psoriasis came back with my hair. The MooGoo gives really good relief from the itching. Better than any other cream I've tried.
I'm going to buy the shampoo and try that too.

[Handbagsatdawn]

Mom I'm also rather addicted to MooGoo products - am about to slap their anti-ageing face cream on, will only use their deodorant now (and dd1 is also using as I'm not letting her near anything containing aluminium), and their blemish cleansing moisturiser has worked wonders on her pubescent skin.

Right really am going to bed now.....

[RahRahRasputin]

Mom yay for finally being nearly finished! I hope your skin continues to hold up, glad that the cream and tea seem to be working :)

I'm sure on my phone I just click on names to see profiles but that's mobile site, I don't know about the app. I remember your photo from the other day, very nice, at the age comment, by my estimation 20 years ago you would've just been celebrating your 1st birthday?

handbags I think you need to make your profile public so people can see the photo :)

really, shooting's post has reminded me, when you feel up to it, it would be worth looking into the complaints procedure for the various mishaps during your treatment. If you're on the NHS, the hospital should have PALS who can guide you through the complaints procedure. I know it's not much fun reliving bad experiences but it will hopefully mean that mistakes won't be repeated in future, and that they will be extra careful in your future care. I've had something vaguely similar as having to complain about a GP who misdiagnosed my cancer through laziness/carefulness. It wasn't a traumatic experience in itself but the possible impact on my prognosis and my treatment is frustrating and it's taken me quite a while to work up the emotional strength to complain, also wanted to wait until I'd moved away from the surgery, which I'm doing in the next few weeks. I won't ramble on about it but I do know it's not as simple as just complaining, but it is well worth it given what has happened to you.

I will say, to reassure anyone newly diagnosed, apart from that one GP mishap, my treatment has been fabulous. I tell anyone who listens or runs away with their fingers in their ears how grateful I am for the care I received. I've always been passionate in my support of the NHS, but the cancer has made it more personal. My care, and that of everyone I have met during, has been outstanding. Everyone, apart from my wanker of an oncologist, has treated me with such kindness and tenderness, and dignity. Parts of my treatment left me feeling disgusted with my body and it was the nurses and doctors and HCAs who made me feel like I was still a person. At times it moves me to tears how so many people went above and beyond, not just for me but for every patient. If I were a millionaire, and was in better health, I'd apply to train as a doctor and spend my life trying to repay that.

Anyway, I shall blame my rambliness on the combination of chemo brain, tiredness and having just taken this evening's medication. I can't even remember quite what my original point was!

I hope everyone has had a good evening, night night

[reallyreallyworried]

MAS I apologise for snapping at you in my response. Yesterday was not a good day. I just want to go back to being me before all this crap started! You saying what you did was a slap in the face, reality check!! A reminder that this isn't really over! But that doesn't stop me wishing it was! Or stop me wanting to try and celebrate how far I have come. But I do apologise as I shouldn't of taken my bad mood out on you.

RahRah I've arranged to go and speak to PALS next week. I was already in touch with the lady in charge, after the issues with the PICC line. She's really nice so hopefully I can talk things through and hopefully stop it happening to anyone else.

shooting I am seeing my Oncologist in a couple of weeks, and then will continue to be monitored closely! Have a scan on the 5th to check on my liver to see if there has been any change! I have considered changing hospitals! But having the hospital close to work and feeling I know my way round, and whose who, are all positives in my eyes.

Hope that's cleared things up! I really didn't mean to hurt or upset anyone. Sorry

[MaryAnnSingleton]

really apology accepted ! it is a tricky thing,carrying on as normal yet with the unknown still hanging about - but the important thing is to get the most out of every day and do stuff that makes you happy !

[weebarra]

really, I'm very glad you are going to speak to PALS.
I am still waiting for a response from my GP surgery to my complaint. I saw four docs about my lump and they all dismissed it as a blocked duct. My friend is a GP, she wasn't happy with that, so she suggested I go and see the bfing support midwife - who took one look and got me into the breast clinic the next day, when I was diagnosed with Grade 3 cancer in both breasts. So, I am a bit cross with the GPs.
Still in bed - DD decided to celebrate her 9 month bday by being up all night, and DH couldn't settle her.

[Shootingatpigeons]

Really Glad to hear that they are keeping a close eye. We all grieve for our old lives and expectations but honestly you will be able to be happy in your new normal, nowadays I worry more about Cancer in terms of the way it is affecting friends, there is just too much of the b about , than I do for myself. As Mas* says it is about making the most of what you have got.

And if you do want to switch hospitals do PM me as I know people with brilliant personal experience of Guy's, the Marsden's South Ken site where I and my BC friends were treated, Charring Cross, UCL and Homerton. We are lucky to have so many brilliant hospitals so close and doctors are very used to people switching, getting second opinions etc. my Dr Geek positively encouraged second opinions, and there is one wonky Oncy at the Marsden (grumpy and depressed wonky as opposed to wonky in terms of medical expertise, seems to be a bit of a syndrome, I suppose it is understandable) who regularly gets kicked into touch by women who can do without being told how bad it is / told off for having side effects

[kitkat1967]

Golly - so much to catch up with from everyone so I'll just keep it brief and say all the short hair cuts look fab (I love mine - although it's not quite so short now) and good luck to those of you getting test results today and tomorrow.

[smee]

I can't keep up, but just wanted to post that I'm another who had utterly brilliant treatment. I thought I'd just say that to reassure any newbies, as I've honestly never heard of anyone being as unlucky as Really.

Really, if you've the energy you should think about complaining. You've had such a run of things going wrong. I know lots and lots of women who've been through BC treatment and I can't think of anyone who's had even half the problems that you've had.

[weebarra]

Absolutely smee. Once I was eventually diagnosed, my care has been superb. I can't get over how compassionate people are. Really's care has not been superb (and you have been a star throughout, Really!)

[kitkat1967]

Have posted my new hair 'do' (as I love it so much) - to join in with the rest of the short hair gang.
Hopefully it will reassure anyone who is losing hair at the moment - this is 5 1/2 months post last chemo and has recently been cut (and coloured) as it was growing a bit wild!!

[reallyreallyworried]

Thanks for understanding and accepting my apology xx

I will discuss making a formal complaint, when I see the PALS lady next week. Right now I'm not sure if I can deal with the hassle! I suppose part of me is thinking that maybe all the cock ups have been down to me Maybe I should of complained, or said something earlier?! Maybe I was expecting too much? Maybe I was just being difficult?

I have major confidence and trust issues, which is why I am now doubting myself. I read all your experiences and realise that you all seemed to breeze through your treatments, trouble free! So maybe it is down to me?!

Anyway right now I just want to try and get some sort of life back, for a bit. Although even that I am struggling with. I don't really know what I want out of life now! But yes I agree I need to do things each day, that make me happy!

[ConsiderablyBiggerBuns]

Gosh, this has been a busy thread over the last couple of days.
wee just wanted to respond about driving after BMX. I drove, out of necessity (DH had man flu which is obviously more debilitating that having both breasts chopped off) after 10 days - short journeys. I did pop my drain wound open but apparently this is quite common and no big deal. It was quite uncomfortable but I told my BCN and she said it was probably good physio. My SNC was on the left hand side, I think this makes a difference as RHS where I had only had the mx was absolutely fine.
speedy great news about shrinkage - hoping the same for really when she gets her liver checked out.
How did it go with your DD, mrs? It is such a personal thing about how they will react. My 2 DDs (13&15) responded completely differently but both have been a source of strength to me in their different ways, it must have been so difficult keeping it from her, but I think we all would have done the same thing. That was the hardest time for me, the 10 days between dx and more information when I kept it from the girls.
Glad to hear some of the rest of you are feeling a bit chippier, eating and flower show visits - everything takes on more significance, doesn't it?
Thanks for the hair pics - you are all lovely. It's going to be the hardest thing for me, I have had long hair most of my life. My DM, ever tactless, said she was really looking forward to seeing me with short hair - so really glad she will be satisfied, then!
I have my very first inc appt tomorrow. Will be good to get some dates in the diary, fed up if being in limbo now.

[Shootingatpigeons]

really We most certainly did not breeze through our treatments trouble free, emotionally or medically, our stories are all on the thread somewhere. I have heard some people do but I have never met one, there is no getting away from the fact that getting through a Cancer diagnosis and treatment is tough, and the fact that we have come on here to share experiences and coping strategies and hopefully help people who come after to find hope and a way through is testament to that.

However we did get the support we needed in well run hospitals that did not mix up scans, have incompetent staff, machines that bits fall off etc. I am sorry I only dip into the thread now and then so I don't know the full extent of it but what I have read of your experiences have shocked me precisely because I am confident that that would not happen in any of the hospitals I and my friends were treated in.

Might it help to look at this as a way of helping the hospital to understand where it is going wrong and match best practise in other hospitals. Good organisations value every customer and want to know where they are going wrong. An effective complaint lists the facts and then highlights how your experience made you feel. Perhaps it would help to sit down and list all the facts and then add how it made / makes you feel to each event. It might be cathartic and help you see it objectively.

[wineoclocktimeye]

Wow, it has been busy whilst I was away!

I'm now boobless!, thank you for all your best wishes beforehand. Actually feeling really good, sore rather than in pain and only had paracetamol (bit disappointed as I was looking forward to the morphine I'd had after my c-sections!)

I have 3 drains in which is a pain when trying to negotiate my way to the loo and the highly attractive (and very hot) anti blood clot socks! I'm surprised how small the plasters and therefore I guess the wounds are, not sure what I was expecting but more than this I suppose. Seem to have good movement in my arms, keep forgetting not to pick things up though!

Hope your daughter is ok mrs and everyone's appointments go well.

will have a look at the hair pics and maybe be brave enough to post one.

Have a good day everyone.

[Lilymaid]

I have not been brave enough to post a picture (though my hair is similar in length to Foofoo and KitKat's). DS2 thinks I now look "normal" without my wig. Anyway, I should be getting a supply of Daniel Field hair dye in the post today, so I can hide some of the 30% white hair! I'm going away on holiday next week and hope that I have the courage to go off without my wig!

[Handbagsatdawn]

Lilymaid I bet you look great! Going wigless for the first time is daunting as you imagine that everyone is staring at you. Trust me, they are not, most people don't give a damn, and you'll feel very liberated, and an awful lot cooler once you've done it a couple of times xxx

[Updatingmywill]

I love all the short hair cuts and I'm so looking forward to having hair again! Only 2 weeks to my last Tax so I'm estimating I should have hair by September.

[MyNewNormal]

Loving the short haircuts too. Tres chic.

My neutrophils haven't recovered; in fact, they've gone down since Monday. Chemo postponed to next week at 20% reduced dosage. I totally understand the postponement but am so terribly tonight.