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TAMOXIFEN -the third thread ***

740 replies

MaryAnnSingleton · 26/02/2010 10:40

here we are- will put a link on the old thread.

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KurriKurri · 04/04/2010 14:53

Ebbie, here are the helplines:

Breast Cancer Care - 0808 800 6000

Macmillan - 0808 808 00 00

this link tells you Macmillan support centres in your area where you could talk to someone face to face if you prefer. (just put in your town/ post code and a list comes up. Click on name of centre - tells you what services they offer.) may be of some help to you

KurriKurri · 04/04/2010 15:00

Hello SR -xposted with you, glad your not feeling too yukky, and are having a nice Easter. I have discovered if you drop a jar of marmite on the floor - it shatters into hundreds of microscopic bits of glass covered in marmite. Luckily there was a Jack Russell nearby to bark loudly and try to dance in the broken glass supervise the cleaning up

Pennies · 04/04/2010 15:10

Happy Easter, all!

Struggling a bit after chemo no.3. I feel very tired and annoyingly I've caught another cold. It makes me very anxious. I'm keeping a close eye on my temperature and trying to rest.

RWU - hope you're feeling better and recovering after all that. I thouht about you this morning first thing when I woke up and all that you and your family have gone through just recently yet you always sounds so upbeat.

SR - I'm worried about you. You need to see a Dr about your obvious addiction to ! Does your DD know the one who cocked a snook at Paxman then? Good on him.

KK - that cakes sounds yummy. I'm trying to get enough energy to make a victoria sponge but I'm not sure i've got it in me!

Ebbie22 - I will of course come and help you go through your notes. I've had a look on the map and we're about the same distance from Harpenden. This week is a bit tricky for me because of me having just had chemo, but how about next Wednesday 14th April (I can only do the morning though). We could meet in Costa Coffee there by the Pizza Express if you know it?

MaryAnnSingleton · 04/04/2010 17:04

sorry to hear about cold Pennies - hope it doesn't make things worse.
KK - eek about marmite jar ! lovely salty treat for dog
SR - we love University Challenge here ! also do like Masterchef though voice over lady drives me mad - Dhruv to win I think !

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haggisdoodle · 04/04/2010 23:13

Hi all (and a belated welcome to the newcomers - hope you find this a supportive thread). I have been trying to follow all that has been going on lately but i think the chemo has fried my brain... RWU I hope you are feeling better now that you are home. KK - nurse sounds like a nightmare!
Pennies - had to laugh at your John Inman demonstrator - I had a young girl with pancake make up at my LGFB session. I never normally wear makeup so it scared the living daylights out of me. Did get some lovely perfume though but I confess the makeup has only been used once .
I am 3 weeks after the last of my chemo and I am so tired. I can barely move one foot in front of the other. Did anyone else feel like that? It is really beginning to annoy me now as I want to get out and about. The weather was lovely here today and I spent the afternoon watching the squirrels digging up my lawn. Also saw a woodpecker in the garden . We have been here 6 years and although I hear it that is only the second time that I have seen him.
Anyway, I'm about to shut down for the night. Hope everyone is well and coping with all the treatments.

haggisdoodle · 04/04/2010 23:16

Sorry Pennies,,I missed the last page of this thread and have only just read your post. Sorry you are having a rough time - hopefully the cold will go away soon - fingers crossed.

sandripples · 05/04/2010 01:16

Pennies - yes its the one on UNi. Challenge who apparantly put JP in his place although I missed that bit. Read about it in the paper though.
MAS - we love it too.

Yes I agree probably Druve for asterchef although I think the blond one could pip him as long as he doesn't attempt any more pigs ears! Druve is the son of a former colleague of mine - just discovered this today as well.

Can't sleep tonight - unlike me, so am up snacking and MNing. Will resist my addiction to any more Bunnies though oops.

RWU and Pennies and Haggis - do hope you all feel better soon. RWU - hope you are resting.

KK - re the Marmite.

Ebbie - I don't live near you at all, but hope the support offered by others will help yyou. Take heart and I hope you'll get some better information soon.

I am now supporting a very close friend who got a cancer diagnosis on Thursday. I am not sure if I mentioned this earlier. We used to share flats for 10 years and can scarcely beleive we're both having to deal with this at the same time. She doesn't live near me now but at least I can help a bit in the early stages, when it is all such a reeling shock. She has a type of non Hodgkins lymphoma and will know more on Friday after seeing oncologist.

MaryAnnSingleton · 05/04/2010 08:51

SR -am sure you'll be a huge support for your friend - rotten that she is going through this. Lalaa had me then a good friend of theirs and it does bring things back to you,not that they go away,but you kind of relive diagnosis etc.
V nice to see you haggis too.
Ds returns from his cousin's today -we left him there on Saturday after a very nice lunch (lalaa's house) -quite odd to be on our own,but nice !

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BurningBright · 05/04/2010 20:24

Hi Everyone. It's ages since I've been on. What with going back to work between surgery and chemo I haven't been online a lot lately. Hope everybody is doing OK. Wecome to all the new people - really sorry you've got reason to find yourselves here, but nice to meet you all, so to speak.

Just a quick update. Had my first chemo on Wednesday last week. It hit me very fast and very hard, but I'm coming back to feeling reasonably OK now. So one down, five to go.

MaryAnnSingleton · 05/04/2010 21:10

hi BB - lovely to see you and well done on getting the first chemo done

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sandripples · 05/04/2010 22:10

Yes well done BB on 1st chemo. I'm 2 down 6 to go myself. Seems a long haul.

Decided to try a bike ride today for 1st time since last summer. O heck! After a couple of hundred yards my legs were so tired! I continued for about 2 miles then left the bike at a bike shop 'for a service' and walked home! Still, it was nearly an hour's exercise. And I find the fresh air helpful.

ebbie22 · 06/04/2010 00:38

Thank you kurrikurri, for the numbers,have written them down and will hope to pop into see if i can talk to anyone at s.m.h tomorrow as am in aylesbury..
Hi Pennies,the children are on half term and wouldnt want them to listern or ear wig,and YOU should rest a little now,can you do the followering weds?

Hello to everyone xx

ebbie22 · 06/04/2010 00:43

Well done on everyone,starting and finishing your chemo,You are ALL so brave,kinda helps me to see what I may have to go thru,pls could you tell me your scary storys,how you felt and how long did it take you to realise that you were ill?Thank you xx

sandripples · 06/04/2010 08:38

Hi Ebbie,

My story is that a lump was detected via routine breast screening. A biopsy confirmed it was invasive in December. I had lumpectomy in January, and also was told the lymph nodes were affected (4/7 nodes from the sample). So I have started chemo, am having rest of lymph nodes removed next week, then will continue on chemo for total of 7 months, then radiotherapy and Tamoxifen thereafter for 5 years.

The shock after initial diagnosis, then the waiting for tests, scans and to get onto a treatment plan are the most diffiult bit IME. It helps (I think) if you don't research things too much as you can terrify yourself, try not to panic and take one step at a time, but gather freinds around you who will offer support even if it is simply a cup of coffee or a walk now and again.

I think I have also learned that this disease is not straightforwd - there are unexpected twists and turns eg an infection, or a delay in surgery, or the grade of your cancer might not be totally clear. I think you have to keep pushing forward one bit at a time, but accept that some things are not 100% clear.

For me, taking a regular walk helps keep me calm. Sounds simple and it is, but it works for me.I am also making more effort than I used to, to eat fresh food as much as poss. Little things help you feel more in control.
Hope this helps.

MaryAnnSingleton · 06/04/2010 08:58

Ebbie - my history...my bc was also discovered by breast screening -I was very scared about being recalled - my SIL had had an very agressive bc at only 33,HER2+ -and also another friend had been dx a year before through screening.This was end of last April -surgery in May (WLE and sentinel node biopsy) -fortunately the nodes were clear-2.4 cm idc with dcis. I have got off reltively lightly I know and my treatment has been rads and tamoxifen. Added complication is a long history of OCD and anxiety which I've managed to control more or less over recent years -I think my family and I are kind of get on with it people (I don't neccessarily think this is a good thing) so their attitude was to not make a fuss (though supported me very well)or wail and gnash teeth - this in turn makes me think I must just plough on as normal -good in some ways but I think I sit on a huge pile of unexpressed emotions going years back (my younger brother died of cancer aged 10 and we pretty much carried on as normal-lots of grief left buried-think this is the root of my OCD) Am hoping to hve grief therapy soon.

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Pennies · 06/04/2010 10:31

Ebbie22 - forgot about school hols! The week after is a bit of an unknown because I go onto a different chemo regimen the Friday before so i've no idea how that's going to affect me. Shall we say the Thursday though, so hopefully I might be more myself by then? That's the 22nd.

As to my story. Well I had found a lump just before Xmas and had it biopsied within the week and was told on 23rd December it was cancer. Christmas was tough, especially with 11 people in the house! I had a lumpectomy on 4th January which showed that it was a bit bigger than expected, but also there were 3 / 5 lymph nodes involved. Because my mammogram hadn't shown some of the stuff they found in my lumpectomy I decided to opt for a full mastectomy, because I can't face going through this again or having the fear of it hanging over me. So on 15th Feb I had that, and it showed that there were more cancerous bits in the affected breast, and also a further two nodes were affected (totalling 5 / 17 in the end). Mine is also an aggressive cancer which is HER2+, but apparently 60% of younger womens' cancers are. I'm only 37.

On 5th March, I started chemo. I have to have 8 rounds of it, every fortnight until June, then a month of radiotherapy and then Tamoxifen and a year of Herceptin treatment.

In emotional terms, I would say that personally the worst times were in the days immediately after finding the lump to diagnosis were the worst. I instinctively knew from the moment I found it what was wrong and I went to bits but once I had been told what it was I was OK for some reason. This maybe because i thought it was a reappearance of malignant skin cancer that I had years ago which is far less treatable than breast cancer so this seemed like a better option.

What I did hate was waking each morning and having a moment of peace before the realisation hit me, WHAM! each day it was like being told for the first time all over again. For some reason though that just disappeared after I had my lumpectomy and I have been at a certain level of acceptance with it ever since.

I have got myself counselling though to help me through it - Cognitive Behavioural Therapy. I paid for it myself though because it takes so long on the NHS and I just wanted to take some action now. It's taught me a lot but mainly what I've found most valuable is that I can't control what is happening to me but I can choose how I react to what is happening to me. So, I can choose to panic and get upset or I can choose to be calm and focused. It sometimes takes a huge effort but it had been incredibly helpful just looking at it in that light.

In terms of what you are experienceing now is a combination of fear and grief. You are scared of what is going on, what is to come and you're also grieving for the time before this nightmare hit. In a nutshell it's this:

Denial - I can?t have cancer; this isn't happening to me

Anger - Why me? I don't deserve to have this disease.

Bargaining - If I am good or if I give up x, then I'll be OK.

Depression - What is the point of carrying on?.

Acceptance - OK, I know I?ve got cancer but I can face it.

You will experience all of these emotions at different times to a greater or lesser extent. You'll go back to these emotions, having already gone through them before on this journey. They're all part of the process. I, for example, am no longer in denial, but I do find myself bargaining, being angry, feeling depressed and also being in total acceptance with it. But I also know that if my situation changes and I learn that I'm in for a harder slog than I'm hoping for then I'll be back to pretty much square one and I'll start the process again. However, my plan is to wait until that actually happens before I waste valuable energy and head space worrying about it.

Brain a bit fried now - chemo means I can't think and type very well so I hope some of this makes sense and helps a bit.

Off to take the car for an MOT. What fun.

Cakesandale · 06/04/2010 11:14

Hi all - especially glad to see RWU on the mend.

Hope you all had a happy Easter.

Ebbie - glad Pennies is going to help you out, if I can do anything though, my offer still stands, you aren't far away. I'd get your email address withdrawn from the site, though.

my diagnosis was last march, again after a routine mammogram, and I had a lumpectomy at the start of last April. Grade 2, stage 2, all nodes clear BUT there was a small affected lymph node within the lump they took out and so they did a further lymph node clearance to make doubly sure on the underarm nodes. 14 taken in total, all clear - the result was that they did not know whether I had any spread or not, so I was offered the option of chemo and opted to take it. I am older than somme of you (47) but with a six year old, and I wanted the best possible chance of being around. I had six cycles of FEC (with GCSF injections each time), then 15 rads sessions.

I have recently had a follow up mammogram wihich was clear, hooray!

I remain tired and achey, I am told by BC nurse this is my own faulty for working throughout last year, but i am self-employed, I felt i had no choice. I would not necessarily recommend it for anyone else, although it is useful as a distraction.

I am supposed to be working now but can't be fagged, and my printer is not working so I think I'll help dd paint her dinosaur and eat chocolate, not necessarily in that order. and then I'll go and put food out for our nesting robins and blackbirds. All these birdie babies are a fab excuse not to do too much gardening just yet (they are all quite low down in a big mass of tree ivy and I don't want to disturb them )

Good to see you and hear that chemo is underway BB: MAS, hope that book works for you.

sandripples · 06/04/2010 12:43

As everyone is providing age, I'll add that I am 55, with one 16 year old at home and a 20 year old at uni. (I feel much younger than 55!)

Re grade, my cancer is 'grade 1 but behaving like a 2-3'! This, together with the spread to lymph nodes, is why I'm on chemo. My surgeon is giving me belt and barces approach, as far as I can tell. It is still good that it is a grade 1 apparantly, but going through 7 months of chemo feels a long haul. However, better than risking leaving any cells around to grow later!

MaryAnnSingleton · 06/04/2010 13:27

forgot to say- Grade 2 and I'm as old as God's Dog

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MaryAnnSingleton · 06/04/2010 13:28

51 if I have to admit it !

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Cakesandale · 06/04/2010 13:59

You're only as old as you feel MAS (in which case I'm about 73 today)

KurriKurri · 06/04/2010 14:43

Hello all, hope a good easter was had by everyone, nice to see you Haggis - you will gradually get stronger, it does take a little while - so annoying when you have finished and are chomping at the bit to get back to normal - but you will get there. And BB - well done for getting your first chemo under your belt.

Quick summary of my 'story' Ebbie. May 2008 noticed my right nipple was gradually inverting, couldn't feel a lump, but went for biopsy etc. Her2+ cancer diagnosed. Had a mastectomy, and was told nodes clear, lab tests showed this not the case and I had grade 3 cancer v. aggressive type. Was told I had a 50/50 chance, am making sure I am in the right half. Had 2nd op to clear nodes in sept.2008

Was offered chance to go on a trial for accelerated chemo, and had 12 cycles. Slight set back when I got neutropenia - in hosp. for 7 days with multiple infections including septicaemia, but survived.

3 weeks of Radiotherapy. Followed by a year of Herceptin treatment which I will finish in July. I'm 50 by the way with 2 kids (DS 25, DD 20)

Initially I fell to pieces, thought I would never cope, but am getting my life back together. Not working currently, I was working as a writer, seem to have lost the heart for it - but will get it back

Feelings - guilt at what I was doing to my family, DH and children , and esp. my mother who had already suffered the loss of one of her children at an early age.

Trying to keep myself as fit and healthy as possible (despite all my posts about cake) so I have a fighting chance if the bastard comes back.

As usual have written far too much - well done if you waded through that. My task for this week is to get off sleeping tablets as they are doing my head in!

Did the right team win SR on Univ. challenge?

reallywoundup · 06/04/2010 15:16

Prob best if I leave my 'story' until I have a few hours but suffce to say I've had lots of surgery, bucketloads of chemo and rads, I am 28, 5 dc's ranging from 2 to nearly 7, a poor downtrodden dh and I refuse to give in to cancer despite it's best efforts so far

saw mac nurse earlier and feel 'at peace' with the whole thing now- details to follow later but I have to go and supervise the erection of a trampoline (bargain 8ft with enclosure £80 from morrisons!)

Cakesandale · 06/04/2010 16:55

Good god RWU that trampoline sounds amazing I think I'd better go and take a look in Morrisons, if I can find time between swimming, bike rides and taekwon do (dd obv, not me). £80???!!!

Glad visit to macmillan nurse was productive, if that's the right word. Hope the recovery from the shingles keeps going in the right direction. Are you out of the chariot yet?

sandripples · 06/04/2010 18:30

KK I'm getting a bit nervous re my axillary clearance Next Tuesday. Was it excruciatingly painful, or just painful?

RWU - gald you're feeling better. Perhaps better if you don't go on the tram0poline yourself for a few weeks??

Just cooking a veg curry in my new eat-as many- veg as we possibly-can campaign.