September Sunbeams 2014

Going through breast cancer treatment Chemotherapy monthly threads
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Hi Girls - thank you for the good luck messages - all went well today. I asked the nurse if I could keep the cap on for longer today - so I had it on for an hour before and an hour after - I wonder if that will make any difference to the shedding? Both my hubby and Mum came with me today - felt like I was having a party in there. They kept telling me off because I can’t sit still - I get really board - I’m such a big kid. But at least that’s no 2 over with now - 4 more to go ?.

Have any of you other girls that are having chemo before surgery started talks about when you surgery is likely to be - I like to have a plan - always looking at what comes next - so inpatient me.

Emma - I came out in a rash after my first (T) it looked like a cross between acne spots and chicken pox. I used the simple face wash and used a bit of spot cream for the couple I had on my face - but I had a load on my back - most of them went away by the end of week 2. I asked onc and she said it was due to the steroids.
Hope everyone if feeling well today - take care xx

362

Hello sunfriends, apols, I have been offline for a bit, wallowing in misery, but thankfully am rising up again. Am dreading 2nd FEC on Thursday. 2nd half of this cycle, the sickness has been off the scale, and having been passed from hospital to GP and back again, we still haven’t got it under control… chemo nurse will have to sort me out. I reckon that all the SEs need to be checked over - so we need to report them, however small they may be, by phone if poss, as I think the GP surgery is a bit of a worry germ-wise. Hair is such a pain, it just keeps on dropping out, and is almost gone from my body - and boy does that chemo-brazilian looks wierd to me! Will try to hang on to as much of the head hair as poss, even though the CC is torture as you all know. I can only do it with valium. Hope you are all doing well, champions of chemo, much love, Anna.

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Hey nutty, I’m having my op after Chemo. Due to my mum having BC at 39 and myself at 35 I’ve opted for double mastectomy and reconstruction using my stomach. Genetics testing not back yet. I have an app early November. I’m nervos , but looking forward to it being over xxxx

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Having kittens, sending you big hugs, this whole process is harsh n horrible, try to focus on t end :slight_smile: keep counting down xxx

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Lots of love Anna, I really hope they get you sorted quickly, keep calling until they do, get lots of rest and I know it’s hard but try to eat something, dry biscuits, crackers, just a little, keep strong girl, and on a positive at least no bikini waxes needed for a while ?xxxx Sam

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Thought I’d tell you about my day, not bad in a side effect way, and thinking of you that are suffering right now xxx I had a routine appt with my oncologist today, hospital half hour drive, not too bad, took 20 mins to find a parking space, got to clinic at 4:30 for appt at 4:45, got told all on time so great!! At 5:20 it was just me and another lady left in waiting room, reception all in darkness, they’d gone home, I found a nurse at the other end of the unit, doctor gone home, he thought he’d seen everyone!! What a shambles, you couldn’t make it up!! Took an hour to get home in rush hour, other lady was quite elderly and very upset as she had to get a bus so I gave her a lift home, bless her she’s all on her own going through chemo, this is when the flaws show up in the nhs, and I’m not a complainer usually but I will be making a call or two tomorrow, the lady, called Annie, said they only arrange transport for chemo not for routine appts, I’m off to bed now, knackered.com!! Xxx Sam

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Sam that’s unbelievable! You seem remarkably calm about it all. A complaint seems in order! Poor woman having to go through this on her own. I don’t know what I’d do without my lovely husband making me soups and tempting meals! Hope you are all doing OK Sunbeams. P xx

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Anna make a huge fuss! They keep telling me there is no need for us to be sick or feel sick so push hard to get it sorted! They apparently resist giving us the really expensive drugs but you clearly need them! I am worried about you - this is all hard enough and as all have some way to go. Please put yourself first! P xx

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Thanks for the replies, I phoned my BC nurse and she said there shouldn’t be any rashes with FEC and there was a good chance it was shingles…panic time! Went to the GP aand luckily she said it was just a skin infection due to low immunity (turns out even skin isn’t safe any more) but will need a week of antibiotics and urgent bloods doing tomorrow to check my white blood cell count hasn’t plummeted too low. But hey, its better than shingles!

 

I’m glad everyone is enjoying their chemo brazilians (fab term!) its one less place to ‘tend’! Although my leg hair is still growing like crazy…typical!

 

Hope all goes well on Thursday Anna, nausea and sickness are just horrid so I hope they can manage to sort it out for you. It feels good to get the 2nd of out the way, I feel like I’m actually making process now and every day is a bit closer to being done xx

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Hey sunbeams :slight_smile:

Sam, so sorry you had a pants day! How lovely though that you made t ladies day a lil nicer by helping her with a lift! When I went for my biopsies a similar thing happened to me. They thought I’d been sent home, but had been asked to see t consultant again :frowning: hope today brings better luck your way! X

Emma good to hear it isn’t shingles and hope clears soon.

Pam, I’ve found my second lot harder too, we can do it though and we will! Xxx

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So there was me thinking I had a pants day yesterday and then I read all of this and realised that I didn’t compared to most of you, I was actually just feeling a bit crappy and sorry for myself. Perspective, eh? Bad to hear of NHS failings and sickness and general feeling awful :frowning:

I now have a lovely bald patch right on the top of my head, hmm, delightful, but I think the shedding seems to be easing off for the time being. Thank god for that, thought it would never end. So the plan is to clip hair up gently under a hat for now, I think I’ll get away with it.

Wishing you all strength, Ness xx

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Thankyou for your words girls, it wasn’t a bad day for me really, takes more than that to pee me off ?,but it was the lady Annie’s treatment that made me angry, I’ve had a phone call from the oncologist himself this morning, profusely apologising, some may say grovelling lol, his list had only printed out 90% of his appts evidently, I forgave him but I did make it known that the old “blame it on technology” excuse was a tad lame!! I’ve put in a complaint about Annie’s treatment and they are going to phone her, so they say, and arrange transport for her next appt, I will be following this up and making sure it happens, bad treatment of the elderly is my bug bear!!!

Phew Emma, thank gawd it’s not shingles, hope it calms down soon, big hugs xxx

You can do it Pam, focus on the end result, and one day at a time,?, have a lovely soup making day with your mum. I do the injections myself and they are not bad at all, it’s the idea of it that’s much worse than the doing it, and they help the process so worth it overall, the district nurse can come and do them if you want, so don’t be afraid to ask if it comes to it xxx

Have a fun day with your friends Den, we should all buy the masks just to freak everyone out lol, hand them out at the front door lol xxx

Ness have you heard of the spray that some use to cover the bald patches? GLH and Mane hair thickening spray are a couple, heard good things about the results, just a thought xxx

I’ve got broline eye drops, as a teacher this is the conjunctivitis must have lol, not stopping the stinging yet but fingers crossed, if not I’ll mention it to chemo nurse on Monday, lots of love to you all, xxx Sam

373

Hi Lou- I too have opted for a double MX after chemo – my boobs are small and I would be left really lopsided with just the naughty lump being removed and I hope it will help with the worrying. I’m waiting to hear back from genetics – I don’t have any history in my family and with being 38 and having three daughters I want to know if I carry anything that would put them at risk. 

 

Sam – that’s rubbish treatment – how lovely of you to give her a lift – I hope someone looks out for you if needed .

 

I hope those feeling rubbish feel better soon.

 

I’m day 2 of second T and feeling okay for now.  I’m making a veggie curry tonight – I’ve been reading lots on a web site that my Mums boss recommended – he is a dentist but is really into Nutrition and told my Mum about it – its got amazing info on it.  So today I’m having a broccoli, cauliflower, sweet potatoes and chickpea curry – luckily I do love my veggies  - just have to convince my hubby.

 

I’ve just taken my Emend anti sickness that makes me really sleepy – so off for a snooze now – Take care every one xx

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Hello lovelies, thanks so much for your messages, and so sorry to hear of the various strange things that have been coming at you.

Lou – having the mx op after chemo sounds pretty good. I had the mastectomy first, but am anticipating further reconstruction op plus preventative mastectomy and reconstruction on the other side, as my lovely sister had BC at 39. Best to get it done in one swoop if they can find a way to do that.

 

Sam – thanks for support, and positive thoughts on our fancy chemobrazilians. Anyone for a pubic CC or beaver-cap? Wow, what an extraordinary clinic feck up, I can hardly believe it and so kind of you to take Annie home. This horrible journey has shown to me that so many people are so kind, SUNBEAMS INCLUDED! So many kind people out there …

 

PaulS – thanks, I will get sickness sorted now. Time for Emend methinks.

 

Emma – awful about the skin rash but thanks lord it isn’t shingles. I currently have teenage plooks. The rich creams I have been using seem to disagree with me. But I have to say, where I don’t have spots I’m pretty peachy.

 

Pam – hang in there mate. I so know what you mean about not feeling able to do this. Keep ticking the treatments off on the long road, you are a chemo champion.

Have to say, today has been pretty vile; had a horrible little puke in the shower, washed hair and completely flipped when so much came out. I absolutely howled. Then at doctor’s getting bloods done the nurse couldn’t get it it to draw, for some reason I went into shock and promptly fainted. Never happened to me before and what a drama.  Fingers crossed for a quieter time in the big chair tomorrow.

Love to all of you and sending strong and powerful woman warrior vibes. Anna X

 

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ps, would love to hear opinions on genetics, us and our daughters - I have 4. What has anyone been recommended to do? Love Anna

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Bloody hell Anna! Pretty vile is one way of putting it! That’s a full on day of carnage lol! Bless your heart, you must be exhausted after all that, your a trooper I can tell, and you be made me belly laugh at the visions of us all sat akimbo in the chemo suites with our pubic cc’s ??, brilliant!!

Take good care of yourself lovely and big hugs for tomorrow!!! ? xxx Sam

377

I lost my little sister to this evil, both nan’s passed with it too, they’ve advised I wait until treatment all done then the doctor will start genetic testing, my daughter only recently mentioned it, she’s 17 so I think it’s started to play on her mind a bit, I’ve assured her I’ll find out and do whatever it takes, any trials etc, xxx

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Hi havingkittens and sampeds
Please find the following link to our ‘Breast cancer in families’ information which will help explain the options you may have:

breastcancercare.org.uk/breast-cancer-information/breast-awareness/am-i-risk/breast-cancer-families

Our helpliners are also on hand with support on 0808 800 6000, lines open 9-5 weekdays and 10-2 Saturdays so do feel free to call to talk any queries over regarding this

Take care
Lucy BCC

379

Hello Sunbeams xxx sorry I’ve not been on for a while…stuff going on with family and now mum come to stay for two weeks…yes…! Had fec 3 today. Better than second emotionally. Used to the hair loss now so that traumas over. I promise I will get on here more xxxx will read all the posts. I asked for Emend on your advice . My oncologist didn’t know what it was and looked it up in the dictionary. Was also given 7 days of steroids!! And loads of extra sickness tabs! I read the side effects sheets for Emend and it said don’t take steroids until finished Emend??? Confused now. Can anyone help? Do you take your steroids and Emend? Thank you x Near disaster today. After one and half hour bus journey got told drugs not made because liver blood tests dodgy!!! Got told might need to reduce chemo dose. Then told had to come back Saturday. Then said I could have full dose in two hours. Went and got lunch with mum. All good. Feel scared of taking all these drugs! Feeling a bit queasy now. Looking forward to keeping in touch and hope bearers are feeling ok tonight xxxxxxx

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Chumbeams! What a week it seems!
Sam, your old lady, wow… Good on you for stepping in then and since. The fact the Onc called you personally is very good though, I guess mistakes do happen. Life’s too short to get too upset!

Emend - I get it on chemo day, then on day 2 and 3.
Steroids - on chemo day, then on days 2, 3, 4
Gcsf injections - on days 4, 5, 6, 7, 8

Genetics - my sister died last year with exactly the same type of BC that I have (NOT the brca gene one). It’s very difficult to believe.
My other sister has finally been referred for genetic counselling and is waiting for appointment.
It looks like this will be quicker than waiting until my treatment finishes which is the plan for me.

I’ll keep y’all posted on how it goes.

Can’t decide whether to bother with the Apprentice. Think it may make me angry.

Going to Peppa Pig World with my 3yo son this weekend.
Beam me up, beamers!
x