Evening Valentines,
just wanted to let you know if you have’nt seen it already, there is a post on the ‘January Jems’ thread by Caroline60 on 1.1.13 which includes a massive brilliant list of hints&tips whilst undergoing chemo- I have tried to cut& paste and pm Caroline to ask if she could post it on our thread but can’t seem to do it successfully so thought I’d let you know about it.
Re losing hair, I am also going to shave my hair nearer the time of losing it which I did last time, I’m actually thinking of doing a sponsored head shave to raise some money for macmillan nurses. Also, I have been really worried about how my daughter (aged 5) will feel when I lose my hair, my Macmillan nurse suggested telling her that if my hair falls out it means the chemo is working, which I thought was a really good idea!
Take care
Sarah
x
Thank you Karen and Valentines for being there! I am having wonderful support from husband and all my friends and acquaintances – but I think I must already be boring them to death with constant cancer talk – and this is just the beginning! I am 67, married, no children, quite sickly as a child, but healthy as a horse in adulthood – except for bad arthritis in the knees. No breast lumps or symptoms, just failed the mammogram. I had Stage IIB, Grade 2 invasive lobular carcinoma of the left breast and 9/22 positive lymph nodes, ER+. I had to have two lots of surgery and found the second one very difficult, lots of hypersensitivity,plus trouble with my drains. Very glad that part of it is over, and despite everything the surgeon says I’m healing very well.
Have seen the Oncologist once and know that (if I pass the CT scan and don’t have anything else terrible going on inside me) I will be having 6 cycles of FEC-T followed by 5 weeks of daily radiotheraphy and then 5 years on Letrozole. I would love to be in touch with anyone on a similair regime. I am going to try a cold cap. I had shoulder length hair which I have had somewhat shortened but thought I would leave for the moment (I really don’t like short hair on me) Is it crazy not be cut it much shorter now?
We’ve been so impressed with everything about my treatment so far! My experience with the orthopedic people about possible knee replacements was really terrible – for years and years they seemed not to take me seriously – none of that with the breast cancer. And I’m so glad to be in Britain with the NHS. If I were in my native US, medicare might not have been willing to pay for all the tests that have been made and all the treatment that lies ahead!
Good luck everybody, Yankee
Hi Everyone
Karen - glad you were pleased with your results, totally understand what you mean feeling strange celebrating, I think that’s what keeps me going praying for the best out of a bad or what could be a worse situation! I’ve also got to take tamoxifen once chemo is finished!
Hope everyone has a restful weekend.
Sarah
x
Hi all,
Here is a link to the January Jems thread mentioned by Sarah (HaloB) above. You just need to scroll down to find the post by Caroline60 from 1.1.13:
Hope that helps,
Best wishes
Anna, BCC Facilitator
Just a quick question but has anyone been told they need a flu jab before starting chemo ? I’m seeing my onc on Thursday so may ask then , but have read somewhere its best to have one & was just wondering if anyone had been told this ? X
Hi. just popping in from October.
flu jab is recommended as well as as one against pneumonia, cannot remember name. Neither is a live vaccine, so should be taken by you. Check with ONC or GP first.
good luck to you all, time will fly and then drag. Soon you will be in routine and counting down your treatment days.
Hi valentines, it looks like I will be joining you if I may?I was diagnosed on 8/11/12 with 4cm, grade 1 invasive ductal carcinoma. er + Her2-, lymph node involvement. Had mx and anc on 14/12/12 with tissue expander. Have recovered well from op, although it took a good 5 weeks to not need painkillers any more mainly due to tissue expander.
Saw onc on 15/1/13 and will be having 6 lots of FEC chemo folllowed possibly by rads (onc spoke about trial taking place which will be discussed nearer the time) then Tamoxifen with reconstruction when recovered from rads. Have been referred for genetic testing as strong family history of bc (lost my mum 4 days before I found out I also had it) I go to a group info session at chemo unit on 29/1/13 and will be booked in then.I have decided not to use the cold cap as I get migraines and have got short hair anyway. I dont think I will be getting a wig as I know from an alopecia sufferer how uncomfortable they can be, will stock up on hats and scarves instead. Heres hoping we all have minimum side effects and stay as strong, happy and healthy as possible.
Gentle hugs on the good side to all xxx
Welcome Blue Sky 19!
So sorry to hear you have lost your mum aswell as now fighting this awful disease but fight you well and im sure your mum will be sending you her love& strength from up above!
Im also going to wear headscarfs, hats as from experience of wearing a wig they can be uncomfortable, although everyone is different. Good luck & I’m sure you will find this site as useful as we all do!
Karen- I have also heard about having a flu jab and have put this on my list of questions to ask my Macmillan nurse on Tuesday. We have a very similar diagnosis and treatment plan so will look forward to swaping notes!
Sarah x
Hello Valentines (wonder if we will shorten it to vals when typing becomes difficult with chemo hands?) I’ve printed out the tips mentioned above, and put them with all my other paperwork. Thankfully I already have flu jabs every year, and had a Pneumovax jab due to lung disease, so I’m as prepared as I can be. Hugs to you all
pg xxx
Hello
Hope I can join you.
I originally had breast cancer diagnosed in March 2005 and underwent bilateral mastectomy and lat dorsi reconstruction in April. Discharged in 2010 and I have been well ever since, until November when I found a lump under my left arm. I have now been diagnosed with breast cance cells in lymph nodes on both sides and have to have them all removed, as well as having implants removed as I have to have radiotherapy. I should be having surgery in the next couple of weeks, find out the date tomorrow and then have to have chemo, Herceptin and radiotherapy.
Really glad I have found somewhere to discuss feelings and find out if others are going through the same.
Dawn xx
Hi Sarahsmum
So sorry to hear of your new dx and subsequent treatment. Good luck for your surgery, hope all goes well for you, and quickly. There’s nothing worse than waiting, as I’m sure you already know from your first dx. I’m sure everyone here is wishing you well too. Lots of hugs.
pg xxx
so sorry Bluerose about your mam I’m not sure how I would cope with it all , you must have super inner strength altho I bet sometimes you don’t feel like you do x
We all have a busy week ahead , good luck tomorrow Dawn x & Sarah, fingers crossed for Tuesday & yes it’s nice to be able to swap notes !
How does everyone keep track of the thread , is there any easy way other than scrolling thro the posts ? Maybe being a bit blonde here but I seem to go off on tangents lol & PG, yes I’ve avoided using txt speak on here but I’m sure our posts will become less comprehensive !
Karen x
Hi all - we have a BlueRose and a Blue Sky on here! Welcome Blue Sky, I think Karens above post was for you not me.
Cant believe there are already so many of us on here. Still waiting to see the oncologist, am sure the appointment will come around fast - undecided if thats a good or bad thing.
I was wondering myself about the flu jab? Going to mention it to bcn about it tomorrow.
Hope you are all doing ok. Xx
Can’t sleep so obviously starting to dwell on what might be ahead.
Welcome to all of you who have joined us, sorry you had to be in this position but glad of your company, this would be so much harder if I felt alone.
Had flu jab on Friday tried to check with BCN but she never got back to me after I left message on Wednesday so just went ahead as GP said it was a good idea. Never mentioned pneumonia jab though and I only knew of its existance from reading about it on here. Another question for the oncologist if I get to see her on Tuesday, all the schools are closed today (Moday), due to treacherous driving and walking conditions, thick layer of snow turned to ice!
I have decided not to bother with cold cap, love my new short look and hopefully it won’t take too long to grow back. Have ordered a couple of hats and scarves for now and not so bothered about hair loss as I am about loss of immune system!
I am also worried about coping with mood swings, night sweats, nausea and fatigue, constipation, loss of nails, itching dry skin, sore mouth, loss of appetite (I am a total foodie!) and brain fog (I often think I’m the only person in this family blessed with a memory for appointments, location of possessions, who needs packed lunch, swimming kit, completed homework and so on!). Been reading “January Jems” thread and there are some good tips on there.
A lot of people seem to be saying that the thought of chemo is worse than it actually is, just hoping I find this to be the case. Think the high of getting clear margins after two surgeries has well and truly worn off! Done celebrating and preparing for next round.
Think quite a few of us have appointments this week with oncologists so good luck Valentines and let us know how you are getting on, it’s lovely to have something to read in the small hours!
Best wishes to all
Elaine x
Hey ladies - hoping I can join in with the valentines - what a great name!!
i was last on here in Nov just after my mx - my story is - originally dx 2007 - had WLE, rads & tamoxifen for 5 years (grade 2 IDC).
Went for my annual mammo in Aug this year to be recalled for further investigations - which revealed 2 tumours grade 3 so I had mx with immediate LD back flap recon. Unfortunately when I went for my results - the CT scan picked up 2 tumours in my lung and because of the position of them - too near vital organs - I had to have another major op on Dec 27 on my lung to remove the tumours ( when they got in they found 3 tumours). Results revealed that it was BC that had moved to the lung. So I am now 3 1/2 weeks post op and doing great. Have to have another CT scan and bone scan and providing they are clear (fingers crossed!) I have my pre chemo assessment on 4th Feb (5 days before my 50th birthday!) so it’s looking like chemo starting w/b 11th Feb - if they suggest any time before 9th Feb I am gonna ask for a postponement as my daughter is organising a wee birthday gathering for me and I defo don’t wanna be on week one of chemo at my birthday party!
Anyway ladies that’s my story and hopefully I can join the valentines for the next step on this journey (a journey no one wants to travel - but at least we have each other for comfort & support) take care everyone 
xo
Aww Elaine your post was at 4.45 !! Mind you I haven’t had a decent night sleep since finding my lumps your either in pain or stressed ! Last night I forgot my painkillers & in bed thought right Karen get to sleep without them , who was I kidding 2 hours later I got back up for them , just aswell tho cos I’d left a candle burning ! Room smelt lovely !!
ive been told acupuncture is great for hot flushes & our hospital has a holistic centre , think this site is great for picking up tips I’m gonna stock up childs toothbrushes, biotene toothpaste & pineapple ice lollies ! I’m sure we will all help each other through it .
not sure if u can post but did u get hats etc from any particular website, the best one I’ve seen was in USA, I’m gutted its going to be summer rather than winter I personally prefer to do the school run in a woolly hat than a headscarf but I’m sure like all of these things it won’t be as bad as I expect , once again the not knowing is the worst !
sorry bluesky / Bluerose if I mixed u up , can’t blame chemo brain yet so must be a blonde moment , I have plenty !
Karen x
Hi Karen
Managed to go back to bed for a couple of hours as schools shut and OH working at home! Think problem sleeping last night was due to no walk / exercise yesterday as paths were a sheet of ice and I had aches and pains from flu jab!
I’ve ordered my hats from www.wigs4u.co.uk but when I googled “head scarves for cancer patients uk” hundreds of sites came up. They are all pretty similar. I’ve Just gone for a plain beanie style for night time and a turban style for day time with a couple of scarves for when I want a change. I do a lot of crafts so should be able to jazz them up when I get bored with the scarves
My 10 year old son has been totally cool with everything so far, I’ve been pretty honest with him but the thought of me going bald is stressing him out a bit. He is worried that his friends will laugh at him if his Mum is bald 
I have reassured him that I’ll be wearing hats so they probably won’t even know and that if anyone does laugh to tell me or his teacher and we can sort it out. Just goes to show how much this affects everyone around us.
Sarahsmum and Honey so sorry you’ve had to go through this again but glad you’ve both joined us along with everyone else, we can get through this with the help and support of others
Elaine x
Hello ladies,
I’m sitting here with tears flodding down my cheeks reading all your stories. I think the emotion is empathy and relief. Relief at finding people on the same road as me I HOPE I will be on the chemo train by Feb.
I noticed a tiny lump 2 years ago. Not visible on mammogram but just on ultrasound. Told it was too small to biopsy and to keep an eye on it . No change over each six month check. Then in October 2012 I noticed the skin above the lump was a bit shiny.
GP sent me to the breast clinic where a blocked duct was dx. Being sceptical I asked for lumpectomy. This was done under local anesthetic on November 7th but no margins were taken.
It wasn’t a blocked duct. I was DX on 20th Nov IDC (ER and PR +ve, HER2-ve).
Had breast conserving segmental excision and SNB on 5th December. SNB showed both nodes taken were affected (macrometastases).
Consultant recommended a breast MRI for both breasts, as the lump had not shown on Mammogram. Had this on 8th January
I had ANC on 9th January - all nodes taken showed -ve for cancer. Cause for great celebration until the MRI showed hot spots and a subsequent needle biopsy revealed atypical cells on my ‘good’ side. BC side now all clear. Am hopintg to get the results of the full core biopsy on my ‘good’ side tomorrow.
I’m sorry I seem to have written an epic medical log but my life has been such a series of ups and downs for the last few months I hope you will understand. I know I have to have Chemotherapy, followed by radiotherapy then Tamoxifen (or something similar) and I hope against hope that I’ll be starting soon rather than having to go throught the same surgery process on my other side.
Hoping to become a Valentine (wow, that sounds rather sick as nobody would ever hope to have chemo. I’m sure you all understand my eagerness to get the ball rolling)
Gentle hugs to all valentine girls.
M x
Hi Everyone,
Wow haven’t we grown in number!!! NOt sure that is a good thing - but pleased we all have each other.
I am not going to cold cap - as I have really short hair so won’t look too different, I can imagine having long hair would be such a hard thing to loose. I bought 3 buffs to cover up during the time (bright pink, purple and brown (the work one)).
In a last ditch defiance I dyed my hair purple at the weekend. It caused a stir at work today!!! I have a really short purple hair cut at the moment. I may regret that when it falls out and I am cleaning purple hair up!
Look forward to getting to know you all - even though the circumstances are far from pleasant.
We’ll all get through this with each others help
Alison xx
Hi M , you’ve certainly been through the mill !! None of this is easy but I’ve found that the waiting is worst , waiting for appointments , waiting for surgery , results etc & you certainly have had the lions share . I have been fortunate in that I have only had one lot of surgery, I’m waiting to see my onc on Thursday so starting to get the nerves back .fingers crossed you get some good news tomorrow
I know a few others on here are having a big day tomorrow so fingers crossed to you all too !!
Karen x