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June 2016 starters?

kalimera
Member

Re: June 2016 starters?

Hi Netti, it's not easy breaking the news to your children, we told ours just before I had my surgery...They are 7, 8 and 12. But I'm so proud of how they've all handled it. I think for the most part their biggest concern has been normality and fortunately my se's have been mild and so things have been ok. The hair loss has worried them, but my eldest told me I looked good in my wig when we went out on Saturday! The breast care unit gave me a book called 'Mummy's Lump' which helped to explain what had happened and what would happen next, however it was probably a bit 'young' for my kids and there may be an 'older' alternative. Good luck Netti xx

Emma111
Member

Re: June 2016 starters?

My side effects have all settled thank you. Refuse to think about 15th July for cycle 2 for another week as I want to enjoy feeling good. Glad you are speaking to your BN tomorrow Netti, get all the help you can. Anything to make your life that bit easier, grab it, you will never be alone in this xx
netti37
Member

Re: June 2016 starters?

Thank you, Belle,Emma and Sue. I had to off load a bit. I will call my BN tomorrow and get some help. Last week, when I was on steroids, I was much more positive knowing that the treatment had started. I might ask for more stetiods ;).... Ive tried to have fun with kids this weekend, and although we have, I feel like there is two of me all the time. Xxxx
I hope you are all ok after your second treatments, not too many nasty se's.. You to Emma, hope things have settled down a bit for you now. Xxx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Nettie37,

 

So sorry that you are struggling - yes mentally it does get to us at some point or another. In some wasy it may be al little like a grieving process - grieving for what we were, what we perceive to lose and have lost.

It is a challenging process coming to terms with the now - thankfully there will be a future. Much of what we had will be back - and we can move forward again. One day at a time.

I can only imagine how difficult it may be to explain to your children. On this site there is a resource section and I looked out these two publications for you. You can download them and print or order them.

 

https://www.breastcancercare.org.uk/information-support/publication/medikidz-explain-breast-cancer-b...

https://www.breastcancercare.org.uk/information-support/publication/mummys-lump-bcc164

 

Hoping they will give you some guidance with the task ahead and will make it easier for you and your children. Timing may be diffucult to judge - like you, I lost a reasonable amount around Day 6-7 after 1st FEC andmost of my hair went on day 6 after FEC2. So that may give you an approximate timing. 

   

                                           Slide2.JPG

Hugs

Sue xxx

 

Emma111
Member

Re: June 2016 starters?

I have had one counselling session so far and it helped just 'releasing'. Exhausted after followed by a period of 'calm'. Everyone is different but counselling can really be beneficial. As we too well know, this isn't just a physical issue, if anything, the emotional and psychological aspects feel worse. Perhaps speak to your breast care nurse tomorrow and tell her how you've been feeling and mention you'd like counselling. Also speak to her re guidance on telling the children, she'll have a great depth of knowledge and expertise on handling such a delicate matter and she will guide you through all the way. Xx
Belle
Member

Re: June 2016 starters?

Hi Netti,

I wish I could give you some insight into telling children as young as yours - I know there are others on the forum who might be able to share their experiences. Mine were much older and therefore not comparable. I agree that counselling is a great option. I've found it incredibly helpful. In fact, I'm delighted to have been referred for it and would thoroughly recommend it to all. There should be no stigma, what we're dealing with is extremely difficult and there's no shame in needing to offload to a professional.

I hope you're able to get the support you need for both you and your girls.

much love,
B x
netti37
Member

Re: June 2016 starters?

Counselling is an option I think I must take. My bcn recommended it, but I refused initially. But I'm finding it difficult at the moment. Maybe when I do tell my girls it will be easier. I'm bottling everything up. I will need help with them though and how to help them deal with it. They are 8 and 11 so a very difficult age. Its so unfair for them. They do not deserve this. Xx
Emma111
Member

Re: June 2016 starters?

Netti, I'm so sorry you feel so low 😢 I can't imagine what it must be like to have to tell your children. It will undoubtedly be a shock but between you and your children, you will climb this mountain together and reach the top. Have you received any info about counselling services? Xx
netti37
Member

Re: June 2016 starters?

Day 12 after 1st Fec. I feel well physically and had minimal side effects. But I'm feeling so low and emotional. Totally drained by the whole thing. Also my hair has started to come out this morning. My scalp has been sore for days. I can't hide it away now my hair is coming loose. Its all a massive reality again. Rightly or wrongly, I've still not told my children. I havnt been strong enough. Depending on how quick my hair loss is, I will have no choice soon and I know it will break their hearts. Xx
Belle
Member

Re: June 2016 starters?

Hi LucyLu and Haz25a,

 

I did go through CAB and it was the cancer specialist who told me I wouldn't be eligible.  But I agree that it is worth checking.  I spent years filling out these forms (or rather their predecessor, DLA) for my children and they are seriously hardwork.  Not something to do when plague by chemobrain.

 

But also check for ESA and any health insurance payouts.  Every little helps!

 

B x

haz25a
Member

Re: June 2016 starters?

Hi Ladies,

 

Just to add to what Lucy Lu has already said, anyone thinking of applying for PIP, and I think you should, nothing ventured nothing gained BUT please DO get someone like CAB or Macmillan to help you with your forms. There are certain words and phrases etc. to be used in order to be successful. Also, the forms are incredibly intimidating and if you're not at your best, you may struggle mentally to fill them out yourself.

 

Good Luck.

 

H.x

Lucy Lu
Member

Re: June 2016 starters?

It's ok. I have now got the message and responded.
Lucy Lu
Member

Re: June 2016 starters?

Someone has sent me a personal message re pip but I have not been able to open it. If you let me have your email address. I will contact you
Lucy Lu
Member

Re: June 2016 starters?

I went the CAB. I could have filled it in myself but was told there is more chance of success if the cab do it. They are doing this every day and know exactly what to say. We usually paint a better picture than how we actually feel and how this affects us. Once awarded it you get it for 12 months so worth getting the forms filled in correctly xxx
Belle
Member

Re: June 2016 starters?

Hi all,

 

I had some good news re finances today too 🙂  Our situation is a bit precarious as my husband is on a 6 month unpaid sabbatical from work during which we were meant to be travelling on our narrowboat living off my earnings and dipping into our savings when absolutely necessary.  I make and sell preserves and can't do that at all now initially due to the heavy lifting and now because chemo & food prep for sale do not go together.  So neither of us are earning and therefore our savings have been taking a massive hit.  I discovered via the CAB woman at the cancer centre that I could claim for contributions based Employment Support Allowance as I'd been paying the right level of National Insurrance - phew! So that's helped.  This is the link: https://www.gov.uk/employment-support-allowance/eligibility

 

Today I discovered that I'm still covered under my husband's work private health cover with BUPA which I'd not thought of as I'm being treated under the NHS - never occured to me not to be!  So, if any of you have private health care, even the most basic level, check it. I'm entitled to £100 for every night in hospital following my mastectomy, £100 for the day of my sentinel node biopsy and £100 for each dose of chemo.  If I was going on to have radiotherapy I'd get £100 for each dose of that too. 

 

Unfortunately, I'm not going to be eligible for PIP but I do hope many of you are successful in claiming.  There's a PIP calculator here for any wishing to check: http://www.benefitsandwork.co.uk/pip/indexxx.php  

 

Hope that helps,

B x

 

 

RosieFlower
Member

Re: June 2016 starters?

Hi Lucy Lu.

Am awaiting my PIP forms, as rang them yesterday. Did you go to CAB for help in filing in form, or do you think it is doable yourself? Funnily enuff, haven't had a diagnosis letter from hospital, maybe i need to chase for proof - as if what i'm going through isn't proof enuff! Hope all is good with all . Rosie xx

AngeNut
Member

Re: June 2016 starters?

I'm drinkng lots of lemon squash - and yes I'm finding drinking through a straw really helps. I also like ice in it. 

Im not a tea drinker, but usually black coffee - but I'm finding coffee tasting vile especially if cooled - I'm throwing a lot away!

No, water doesnt taste nice but I am drinking lots, but I'm often drinking it hot - seems to help with this dreadful taste.  X

AngeNut
Member

Re: June 2016 starters?

Yes I'm like you , Emma111 - 1st  FEC was 24th June - so I'm entering day 9. (It's a 3 weeker).

I was expecting to feel so awful, but have only had mild side effects, 1 day of awful fatigue and today this nasty chemical taste has been very strong, ALL day! 

Im not petrified - but apprehensive and wondering when the really nasty bit is coming. I've even started driving this week after surgery 5 weeks ago and had a very little red wine with my tea. So have felt quite good a lot of the time. 

But - it doesn't seem fair when so many have a tough ride, 

I'm just thinking, 1 week down - 17 more to go 😀

AngeNut
Member

Re: June 2016 starters?

Great, thank you Belle. That's exactly what the nurse said yesterday when I had my PICC flushed. X

AngeNut
Member

Re: June 2016 starters?

Thanks Sue -. Well done for carrying on so energetically when feeling rubbish! 

Bless you -- all that trouble with canulas etc - how come you didn't have a PICC.

No probably won't give you one now as they cut you to insert ... I dint feel a think and it's no bother.. - such a shame for you. X

AngeNut
Member

Re: June 2016 starters?

... YES - and so will WE!! 

Belle
Member

Re: June 2016 starters?

Hi Sonyacheet,

 

I'm so pleased you've got some more 'stuff'!  You really should start to feel better on those although you may start needing the Senna tablets ...!  I wonder if the nausea and indigestion go hand in hand?  I've had real problems with both and until I hit the ondansetron I had dreadful diarrhoea too.  It's all digestive stuff, isn't it?  Sincerely hope you improve quickly.

 

B x

sonyacheet
Member

Re: June 2016 starters?

Hi ladies.
Ended up seeing my gp today as the sickness and heartburn were causing me to be very ill. She has prescribed more ondansetron for 5 days then cyclizine hydrochloride. For the heartburn she has prescribed lansoprazole. Here's hoping I start to feel better.
Xx
Belle
Member

Re: June 2016 starters?

Hi Flopsy,

 

I don't mind at all!  They are as follows:

  • Emend 125mg day 1; 80mg days 2&3 - I believe it's always a three day course but you should have other stuff too?
  • Domperidone 10mg 3 x a day for up to 5 days
  • Ondansetron 8mg 2 x a day as required
  • Levomepromazine 6.25mg 2 x a day as required
  • Dexamethasone 8mg days 1; 6mg day 2; 4mg day 3; 2mg day 4
  • Omeprazole 40mg 2 x a day

Just to round it all up I've also been given Difflam mouthwash, Hypromellose eyedrops (sore eyes) and Nystatin in case I develop oral thrush again.

 

With that little lot, I rather suspect diarrhoea is not going to be a problem this time around!

 

Hope that helps, I would definitely talk to your team because there are plenty of things you can take with Emend.

 

B x

Flopsy
Member

Re: June 2016 starters?

Hi Belle.

 

Do you mind if I ask what your revised antiemetics consist of? I see from your previous post that you were already on Emend

 

The nausea and vomiting have been a big problem for me through both the FEC and now the T. Emend seems to stop me actually throwing up but I have only been given a 3 day course

Belle
Member

Re: June 2016 starters?

How's everyone doing today?

 

My revised antiemetics are a vast improvement so I'm feeling a lot better than last time although I do want to sleep all the time, except when the steroids kick in!  Still feel like I've been hit by a truck and am ridiculously cold.  Thank goodness for Wimbledon!

 

Hope you're all doing ok.

 

B x

Lucy Lu
Member

Re: June 2016 starters?

Hi Bottyboo. It tooks about four weeks to come through and was backdated to date of phone call. I sent diagnosis letters from hospital with application form. I also printed the side effects of each drug and sent these. They do say you might have an assessment but I think as long as you send letters from the hospital etc there is no need. Would definitely recommend making an appointment with CAB to get their help in filling in the form. They are doing this everyday and know what is needed for a successful claim. Good luck
Bottyboo
Member

Re: June 2016 starters?

Hi ladies.
Lucy Lu that's brilliant news. I thought you had to have secondary cancer to get PIP. Did it take long to come through?
How is everybody else?
Love and hugs xx
Emma111
Member

Re: June 2016 starters?

On a separate note. .. I've just found out that Olivia Newton John, Kylie Minogue, Jennifer Saunders and the ginger one from Sex and The City all had chemotherapy for breast cancer. ............. look how full of life they are now ..... .. and look bloody amazing!!!! X
Emma111
Member

Re: June 2016 starters?

Thanks for the tip Lucy Lu, will ring them xx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Emma111

Fabulous news! Congratulations!

Smiley Very Happy

Sue xxx

Lucy Lu
Member

Re: June 2016 starters?

Emma. Do you know we are entitled to personal independent payment. Google it phone the freephone number and they will send you forms. Your payments will be dated from the phone call. It is no means tested. It is best if you get the citizens advice bureau to help you fill in the forms. I was told about this by a woman at the chemo unit and didn't think I would get it as I work. But I did I and it seems to me it is automatically awarded to people with breast cancer having chemo
Anon16
Member

Re: June 2016 starters?

Great news Emma x
Emma111
Member

Re: June 2016 starters?

No abnormalities. ...... says my bone scan results 😀 😀 xx
Anon16
Member

Re: June 2016 starters?

Welcome pudding xx

Emma I'm with you there, we complete on our house today! It's a project and not really liveable but we can't afford to rent and own it and we didn't want to not buy it so yikes. Now I can't get insurance etc. In 6 months we will look back and laugh (I think lol)
Emma111
Member

Re: June 2016 starters?

Thanks everyone, feeling a bit better about things at mo and trying to enjoy the nice days between treatment.
Belle ..... you absolutely rock with or without headscarf 💞

Just had a meeting with Macmillan Financial Adviser. ..... not a great position to have just bought my own home 6 months ago on my own after years of saving then thought I'd sort 'boring' insurances out ''when I'm older and more likely to get ill'' ...... yep, thats pretty much how dumb ive been not covering myself!!!! Idiot!! Spent my 20s in London living the 'high life' and moved back to Devon for my 30s for a healthier lifestyle. ...... quite comical really!!!!
puddings777
Member

Re: June 2016 starters?

Hi , l am new to this site. l had my 2nd Chemo a week yesterday. And apart from lots of tiredness and constipation, l have been ok.  So glad to have the Picc Line in.  l live happily  on  3 xMuller Light Yogs per day.  Floradix Iron/Vit tonic twice a day. And 2 Vodka/Coke in the evening....when l go out and socialise in the pub for couple of hours,   Rightly or wrongly, it works for me !  

netti37
Member

Re: June 2016 starters?

Thinking of you all who are having 2nd treatment today. Xx hope ladies with se's after 1st are doing ok and starting to feel 'normal' again. Xxx
Tinky
Member

Re: June 2016 starters?

Sending love to everyone going for treatment today.

 

Kalimera - I will be a third done on Monday, that's the way to see it.  I think we all deserve a nice treat, meal or present to ourselves after the last one & why not start planning it now (I'm thinking earrings!) which will be a nice change from looking at hats & creams!

 

Day 18 for me & hair only coming out if I touch it, but the horrible sore scalp has gone off, so it won't be long.  Wearing wig to work & it looks good but not very comfortable, so might try something else.

 

xx  

Anon16
Member

Re: June 2016 starters?

In the same boat here, my daughters 20 months. Thinking of doing the same so booked to have cut into a bob this Friday then will get hubby to shave it when it starts to go and hoping she's used to the changes. I did look at some head scarves and think she might decide she wants to be the same as that instead so saw some ones for little girls but then I got a bit concerned I would be buying her a head scarf meant for a girl with cancer and decided against that. Seemed weird if that makes sense. So thinking maybe some pretty hair things will suffice though I came home yesterday with some popcorn for her to try and she was so into that she didn't even seem to notice I existed lol. The bob cut is along the same lines as the wig if I ever decide to wear it if that helps.
Millasmummy
Member

Re: June 2016 starters?

To the ladies with very young children, I will have to shave my head today or tomorrow as its getting quite patchy now. My daughter is just 2. When I had my hair cut from long to short recently she didn't even seem to notice, didn't even give me a double take. I said to my husband I want him to shave it and should we let my daughter watch, so she doesn't get to much of a shock when I have no hair. He thought it was a good idea. She is going through a phase of wanting everything that I have so will probably have a tantrum that I won't shave her hair after lol. I don't think she'll find it traumatic just fascinated? What have other mums done about this? Thanks xxx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi ladies,

Will think of all of you tomorrow and sending you Happy Thoughts. 

Tommorow evening I shall be half way through...

 

                                                  Poppy of strenth.jpg

 

Hugs,

Sue xxx 

 

kalimera
Member

Re: June 2016 starters?

Hi ladies, it's chemo eve again! We've celebrated by shaving my head and I must admit it's a relief not to have hair falling out all over the place anymore, even if I do look like a newly hatched chick!

10:30am for me tomorrow, good luck Belle and Millasmummy...So nice to think we'll have done 1/3 of the treatment by this time tomorrow Smiley Very Happy sending hugs out to everyone xx

Millasmummy
Member

Re: June 2016 starters?

Hi Belle, Glad your bloods are OK and that you've got your meds tweaked. My oncologist also said I could reduce the steroids as they made me a bit wired, so I'm just taking them for one day. Good luck for tomorrow. Xx My appointment is at 930am.

Hi Anon - my hair started falling out slowly at day 10 and I had it cut really short to get used to it, now on day 20 it's falling out with gusto and I have a couple of bald patches so I think I'll be having a no 1 very soon and I'm getting fed up of all the hair everywhere, I was blow in drying it this morning and was worried it was literally going to blow off my scalp!
Belle
Member

Re: June 2016 starters?

Hi Anon,

 

My hair started early and by Day 11 was coming out pretty fast.  I got a friend to take the clippers to it at that point.  If you go to the Chemotherapy - Tips & Tricks forum https://forum.breastcancercare.org.uk/t5/Chemotherapy/Chemotherapy-Tips-and-Tricks/m-p/1017289#U1017... there's quite a few posts on various options for headwear.  I've also posted a link there to Baldly Beautiful, a YouTube channel with videos on various ways of looking good during chemo but I found this video particularly useful https://youtu.be/JzdvFJ9lMzk Also the Pink Scarf & Fake Fringe by Sara from cancerhaircare.com http://cancerhaircare.com/page/talking-heads-tv/83 I can't link the video directly but it's towards the bottom of the page.  Most of the time I go bald but feel the need to wear make up when I do - not sure what that's about, confidence I suspect.  However, it's been too cold lately!

 

These two styles have become my favourites for scarves but I still prefer the slaphead look 😉 :

 

IMG_5304.jpgIMG_5300.jpgIMG_5285.jpg

 

I have yet to wear my wig.  It just feels, too, well, hairy!

 

B x

Anon16
Member

Re: June 2016 starters?

Your all amazing ladies.

I had fec last Tuesday and no sign of hair loss, didn't cold cap, think my head tingles but think that's all in my head. How soon did you shred or did you just go shorter / shave just in case. Anyone not lost any? I've got a wig but don't like the thought of it, having hair cut into a bob on Friday so is more manageable and so that people get used to me with different hair anyway even if it's temporary. Any recommendations on scarves or head wear or are we all rocking it just how it is? Thanks x
Belle
Member

Re: June 2016 starters?

Hi All,

 

Just returned from my pre chemo 2 appointment.  My bloods are fine so I'm good to go for tomorrow.  What time are you going in Millasmummy?  I'm in at 11:15am.  As far as hair went, I went down to a no. 1 right off.  

 

I had a great appointment with my oncologist - such a lovely man!  My worst side effect last time was nausea which lasted for 10 days.  When he realised I was already taking Emend, my oncologist called a pharmacist into the consultation to sort out what cocktail they were going to give me for round 2!  I was seriously impressed with the lengths gone to.  I can't actually remember what was decided in the end but will find out tomorrow.  So be encouraged, any of you struggling with side effects, they really will do their utmost to find a treatment that will work.

 

As for indigestion, they talked about all sorts and I think they've decided on another drug but it needs to applied for separately so I won't be getting it tomorrow.  My steriods have been reduced as these exacerbate indigestion and I was told to make sure I told them with food - pretty certain I'd done this but will make doubly sure.

 

So, bring on tomorrow!  I'll be one third of the way through then 😄

 

B x

 

 

Charissecarson
Member

Re: June 2016 starters?

Went for a number 4 initially just to soften the blow but then 2 days later took its down to number 2 as I was still finding lots of hair everywhere. I didn't want to go all the way to 0 as i wanted the hair to fall out of the scalp and not be shaved to the head and get stuck inside the pores. Not sure if that's the case but that was my thinking.

I have also felt a bit more tired from chemo 2 but nothing too dramatic. I did however suffer serious bone pain from the injections for 2 days where my whole body felt bruised, even sitting/laying down hurt but ibuprofen helped and it calmed down by day 3.

Good luck with your blood count Belle!

C xx
Bottyboo
Member

Re: June 2016 starters?

Hi Millasmummy I shaved mine on 3 but it looked daft so went right down to 0
Keep forgetting look in mirror and eek!!
Good luck tomorrow. I've found the 2nd cycle slighty easier. Although have rested a bit more in week 1.
Xx
Millasmummy
Member

Re: June 2016 starters?

Hi Ladies, I haven't posted for a while but have been reading everyone's post. Post day 10 of my chemo I felt fine back to normal self really, so have been back to work but finishing earlier than usual. Tomorrow I have second chemo, so have today been stocking up the food cupboard and cleaning the house, ready for feeling out of action. After 10 days of being normal and doing normal routine, tomorrow is a stark remainder of what I am going through. I hope all the ladies who have started this week aren't feeling to many SE's. I have also gone for the big chop, I had really long hair so was very anxious about it, but I actually love my new short hair and gutted it's going to fall out now!, but I will get it back one day!. It's day 20 of first treatment and it's really coming out now and I'm getting little bold patches, so I'll be asking my husband to shave it I expect by the weekend. What number did you go for ladies on the clippers? Big hugs to everyone. Good luck to all doing 1st and 2nd chemo this week and next xxxx