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
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.
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.
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!
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.
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,
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
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
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 😀
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
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.
I don't mind at all! They are as follows:
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.
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
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.
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 !
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.
Will think of all of you tomorrow and sending you Happy Thoughts.
Tommorow evening I shall be half way through...
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 sending hugs out to everyone xx
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 😉 :
I have yet to wear my wig. It just feels, too, well, hairy!
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 😄