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September Sunbeams 2014

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Re: September Sunbeams 2014

Tomorrow hospital to see if bloods are okay for second chemo. So scared that there will be problems as I don't want delays. Fingers crossed We'd second chemo.

My hair now looks like Golim from Lord of the rings. So patchy!

Good luck everyone.

Pam x
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Re: September Sunbeams 2014

Sorry - Mel and Nutty. Can't always remember the names, deffo got chemo-brain. Anna.

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Re: September Sunbeams 2014

Nutty-  this is so positive, will perservere with cold cap. Hair now falling out where the cap didn't touch .... and prickling feeling all over. Good luck all with bloods/meds/SEs/wig-chomping puppies and so on .... Love Anna.

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Re: September Sunbeams 2014

Thanks sampeds not complaining se,s not bad compared to some poor things on forum just seem to have lost my get up and go that's all take care x
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Re: September Sunbeams 2014

Hi girls,, PaulS I'm sending lots of luck and best vibes for no delays,, It's something we all dread but in the grand scheme of things a few days or a week here or there is not so bad, as long as you're well enough to get it done then that's whats important xxx
Hope your swelling goes down Den 😊,, it's unbelievable the amount of side effects this crap causes, but it's doing what it's supposed too so that's good!
So great to hear your still shrinking Nutty! More proof this is worth it I think!!
I'm feeling ok, just tired, braved the wind and drizzle for a quick run, I was so wrapped up you could only see my eyes lol,, mouth not to sore this time, so far, it's fec 2 day 8,, the Benzydamine mouth wash seems to be working still,, nap time,, all the best wishes and minimal se's, xxx Sam
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Re: September Sunbeams 2014

Hi paulS how as today gone hope good my feet have started swelling at times they say nothing to do with chemo luckly i have reclining chairssocan keep them up i think itmay be not enough getting long walks in likewe usedto soi will have try harder and move more hope everyoneok xc
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Re: September Sunbeams 2014

Hey Sunbeams,

Just had call that I'm to go in an hour early and have bloods done again as they are too low.  I'm really hacked off as I just want to get on with it and do not want delays!  I realise that I will be really upset if I'm sent home!

I used the cold cap and fingers crossed but although I have shed a little more hair than usual it is not huge amounts, so I will keep going.  I have been using baby shampoo, a little conditioner but only on the ends to make it easy to comb out with a wide tooth comb, every 2nd/3rd day, and use the lowest setting on the hairdryer and have been handling it very gently.  I also have thin hair, but apparently lots of it.

The treadmill has been great - 2nd hand, £100, but worth every penny.  I have used it every day, apart from the day after the first chemo, and am absolutely convinced that the exercise has helped me cope with the side effects.  The doctor from the unit called on Friday when I was on it to see how I was and she laughed when I apologised for the noise before I could switch it off, and told me I was clearly fine and to keep doing it if I can - even if I can't run as far, or for as long, as my treatment progresses.  For me this exercise started for the diabetes - I have now lost 7st 9 lbs and my HbC1a is 4.7 - which is more than half my body weight -  and I went for the treadmill as I did not want to go outside or to a gym, as it was too public and too embarrassing for me.  But I think that over the winter I'll be better safely indoors and not battling the weather. I realise I'm lucky, as this is still a lot of money and that some might not be able to afford it, but I bought it from Gumtree and there were cheaper ones. This one had been used to hang clothes on, and had only been used a dozen times, so seemed a good bargain. The hardest thing was getting it home, as it is SO heavy, and up all the stairs to our flat (I live in Edinburgh which has lots of tenements with stairs)!  Don't think it is going anywhere soon!

Hope you are having a good SE-free day ladies - I'll let you know what happens to me today.  I might be crying from frustration though. Warmest hugs. P xx

 

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Re: September Sunbeams 2014

Hi Mel, I too have fine hair, although the nurse said I had a lot of hair.  I'm trying to leave the washing for as long as I can.  Its great that no one can tell you've been through chemo - thats what I'm hoping to do.   The problem I had was the nurse looking after me wasn't very enthusiastic about it - but I really want to keep going as I've read that it can help the hair come back faster after.  Thank you for dropping by - its so good to hear sucess stories Smiley Happy xx

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Re: September Sunbeams 2014

Morning Nutty!
Hope you don't mind me dropping in here from the March thread, but I used the cold cap and it worked despite having fine hair before all of this happened. I used to was mine every 4th day. On the third day it would look awful but it was a sacrifice which paid off in the end. I used to wash mine with a 98% organic shampoo and conditioner using Luke warm water. I found my skin was very dry and the chemo went on so this was also good for my skin. I used to massage the shampoo on using the palms of my hands and pat the excess water off at the end. I'd brush with a wide tooth comb and leave it to air dry. It did thin towards the end with the biggest drop coming around chemo 2. I managed to hold onto it and it started growing back straight away. I finished chemo at the end of June and by The end of July it had all 'filled in' again. My hair still isn't back to normal condition but no one can tell I've been through chemo only three months ago! Hope my ramblings helped! Take care ladies,
Mel
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Re: September Sunbeams 2014

Morning Everyone – Hope you all had a good weekend. I’m on day 14 of T and I had a really normal weekend – went shopping with my daughter, went out for dinner yesterday. I’m feeling really good at the moment.   What a difference a week makes as I spent all of the weekend before in bed feeling really rubbish.

 

After reading about PaulS success on her treadmill I think I’m going to get one. Before this I was running a couple of times a week, I have been out for a slow jog a couple of times since but I thought as the weather is turning and I can’t image I will want to be running out in the cold this year - I thought the treadmill will be the best option for me.  I’m used to doing at least 10,000 steps a day but really don’t think I’ve managed that on many days in the last few weeks!  So even when I’m feeling rubbish – I can hopefully just go and walk for 5 minutes or so – well that’s the plan anyway.  Do you have any recommendations?

 

My little lump is definatley going - I’m having trouble finding it now – I can’t believe how quickly this has happened.  I still have hair – it has started to shed more now.  Just wondering how many times a week other cold cappers are washing theirs?  And are you washing with cold water?   When I have washed mine I’ve stood under the shower in the cold but now the weather is changing I’m thinking I might have to change this.

 

Hope you all have a lovely SE free day xx

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Re: September Sunbeams 2014

Sorry everyone what my post should have said is WE DO NOT HAVE TO PAY VAT. Must be my chemo brain! Off to watch Downton...
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Re: September Sunbeams 2014

Oh goodness, puppy attack! I will have to watch those naughty kittens, they get to the letterbox with a gleam in their eyes and teeeth bared, Lord knows what they'd do with a lace front wig, it sounds so dainty, quite the Jane Austen model ....Thanks for your great replies Beamers. Hope you have a great evening (Downton hurrah!) and get lots of well-earned sleep. Love Anna 

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Re: September Sunbeams 2014

Got my wig through nhs cost between £250 -£300 when vat off I was going to buy one but it was same more or less as one I got ! All family just gone home I have had a lovely day with them grandson 6yrs told his sister 2 grandma has no hair because of nasty medicine he, s not wrong ! Kids are great rant they wore bandana neither 2 yr old batted an eyelid good look anyone having chemo Monday x den
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Re: September Sunbeams 2014

 

Anna - my puppy LOVES stealing my wigs so beware with your kittens! I have two, one was human hair and cost £400 but it feels/looks beautiful and I have a cheaper synthetic one for work/casual wear which was about £150. Puppy enjoys them both equally! Emma x

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Re: September Sunbeams 2014

Lol Pam, I know what you mean about the headgear! For running I wear a sleep cap and a baseball cap on top, I think we are in a better time now though, fashion is so diverse and anything goes nowadays, does get bloomin warm though and is soaked by the time I get back,,, off for a nap now,, have a lovely Sunday night ladies, and hope the viruses stay at bay xxx Sam
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Re: September Sunbeams 2014

Hi Anna, yes mine was £350 minus VAT so about £280 plus the cleaning and care products, it's an Ellen Wille mono fibre lace front ,, and first time today I've worn it out and not wanted to rip my head off😀,, so that's a plus lol,, and my cat would have a field day too, I keep it on the little polystyrene head in my wardrobe,, I've got the benefit eyebrow kit aswell, got more products than Boots on my Chemo Shelf, I'll probably not even use half of them lol xxx
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Re: September Sunbeams 2014

Yep, I brought the paint on eyebrows with the wax stuff. Wig was around £400 soooo expensive but I'm gonna need it. My hair is a mess. It was my best feature so loosing this is hard as I have bits that are completely bald. Hubby said he would try to cut the rest off later today. Also feeling the cold on head but felt a real cool early this afternoon in my speed walk as I was wearing two hats. One sleep hat to hold the falling,out hair in place and a wooly one. Gosh was I hot and did I get some strange looks. At least people held their distance!

Just to remind everyone that we should have to pay VAT on our wig purchases but note not all wig suppliers will let you reclaim the VAT. Check before you buy...
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Re: September Sunbeams 2014

Helooooo, isn't it a great day???? I got the Browzings eyebrow  set from Benefit - little palette with dark wax you brush on and then powder up with toning powder. Cost £23. My friend with (total) alopecia uses the kit and you honestly can't tell that her brows are drawn on .... As for wigs, I haven't had the courage to get one yet. What have you gone for Beamers? Remy hair lace cap expensive or vinyl budget? What to do? Also I'm amused at the idea that my very naughty kittens would love a wig - to shred! They can't resist anything with fringe or dangly bits, and the thought of them running round the house with a £500 wig in their chops is pretty hilarious! Might save the money and go with the beanie/bandana plus false fringe combos. Hair comimg out in handfuls at base of head , where cap doesn't reach. Good luck with upcoming chemos and here's to SEs getting under control or fecking off altogether. Hope none of you come down with the sniffles, I've banished snivelling husband to spare room whilst I'm in the 'danger' week. Good strength and lots of love, Anna.

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Re: September Sunbeams 2014

Hi Den, yep, I've got the temporary eyebrow tattoos all ready in my "chemo cupboard",, I've heard that if we lose eyebrows/ lashes it's not until the 'T' part,, but pre planning and all that 😜,,, have a warm day xxxx
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Re: September Sunbeams 2014

Did you get eyebrows Sam and if yes r they good I am always cold so must be treatment poor hubby melting at times my scalp still hurting but stubble left havea gud day x den
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Re: September Sunbeams 2014

Ps ref wig,, I don't feel comfy in mine yet,, took it off in car after dinner out on Friday night, and I seriously contemplated flinging it off halfway through meal lol, bandanas and beanies or bald indoors, ,, I'm going to persevere with it, it looks fab, so I'm told, just wish it felt fab! Early days though, and my head/scalp has stopped hurting now, nothing left to hurt lol xxx
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Re: September Sunbeams 2014

Good morning Sunbeams 😊,, sorry for those with crappy SE, I've said it many times on here but I'll say it again lol, if you're not on it then ask for Emend, and don't let them put you off or sway you, it's designed specifically for chemo to tackle the nausea, I'm day 7 fec 2 and can honestly say my nausea has been very fleeting, I'm probably going to regret saying that 😜,, and I haven't needed extra in case drugs they sent me home with,,, yet 😳xx

Had family come yesterday, I've eaten for about 5 people lol, been running everyday and off for Sunday dinner later.
Hope you manage to avoid any delay girls, it is a dodgy time of year for all this, my brotherinlaw had sniffles yesterday so we stayed in separate rooms and antibacterial was basically bathed in!
I am feeling the cold so that must be a SE, usually I'm a windows open in winter girl, last night I'm wrapped in 2 fleeces, bobble hat and duvet, WITH the heating on, bizarre lol

Trials are a great thing to do, well done to you all taking part, my hospital is a trial one but they are having a 6 month break so I've just missed any,,

Have a good Sunday girls, thinking of you all,, we are Amazeballs!!!
Xxxx Sam
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Re: September Sunbeams 2014

Hope you like your wig I find mine strange still prefe bandana,s at home hope cold goes before wed its that timeofyear isnt. It iam trying to rest up a while got son daughter and all grandkids today don't know what to put on head yet this is first time but then. Awkward in kitchen if wearing wig !! Hope research does help in future one day it's hoped one jab like flu jab can prevent this horrible disease
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Re: September Sunbeams 2014

1852 - hospital just offered me the trail which as I say won't help us but will provide info for research. I didn't even say I was keen they just offered.

Pegee - sorry you are struggling with the sickness. I know this is horrid and hopefully by the time you read this you will fell a bit better.

Hair is now all gone and wig arrived today in the nick of time! I've also been avoiding hubby as he has had a bad co,d and cough as I have 2nd chemo on Weds and today I caught it.... Gosh I hope it goes before
Wed as I don't want delays on chemo...

Getting flu jab Monday as well...
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Re: September Sunbeams 2014

So sorry you've had such horrendous sickness Peegee, I only have waves of nausea and v little actual puking. The Metroclopromide holds it off, but I have to take it rigorously. Thanks for the heat pad idea - aches so bad today. My good pal who is on cycle 4 hasn't found her SEs getting any worse each time, so hopefully some of us will be similarly lucky .... Have a good evening and take care of any colds that are around us ... husband hacking and snivelling tonight. Agghhhhhhhh. Anna.

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Re: September Sunbeams 2014

I have Emend! They give one big dose about half an hour before chemo, and then one more for each morning for 2 days. Also Ondansetron. And Prochloperazine. After that, I have Domperidone every 6 hours which works well. I am going to see if there is more than can give me for straight before or straight after as it is the 12 hours after which are the worse (for me).

But we can handle 12 hours girls!! (I didn't think that on Thurs night)! But we can!!
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Re: September Sunbeams 2014 - wig

Really hacked off now as have a bit of a runny nose so may be getting the cold! Do NOT want my next chemo scheduled for Monday postponed. On couch in dressing gown trying to see if it will miraculously disappear. My temperature is normal - 36.6 - so hopefully it's nothing. My sister and brother-in-law were coming this evening but she has called to say she is not that great and is anxious about bringing germs near me, so my nice evening has now completely gone to pot!
Peegee - so sorry to hear the second one was worse for you! Have been reading the August thread and apparently Emend is the best anti-sickness drug so perhaps you should ask for that one. I think I will now having read your experience! Isn't this hard. P xx
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Re: September Sunbeams 2014 - wig

Wig arrived so feeling a little more secure.

Peewee - gosh I hadn't expected second chemo,would be harder. Did they change your drugs? I have mine on Weds and I want it but am a tad scared as first one was horrid with sickness.

Px
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Re: September Sunbeams 2014

Hi Sunsters, day 3 of FEC2.
The first 24 hours were worse this time. The nausea was off the scale. I had expected it would be better as had the first anti-emetic IV instead of tablets, but clearly not enough! Very tough.
Feeling better now, sure the worse is over.

With my bald head and bony flat chest, am also rocking the Gollum look ATM.

Goodness me.

Hopefully will make it outside tomorrow. For now, hot chocolate and Domperidone. cheers!
x
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Re: September Sunbeams 2014

Yep I have the aching hair. What's left! I'm hoping my white blood are okaybut won't know until Tues. Ive been eating good stuff so fingers crossed.

I certainly don't want HUGH chemo as the first was was big enough!

Enjoy your weekends.
Px
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Re: September Sunbeams 2014

Off to buy spinach and kale. Apparently they increase white cell count. So hacked off as feel fine today and wanted to do lots but now avoiding people do I don't get an infection.
Nurse told me a heat pad will help the aches. Bought one in Argos. Have a good Saturday Sunbeams. P xx
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Re: September Sunbeams 2014

Hi there, I feel like I have HAD huge chemo. Bones all aching today ... white cells dying off? Boy this stuff gets everywhere. Anyone lese got aching hair? it's so wierd. Love to you all, Anna.

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Re: September Sunbeams 2014

Hope they don't give you huge chemo, PaulS, normal one is bad enough!!!! 🙂

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Re: September Sunbeams 2014

We used to use it at work before giving painful inj it had to be put on 30mins prior to injection hope info helps hope w/end goes infection free PaulS hi Murphy welcome. To forum Emma glad your ready for chemo. Monday x den
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Re: September Sunbeams 2014

Hi Murphy, I'm day 9 of 1XFEC (5 to go), so we are at the same stage ... lots of Beamers are a bit ahead, which is great as they can give us the heads-up of what's to come. To protect against acid reflux they gave me Omeprazole (didn't get on with Lansoprazole, it gave me gastritis). Tummy protector important on the steroid days, as appararently steroids can damage the tum. Have they given you Omeprazole?

 

Another question to all - has anyone used anasthetic cream (Emla) prior to cannulation? They used it on my daughter when she was tiny, and she didn't feel a thing .... have bought a tube (£3.76 Boots), and will ask if they might be kind enough to help me as I am a huge baby with needles. Love Anna

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Re: September Sunbeams 2014

The chemo, not huge chemo!
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Re: September Sunbeams 2014

Just had call from hospital that bloods low but the oncology team will give me huge chemo as long as I feel ok on Monday. I'm to take my temperature four times a day over the weekend and call the chemo helpline if any sign of infection. The doctor called when I was on the treadmill and when I apologised for the racket in the time it took me to switch it off she laughed and said I was clearly fine and to keep exercising. But tempted to stay in over the weekend in case I puck up something as I don't want it postponed. We psych ourselves up so postponing would be so hard. My husband has been making my soup for the next round. Let's hope there are no additional smells to add to the list that already turn my stomach. Have a lovely Friday evening Sunbeams. P xx
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Re: September Sunbeams 2014

Hi all

 

I had my bloods and clinic today before my second FEC, all fine, doctor said its worth giving cold cap another go on Monday as I still have some hair left (although much thinner!) so really hoping it might ease off on the shedding. I gave my wig its first public outing with friends yesterday, really great response so I braved it again at work today. It's actually really nice to look in the mirror and see a full head of hair again!

 

I have been given Emend for nausea as suffered pretty badly last time, has anyone else tried it? Doctor said it was 'the good stuff' so feeling optimistic!

 

Hope everyone has the best possible weekend!

 

Emma xx

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Re: September Sunbeams 2014

Hi murphy and welcome! Get some lansoprazole or omneprazole from docs for acid, works a treat, in the meantime guzzle gaviscon xxx I'm off for a meal out, have a top Friday night ladies, xxxx
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Re: September Sunbeams 2014

Hi ladies, Murphy here from oct 14 group. Day 10 after 1st fec. If it's ok with your lovely group, could I join you too since I'm a bit in the middle? I'll give you my story later, have been following your group since you started so feel I know you all so well already.

Never had it before but think I have acid reflux. Just off to chemist to get something, any recommendations?

Speak more later xxxxxx
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Re: September Sunbeams 2014

Thanks for responses re moans and I agree we have to get on with it and enjoy as much as pos when up to it when I have bad thoughts it's usually about what happens when this treatment over and inv of bowel polyp starts just worry more chemo ! Hubby as now got appt to see surgeon re fistula looks like surg in new year for him ! Looking forward to having kids and grandkids at w/end they are what keeps us going xx
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Re: September Sunbeams 2014

Hello dear Beamies, so good to read all of your great advice, moans, breakthroughs and progress. How amazing are we? So sorry if I sound like a Country Singer, I do tend when I care about things ... So here's to kicking cancer's sorry, misguided ass, feeling the chemo go attack! attack!, listening to our incredible kids, enjoying delicious curry and noodles, walking without wigs slipping, not having diarrohoea in ASDA (sorry to be gross, it was truly appalling) enjoying oodles of saliva (real or synthetic ... gross again) and just getting on with it. Whatever IT throws at us. Have a fecking nice day, love Anna.  

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Re: September Sunbeams 2014

Whitfield - you can say whatever you like here! We must all feel we can. But we need to be positive as well when we can and look to the future because our outlook really has an impact on how well we do overall! So pleased to hear your tumour is shrinking and that your scans were clear. Mine were too, and it is such a relief, I know, and we are so lucky they are and that is such good and positive news.
Take care and have a good day.
Best P xx

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Re: September Sunbeams 2014

Yep, I was just getting that mortality thing out there as I know we don't like to think about the negative. I'm TNBC grade 3 and know the reoccorance rate for this type is double other types of BC. That said, I think my lump has gone down since first Chemo (fingers crossed) and I'm lucky that the CT and bone scans were clear. My intention is to stay on track with treatment and do what the specialists recommend hence my having chemo first.

Today seems to harder for me but I'm sure we all have days like this and we CAN pull through.

Pam x
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Re: September Sunbeams 2014

If there was a like button I would press it paulS! I feel exactly the same 😘 xxx Sam
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Re: September Sunbeams 2014

If we can't moan here then where can we moan!   There are so many things that I can say here that I can't/won't say to close family and friends.  So go for it ladies!  Get it off your chest (did you like the pun?).  Sorry.

Re mortality - we are all mortal!  I said to my surgeon that this had been a  hellish year for me - diabetes, eye surgery and now I have breast cancer, and he said - 'You do NOT have breast cancer now!  I have done my job with the two surgeries and removed it, so do not think like that!  The chemo and radiotherapies are to make sure no rogue cells have escaped'  Get through this next bit then get on with your life!  And take the drugs for 10 years'.   We need to be positive and not go through all this and then waste it with worrying and lots negative thoughts. I know it is hard, but we must do this as otherwise what is the point of it all?  So, moan all you want through chemo and radio, and about hair and everything else, but after that it is the rest of our lives and I for one plan to live it to the full as healthily and as productively as possible.  You sound a lovely bunch of women who are having a hard time but it will end and it will get better for us and we can meet and share and enjoy things again.  That's the plan!!!!!!  My oldest friend is now in year 13 post BC and is just great and I plan to be just like her.

Hope you all have a great SE free day. P xx

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Re: September Sunbeams 2014 - hair loss

Hi pam any try trial that will help others must be worth it good on you how did you get on it ? I still struggle with mortality of people with tn bc but things seem to be getting better hope wig fitting goes ok had mine on all day yesterday still feel conscious in it and feel it's moving so check it frequently glad mouth better ness enjoy your curry x
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Re: September Sunbeams 2014 - hair loss

Goodness my typing is bad. Sorry many typos!
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Re: September Sunbeams 2014

Hee hee glad you're happy with your new saliva Ness, it's good stuff eh, who'd a thought it!
I'm with you all the way, I appreciate all the small stuff, and this has all put so many stupid things into perspective,,,, I will still use here as a good friendly place to have a good old moan though lol, when needs must 😊 xxx have a great day xxx
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Re: September Sunbeams 2014 - hair loss

Sampeds - I'm with your daughter and the hair loss. Mine is really coming out as not doing cold cap (oncologist said I would loose it no matter what as doing Tax after FED) and my view is the chemo is working otherwise the hair would still be with me. I know it's hard as even as a child I was never bald. It I'd the hair is the only thing I loose then I'm a winner.

I'm struggling with the mortality issue and I have offered for a trail for the hospital to take aother bio of the cancer bedore my second chemo. The research will not help us but will help I cersta d TNCB for anyone u fortunately enough to get this horrid decease in the future.

Wig lady is coming tomorrow!

Pam x