Starting Chemo April 2015

[newey47]

well get a bloomin take away.  Do the in laws not understand at all? So selfish of them. All they think of is themselves, best not to be out and about at this time, never know what u will pick up, and its such an effort too.......

Dont like S & V crisps atall usually, so maybe I will now lol - who knows

Yep buttered cabbage with black pepper is fantastic, mind you fresh green beans out the garden tonight were lovely too.

You take care and dont do anything you dont want to and YES you will have your happy head on again in no time - have faith xxxxx

Val xxxxx

[newey47]

thanks T3D - hope all goes well for you on thursday then.  Such a milestone, does feel a bit strange though tbh 

Val xxxx

[Eira70]

Glad u got the dress Moll. I'm so sick of wearing my fat jeans. Glad to hear u have had a day taking it easy and u 1981mum.
Another difficult day with in laws visiting. They made themselves lunch without asking me if I wanted anything. I know I'm extra angry at moment but come on. They want to go out for food tonight. Really nervous about going into busy places this week with WBC low but can't face cooking for them . Will I ever get my happy head on again. Xxx
Salt and vin crisps from M&S good today.
Buttered cabbage sounds surprisingly good Val.

[T3D]

Well done Val. Congratulations on getting through it. Have my last one on Thursday and can't wait to get it over with! Hope your side effects are minor this time. X

[newey47]

I know how you feel Moll.  sometimes I have been up for a lot and then collapse in a heap and cant see it through, we are all the same I am sure.

Its usually when I go shopping, think I am fine, walk round slowly, then bend down get something, and feel faint when I stand up and really dont think I can finish the shop.  I always do, but not sure how sometimes and then a long drive home.

I am sure its the cumulative effect of all this chemo.  But we are all nearing the end now thank goodness.

Dont be too hard on yourself, your sisters are all going through the same.

Val xxxxx

[newey47]

your prob like me, dont enjoy what your eating but know it tastes good, I am trying to convince my brain to taste what I am eating rather than taste buds.  Fresh strawberries from garden yesterday, have not been enjoying them, but last night put the cream on and convinced myself they were lovely, which of course they are, but damn taste buds dont recognise it.  Pie for me tonight, with fresh 3 colour french beans from garden, have been enjoying green veg especially cabbage, such strange things to enjoy cos very bland tasting really.

buttered cabbage has been my mainstay, forgot to add that to my list......

val xxx

[newey47]

Oh well ladies - thats it - back from last chemo......all went ok and on time.  Feels really strange tbh, feels great that I dont have to have any more, but a little strange that that part is all over, no 3 weekly appointments in the diary any more. Just waiting for Radio planning appintment to come through now.  I was told my haemoglobin levels were a little low - 92 and they like it over 100, and I might need a blood transfusion!!!! fgs!!!! asked how I had been feeling. Actually I have been feeling ok, apart from taste buds, have done breakfasts and rooms, washing and ironing, shopping etc, part time job etc.  I really wasnt aware that I felt ill - she asked about breathlessness, said I did get that in the evenings, but Onc just said it was cos I was tired.....I do rest in the afternoons and evenings and dont overdo it. Nurse just said see how I go and if I do get more breathlessness etc to phone and they would arrange a blood transfusion and I would feel a lot better.

So you just think you are over it and they throw that at you.  Dont really want a transfusion, I think I am ok. Nurse did say some people manage ok on 92 will  just see how I go.

Hope everyone else is feeling not too bad.  I know what you mean about doing so much and then collapsing in a heap and realising you have overdone it, however little it is.  Its just cos we are so far down the line in this chemo lark, it is taking its toll.  Never mind we will all soon be over it wont we.

Keep strong ladies xxxxxxxxxxxx

[1981mum]

Mol ! You do take on a lot, but hope you enjoy the wedding
I'm better, temp back to 37.6 so should be ok. Lazy day on the sofa almost done looking forward to oh getting home for some company must try not to go to bed at 7.30 again 🙂
Sausages tonight ... Don't expect to taste much but know I have to eat

[Molliana]

🙂
I bought the dress. Nothing like what I would wear usually! It's got butterflies all over it! And it's cream coloured! I have pale skin! Still. It's someone from work who has got married. I have been working all through chemo and only just have been signed off for two weeks. I could wear a bin bag and i am sure everyone would still say I look great.
I am ok when I wake up. Been dozing this afternoon and don't feel too bad now. It's just I can only manage about an hour or so of normal activity before fog rapidly engulfs my brain 😞 x

[Eira70]

Molli u sure do push yourself. I think these last couple of chemo r hitting hard and I feel hardly able to do anything so don't b hard on yourself sometimes your head may be willing but body not. However, my head is also rubbish and it's hard when u r feeling so tearful isn't it. I feel like I can't even finish conversation with people I've started. But did u get the dress?
Well done Val, hope next few days ok. Interesting food ideas. Had toasted cheese sandwich today(mature cheddar) actually enjoyed extra salt of course. 1981mum any better? Xxxxxx

[Molliana]

Val. Last one! I had my last one last week. I am so pleased we are all getting there. I must say I feel terrible. I thought I would get two new front tyres on the car after dropping son at childminders, So I did that and felt ok so thought I would look for a dress to try and make an appearance at a wedding reception on Friday. I just go rapidly downhill! Shop wouldn't change my twenty to park with. Tried to get a ticket on the phone and it was asking how many days I wanted to park for! Bought son a toy dinosaur and then ticket machine wouldn't work so walked right up the street to another one. All the while my energy levels were just disintegrating! By the time I was stuck in a dress in bhs holding onto the changing room walls sobbing for ten mins I knew I had overdone it!

[Molliana]

1981Mum bit worried about your temperature. What is it today? How long ago did you have chemo? xx

[1981mum]

Oops meant weeks not works ! Bloody phone
Thanks for the tips in food, shall give KFC a try this week x

[newey47]

and meant 3 weeks radio treatment, not sure when it will start but usually 4weeks or so after chemo finishes.  Guidelines are within 30 days - so we will see 

Val xxx

[newey47]

Oh I had 6 chemos, 3 xfec and 3 x T, think thats what you meant.  already had Mx so not shrinking anything so straight forward 6 for me.  Val xxx

[newey47]

I have found a few things I like with these damn tastebuds:

Kentucky Fried chicken, lovely tastes really good enjoy that, had twice in last few days and might have more today as visit to hospital and have to pass it

Cheese on toast

Pink salmon, mayo and cucumber sandwich

white toast, butter, raspberry jam

Hot Dogs, Bratwurst best, but other chilled hot dogs a close second

steak

pies

worth a try although I know we are all different

Val xx

[newey47]

works?? mum, im having three weeks, 5 days a week for rads so 15 altogether.  They havent mentioned boosts or anything.  Expect they will sort that out at planning meeting.

Val xxx

[1981mum]

Yay Val ! Get this done and onwards and upwards
But the wait for the taste buds !!!!! God I dodnt expect it to be that long x keep us posted on your treatment and yes 3 weeks to radio sounds good, keep the train moving and get it all over with
How many works are you having? I was told 4-6 depending how chemo went x

[1981mum]

Just had breakfast .... Bleugh why did I bother just tastes .... Grey mush but should of been yummy eggs
I went to bed last night with a temp of 38.1 , hoping the paracetamol kicks in today as throat getting soarer by the minute
Really is pants , but I hate moaning to oh , he must be so sick of my moans and complaints
I've got ice cream for lunch 🙂 hoping to taste that at least the cold will feel good on my throat x
Hugs to all, get through the day and hope for a better one tomorrow x

[newey47]

Hi Ladies, not posted for a while just been getting on with it tbh.

Anyway, big day for me today, last chemo at 12.00pm, never thought this day would come.  Actually feeling quite emotional tbh dont know why - its a big big step I suppose.  Onc says could be a couple of months before I get taste buds back so thats not good as food is a real problem at the moment.  Still all be worth it and will look forward to a slap up meal and loads of wine when I do get them back. Local pub look out, in fact all local pubx and restaurants look out as I intend to visit them all lol.

Waiting for a call from radation department now to arrange the next stage of treatment.  Onc says 3 weeks now not the original 5 weeks they said....so thats a lot better.

Hope you are all doing as well as you can.

Val xxxx

[Molliana]

I had 11 nodes out too and only one was dud! 🙂 My tumour was 3.7cm tho but I was her2- and grade 2. I only had Fec tho. I guess you have herceptin for the her2 and you had tax. No need for rads x
I seem to have lost my personality somewhere along the line. I will worry about piecing that back together once I start feeling better. Hugs to you all xx

[Cocolily]

Don't worry Eira70 about your mood.. I have lots of down days .. Also worried about grade 3 and Her2.. Hoping one day I will not worry and just get on and enjoy life.. Dr gave me antibiotics for throat infection ..so that should get better soon x

[Eira70]

What did I fill my head with before this started. Did I really worry about such silly thingsx

[Eira70]

Thanks Molli that does help. I had Mx and 11 nodes out which one was dud. Tumor 2.2 cm. I'm always so consumed with grade 3 and HERS + can't quite believe when chemo over that's it. Well along with Herceptine and hormone tabs. Xx

[Molliana]

🙂 I have read back a couple of pages while waiting for these sleeping pills to kick in! I had mx (with recon). I am not having rads. My oncologist said there are only three reasons that you would have rads after mx and they are: if you had four or more lymph glands involved, or if they didn't get clear margins, or if the tumour was bigger than 5cm. If none of that is you then you have to wonder what would they be shooting at? Hope that helps xx

[Molliana]

Sorry not Egret (Hi tho) I meant Eira70 x

[Molliana]

What surgery did you have Egret?

[Eira70]

Hi everyone, hi Cocolily. I have had x5 rounds Doxetacel and have found it pretty tough with all mentioned SE. I had throat infection last round but also have very sore throat this time. Aches and pains last about 10 days. I am week post no.5 and feels like the worst. Prob is I think I get less able to look after myself and my OH not much idea. Feeling pretty low. Normal diahorrea and banging head today. I feel sometimes like everyone just expects u to cope and because it's almost over it's ok when actually it's so much worse. I was cooking food for my husbands parents who r visiting from Ireland for a week tonight which I couldn't eat thinking what am I doing.
Also feeling worried why I'm not doing radiotherapy. Can't remember why they said I didn't need it. I had one node involved can any one tell me why.
Sorry bout neg mood. Xxxx

[1981mum]

It's so different for everyone , I've found T much easier, do my injections tea time the paracetamol at 5pm and bed time and I'm ok till morning. Have another 2 paracetamol when I wake up. Aches are bareable , mouth is vile !

[Cocolily]

Thank you .. FEC was ok and manageable but Doxetacel I've had so many side effects .. Was up all night again with aches in legs .. Rash on face - make up on every day !! And losing voice since day before chemo think maybe steriods started it .. Yes just finished 7 injections on Friday .. Diahorrea every day but not losing weight ☺️ would be bonus if I dropped a couple of pounds as I have put on 1 stone since chemo started .. Yes nearly there and really can't wait .. Seeing my surgeon Wednesday as 2 Wle with no clear margins so maybe Mx for me before radiotherapy .. Hope everyone else is ok

[1852]

Hi coco lily I am from sept a lot of pains come from injections if you having them I had a lot of pain from doxitacil and sore throat/glands got tramadol for bad days hope this helps you are early there DEN

[1981mum]

Yes coco, my aches last about a week - 10 days before I feel better x
Horrid isn't it! But we are all near the end of our chemo now

[Molliana]

Cocolily you are one of us 🙂
Tho I am not on tax so can't comment first hand but I am pretty sure it's normal. I am sure someone will confirm xx

[Cocolily]

Chemo 5 I meant to say

[Cocolily]

I started chemo in April and read your posts every night .. Hope you don't mind me joining in .. I'm 9 days post doxataxel and am still having bad aches in legs and also have a sore throat and my each afternoon I have lost my voice nearly .. Anyone else experiencing this ?

[Molliana]

Yes! That's the final hurdle xx

[1981mum]

I know, just want it gone now, roll on surgery !

[Molliana]

I think we need not worry about it not working. We hear so many stories of tumours shrinking. The results can be amazing and there is no reason to think this is not happening with us xx

[1981mum]

My eyes are holding up, I find them less sore without make up so hibernate indoors whilst I look such s state 🙂

[1981mum]

Mol hope your feeling better x
Not experienced anything like that but also not left the house alone until at least day 6 recently as I get very dizzy
I'm sitting here feeling ok ish and worrying it's not working, this is my new freak out. MRI withdrawals lol

[Molliana]

I thought I was ok this morning. I slept reasonably well due to the sleeping pills. Had the intention of going to sainsburys and then a quick look round the shops for a dress to wear on Friday to a wedding reception even if it's just for an hour.
By the time I got to sainsburys I couldn't think straight. I got into a state in the car and pulled myself together long enough to walk steadily around sainsburys like I had escaped from the local asylum. Then I just about got myself home. It honestly feels like drugs fry my brain. My eyes start shutting and my head is a foggy mess and i start to shake. Then that starts off a panic attack and I end up crying and unable to breathe. It's bloody horrible. I abandoned ship and just got up from three hours sleep feeling at slightly functional.
Does anyone else feel like this? 😞 it's horrible and scarey 😞

[T3D]

Hi huneebee although you will look rather shiney, and I wouldn't recommend it if you're leaving the house, I have applied a thick layer of Vaseline all around my eyes and although it hasn't stopped them watering it's really helped to protect the skin so I'm feeling less sore now. Hope it helps you too xxx

[Huneebee]

Yup, watery eyes this time. Which are getting quite sore. Not sure why, or what to do about it.

[familytree]

I had my first one Friday and they give me a list of dates for the whole course. I am relieved to have had the first one, it's the unknown that's scary but it is truly fine! Good luck x

[1981mum]

Thanks so much for the info x

[Tussie]

1981Mum, I have had 1 week of radiotherapy now. You will be called for a mapping session where they do all the measurements and plan your treatment. Explain about the baby and I am sure they will do everything they can to accommodate your needs. I was given a choice about appointments times for the whole four and a half weeks. With a baby we all know that things can change quickly and with the best will in the world you may have to make last minute changes, I am sure the staff will be very sympathetic. The treatment is pain free , quick, you are in the room about 10 minutes and off you go. Look out for redness of the zapped area. Moisturise with Aveena or any unperfumed product and use roll on deodorant, not spray, that was the only instructions I was given. Good luck xx

[Molliana]

After my lumpectomy I do remember it getting quite sore. Like the nerves were coming back into feeling. I then had a mastectomy so can comment long term. My recon is usually reasonably stable but I do find it more sore when I have had a round of chemo. Like the chemo sets back the healing process a little. You don't think it's that Egret?

[Molliana]

I have super watery eyes. Not right now but I am expecting it to come in a week or so. I had could hypromellose drops but they didn't do much for me so I usually just ride it out. I struggle to see and my eyes get puffy too.
1981Mum as far as I know here they give you a long list of prebooked appointments. Also I gather you are only in there for five mins at a time. It's the travelling that's a pain. Travelling all that way for a five min appointment. I am sure they will try and work with you with your child and slot you in at a decent ish time for you. Make sure you ask xx

[T3D]

Has anyone else had super watery eyes and does anyone have a tip tip for helping with it? My eyes are streaming and where the skin round my eyes is wet all the time it's rather sore and just to make me look even more of a babe My eyelids are puff, Aren't the irritating side effects annoying!

[1981mum]

Sorry Hun, still got mine so can't comment
Egret - feel better soon x
Anyone had their radio appointments yer? I'm curious to see if you pre book a time daily or make a new appointment every day or just how it works generally? How am I going to do this with a 6 month old baby in tow ?