September Sunbeams 2014

No problem sampeds
Lucy x

Thankyou Lucy! , now I feel we have the power , easy for me to say, as I don’t start my first until Monday, but the surgery has been quite hard hitting, the chording is pretty painful,been doing all physio, it’s mainly elbow to wrist, only been 3 weeks, so I’m just impatient I know.
I’m not as calm as I like to be in life, and that is peeing me off, ran 5km today, it was so hard after a month of bugger all, I’m not in la-la land though, this is huge, it’s not what any of us envisaged in our lives, it’s a complete game changer, from the things you’ve booked, an 80’s night at Whittlebury Manor next week with mates, to your sisters wedding in Mexico at Christmas,that’s been booked and paid for, , it’s all messed up, but it’s not the end of the world, it’s not a terrible life, it’s a blip in the path, and it’s a few months out, to get many years in,
Hope you’re good Rachael xxx

Hi All,

I’ve changed the name of the thread to September Sunbeams 2014.  Just testing to make sure it hasn’t reverted back again.

Best wishes

Janet

BCC Moderator

What a night…no, not in that way ladies!!  I have myalgia from the herceptin. It’s in my back and legs - can’t get down stairs which means i can’t cook, clean or do anything.  Mmmmm, maybe have to milk this a bit me thinks!!:smileytongue:  Help line said they would tweak my next dose to try and prevent it happening again.  Also have the delighful thrush starting in my mouth.  

Jjordi, you’ve put me in the notion for a twix.  I made tomato soup yesterday and told my daughter in law I used 2lbs of bananas to make it.  She just gave me one of her looks. 

Ade xx

Hi Ladygrey,
My lovely dentist (Irish Garth with the piercing blue eyes and gentle southern Irish accent ) told me to dissolve bicarbonate of soda in boiled cooled but warm water and use to gargle. And to buy the new Cortasil mouthwash alcohol free and use several times a day.  Have been told mine will start on 11th, 12th or 15th - gulp!  All seeming very real now. And I STILL can’t quite believe it is happening. 

Love the banana soup!

P xx

Hey sunbeams I’m back! Well that was one shell of a day yesterday!!! But just to reassure, it was all quite straight forward. I think the hardest part for me was being on the unit with many people struggling with the disease in all forms ( even met someone there having treatment from high up in my profession!- surreal) Anyway tried the cold cap. Was so scared but didn’t find it bad at all. Like having a wet towel wrapped round head. I’ve had worse lol!  The drugs went in fine with a nurse with me for the main. Going home on the bus with a head full of conditioner was a bit shameful so with sort that next time. Was there for 4 hours as had to wait for bloods and consent signing. Atheism a horse when I came home. Didn’t want to have an empty nauseous stomach …that’s my excuse anyway…I’m going to try and eat healthy food mixed with whatever I fancy. Also a daily brisk/ gentle walk. Woke at 5.30 paranoid a out SEs!!! Taking all sickness meds and no nausea yet. Red face ( looks healthy) slight sore throat and hangover type heavy head although at the moment not a patch on the shockers I’ve had in my life!!! Will report back later. Allowing myself a proper lazy day and daughter to dad’s later so can lie around as much as I like! Sorry Lady to hear about your difficulties.What is that condition? Jiordi set are setting the bench mark for me! Can’t wait to get to day 6…I’m sure we’ll get used to it!!!  I feel like I’m living in a parallel universe right now where you’ve still got to make the dinner! Xxxxxxx much love to all you special sunbeams xxxxxxx 

Sorry for terrible predictive text…lol meant ’ eating like a horse’ and the one in the first sentence! 

I’m going to try bicarbonate today PS and Samps sorry you?'ve had so much disruption to you’re. This is definitely a huge part of this. Let’s pray our journeys are short and we can get on track with a better life after…this sure is, possible hun xxxxxxx 

Pleased to hear all went well Rachael.  Paul, i’m going to mix up some mouthwash.

I have a heat pad on my sore back and it’s bliss as is the waiter service my husband is providing.  going to go for a walk soon as it appears exercise is the answer…

Ade xx

 

Afternoon Sunbeams, sorry to hear about your myalgia Lady grey, if it’s not one thing it’s another isn’t it! Heat pads do work wonders, and I’m glad you’ve got a good waiter, it does help doesn’t it lol X
Paul your dentist sounds lovely, Garth, it’s very Mills and Boon, I read way too many of those as a teenager!! I know what you mean about the waiting, 2 weeks on holiday zips past, this has been a LONG 2 weeks, just want it done!!
Rachael it’s great to know you’re not as bad as some, I know it’s early days but if I can copy and paste most of your post on Monday I’d be sort of pleased, if you know what I mean lol, I’ll maybe leave out the atheist horse bit ?, yes I was feeling a tad sorry for myself last night, had a couple of glasses of red wine, first drink in over a month and I got a bit emotional, I’ve turned into a lightweight lol, I’m not gonna drink now till after my chemo, best laid plans and all that lol,

Glad your ok Jiordi, if our memory gets worse then I am truly buggered, I have trouble now, much to my daughters frustration, “mum!! You’ve told me that 5 times already!!”,?,

Right I’m off for a nap, hope they give me something to help me sleep during this, Nytols and calms aren’t doing anything, wine didn’t even help last night!! Take care ladies, and don’t overdo it!! Xxxx

Well blow me down…I phoned the doctors this morning to get meds for thrush. Didn’t hear anything so phoned back at 4pm.  They said they’d had an emergency this morning and when I pointed out that i should have been dealt with in the hour all hell broke loose!!  I’ve had 3 calls from different doctors to apologise and a call from the receptionist to apologise.  Was reassured this wouldn’t happen again?!  

Nose bleeds started…anyone else?

Ade xx

Wow Lady…but they do emphasise that we are to be taken very seriously…that overstate that because they know our side effects can be serious and escalate quickly. It makes me take it seriously whereas usually I wouldn’t complain. Such a mind shift for me.so glad they were apologetic.

Paul’s…oh the wait was hell at each stage…I completely am there with you xxxxxxx it’s not where you want to be but you Will walk out the hospital feeling ok .it’s lovely to go home and to do what you like to do. I did find it quite emotionally draining. Xxxxxxx 

Samps. … I do feel lucky no sickness so far…taking all meds on time and eating and drinking loads. Will take all meds even if I don’t feel sick. 'Athiest horse’s lol I do make myself laugh! Lol

Had a mini meltdown today though. Heightened awareness because of being on the ward yesterday. Felt a lump under my reconstruction and I freaked out.7 weeks post surgery about

Nd still sore and lumpy. Had to phone breast nurse because I need it checked.sure it’s scar tissue but I think now I will always worry. She hasn’t got back to me yet. Always something new to worry about and wait on…can’t remember what it’s like to be normal. 

 

Went out for a walk and feel better. Was quite amazed I could do this and went to the local shops. Early days but hoping my dosing was right and keep taking the meds xxxxxxx 

 

 

 

 

 

 

 

 

Morning everyone, think I’ll need to change my name in here.  I used my own name and was told to use another - the only one I could think of was the name of my old horse Lady Grey!!!  Offt, than seems a million years ago.

I’ve managed to get up and get downstairs this morning.  Myalgia has abated to manageable level.  What a difference a day makes and the right pain medication.  My mouth is a somewhat different story but it’s doable.  My doctor gave me mouthwash, Benzydamine spray to numb the soreness,  Nystatin for thrush which he said tasted awful but as my taste is ? I rather liked it!!  I also got paracetamol, Ibupropfen and 40g of Omeprazole to take daily backed up with Gaviscon when required.  All in all I have a fair old box of goodies.  never been one to take even a painkiller but now is not the time to be brave or gung ho.

Pauls, i think you shoud give yourself a huge gold star for losing all that weight…very well done.  Your doc is right: we just expect to be back to normal, whatever that is, after such invasive actions on our bodies. I felt as though I had spiders crawling up and down my arm after my op.  I think you’re right in that exercise will help us find our way through this jungle of emotions and crappy side effects of treatments.  

My tip for today is to get a heat pad for your back…this was my lifesaver yesterday.  

Love and hugs to all. Ade xx

 

Good morning peeps, hope you’re feeling ok Rachael and the meds are working!
Lady grey I think your name is very sophisticated! But if it’s not floating your boat then go for a change!
As I said before Pauls well done on your battle and winning it, it sure is good to stay fit, but after reading SOOOO many stories on the threads I think it could be a struggle to keep up our running, but everyone is different so you never know!!
I’m off for my pre-assessment at 12, after reading, slightly obsessively lol, so much on here I feel I know what drugs I want and what I don’t, I won’t tell them that though, don’t think it’ll go down to well lol,but I’ll know to ask if something isn’t working, that’s what has stuck out to me,and also the postcode code lottery, it’s really apparent that it very much depends on your health authority as to what drugs and treatment you receive, shocking really, it should be the best for everyone!!

Have a great day Sunbeams, a bit of sun would be welcome!! Xxx

Well done Paul’s on your incredible determination. What a reassuring post. Thank you so much. This disease and all the effects it has on your mental and emotional state! Spoke to my breast nurse today finally ( something I’ve learned you have to be proactive and push…also don’t accept one opinion…even members of the team in the hospital give you different advice…I asked a out wigs as nobody had given me any info and the registrar onc said they didn’t do them at Barts and then the nurse gave me a catalogue!) Am arranging an examination . That really tipped me over the edge for a bit yesterday. Let us know Samps how you get on today. It s so true. There are people being treated in Barts who come for Scotland because there authority can’t give them the treatment. And it all costs so much money! It makes you think a out the drug companies and the value of our lives…Sorry that’s a bit heavy but having the chemo has made me think these thoughts! Ade, glad to hear you’re feeling better.I definitely think you have to manage the drugs. I feel ok day 2 but am still lounging! Dry mouth so need lots of water especially when eating. Wake up early but think that’s anxiety. Sleeping ok and take my last sickness tab before sleep hoping that will take me through? 

Lots of love sunbeam xxxxxxx 

Afternoon lovelies, well all done, had an hour chat with the Chemo Manager, he said No to the picc line, which I was interested in, having only one arm available for all the treatments and blood tests, said the infection risks etc wasn’t worth it,I know he knows his stuff but I’ve heard nothing but good things about it, not least from my own Sister, but he was positive there would be no problems, fingers crossed eh!! Strange thing was he said my acrylic nails weren’t a problem, I’ve been told and read they weren’t allowed and have appt to remove them tomoz, so that’s a nice thing to keep a bit of the old glamour going lol,have the injections for white cell count for 5 days after, a district nurse will come and do it, and all the usual stuff re side effects, emergency numbers etc,
It’s not heavy Rachael, scary though, the money involved is ridiculous, the drug companies have a lot to answer for!! Glad you’re feeling ok! Hope lady grey is as well, soon be us Paul’s, enjoy your weekends, I’m just chilling, some friends round for a cuppa tomorrow, some rubbish telly and the gym, and food, I do love food lol
I’m upstairs in my haven, (bedroom),reading all the gumpf, could take a while!! Xxx

Hi everyone.  Glad to hear all going to plan,  I’m being treated at The Beetson in Glasgow and so far it’s brilliant.  It’s the second biggest unit in GB and the staff are all outstanding. I’ve got my wig and named her Helga…I hate her and she hates me!!  I would suggest you wait until you lose your hair before you get it styled.  It doesn’t really sit right until you are bald…so they say!  

i have opted for beanie chemo hats, all colours with loads of head scarfs donated. They really look fab.   You tube does lots of demos and if I can follow them and do them anyone can.  Girly I am not :catindifferent:   Having a much better day and feeling hugely more active.

 I only had one injection to take after chemo to boost my cells.  Very easy to give yourself and fairly idiot proof.  

With regards to hickman lines etc, I had a port put in which goes under the skin - bit barbaric getting it in and sore for a week after but i don’t need to think about injections or lines anymore.  they just put a hook needle in through the skin and into the port.  one ouch and its done!  

Next tip.  Hartleys 10 cal individual jellies, cranberry and raspberry slides right down your sore throat and mouth.   Oh, and I can’t get enough of carrot and turnip mashed together with butter and pepper…what’s that all about???  Mouth watering just thinking about it with tomato sauce

Ade xxx

Hee hee Ade, that sounds lovely, I’ll put carrots and turnip on the shopping list, mind you my other half is from Newcastle, and I don’t know if it’s the same but what his mum calls turnip I call swede?? Enjoy!!
And yep that’s the line I wanted to have but he very politely wasn’t having a bar of it!! Shame because as you say once it’s in you’re sorted!!
I’ll look for the Hartleys tomorrow, and got some beanie hats on order, I’ll get online and start learning the art of headscarfs!! I’ve called my wig Wanda, got a love/hate relationship at the moment,?
Glad you’re feeling a bit more energetic, it’s reassuring!! Sam xxx

Well done Samps for getting your assessment chat done. I got those jellies from ASDA multi pack but they were mouldy!!! Can you believe that! The jellies and del Monte fruit pots are great. My nurses said the picc required district nurses and were quite a fuss. Ill see how I go. I don’t need any injections just to see the one at clinic two days before next chemo and get bloods done. Feel a bit spaced out but went for a long walk with my little girl and went to the local shops. Put some food in the slow cooker ( be careful chopping onions my eyes streamed like mad!!!) And did washing. Not too bad. Ade I think the treatments weren’t for breast cancer but for more specific cases. Spoke to daughters head teacher today. Makes it all very real again going into chemo. Got a check up at the breast clinic on Tuesday. Oh the twists and turns!!! Stamps and Paul do you both start on Monday? Best to start it and then it will all be over by Xmas…funny time to finish isn’t it! Xxxx

Pleased to say there is half a ton of carrot and turnip (swede) cooking as I type…who needs sex?.

Hahaha! I’m loving the ready made ‘extra special’ butter mash a pound a tub from ASDA . You can tell I’m an ADD A girl! Xxxxxxx