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December 2016 Starters

Evie-S
Community Champion

Re: December 2016 Starters

Yes, me again....

 

Cookiepuss - meant to say I am meeting plastic surgeon tomorrow so will let you know what info I get. At the moment I can't face the idea of any surgery let alone reconstruction but I guess I need to find out. Snail - I think you too are having surgery too after chemo, am I right?

 

Rooner - any stories for today? I liked your aside comment that you hadn't actually shut your finger in a door! That is a good description of how they feel. It is much better if the nails are short, they hurt if they get longer and I try to type.

 

Evie xx

 

 

Evie-S
Community Champion

Re: December 2016 Starters

Morning everyone.

 

Thanks SALowery for checking in with me - thankfully the nausea is going, still sort of low level but at least I can eat again. I had my mum staying with me yesterday as family on various trips and I didn't want to be on my own - very odd having a babysitter at my age!! 

 

SALowery - how are you today - are things improving at all?

 

Jacquie - big hug from me too. I can't put it better than Running Girl, Agarside and Snail have. Yet another thing to get your head round, there's always something new on this journey.

 

Running Girl - good to hear that you have a treat planned this weekend. I keep hearing your words about giving yourself a kick last weekend - think Cookie also mentioned "Uncle Fester". That has been me for much of this week but made me realise it was time to stop. I think as time goes on it gets harder and harder to bounce back.

 

Some of you have mentioned nails - I am a bit ahead of you on T and I think it's the T that does the damage. The lower third of my nails are now a different colour from the top, which is a bit odd, so must be the T part growing through. They are sort of tender to touch - some days worse than others and the thumbs and big toes worse than the other nails. Am hoping they won't fall off as that idea just grosses me out.

 

I think this forum is such a great support - you ladies really keep me half way sane, thank you so much. To be able to share SEs, experiences, funny stories with ladies going through the same is priceless. Husband glad too that I have someone else to moan to!

 

Andreaj - how are you today?

 

Brain unable to function on any level so I am sure I will remember something else just as I post....

 

Love to all xx

LennyGK
Member

Re: December 2016 Starters

Running girl / SA Lowery - I know exactly what you mean! I too have the urge to pull my wig off and show people my bald head when they say I look well!! Although I doubt I will be getting told that anymore as I def look more like chemo girl now that my eyelashes are almost all gone and I've big dark circles under my eyes as that last chemo has really taken it out of me! x

SALowery
Member

Re: December 2016 Starters

Same here running girl just because I look ok everyone thinks I'm sailing through!!! And I'm just not...

Evie how are you? You've been very quiet hope all ok...

Jacque how you feeling today?

Hope everyone else is doing ok!!!!

Xx
Running girl 53
Member

Re: December 2016 Starters

Big hug to you Jacqui. I guess we have to put our trust in the specialists and go with it. Bound to have mixed emotions about the decision but treatment has to be tailored to the individual. When you think about it , it is actually a rarity that we are treated as individuals when so many treatments are "one size fits all". Xx
Dont know about anyone else on t but i'm definately not bouncing back like i did on fec. Felt really tired yesterday and work was an effort. When asked how i was i was honest and said i wasn't feeling so good. Reply was "well you look good". It was meant nicely and i believe he was honest. But sometimes you feel like wiping all the make up off, ripping the wig off and saying how do i look now?
I guess i can't win really. I dont want to look ill and want to look my best but i dont want people to think i'm breezing through it cos i'm not!
Anyway, moan over! Have a good day all. Xx
Snail888
Member

Re: December 2016 Starters

Jackie i nearly stopped chemo after 2 rounds due to liver and onc said 2 was enough! Ive now done 5! So if the next one doesnt go ahead so be it xx
Agarside
Member

Re: December 2016 Starters

It is hard to tell family or friends how low you can get, wanting to just walk away cause they just dont know what to say.  I don't even know what I want to hear tbh.  But the "chin up" or "keep smiling" and the all the staying positive stuff.... gets tiring.

 

Hugs to everyone.

 

Jackie, sometimes the benefits have to outweigh the risks.  There is no point in us getting through this if we dont have a life on the other side.

 

Amanda

xx

SALowery
Member

Re: December 2016 Starters

It's such a hard journey to understand if you haven't done it... and if someone says to me one more time your nearly there!!!!! Arghhhhhhh
Snail888
Member

Re: December 2016 Starters

Yes. I wonder if i make it a lonely journey? I feel more able to talk on forums than to my family xx
SALowery
Member

Re: December 2016 Starters

Does anyone else feel even though we have lots of support from family and friends this is a lonely journey????
Rooner999
Member

Re: December 2016 Starters

That's tough Jacquie; at least they've made the decision and hopefully you will have time to recover before radio starts. xx
Jacquie48
Member

Re: December 2016 Starters

Hi ladies. This thread has been so busy I know I'll forget some things. Rooner, firstly I'm sorry about your friend.

My fingers all hurt. Worse in the morning. My big toes hurt a bit but not as much. The peeling skin looks absolutely awful but can only hope it improves soon. I already have Udderly Smooth. I have foot cream and hand and body and I really like it. I'm intending to use it when I have radiotherapy. I did bump into a lovely lady at the hospital today who says Body Shop Aloe Vera cream and deodorant is also fantastic.

My big news is this. Saw oncologist today expecting to be switched to weekly paclitaxol. Instead I was told that the risk to me of having more chemo was less than the risk of stopping! I asked about having more FEC because of fear of recurrence but was told the epirubicin dose already given was too high to have more. My head is all over the place. Part relief as I've been so ill but also fear of not finishing. Apparently having had colitis they can't guarantee I won't get it again and the risk of bowel perforation is too high for me. They will see me again in three weeks to arrange radiotherapy, letrozole and Zometa infusions. By then she hopes all my side effects will be gone. My Picc line is to be removed, probably tomorrow. I just don't know what to think!

Hope you're all ok,
Love Jacquie xxxx
Rooner999
Member

Re: December 2016 Starters

RG and cookiepuss. I've had a tender thumb and big toe for a few days, feels like I've trapped it in a door (but I haven't). My OPI varnish is going strong. My toes were a bit red last night so I slathered cream on them but they are a bit tingly this morning.

Eyes lashes/brows thinning quite quickly; I've bought some stuff from Boots No7 that's supposed to strengthen them so will see how that goes
Cookiepuss
Member

Re: December 2016 Starters

Rooner - very sorry to hear about your friend; it seems as though there is an "epidemic" of cancer, particularly breast cancer although I guess in our circumstances we are all more aware of it now.  I take some comfort from the fact that friends and colleagues with parents in their late 70's and early 80's who had breast cancer some 20 odd years ago are still alive and kicking, particularly when the treatment and research was much less refined.

 

Lenny - I too am looking forward to being able to taste things properly.  I anticipate my evening meal which smells really nice but find that the taste is not what it should be. 

 

Evie - how are the nausea levels?  Hopefully improving.

 

Agarside - Happy Anniversary for yesterday.

 

RunningGirl - will check nails later.  My thumb nails feel a bit tender but the nail varnish I applied over a week ago is still holding strong (probably because I just keep painting over the top of it as I am too lazy to remove and start again).  However, they could do with a check and I want to try out the Opi nail varnish recommended by Rooner so may treat myself to a little pedicure later.

 

Chemo brain definitely here - I have to write everything down otherwise I forget within seconds.

 

Right, need to start work so hope everyone has a good day.

Running girl 53
Member

Re: December 2016 Starters

Morning all
Hi Rooner so sorry to hear about your friend, that must be tough. Find myself lost for words sometimes these days. Xxxxx
Happy Anniversary Argaside, hope you had a nice day. Xx
This chemo brain seems to be affecting us all. I know i really struggled last week and now i'm back at work my multitasking capabilities seem to have abondoned me. If there are too many things happening at once its really tiring. I'm talking sigining for a parcel, answering a phonecall and someone saying good morning to me at the same time....my head starts to spin! Good job i dont have anything to responsible to do!
Have found myself stronger everyday this week so really hoping for a good weekend. Planned a day in Wales on Sunday, walking in the fresh air and a pub lunch. My little treat before next round.
How are your finger nails ladies? This t has affected mine quite quickly. They have been sore for a few days but when i changed my nail varnish last night they all looked bruised at the nail bed.
Hope everyone doing ok. I have struggled to keep up with you all now back at work (chemo brain again).
Have a good day. Xx
Evie-S
Community Champion

Re: December 2016 Starters

Oh Rooner - I'm sorry to read about your friend. She is lucky to have you to support her, someone who can be positive when needed through all this.

 

It almost doesn't seem right to laugh at your other story now - but it was funny! I definitely have chemo brain too, but I just haven't been out much recently to be able to top your stories! I have trouble following conversations and often ask the same question twice, or don't understand the question I am being asked by the nurses. Glad you found the rest of your shopping..... xx

Evie-S
Community Champion

Re: December 2016 Starters

Agarside - happy anniversary! That's funny - what did your husband say? Laugh? Chemo brain is so real. xx

Agarside
Member

Re: December 2016 Starters

Hi All,

It's my wedding anniversary today!!

 

22 years!!

 

I only remembered when there was red roses and a card this am.....  chemo brain, never gave it a thought

 

Opps

 

A

xx

Rooner999
Member

Re: December 2016 Starters

Bless you - thanks Evie - I do my best not to be too funny but this darn chemo brain!!

Today I drove past my turning to the shop I wanted to go to so had todo the 1 way system again; then I got home from Tesco and realised I had left half my shopping In the trolley so I rushed back and thankfully it had been handed in!!

On another note I've just been to visit my friend who is on her 3rd and now sadly terminal BC. Made me realise how lucky I am and how being positive can really help x
Evie-S
Community Champion

Re: December 2016 Starters

Rooner - I am loving the way you find a positive or funny story every day. Keep them coming please!

 

I am hoping I am through the worst of the nausea - like Cookie described it's now prob 3/10. Thanks to all of you for your advice - have been following it and it has def helped. Like Agarside, on day 4 I was able to eat dinner last night.

 

Hugs to everyone. xx

 

 

LennyGK
Member

Re: December 2016 Starters

Thanks Cookiepuss! I spend these days dreaming of all the food I can enjoy once my taste returns lol! Let me know when yours comes back x

Snail888
Member

Re: December 2016 Starters

Since verucas are caused by viruses it would seem these chemo drugs are killing them off. I wonder if joe public would be so keen on seeing a doctor for a cold if the solution was chemo! Xx
Rooner999
Member

Re: December 2016 Starters

Quite bizarrely a large painful verruca I've had on the sole of my foot for about 4 years seems to be on its way out!! Yay..some positive 👍🏼
Snail888
Member

Re: December 2016 Starters

All my aches and pains go on steroids day! I can see why people take them long term. Im glad to see some people are coming through just hope you all have a peaceful night. X
Andreaj
Member

Re: December 2016 Starters

thanks everyone for the support and for adding all you do I find it helps so much to know Im not in this alone .. even though that sounds horribly selfish sorry 

Agarside I had chemo this afternoon and they gave me steriods before via my pic line.  Its evening now and Im feeling better than I did before chemo so far! yup weird  or what .. I keep waiting for it to hit me and to feel sick and rotten as I did after a few hours of chemo with FEC ... also the hip pain I have had for two weeks has completely vanished which Im guessing is down to the antiinflammatory effect of the steriods?

 

Til now I was not at all happy about the steriod but I wonder if it is helping me just now, though I know this is likely to be a small island of ease so Im making the best of it and just waiting to see what tommmorow feels like.  Im still fasting though I was so fammished when I got back from chemo I had a couple of poached eggs on toast but other than that I have stuck with water only for the past two days and will continue fasting until 24 hours after chemo, talked to my onc about it today and she said she had looked into the study that was done and felt it was completely invalid due to the research subjects not being like for like and other reasons too much to go on about here, so basicly she felt it was not likely to be beneficial apart from as a placebo, my experience has been very postive with fasting but Im prepared to accept that it could be coincidence..who knows

Snail888
Member

Re: December 2016 Starters

Yep 1 pound tesco specialists are great!
Agarside
Member

Re: December 2016 Starters

Rooner999

 

I to am on Tesco specials daily... Gcsf have not been a problem except for a bit of bruising.

A

x

Rooner999
Member

Re: December 2016 Starters

Cookiepuss - my pain killers are Gabapentin 3 times a day and I have to say they've been great.

I've been buying Tesco own loratadine rather than the Claritin (as cheaper) and I've got to say bone pain has been minimal (I take them everyday)
Cookiepuss
Member

Re: December 2016 Starters

Lenny - no taste buds here either and I'm day 12. Most food tastes like cardboard and anything with a hint of flavour is combined with the texture of cotton wool so it doesn't taste right.

Rooner - what pain meds are you on out of interest?
LennyGK
Member

Re: December 2016 Starters

Day 12 and still no taste buds...... finding this very frustrating! Has everyone else's taste come back by now? x

Evie-S
Community Champion

Re: December 2016 Starters

Yes mine hadn't heard about it. I will get some for next time. xx

Snail888
Member

Re: December 2016 Starters

Im afraid the clarityn is buy your own. Most teams dont even know about the research that it works. It does work x
Evie-S
Community Champion

Re: December 2016 Starters

Snail - my memory is even worse at the moment so I can't remember who has been given Claritin for gcsf injections? I also get swelling in neck etc after the one dose injection I have on day 2. My team haven't prescribed it for me. xx

Evie-S
Community Champion

Re: December 2016 Starters

Hi Andreaj - so sorry to hear you have had a bad day and various muck ups. I don't know if this reassures you - I seem to be on a different regime to others on here as I also had T before FEC - but my hospital doesn't give steroids the day before T, only on the day of chemo and the day after. So I guess there must be various schools of thought...... 

You do need to feel confident in your treatment though, so sure you and your daughter will make the right decision as to what to do with future treatment. Keep chatting on here if it helps to reach that decision.

Hugs to you too. xx

Evie-S
Community Champion

Re: December 2016 Starters

Hi Cookiepuss - many thanks for your advice. Seems to be a common theme to make sure I don't let my stomach get empty - in fact I felt better this afternoon after grazing. I hope next time I will get stronger anti sickness on day 1. Helpful to have a score out of 10 too and to hear that the nausea should pass - when I messaged yesterday I was convinced it never would.

 

 I really hope you sort out your hands quickly.

 

Re T and my feet - I tried a combination of various moisturisers and nappy rash cream - Metanium (recommended by nurse for another sore area but worked on feet too), together with my infamous toe socks to separate the skin and stop it rubbing. I'm not sure which helped best, but it did settle. I have also heard good things about Udderly but didn't get round to finding any in time. 

 

How good to hear that you have hairs sprouting and that you are feeling better. xx

Rooner999
Member

Re: December 2016 Starters

Oops! Just realised why I have aches this afternoon...forgot pain killer at lunch!! If that's linked then my tablets have done an awesome job 👍🏼
Agarside
Member

Re: December 2016 Starters

Hi Andreaj

 

Why not talk to "PALs" and get them to give the a swift kick up the arse... surprising what a complaint in the system does to get "good care"...

 

Was it OK, to go ahead without the steriod or did you just have to take it there and then?  How much did you have to take??  Again I am not to happy taking this for T, unless I see real benefits lol.

 

Amanda

x

Andreaj
Member

Re: December 2016 Starters

Hi All just dropping in to say I am reading what you are all up to and sending lots of sisterly hugs.

 

Have been feeling pretty down and not felt like much but am ok really and just had my 1st dose of T today (had 3 FEC previously) Muck up by the hospital again they didnt tell me I was meant to have 8mg of steriods day prior to T so there was a delay while they rang round to find out if it was ok for my chemo to go ahead.  I was also given the amend anti-sickness which apparently I should NOT have had...

 

Im now seriously thinking of switching to a different hospital, too many things worrying me now and I simply feel unsafe which is not good when you have cancer! Im sure you all know that much lol

 

Anyone had any experience of Sheffield hospital as that is where I am thinking of switching to?

My daughter is having a fit saying its time to switch but I keep thinking I only have two more chemo to go??

I wont say which hospital Im at apart from privately, as I dont think it would be right.

Andrea

 

 

Cookiepuss
Member

Re: December 2016 Starters

Evie - sorry for the delay in replying re the nausea.  From my side I found the meds I got for the nausea worked really well.  The first night after chemo (Thu) was always the worst for me although I didn't actually throw up. 

 

On the Friday I felt not too bad - sort of about a 4/10 on the nausea scale.  Sat and Sun would be much better (down to about 2/10) and then I would have the steroid crash on Mon and Tue but nausea stayed at about the 2/10 level.

 

If I didn't feel hungry or just felt a bit yukky I had a Rich Tea biscuit - boring as hell but it did seem to settle my stomach a little.  For me personally feeling hungry makes me feel a bit sick so although I didn't feel like eating I forced a biscuit down.  Flat Coke also helped settle my stomach.

 

The other thing is to drink LOTS AND LOTS - the advice I got was to drink 2 litres the day before chemo and drink as much as you possibly could before having chemo on the day (again 2 litres was the recommended amount).  Obviously it would be difficult to drink 2 litres if your appointment is at 9am but they told me to have as much as I could manage particularly as it helps plump up the veins for those of us without a line or port.  Then keeping drinking the days following chemo to help flush it out.

 

Agarside - to prepare for T (bearing in mind that I have only had the one cycle so no expert LOL) I would ask about how you can pre-empt the mouth ulcers.  My mouth was fine during FEC but this time round I had the full monty of mouth ulcers, oral thrush and mucositis.  Any sign of a sore mouth and I would be asking to start the Nystin and Fluconazale before they recommend it.

 

Get your painkillers sorted before the aches and pains kick in - the morphine didn't suit me but paracetamol and codeine worked generally well.

 

I think the T wiped out all my nose hairs as I seem to have a permanently runny nose - anyone else? 

 

I did have another day of feeling really sorry for myself on Sunday and couldn't stop crying despite my best efforts to put a brave face on things. 

 

However, the aches and pains in my body have eased considerably and I went for a 30 minute walk which lifted me a little. 

 

My hands/fingers are still really sore and look awful.  OH has ordered me some Udderly cream which is apparently used by cattle farmers in Australia but has been recommended on various forums for helping with the sore hands/feet during chemo and I am willing to give anything a try.  (Evie - did you find anything to help with your feet?)

 

And I have worked today (from home) but it has been a good day as I have had to catch up quite a bit with being out of action last week so it has kept me fully occupied and I feel quite productive.  Luckily I can still type with my fingers although it is hard to use a pen.

 

Finally I have some hairs sprouting on my head although they are so sparse that it hardly seems worth it.

 

Best wishes to everyone and I hope all of you have had a reasonable day.

 

 

 

 

 

 

Snail888
Member

Re: December 2016 Starters

Day 6 and day 4 of gcsf injections and im finding them the worst. Not bine pain but lumph swelling in neck, armpits and chest. Terrible indegestion too xx
Rooner999
Member

Re: December 2016 Starters

Hi Agarside. I have to say T1 has been kind to me in terms of pain (although an achey wrist, fingers and shoulder today - nothing major) The only prep I will be doing for T2 is improved oral gargling from day 1 as oral thrush wasn't nice
Evie-S
Community Champion

Re: December 2016 Starters

Hi Agarside - good to hear that the FEC fog has lifted for you. I'm not great still, but a little better than when I posted earlier as finally managed to graze - thanks for asking. I am still in deep fog so this message may or may not make any sense!

 

Re T prep - I have to say from my experience FEC is tougher, so hope T will be kind to you. But I do think the later chemos get increasingly tougher. I don't know if you still have notes on my experience of T, happy to repeat anything so please do ask - although at the moment I am having trouble remembering anything so bear with me!! 

xx

Agarside
Member

Re: December 2016 Starters

Hi All,

I am now out of the FEC fog and looking forward (not) to preparing for first T.  Have oncologist appt on Thurs so now would like to be as prepared as possible!

 

Would really be interested in how those who have completed T1 prepared and if you have any tips, am really appreciative with messages from Evie, so now compiling my lists!

 

Hopefully, Evie you are feeling much better today!

Take care all

A

x

Evie-S
Community Champion

Re: December 2016 Starters

Morning WMJ. I have had various niggles, aches etc around my port since it was fitted. The Docs and nurses all say that is normal, and that it takes a while for it to settle. I have had mine for almost 5 weeks now and it is still quite bruised, on top of the actual port, and is quite sore after it has been used. I get some strange pains in my left shoulder occasionally - I think they said that it's all muscular. I have just had a look at mine and I do have a bit of dry skin next to it, but that could be from the various dressings that have been put on and taken off and I have quite sensitive skin.

I don't know how you are coping with the port being used - but I was given EMLA cream to put on it about an hour before use, it numbs the port and I had no pain when they accessed it for FEC. But it hurt a lot more later in the day when I was admitted and didn't have time to put on the EMLA cream.

 

Thanks so much for asking - unfortunately I am still feeling grim. The nurses are monitoring things and may need to get more drugs, but we'll see how things are this afternoon.

 

Hope that helps - do ask any more questions if you think I can help. xx

WMJ
Member

Re: December 2016 Starters

Hi Evie or anyone else who has a port fitted

It will be 2 weeks tomorrow since I had mine fitted. I am getting a few aches/discomfort in that area and also have dry flaky skin below it, not near where the wound is/was, as that has healed well. Wondering if you have any issues/discomfort with it or indeed can anyone else add anything. 

 

Hope everyone is coming out of their bad fog today after the last treatment and hopefully Evie your nausea is much improved. 

 

WIshing you all a good day.

X

Snail888
Member

Re: December 2016 Starters

Hi evie im 5 days post fec number 5. Bit rougher each time. Feel quesy but not actually sick. Find eating what i fancy helps. If my stomach empties i get lots of acid even on tablets then im back to square 1 x
Evie-S
Community Champion

Re: December 2016 Starters

Thanks Snail - I have some of that in the fridge, will go try some. Are you still on FEC? My memory is awful, or are you having just FEC? How are you doing today? xx

Snail888
Member

Re: December 2016 Starters

Im finding unsweetened cranberry juice good too if its any help x
Evie-S
Community Champion

Re: December 2016 Starters

Rooner - that's really good to read about your fun day and your plans for fitness. And thank you for that advice too. I am definitely going to be asking for stronger drugs next time. In the meantime lots to drink. xx

Rooner999
Member

Re: December 2016 Starters

Evie - I think drinking lots really helped me with the sickness, I drank loads of week squash. My doc said we shouldn't put up with sickness as they can sort it so make sure you get more drugs if you need them; it's only temporary!

I actually went shopping and enjoyed it (I'm a shopaholic and it's one thing i just haven't had the enthusiasm for) and I really tasted my lunch of BBQ chicken wrap and fries at frankie and bennys...yay. Everyone back to school and work tomorrow (apart from me) so my new routine is going to be some fitness each morning as I'm fed up feeling like a beached whale!!