June 2016 starters?

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21

Hi all

 

and especially Belle - I hope your holiday has been wonderful and relaxing!

 

I just popped in from the May thread, as I had my first FEC75 on 19th of May and am due my second on June 9.

 

Hoping my experience, so far is of help. My key advice, and Belle will have probably already read this - is to drink about 1-2l of water beforehand. A cup op lemon and ginger tea, or other ginger tea is likely to settle your stomach. Steroids and a strong anti sickness drug tends to be given to most - at the start of the treatment - They are to avoid a strong reaction to the drugs and you feeling sick. If you generally have low blood pressure, challenging veins and no installed ‘pipe line’ - you may wish to keep your arm, in which the chemo can be given (the one, which is NOT on the side of your op) - as warm as possible - and even spend a little time immersing it in very warm water once inside the unit. It will help to bring your veins up should make the cannula insertion much easier.

Take some water with you and drink, drink, drink. It is usually the case, that they will flush your kidneys at the end of the treatment - but still drink as much as you can to keep flushing them through.

It is well worth doing this for at least the first 10 days after the treatment, too.

In my unit the chair is very comfy - and as on my own, spent most of the time either talking to my nurse or simply ‘chilling’. If you have an MP3 player or similar, with music you like - this is a great time to use it.

When leaving the unit I got a ‘goodie bag’, just as you do after posh parties, lol - just that it had medication in it and not a Rolex watch. :smileysad:

As I had absolutely no adverse effects, was able to drive myself home afterwards, had some supper (home at 6) and had an early night. The steroids did not keep me awake, lol.

The first few days after chemo tend to be quite uneventful for most, as the steroids are keeping us ‘above water’- day 4 onwards they leave the system and ‘wobbles’ may hit you - I had one awful day of them. I needed to pace myself a little - and had to cancel some of my work related appointments, as I felt quite tired, but still managed to work from home, just about. 

It would be quite normal that side effects, if you will get any and if not already there, may show up at this time. Keep taking your anti sickness tablets RELIGIOUSLY - my ones worked well for me - actually, so well, that I needed to eat - so I did not feel queezy, lol. I was able to stop them after day 4. You may also have heartburn or burp a lot. Constipation is also quite likely for many. Good old Sennakot has worked wonders for me.

On day 7 I actually started to feel, as if I never had chemo. Energy went back to usual levels and feeling healthy. From the ladies on the May thread, some are like me, others have really struggled. Most seem to have suffered a sore throat, starting shortly after treatment - so have some strepsils or boiled sweets at the ready! 

For me, I wish I could have my next one now, to get all behind me quicker, but of course I have to wait till the 9th, lol.

I m not cold capping, had my hair cut super short - still waiting for my first bald patch to apper, but know it will not be long now.

For those of you, who like some tips on easy recipes and the odd beauty tip - there is this thread, too - it is for the good things, which help to support us physically and mentally through this tough time-

forum.breastcancercare.org.uk/t5/Chemotherapy/Chemotherapy-Tips-and-Tricks/m-p/1017289#U1017289

For those of you dreading your hair going - there is a thought, which may be of help.

Chemo is there to kill off cancer cells - that many other cells die in the process, too - is collateral damage.

For each hair you see in your wash basin, bath tub or on your pillow - there is a cancer cell or more, which is now dead! 

Wishing you all the best - it is a tough journey - we are all here to support you - and you WILL get through it and come out the other end.

 

Sue xxx

 

 

 

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Hi Ladies, just wondering what you are doing re hair if you are not having cold cap. My hair is quite long, so I’m wondering whether to have it cut short before my first chemo session, or keep it long and wait for it to start falling out and then shave it. I have an appointment at a wig shop in Banbury next weds to find a week similar to my current hair. Will you also have scarfs too, I’m guessing so? XXx

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Hi Millasmummy,

I’ve started getting my hair cut progressively shorter. On Tuesday I’m having a very short crop. The minute it starts to fall out I’m getting it shaved. I already have a wig - there’s a picture earlier in this forum. On Wednesday I’m using the BCC HeadStrong service which sounds great. I get an hour’s one to one tuition on head scarves etc. Ive also bought a couple of sleep caps and a buff from Annabandanna which is the cheapest place I’ve found online. I figured until I know what I’m going to do I don’t want to spend lots of money.

Good luck with your wig fitting. I found mine really helpful - take someone with you if you can, helpful to have the opinion of someone you trust.

Hope that helps,
B x

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Had my first chemo at 12mid day. Uneventful going in other than a couple of weird sensations. A prickly bum from the steroid but lasts a minute or so. A funny blocked nose kind of feeling and a bit of a muzzy head. Ivejust had a touch of sorry it I thought you’d want to know diarrhoea and a little griping but so far minimal. Any tips on the best thermometer as my digital is playing up and I’d like something I can rely on. My bum cheeks ache now, weird eh? Wish me luck xxxxx

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Hi all! Had my marker fitted in my breast yesterday and am booked in for my first chemo on Tuesday next week, yay!! Would never have thought I would be looking so forward to something so awful but just want to get cracked on and blast this cancer.
Having my hair cut short today too, my best friend is coming over with some Bucks Fizz and croissants and support.
Good luck everyone and will post afterwards xx

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I had my first cycle of EC chemo yesterday 3rd June and was uneventful. I used the cold cap but now suffering with headaches (not sure if it’s due to that).

Feeling a bit washed out and bit rubbish today but just taken all the anti-sickness.

It’s nice to read about other people’s stories.

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Hi Foxy2104 & LJSam,

 

Sorry you’ve had to join us but very glad you’ve found us.

 

Foxy2014 - what a brilliant friend & fabulous idea!  We so need people like that around us.  Hope you’re managing to make a crap situation today into a day including laughter.  My crop is happening on Tuesday - sadly won’t be involving Bucks Fizz but I’ve done my fair share of boozing with friends over the past week on holiday so my liver needs the break :wink:

 

LJSam - sorry you’re feeling rubbish today.  As a migraine sufferer I can sympathise with the headaches and know that they are the pits.  Hope they improve soon.  If the anti-sickness stuff you’ve been given isn’t helping make sure you let your unit know so they can give you alternatives for your next cycle.  Hopefully you’ll be feeling better soon, meanwhile - duvet & tv day?

 

love to you both,

 

B x

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Hi everyone, I dont want to bring negative stuff to bring us down but i also find personally if all the posts are that others are finding it a walk in the park I wonder why I’m not and vise versa. So I’m just going to be open as always. I thought first couple of days were going to be ok but by six pm last night I felt so sick enough to have to go to bed. Drank approx 2 Litres of water since but couldn’t eat. It got worse even though I had taken all the oral antisickness. So by 10.30 hubby rang district nurse who came and gave me an injection which really helped, still feel a little nauseous but can move about ok. A bit of a restless night with a low grade temp of 37.7, feeling a tad fragile this morning but brighter. I think if we could have info of how we were all going to be it would be so much easier. But not knowing what today or any other day is going to bring till its over os a pain. Lets hope we are all going to take it in our stride. Power hugs to you all xx

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Belle you are such a trooper, very supportive to everyone even though you are struggling yourself. ? xx

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Thanks again for kind words. My unit says only need to ring if over 38c. It is wavering this morning and did go down to 37x thanks for caring, you sound amazing. I try to be supportive on my better days but you seem to be upbeat everyday. May it continue and your as strong as you sound. Big hug

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Thanks for the support Sue, please keep us updated how you get on and big hugs back xxx

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I’m just in the hospital now as i have to have my Hickman line dressing changed xx

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Hi Ladies. Hope you ladies that have started their treatment are feeling ok this evening, and hope you got on ok at the hospital Buster1. I have today tried on 2 wigs, which I didn’t like at all, so left wig purchases for today, but did buy a hat/turban and sleep cap and also some moisturisers for skin in case it goes dry. The hat was from surbuban turbans. I tried on loads but this one most suited me and I didn’t feel to bad in it. It felt very surreal sitting there trying them on but I got through it. Next job is hair cut :(. Mood wise, I’ve been strangely calm and in control today. It’s wierd how one minute I’m on the floor and next I feel strong and not quite so scared. Although evenings are not good for me, so I go to bed early, but the days are usually ok, my lg keeps me busy. I have my bone scan on Monday, as anybody had one yet, just wondering what it’s like and what to expect? Xx

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Hi Buster1,  I am just nipping over from April 16 just to say I think I’ve done quite well on fec however the first week is a right off, 2nd picks up a bit and 3rd not to bad. I have found each cycle has taken a bit longer  to get over.  I envisaged  going back to work on my 3rd week but cant make a descion to save myself and can’t cope with day to day things, I still feel I ain’t done to bad :). Don’t be to hard on yourself,  yhee will be people who sail through, those that really struggle and those inbetween there is no right or wrong xxx

35

Ok, so my turn to share wobbles.

 

I’m scared.  I’m jetlagged (that’s deserves no pity!).  I desperately need to sleep but I go to bed and all I have flying round my brain is all the unknowns coming my way.  I read the Guardian article from Friday (theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-cancer-treatment?CMP=Share_iOSApp_Other) and one phrase really resonated with me: ‘Waiting to begin chemo is like being on medical death row; you know your body is about be attacked, but how it will feel is a sinister mystery, and unknowable dread only makes the waiting worse.’  And eventually I do fall into a fitful sleep.  But then I wake too early (jetlag? nerves? who knows?) and it all the worry starts again.

 

So here I sit, waiting for it all to begin, knowing you are in, or have been in, the same situation.  I haven’t been overly concerned about losing my hair and yet every time I brush it, I wonder how many more times I’ll do this.  Every cough or sneeze causes me momentary panic as I wonder if I’m coming down with something that will delay my start date (Thursday) and prolong this hell or, even worse, mean I end up with sepsis.  I feel out of step with my friends and family, as if I’m in a bubble - I can almost watch myself at a distance and wonder who I am.  And I hate hate hate being this self obsessed!

 

Sorry.

 

B x

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Julia, i have the injections and i ache, my shoulders get really sore to touch and they give me a headache all stops when course finishes. I take them in the evening now with 2 pain killers which seems improve things x

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Julie. This is perfectly normal when you are on chemo. Take a few days off and enjoy the sunshine. I originally planned to work two out of the three weeks but it hasn’t worked out that way. I have two weeks off and work o the so called good week. I must admit even that is getting harder ad I am so tired. I have had three FEC and one T. The T seems to be more aches and pains and no nausea or grogginess. Hope this helps. But do be kind to yourself I know we l want to be back to normal but take things easier and you will get there faster xxx

38

Hi all
I wasn’t sure about posting as I’m feeling a bit sorry for myself atm. Treatment was on Saturday and I’m just feeling really spaced out, not sleeping well and had an allergic reaction to yesterday’s injection so have been told not to take anymore. Also my picc keeps getting bloody so I think I need another dressing change.
Anyway, chin up ladies, as others have said it is a process to get though and although I’ll have my surgery after this we’ll get through it.

Nev. X

39

Hi everyone, I’m feeling low today, my bone scan was this morming which was fine, but I was also hoping to hear from my BN on results of MRI, 2nd biopsy and HER2 status. They had a meeting last Friday morning and she said someone would call me in the afternoon. Nobody did and now I have called today and she has just called me back and left a voicemail saying they are still waiting for the report, which seems a load of rubbish to me as I know they’ve got my results, as my biopsy was over a week ago and another BN said they’d all be back by Friday. So now I’m convinced myself it’s more bad news and the BN doesn’t want to tell me and is waiting for my Consultant to phone me tomorrow. Feel so rubbish :(. I’m upstairs in the house because I don’t want my daughter to see me upset. Sorry this is a moany post X

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Sorry we seem to be having a bad week. I ended up back in hospital at 5am with shivery and headachy. Temp getting up to 37.7 but with feeling rough as well they told me to come up. wcc high so on iv antibiotics. I feel a bit miffed as missing the sunshine, bum sore from sitting and as its only a few days after the first course feel like its holding me back from fighting back. Remind myself just take each day at a time xxx shoulders back ladies and onward?