71673members
375970posts
cancel
Showing results for 
Search instead for 
Did you mean: 

June 2016 starters?

Taran
Member

Re: June 2016 starters?

Hi Tinky, I'm with you on that... every time I went for more results I was waiting for someone to say"oh, really sorry but you don't have cancer after all, it was just a big mistake". Even after surgery, I wouldn't even have been mad about it. Just relieved!! But of course noone ever said that!!! Glad you have joined us and glad you are feeling good after the first FEC. Reading everyone getting over it well is giving me hope for next week!xx
Tinky
Member

Re: June 2016 starters?

Hi lovely ladies

 

I'm new to the forum, my first post.  It has been such a help to read all your advice & encouragements.  I had my first FEC on 13th July.  It was not too bad, the waiting is worse.  Even though I didn't get home until 6.30, I drank loads that day - never even saw any pink wee!  Also kept up with anti nausea tablets even if it needed a biscuit to get them down sometimes.  So first week for me was pretty good; everybody is different.  My worst day was day 8 - totally zonked out on sofa all day, everything was too much effort, very sorry for myself.  But felt better by next day (found eating definitely helped) & OK now except not sleeping very well.

 

Now wishing next one would come sooner, just to get it over with.  I am for FEC-T then surgery, also herceptin & now no prospect that they have got the wrong person & it's not really me!  Which I guess everybody experiences, when you feel perfectly well before treatment starts!

 

Sending love Smiley Happy 

Taran
Member

Re: June 2016 starters?

What dose of steroid do they give you? I had steroids on both my last pregnancies (injection not tabs) and never had any problems with them, apart from feeling a bit flushed. Wondering if it means I'll get away without any side effects from them now too??xx
Belle
Member

Re: June 2016 starters?

Hi Netti,

 

That's quite normal 🙂 The steroids can give you a real buzz.  That's why the advice is don't take them later than 1pm.  I found mine made me jittery and a bit shaky.  I didn't feel particularly energetic but I didn't have trouble sleeping at night, thankfully.

 

B x

netti37
Member

Re: June 2016 starters?

The steroids are having a strange effect on me. I've not slept today... Quite the opposite. I can't stop talking and feel a bit spaced out. Its driving my hubby crazy lol. I feel like I've been drinking!! Everyone reacts differently though. I might be completely different tomorrow. Xx
Jacquibea
Member

Re: June 2016 starters?

Hi Emma. I start my chemo tomorrow xx not looking forward to it. But it is one stage closer to kicking cancer in the arse xx hope your first cycle went well xx
Lucy Lu
Member

Re: June 2016 starters?

Emma. So glad you got the first one over. It really is the worse. Once you know what you are dealing with it will get easier and you will get stronger xxx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Emma,

they are very unlikely to - the first week is the worst as your blood count will plummet. Risk of infection and stuff going on in your body because of the chemo.

After day 7ish.. your body will be making new cells again ad your immune system will strengthen again. That is my experience anyway - and after second chemo - I was less tired after treatment and the steroids sent me into overdrive, lol -  the only thing that got worse, was the fatigue/tiredness, once the steroids wore off. That is likely to increase with each treatment - at least on FEC, do not know about T  - as the body cannot remake the same number of blood cells, which we have lost in the time it has before the next one. 

Hugs,

Sue xx

Emma111
Member

Re: June 2016 starters?

If the side effects don't happen in week one will they not happen at all? (Apart from the hair thing at some point)xx
Taran
Member

Re: June 2016 starters?

Really glad to hear it went well Emma. Sure that's a big relief for to now. And glad you and netti are feeling well so far. Hoping it continues for you both!xx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi again,

 

Keep on waiting, lol - if you have not felt sick by tomorrow - you might likely not going to feel that way.

Lots of nibbling and small meals - ginger biscuits if you have them - will help.

Other side effects - they may - or may not appear during week 1.

Fingers crossed for you.

Hugs

Sue xx

 

Emma111
Member

Re: June 2016 starters?

That's brilliant you are still feeling ok at mo, and long may that continue! Thinking of you and hope you get on ok, keep in touch xx
Anon16
Member

Re: June 2016 starters?

Glad went l fine Emma, well done hun.

I would say struggling more like a hangover permanently at day one so just wondering if it's going to get worse or if this is it. Coming at me in waves - I'm either fine, not find or just asleep. Haven't been sick yet but gagging quite a bit and wouldn't get getting through without all the drugs. As for steroids keeping me awake they seem to be having the opposite effect.!! Thank you x
netti37
Member

Re: June 2016 starters?

Hi Emma glad to hear it went ok for you today. Its surreal isn't it. But not as bad as you thought. I'm still lying here waiting for side effects haha. I've had achey legs and felt sick. Anti sickness tablets help and also eating!. I'm hungry but can't face food, so I've nibbled on pineapple drank lots of water and tea and ate a few yummy chocs my friend brought me today. So far so good for me. But yes I've done the same as you waiting for something to happen. Early days though. Fingers crossed xx
Emma111
Member

Re: June 2016 starters?

Did anyone else after their first session go home and lie on bed hoping to god no hideous side effects happen?? Tiredness is going to be a weird one for me but not horrendous. Got a billion anti-sickness tablets so fingers crossed on that front. I just feel like I'm lying here waiting. .... but at same time trying to enjoy the moment of feeling fine xx
Emma111
Member

Re: June 2016 starters?

Thank you Sue, still all very surreal ..... the same for everyone xx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Emma111,

 

so great to hear it went well for you - it will make it so much easier the next time.

 

Look after yourself, won't you. At the moment you probaly feel quite strong - that is the steroid, lol - and be ready for the pink wee - drink, drink, drink - the sooner it is its normal colour again the better!

 

Huge hug

Sue xxx

Emma111
Member

Re: June 2016 starters?

Hi all, well I'm back from my first chemo session. All the anxiety and worry I had about going soon went away. Very teary (ok, uncontrollable at first) on arrival but everyone put me at ease. The pic line was no bother at all and sitting having the treatment was in a calm peaceful environment! Imagination and fear is worse than reality. One down, 5 to go! WE CAN DO THIS 💪💪💪💪
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Anon16,

I was tired when I came back from Chemo 1, but ok.

Day 1,2,3 a little tired, hot flushes and lots of naps required, but fit enough on day 1 to go out for lunch. Day 4-7 tired but very managable - day 8 nearly back ti normal and on upwards curve.

Are you struggling?

Hugs

Sue xxx

 

 

 

Anon16
Member

Re: June 2016 starters?

Can I ask those of you who've been through the fec first course already if you felt better or worse on any days after chemo? Ta
Belle
Member

Re: June 2016 starters?

Hurrah, Charissecarson!!  Soon be one third of the way through!

 

B x

Taran
Member

Re: June 2016 starters?

Great news charissecarson!! Soon have another one under your belt then!xx
Taran
Member

Re: June 2016 starters?

Belle, wonderful links thank you. Hope you managed to get some sleep though?!

Char button, another Welshie? Why did they want to send you to Merthyr if it is not closest for you?!?

Good luck for today's starters. Still nothing for me into my pre assessment on Friday so eagerly checking on how everyone is doing after their first sessions xx
Charissecarson
Member

Re: June 2016 starters?

Good news ladies! White blood cells up to 1.4 so got the green light. Number 2 underway! 👍🏻
Belle
Member

Re: June 2016 starters?

Morning all,

 

I've been mulling things over in the night, as you do, and it occurs to me that we have a lot of young women in our month.  At 50, I am constantly being told at the hospital that I am young but many of you are much younger than me.  So I have been doing some reading and ferreting and rummaging around the t'interweb.  You may well have all this information, but in case not, this is what I've come up with:

  • The Younger Breast Cancer Network - Facebook group for those of 45 and under

https://www.facebook.com/YoungerBreastCancerNetwork/info/?entry_point=page_nav_about_item&tab=page_i...

 

  • Younger Women & Families Breast Cancer Care Forum 

https://forum.breastcancercare.org.uk/t5/Younger-women-and-families/bd-p/4449

 

  • Fights Like a Girl - Blog by Sarah, diagnosed at 33

http://hbocuninformed.blogspot.co.uk

 

  • How to Glitter a Turd - Blog by Kris Hallenga, Coppafeel founder, diagnosed 23

http://boobchiefkris.tumblr.com

 

Hope that's useful.  Meanwhile, I am so delighted you are all here and hope you (and everyone!) continue to feel welcome.

 

In other news, I'm delighted to see you back Bottyboo!  Hope you're feeling better?

 

B x

Bottyboo
Member

Re: June 2016 starters?

Hi lovely ladies. I popped on here to say hi then promptly disappeared.
Emma you are definitely not a wimp. I literally don't know how I walked in for my second chemo. For me the first couple of days are fine as long as I take all the sickness meds but days 3-7 were horrendous to the point I sat and cried. I felt so down and unwell. Week 2 I got admitted with sepsis so chemo no 2 delayed for a week. This actually made things worse as it prolonged the agony. Had no 2 last Friday and this time have been so much better. Still not liking it but so much more bearable.
As far as I can tell the injections are a cross between cost and consultant preference. I get them cos of open wound still. But apparently my consultant is starting to give them routinely anyway.
I have been changed to 4 x FEC now so am halfway through but still feels like an uphill journey. I can no longer eat chocolate (why?????) Or drink coffee. Hoping this will return when chemo finishes.
Love and hugs xxx
charbutton
Member

Re: June 2016 starters?

Rosie, I had the first one at Velindre but am at Nantgarw for the next dose. They had wanted my first one to be in Merthyr which would have been a £100+ cab trip in total as my other half doesn't drive. Luckily they were able to change the location.

 

Emma, as everyone else has said you are not a wimp! How we react is how we need to in order to deal with such horrible stuff. There's no rule book. I hope your first time goes as smoothly as it can.

 

I hope everyone else is well. 

Anon16
Member

Re: June 2016 starters?

Good luck to all starters today, you can do this!! Xxx
AngeNut
Member

Re: June 2016 starters?

WELL DONE you new starters this week! 

I'm right behind you - start on Friday 24th. 

I went for my intro and assess today - I actually had a nice afternoon. 

Had my stats done and a talk about my chemo and then all the classes on offer.

I was able to chat to patients about having a PICC, chemo and wigs - one lady I didn't realise was wearing a wig - it was fab!!

I had my wig talk and tried one on - it actually looked great. Got my voucher! 

Staff were lovely.

I came away feeling encouraged and "I can do this"

 

Wednesday - underarm drained (again) - I have rocks in my boob, too!  Dentist in the aft as recommended.

Thursday - PICC at Clatterbridge

Friday - OFF WE GO!!!! 

Emma111
Member

Re: June 2016 starters?

Thank you so much every one. I will let you know how I get on. Glad those of you who went in today are feeling ok. My mum is coming with me so at least that's something xx
Lucy Lu
Member

Re: June 2016 starters?

Emma you are definitely not a wimp. As someone said on here a while ago. This experience will make you go from worrier to warrior. You will be patting yourself on the back tomorrow and after every treatment. It is the most frightening to hear you need chemo but the reality of it is not half as bad as you are thinking. Xxx
Millasmummy
Member

Re: June 2016 starters?

Good luck tomorrow Emma. My experience of the first one was much better than I had expected. It took 2 hours and then I was on my way home. The nurses will look after you. I just had a very cold arm which soon warmed up after they'd stopped administering the drugs. Take some boiled sweets, it gave me something to do :).

Netti, glad today went ok and that you've got your first treatment ticked off, hope you don't feel too icky the next few days.
Anon16
Member

Re: June 2016 starters?

Your definately not a wimp Emma and we are here every step of the way xx
Belle
Member

Re: June 2016 starters?

Glad to help, Marije.  Just make sure you discuss it with your chemo team or oncologist first.  It's really quite a big thing and you should let them know if you're planning to do it.

 

B x

Marije
Member

Re: June 2016 starters?

Thanks Belle, that is very helpful. I am leaning towards trying the restricted diet instead of the hardcore one! 🙂 

Belle
Member

Re: June 2016 starters?

Right, not one of us is a wimp!  You cannot be a wimp and go through chemo.  I don't care if you have to be dragged in screaming, faint at sight of the first syringe and then wet the floor in terror just to finish off.  Even if all that happens, you are still not a wimp!  We may not have a choice about this experience, we may feel utterly disempowered by it but it takes guts to walk through those doors and we do that again and again.  So well done us!  And well done to those doing it tomorrow and to those who did it today.

 

And Julie, I think lots of units give the drugs manually.  There are pros and cons to both methods.  The upside of the pumps are that they rate of infusion is set and therefore the drugs are given at a steady rate with the same rate of dilution every time. It took 2 1/2 hours for mine to work their way through.  With a nurse administering them there is always going to be variation.  However, with a nurse you get a lot more personal contact.  I really only spoke to my nurse each time she changed the syringes and I never got to know her name.  I'm been treated at a huge unit so I'm sure it means they get through more patients but missing out on the personal touch is a shame.

 

B x

Taran
Member

Re: June 2016 starters?

Good luck Emma. Don't ever feel like a wimp. This is the hardest thing we've ever had to face in life and however we deal with it is absolutely allowed! I'm sure you will be fine once you are there anyway xx
netti37
Member

Re: June 2016 starters?

Emma, I felt like the biggest wimp there too this morning. Its emotions and anxiety. It really was ok. Not where I would of chose to be, but no other alternative. You will be ok. I went with my cousin and then my hubby joined us (only because he was in the area). Do you have someone to go with you? If not, then you will be fine and well looked after. Xx good luck.
Anon16
Member

Re: June 2016 starters?

Will u have someone with you Emma? The experience itself was fine and I mainly just chatted with the nurses, read a paper. This may sound funny but it was a better experience than a lot of things I find tedious such as dentists, doctors, car service lol
Emma111
Member

Re: June 2016 starters?

I've got precisely 14 hours til my first treatment. ...... am going to think of all of your positive comments about the day itself to help me through. I'm so scared of being the biggest wimp but determined not to be x
Taran
Member

Re: June 2016 starters?

Hi Rosie, I start next Tuesday 28th. The Velindre outreach team come to the hospital Tuesday mornings so feel really glad about that. But sure my bcn said the radiotherapy is only done at Velindre so will be back and forth to Whitchurch for a few weeks once chemo is over. Thinking about doing one of the "look good feel better" courses there too. xx
Anon16
Member

Re: June 2016 starters?

I'm going to the wig shop Saturday. Are you going to donate your hair? Just been reading the Princes Trust about it and my hair in very thick and long so think it will be accepted to make one. Just need to find the point where it starts falling out to wash, put it in a plait and get it cut into a bag and in the post.
netti37
Member

Re: June 2016 starters?

Your right about the postcode lottery, from what I've read. It all should be available to everyone, regardless. I have my 'wig' appt on Thurs and have free parking too. Crazy isn't it. I would pay a billion pound (if I had it...to get rid if this nightmare). Xx
netti37
Member

Re: June 2016 starters?

Best wishes for those starting tomorrow. I was a nervous wreck this morning, scared of the unknown. But once there, the nurses are lovely. They talked me through everything. My nurse sat with me the duration as she administered it. There were about 5 syringes that got pumped through the iv. Took about an hour .. Give or take. I felt no pain. My arm went cold but they give you a warm wrap to help keep the vein open. There were times when I actually laughed!! It was not half as bad as I thought. Good luck all. Xxx
Anon16
Member

Re: June 2016 starters?

I think it really is a postcode lottery, I felt the same when I was pregnant, my area really are amazing and I feel very lucky. I've got two huge bags of drugs and injections, free massages,parking paid, a wig, free prescriptions, therapy and whatever I need really. I never abuse things and it seems too much for little me to need at the moment.

I've heard to take all the drugs wether I need them or not plus reflux pill and mouthwash. Fingers crossed.
RosieFlower
Member

Re: June 2016 starters?

Hi Taran, yes based in Cardiff, and having first three in a mobile Tenovus unit based at Showcase cinema in Nantgarw, then said the next 3 which is the T needs to be done at the hospital as possibility of a reaction with T than with FEC. When do you start? Rosie x
netti37
Member

Re: June 2016 starters?

Rosie hi. Yes I had emend anti sickness before, then one through iv and have brought some home. Nurse told me to them, one at tea time, so I've managed a sandwich and had it. I've got emend to take tomorrow and Thurs too. I will start my steriods tomorrow and injections start Fri. My hubby can't wait to do those (nice of him...not lol)..although we can do it ourselves. I had similar injections after my c.sections.
Hope your doing ok now. Just rest as much as you can. X i feel like bed but I'm not that tired...a very emotional day again.
This is only day 1 though...my nurse told me side effects will start within 48/72 hours. Xx
Charissecarson
Member

Re: June 2016 starters?

Thanks everyone, I'll just have to see how it goes tomorrow and then I think I'll get my husband to try the injections for me once they've shown me what to do. He's had a right eye opener this week, first shaving my head and now stabbing me with a needle. Wouldn't want him to feel like he's being left out of all the fun! 😄😝
julie.galea
Member

Re: June 2016 starters?

Charisse.  I had the injections from day 3 for 7 days, I think my unit is trialing it to stop people becoming to run down between cycles,  I hadn't heard of them before I went for my first treatment.  They are easy to do, you pinch a bit of skin on your stomach or thigh and inject into that, the needle is on a spring so once you have injected it, it clicks and the needle springs back up inside the barrel so it is safe. I just put them in a plastic container and took them back to the unit when I had my mid way check up with the nurse.

Its definatley worth it, my bloods were only slightly down when I had my mid way check and the nurse was really pleased. 

 

Emma111.  Good luck tomorrow, the thought is definitely worse that the doing and you will be fine.  The staff are lovely, and will put you at your ease.  Im going in for my 2nd dose tomorrow so will be thinking about you. 

 

Belle, I started reading your blog last night,  you have a fancy machine to do your chemo,  I have a nurse sitting injecting the drugs into the cannula.  My unit is obviously behind the times.

 

Well done to those who started today,  thats one down and then end is closer than it was this morning.

 

 

 

 

 

 

 

 

Anon16
Member

Re: June 2016 starters?

Hi Netti I had a bit of a moment earlier where feel very queezy and breathless but took a pill, cold flannel on forehead, slept for 30 mins and then felt well enough to take my daughter.to the park. Think I may need the drugs to get me through. Do you have any as I was.told.leg pain was a side effect of one of the drugs.

I was given 7 days of the injection to take away for my husband to inject but think that's because my daughter goes to nursery and I could get loads.of things from her. Still going to kiss her to death every day though lol