Starting chemo October 14

[bettypoppit]

Morning LainieG, great to hear that scan confirmed nothing untoward with liver and well done you for taking all the ups and downs in your stride...you are an inspiration 🙂 hope your liver enzymes start coming good really soon so you can get home xxxxxxx

[LainieG]

Peta so happy to hear your house sale is going through at last. Great news. You'll finally be able to relax properly. Well done for getting to no. 3 , halfway there. I had a scan today and nothing to worry about but medication has affected my liver. Still don't know when I'm going home. Every day I say hopefully tomorrow but I'm going to stop worrying about it. There's no point. I'll just have to ride it out and hope my chemo isn't delayed too long. Good luck with the SEs. Hope you don't have too hard a time. Sending hugs 💖 💖 💖

[bettypoppit]

PETA that's fantastic news about your new home - Yeah 🙂 🙂 🙂 🙂 you must be so relieved and excited, now you can look forward to relaxing somewhere comfy and yours... Glad you are feeling OK after #3 and take care of yourself. Xxx

[nicnac15]

Thanks peta spoke to hospital there not overly concerned as the chemo can upset things with periods she said.they looked at my blood results from fri and they were 2.0 something so she said to keep an eye on it if i get worse to call them back. Temp is ok !. Its just a pain something else to throw into equasion. She did mention platelets could go low but seemed ok. Fingers crossed it gets better hey. Thanks for your help peta. Xx

[Peta]

Cranberry juice is supposed to help Murphy, I hope something does soon, that sounds really painful. Did you manage to get out and into town for a bit. I hope so. x

Lainie you're still in there! What an absolute pain. Do you think they'll let you out soon, or are you in limbo land again? My liver reacted after my first, the one where I was hospitalised and took loads of antibiotics just like you so it sounds familiar. My liver has recovered loads, but they still only give me a half dose of the 'e' - they told me today that won't give a full dose of that one if the liver stats are not absolutely normal- there's only one part that's slightly raised, but apparently that's enough. They don't seem concerned about the slightly lower dose though. Anyway, I hope you get out soonest, and I hope you're being looked after well.

Thanks for all the good wishes for my chemo today. I'm okay, just chilling on the sofa.

Oh and - my house purchase has exchanged - if all goes to plan we move in on the 11 December - which means I can finally move out of this temporary studio flat and get all my things out of storage and have a bath! It's been hell living out of a backpack while having operations and chemo, I can't wait to have a long bath.

[Peta]

Hi Nicnac

I haven't had similar problems, but I'd call the hospital if I did I think. Your iron levels must be plummeting, which really isn't good on chemo - they may want to give you a blood transfusion or iron tablets, both of which would probably make you feel less tired and much better.

I'm sure they'll be fine about you ringing. It could also be not stopping if your platelets are low from the chemo, so really worth getting it checked out.

Let us know how you get on. X

[bettypoppit]

Hi lovely ladies and really sorry to hear of the bad times some are having...fingers and toes firmly crossed se ease very soon.

LainieG, what a disappointment that you aren't home yet and I hope the scan has helped the hospital to better treat your elevated liver enzymes. Hang on in there xxxxxx

Peta I hope your treatment has gone well today and you are feeling OK...well done - #3 done 🙂 🙂 🙂

Did the 16 mile round trip first thing this morning to have my pre-chemo bloods taken at a phlebotomist clinic - such a difference - job done in moments and hardly noticed...yeah...totally worth the effort. Felt rather down as I drove home tho....have been on planet denial all week and now back on the BC rollercoaster....<big sigh> #3 early doors Monday and I don't want Monday to come 😞

Have a great weekend and big hugs to you all xxxxxxx

[LainieG]

Oh Murphy keep an eye on that. Did you phone the helpline? You might have to have iv antibiotics rather than just oral. Xxx

[Murphy1963]

Got really sore uti, been to GP and got antibiotics. Hardly past urine today and agony when I do. Hope the antibiotics kick in quick. Keeping an eye on my temp 37.5. Will try it in another hour or so 😞

[nicnac15]

Hi all can anyone let me know if youve had problems with periods in having one from hell been really heavy never experienced one like it. Thought they would stop or be lighter.
Started a week early and was fairly light and 14 day later still happening dont like to ring hospital for this. But stopping me doing things xx

[LainieG]

I'm still here Murphy. My liver enzyme levels are still high so I'm having a scan this afternoon. They took so much blood from me this morning that I'm surprised I'm not anaemic lol. Hate needles too xxx

[Murphy1963]

GeeG, what have they given you for nausea? This time #3 fec I had virtually no nausea, they changed my meds slightly and it seemed to have helped. Do you get emend? I have emend, lozazapam, ondansatron, dexamethasone, and they gave me Levomepromazine this time. I also use sea bands and have acupuncture. I usually finish my meds on day 6 but I think next time I'm going to continue with the ondansatron a bit longer and see if it helps me to be able to eat a bit more. This seems to be the biggest problem I'm having, not being able to eat. I hope they can help you a big more, there is nothing worse (for me anyway with my vomiting phobia).

Lainie, any word about escaping yet?

[LainieG]

Oh and good luck Murphy for your trip into town. It might be a nice distraction from all this stuff xxx

[LainieG]

Oh geeG poor you. The nausea sounds awful. I've been ok with that, not too nauseous. Hope it wears off soon and you get a proper rest. It must be difficult to feel rested with that going on xxx

[Murphy1963]

Good luck with #3 peta, one more crossed off the list. Let us know how you get on.

I'm going to attempt going into town this morning for an hour or so. This'll be interesting as I still have zilch energy levels!! Wish me luck xxxx

[geeG]

Hi Everyone - I DO like the idea of a meetup somewhere once this is behind us (tho not too expensive please!) - and yes - there do seem to be several of us in W of Scotland with links to the Beatson (sited at Gartnavel Hospital in Hyndland, Glasgow). My chemo happens there - all on Thursdays so far - rads are due to start somewhere around end February…

Day 9 FEC 2 for me today - and nausea still about '5 out of 10' level (took ondansetron over an hour ago so it should have improved a bit by now…) … thank goodness I am not working today... OH is taking afternoon off so I hope this has improved by then - feeling wasted - and all I did was the recycling and the washing up (dog walker in today so it couldn't be left… Why oh why have we still not re-done the kitchen and gotten us a dishwasher? Only been here about 20 yrs! LoL!). As my 'fall-off' from steroids just stopping after first FEC was so awful they just gave me 2 full days this time then 2 of third day and one on fourth day - helped the SE - but means I have had no 'Good Day' with energy to get anything achieved/enjoyed/accomplished… doesn't feel right! So I think I shall need to see if there is any other option - else Christmas may not happen here! LoL!

Rant Over… apologies…

Oh Lainie - what a time you are having with this - I so hope you are released for the weekend - for Good Behaviour if nothing else…

And Everyone Else … (sorry - Brain Fog getting in the way again) … so many hard things we are all coping with at the moment… I'm sure tears can be a helpful part of all this tho mine just seem to be happening inside my head just now… we are all so busy helping everyone around us to cope with us just now…

BLEAH… FEC-ing nausea… think I need to go back to bed for a while. Shall catch up with y'all later - meantime - hugs to you and hope your SEs are minimal today and throughout the weekend… x

[Debtex]

Good luck for your fec x 3 PETA x

[LainieG]

Good luck today Peta. Hope you do feel lively this time. Wouldn't that be lovely? Never thought I'd say this but wish I was joining you.
Good luck and wishes to all having treatment this coming week xxxxc💖

[nicnac15]

Hi murphy can totally understand how u feel i have a just turned 7 yr old son and 10 old daughter and i have school runs ive kept it fairly quiet dont want people feeling sorry for me. All teachers know in case my son/daughter gets upset especially since my traumatic hair day yesterday. The lady garden went last week but everything else has stayed so far so good.

Good luck peta for fec 3 tomorrow hope it goes well for you. X

Lainie so sorry to hear your still here hopefully good day tomorrow and you will be home feeling better. X
Hope everybody else is ok as can be and side effects are mininal for the weekend. Xxx

[Peta]

Bettypoppit you're offering sound advice there! Hang in there everyone. It is a real roller coaster on the emotions isn't it? I'm back in tomorrow for FEC #3 - I'm dreading it, I've been much more tired on #2. But it does seem to change everytime, so maybe I'll be all lively, who knows, that's the game isn't it? Sigh!

Yes, to the baby bottom skin, mine feels slightly rubbery even. And I've lost all my hair but not my body hair, that's all still annoyingly hanging on - at the moment anyway.

I hope you all have the best possible day tomorrow.

[Peta]

Aw, Lainie, it's not good being stuck in hospital, I hope you get out tomorrow. I'll lend you a teaspoon if you like. 😊

I hope you really enjoy your meal with your parents when it comes, you'll really deserve it, all of you. X

[Lah21]

Hi Murphy.  I am in Troon so having chemo at Ayr.  Not looking forward to travelling everyday but at the same time can't wait.  Just have to find out where it is.  Rarely get past Silverburn these days.  Was meant to be talking about rads today but forgot all about it until on way home. 

[Murphy1963]

Lah21 I will be going to beatson for my rads. My next pre chemo # 4 appointment is with the oncologist to discuss the rads plan. I have my chemo at my local hospital but unfortunately need to travel for rads. Not looking forward in one way to travelling back and forth to glasgow for 19 days, but in another way soooo looking forward to it because it'll mean the end is near. Do you have your chemo at beatson? My oncol is based there.

[Lah21]

Murphy so admire you for going into the playground.  I live in a small town where everybody knows you. I am avoiding going out here as I am dreading someone asking me how I am.  Like  LainieG says it is easier when your children are older. Must be so much harder with young children. x

[bettypoppit]

Well done Zelda, great you have had #3 and now on the home straight. Glad the Emend and piriton have helped and fingers crossed you don't have any nasty we in the next few days. X

LainieG, that is pants and I can so understand how miserable it must be for you being stuck in hospital all week....nearly there by the sound of it and home soon, so hang on in there 🙂 x

Jingo-x, that's must be hard to be told ' all change' when you are nearly there but they know what they are doing and have your best interests and health in mind. X

Murphy1963, don't be hard on yourself for being openly emotional...I'm sure we've all been there (I did the self same thing with a neighbour in fact). I don't think we'd be human ifvwe were keeping it together the whole time. I think it is really exceptionally tough for you and the other ladies with young children, but they can be resilient. I wonder if there is any support out there, specifically for children in this situation that might help? I'm sure you are doing everything you can but I would think that it's a tough one to cover all the bases. X

Does anybody else have 'baby bottom soft' skin? Also, my lady garden, eyebrows, eyelashes and rather annoyingly my leg hair is hanging on .... It's like a game of roulette!

Looking forward to a 'normal' weekend and even a trip out on Saturday...woo hoo , 2 adventures in one week 🙂 take care lovely ladies, hugs xxxxx

[LainieG]

Thanks girls. I'm sure I'll get home soon and this will all be like a bad dream.
Murphy how awful for you. It must be really hard having young children worrying about you. So hard for them to understand. My boys are grown up and I think that makes it easier. They're worried about me but I can explain it all to them and they get it. I'm past the stage of picking them up from school too so I'm not so visible. It must have been hard making that decision to go into the playground but you've done it now and hopefully it'll get easier. Don't feel bad about crying. As AMDriver just said to me,we all need it sometimes. Xxx

[AMDriver]

Why not have a good cry LainieG - we all need that from time to time. And goodness knows you have enough reason to! I feel like crying for you to be honest.

I really hope you get home tomorrow.

xx

[Murphy1963]

Oh lainie you've had an utterly crap week, I feel so much for you. It's bad enough feeling emotional when you are at home with your family, but being stuck in hospital for nearly a week must be awful.

I've had an emotional day, went to pick my son up from school today and decided to go into playground and get him (I've just been waiting in car for him this week). First person to ask how I am and I start blubbering!!! Then my 9 year old comes out and says why you crying mummy, who's been speaking to you. I just feel so much for him, what must his wee mind be thinking. The school has just started a group for some children called "seasons for growth" and he was telling them today his mummy had cancer! he doesn't like using the word in front of me.

On a lighter note, I think my lady garden is departing!!

Love and hugs to all xxxxxx

[Lah21]

Evening everybody. Not long back from onc appointment.  Actually managed whole appointment without crying.  I am sure my file has a big red flag on it warning all staff about me. Asked lots of sensible questions then announced I was giving up chemo.  At that point my Mum (who wasn't crying either) pointed out might as well keep going anyway as I am nearly bald anyway.  Not alot I could say to that. I like to think of myself as a sensible, mature adult but this thing has me pole-axed.  Anyway I am keeping going. Next treatment on Tuesday bloods permitting.  Not had any alcohol since my birthday, the day after I got my biopsy results.  Sitting having a Guinness......  not my tipple of choice normally.  More of a wine or gin and tonic girl.  My son has decided it will help build me up as I have lost more than 5lbs in last couple of weeks.  I think the solution would be to try to eat more but hey ho. I also have to say I am not exactly fading away but it is nice not to have the muffin top round the top of the jeans.  Onc thinks she may keep me on FEC for the duration as she feels the steroids with T not for me.  Went wig shopping earlier and managed not to cry. Anybody going to the Beatson for their rads? Feeling quite light headed now.  Think it might be the Guinness.  Try and have a good evening everybody.x

[LainieG]

Thought I was getting home today but it seems my liver is playing up!! Enzymes up slightly yesterday but much worse today. Hopefully just a reaction to one of the antibiotics. If so I'll go home tomorrow. I'm really fed up now. Seriously close to crying now xxx

[Zelda]

Hi Jingo I had palpitations after my 2nd FEC but my echo scan was clear so I carried on with the 20% reduced dose with piriton tablets if I had a reaction. But FEC and my next drugs can affect the heart so I guess I wi be monitored.Hope you feel better with your changed dose xx

[jingo_x]

well done Zelda for passing the halfway mark!

I am just back from seeing my onc who has decided that because of my bad heart reaction to FEC so far I will be switching to T + C on Monday instead of FEC.  Thrown me a bit because I was all geared up for more of the same and now don't know what's going to happen!

[Zelda]

Hi Ladies ,Well that's 3 FEC done thank goodness Better with the reduced dose although the Emend is helping a lot My veins aren't very good took 5 attempts to get the cannula in a line was mentioned but the nurse thought my veins should improve when I go on Doxetaxol I do hope they are right.
My hand started to swell at night and I had to remove my ring with soap as it was becoming tight and it was loose before.I took Piriton that was prescribed and that helped.My brains in a fog today carnt do simple tasks. I hope everyone is feeling ok today and good luck to those having treatment soonLots of Hugs xx

[bettypoppit]

Xxxxx

[bettypoppit]

Well I'll be blower...opposite for me, more nausea and more energy! As the life of Brian saying goes, "we are all different" lololol

Lah, we seem to be on a similar path re needles and hypnotherapist. I too have been to one regarding this and I have found the experience extremly positive. I had a second session last Saturday and I'm getting better at deep relaxation, which in turn is allowing me to relax a little regarding the needles. I believe that it is helping me to sleep as well and feel more positive. Possibly the best £40 I've ever spent on a Saturday! lololol

Fingers crossed for you to be going home very soon LainieG.

[nicnac15]

Good evening all
Welcome lah 21 lovely to have another lady to chat too we all definately help each other out in one way or another on here. Xx

Well i woke up this morning feeling pretty ok day 3 after fec 2 thought i would go into work for couple of hours. That was before i washed my hair and things took a turn for the worse my hair all matted together and when i say matted my friend who is my hairdresser too had to come and try and save whats left With the scissors. So i now have thinish hair on top and shorter hair above shoulder but strands are coming away, luckly it was thick so its still worth trying to keep at moment.ive cried most the day only just started chilling out. I can see why so many ladies just get rid this has stressed me out more than having treatment.

Lainie glad your improving and hopefully you will be out soon and can rebook your meal out.

Hope everyone else is ok as can be. And you all have a good week xxx

[Debtex]

Exactly same for me . Less nausea but more tiredness .

[Murphy1963]

Hi ladies, although I seemed to have done better this time re nausea, it's taken me a lot longer to come to. I feel so weak, I just want to lie in bed and that's me on day 8. I know on my 2nd fec I was out walking the dogs by this time. Anyone else feeling it harder and longer as time goes on?

I think we have a lot of scottish ladies on the oct thread by the sounds of it. Would be great if we could all meet up, not just the scottish lot obviously, after all this horribleness is over. I know some of the other threads have organised meeting up, something nice to look forward to xxx

[geeG]

Welcome Lah21 - and all best wishes to you working - I am trying to do so too - but have had to put my head down since 2nd FEC last Thursday - and think I have tried too much this week with working Monday am/tuesday/Wednesday - just SHATTERED tonight… but feel so very determined to be "Me"… after the awful nausea from first FEC I thought it'd be ok on different meds this time - but tho I think the meds are more effective for me this time I think the SEs have been a bit worse - LoL! Net result marginally better … tho…with low WCC before session last week and due low again these next few days it seemed sense to take Thursday & Friday off this week (aiming to work 50% hours just now - to discuss with Occ Health again next week but cannot see being able to commit to more than this - am trying to do more hours when I can to build up extra in case I need more time off with second phase of Doce-wotsit…and this feels good) … cat on lap and Standard Poo just home with OH from Dog Training … wet and windy West of Scotland tonight … retreating to bed soon … hugs to Everyone x

[LainieG]

Linzz I can't get Father Jack out of my head now lol. Xxx

[LainieG]

Neuts 1.9, infection markers normal and now a liver enzyme is slightly raised. Could be all the antibiotics tho. They're keeping me on one of the antibiotics and stopping the other. Hopefully home tomorrow or Friday. Can't wait. We had to cancel my mum and dads 50th anniversary dinner tomorrow because they don't want to do it without me.
Good luck to all with upcoming cycles and for those who've just had theirs I wish you minimal SEs. Lots of love xxxx💖

[Linzz]

Hello all, and welcome Lah21 this is a great group of gals

I've been quiet for a few days as I've been under the weather and feeling really down, but I've been keeping up with everyone's trials and tribulations and it has definately reminded me there is light at the end of each 3-weekly tunnel.

Like a lot of others I'm switching to the docetwhatever stuff, so just one more FEC to go for me on 24th. Anyone else always hear Father Jack Hackett in their heads complete the sentence when they say "FEC" ?

I would definately be up for a shindig next year when we're all on the up again. It would be marvellous to be able to congratulate ourselves and raise a glass (or a few) with all you ladies who understand so well what a massive achievement it will feel like to be done with all of this nasty palaver.

[Lah21]

Thankall for making me feel so welcome.  Think I go on to T after Fec next week. Got oncologist tomorrow.  I have not been very good at asking questions. Went into denial mode when I was told I was getting chemo. Had convinced myself wouldn't need it but one node let me down.  I have been taking my Mum to appointments with me but she ends up as upset as I am and we spend the next few days trying to remember what was said.  Taking a notebook tomorrow (and my Mum). After that off to see about a wig. Fabulous day out!!!!  I went to see a hypnotherapist today.  I think my shoulders actually moved down a few centimetrs from round my years where they have been since my call back letter in August. She asked me what was stressing me about the treatment.  Think she soon regretted that as my list went on and on.  She concentrated on my needle phobia today and I am back in a fortnight.  Felt much calmer when I left but by the time I had dashed round Tesco the shoulders were back up at my earlobes.I have only been working when I can. I am a Community Worker, spending alot of my time in schools, youth groups, parenting classes and am based in a busy office which the council likes to keep at a tropical temperture.  I not working with any groups or going into schools and am avoiding the hot house as the cold and bug season seems to have hit there already.  I only doing admin and go into small office where they know to let me know if there is anybody not well.  I do some work from home as well. I don't know how much longer I will go on.  Just have to wait and see how the rest of my treatment goes. I live on the west coast of Scotland and I am married with two boys of 23 and 25.  I have a mad spollie dog called Max and a very fat hairy horse. Hope everybody is doing ok today.  

[Debtex]

Lainie poor you hope you escape soon x

[LainieG]

Hi Lah2 and welcome to our fab group. You'll find lots of new friends on here. Sometimes I feel like the ladies are my own personal counsellors, advisors and close friends. We can say whatever we want to on here and know that someone will pop up with support or advice. I know what you mean about friends and family not knowing what to say. It's difficult for them too but having support here means we can deal with their well intentioned comments with less frustration. I'm very impressed that you're managing to work through this. I wanted to but I work with children and my onc said no because of bugs. I now realise that it would be been very difficult physically. I'm tired all the time. 😊😊

Thanks to everyone for your good wishes. I'm still in hospital and not likely to get out today. Thinking of stealing a spoon and tunnelling out lol. Hopefully tomorrow😕😕

[Peta]

Hi Lah21 welcome to the group!

I've found it really helpful to be able to read about everyone else's experiences. As we're all going through the same thing the people here are often more useful than real life friends, who don't know what to do or say.

We've had chats about all sorts of pretty intimate topics, like hairy bits - that are fast becoming not so hairy! - and other aches pains and problems that you might not want to discuss with even your nearest and dearest, and we get honest replies from everyone else. A problem shared is a problem halved they say and I've found that to be true, it's much less worrying when you know that everyone else is going through the same things as you.

It sounds like you've been doing really well getting to work, and cutting yourself off a bit is probably saving your sanity! I have a small handpicked group of friends that I discuss things with, but I'm happy to drop friends while I'm on treatment if they aren't able to handle the situation well. I can always pick up with them later when I feel better. At the moment I only see people who I find supportive and easy to manage. Everyone else can wait! Xx

[Peta]

Hi Lainie

I'm glad you're feeling better today. 😊 do you think they might let you go home soon? I hope so.

I know what you mean about dates being moved around, we just want to get on with it and get it over and done with so we can move on, it's so frustrating to have to move things about.

Good luck with getting released from hospital soonest. X Peta

[Zelda]

Hi Ladies, 3rd FEC and last one today before Doxetaxol. Echo Heart Scan was clear Oncolgist thought my palpitations were an allergic reaction so I will be having Piriton and a steroid with the chemo.
Bettypoppit, It was lovely to meet you yesterday I was the last one to leave the clinic yesterday I managed to get the amend but the others I will collect today.
Well I will take my dog for a walk now and be on my way Hope everyone has a good day and those having treatment today I wish you all the best Lots of hugs to everyone xxx

[jingo_x]

Hello Lah21 and welcome to the group - I hope you find it as useful as I have over the last couple fo months. I still look like I did before my diagnosis on most days and I think it is very easy for people to look at you and think you are fine (I am always being told how well I look) but of course the struggle is inside us and it is only when you are going through it that you realise just what a struggle it can be despit how we look on the outside.

AMDriver yes I am back in the chair for FEC3 on Monday (along with Bettypoppit I think), and then I switch to T for 3 cycles as well. 

I have had heart problems during both cycles and did a bit of googling last night (yes I know - I shouldn't) to see that my anti nausea med can cause heart problems and even heart failure in a few people so I think I need to bring that up with my onc tomorrow!  Otherwise feeling good.

Murphy1963 hope you can face some nice food soon and get your strength up

LainieG hope those neuts are behaving

hope everyone else is feeling as well as can be expected - take care xx