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February 2019 chemo starters

Implausible
Member

Re: February 2019 chemo starters

Hi all.

 

I'm out of surgery, back up in my room, and feeling fine, everything went well.

The portacath is very unobtrusive and I'm feeling perfectly comfortable.

It's going to be a godsend for me as they will be able to use it to take blood tests as well as administering the chemo from it.  Giving bloods is always a real struggle for me as my veins are super shy!

 

Looking forward to my tea now (food tea not drink tea) as I'm ravenous! 😄

 

Sarah

MBJ
Member

Re: February 2019 chemo starters

Hi Sissy60

Yes I agree it's hard to live life as if everything is normal, I don't think it will ever be normal again. It's very hard when friends talk of plans for holidays and activities that I once took part in. I have this week come off two what's app groups because they are full of plans for the Rock Choir I was a member of until last October when everything changed.  I did try to go to choir after my diagnosis and before surgery but found I could not cope with people stressing about whether they would be able to learn the lyrics or moves in time for a concert. Of course I used to stress about those things too. I try to keep reminding myself that I will go back to choir and my other social activities but at the moment that seems to be in some parallel universe. I am meeting more friends for lunch tomorrow they are all really supportive but I am hoping there won't be too much holiday talk. Keep strong. X

MBJ
Member

Re: February 2019 chemo starters

Hi Marlyn

I think the T shirt sounds fab. Funny enough I used to do Am Dram too many years ago. I still enjoy supporting our local group who are very good. I am so glad it did NOT meet your expectations as they were very imaginative. 

I hope you are still feeling human tonight, take care. X

Implausible
Member

Re: February 2019 chemo starters

Blooming autocorrect.  I did type Trixie!  It changed it to Tricia 🙂

 

Still waiting....sitting on my hands to try to warm the veins up for the anaesthetic 

 

(When I'm not typing on my phone, anyway)

Ally2019
Member

Re: February 2019 chemo starters

Hi Marlyn, 

 

I am glad all went well today xx 

Marlyn
Member

Re: February 2019 chemo starters

Good luck.....catch you later....we got this xxxxx

Implausible
Member

Re: February 2019 chemo starters

Wow! Lots to catch up on, this thread moves quickly!

 

Big congrats to both of the first timers for getting through day 1 with no major upsets.  That's really encouraging to read for those of us who are still waiting to start.  Hope the nausea holds off etc.

 

I'm in hospital as we speak waiting to be taken down to theatre as I'm having a portacath fitted (my veins are a bit rubbish).  Anaesthetist has just popped by for a chat and I could go any minute, apparently, so I'd best not chat long!

 

Tricia, sorry to hear about that back pain, sounds horrid, glad they got you comfortable.

 

Oh and that immunity boosting injection - they had mentioned it before but they hadn't told me I had to do it myself at home!  Eek!  Don't mind the pain (it only looks like a tiny needle anyway) but it's a bit daunting to have to have a needle in yourself 🙂  I'm sure it will be fine, and saves yet another trip to the hospital at least.

 

Sarah

Rosina
Member

Re: February 2019 chemo starters

On reflection they probably offered it to my friend as I didn’t have anything.

Crawley Hospital ( Comet Ward) is very calm and has lovely seascape wallpapers in the Chemotherapy Ward.

Re. The cold cap it’s like having an ice pack applied to the head not like biting into ice cream as I thought it would be.

My nurse got me to touch it before putting it on and she also said that once the first 15 minutes are over you don’t even notice it. She also suggested that I held my cup of ginger tea to take the edge off the initial shock but it really wasn’t bad. I had been thinking of Polar explorers the night before which was plain stupid but it did make us laugh.

 I did do another 15 minute walk around the block as the sun is out.

In pjs now. Feeling fine. I will take my anti emetic at bedtime as prescribed.

Marlyn
Member

Re: February 2019 chemo starters

Hey Rosina,

well, we have both got that first one under our belts. Just got in....on sofa in jimjams eating soup...just feel a tad light headed but ok.....

chemo nurse was a darling couldn't have been better......

 

the whole thing wasn't as bad as I had expected.....I had blown everything out of proportion.....but it was fine....

i also had a ginger drink..lol....and sucking a strong mint seemed to help too...

 

well.....onwards and upwards....we are actually doing this for real......fec!!!!! Xxxx

Ally2019
Member

Re: February 2019 chemo starters

Hi Rosina, 

I'm glad that all went well xx 

Rosina
Member

Re: February 2019 chemo starters

Jeepers, it was a 3 course menu at my place. Couldn’t believe it. They even offered it to my friend.

Seaside Sar
Member

Re: February 2019 chemo starters

Ah, well done Rosina. That all sounds very positive. Bit jealous of the extensive lunch menu though! I got a choice of either a ham or egg sandwich 🤐😂😎 X

Rosina
Member

Re: February 2019 chemo starters

Hello again,

 I have just returned from the Comet ward, yes that’s the name of the Chemo ward.

 I did the cold cap and it was absolutely fine.

 I took a thermos flask with fresh ginger tea, which I have been sipping.

 I took fresh pineapple chunks (delicious) and a hummus and cucumber sandwich (all from home). The ward has an extensive lunch menu but I had my own.

A friend from work came along after the chemotherapy part was over so the extra hour and a half just shot by chatting.

My chemotherapy nurse is fab and we agreed that we would rather have the chemotherapy than regret not having it  years down the line.

 I walked to the hospital this morning with a rucksack on my back and my husband saying that I was practically in Boy Scout mode.

I didn’t need the blanket as is is practically summer out there.

 I spent my time on my iPhone chatting to friends and sending them goofy selfies of myself with the cold cap on.

Then my friend dropped me off home.

 I have a back pack full of drugs and I will follow the instructions.

On wards and upwards. Tally ho !

Sissy60
Member

Re: February 2019 chemo starters

Well you are very well qualified to understand the trials etc.!! I studied lots and wasn’t convinced about the value of chemo with the 26 to 30 score for post memo.  Mine is a 19% chance of recurrence, so 81% not ... my Predict score said no chemo. I know the onco is gene expression yet my tumour was grade 2 so not aggressive probably like yours. I still don’t get why chemo as stage 1 has good prognosis and they weren’t bothering to do oncotype. Wish they hadn’t in some ways as the score has now wrecked my peace of mind!! It’s all statistics ! It’s so hard to understand why the score was that as I got no more details from docs... they not up to speed when I asked them how much my 19pc recurrence would go down by with chemo they couldn’t tell me. But did say 15 women in 100 with this score would benefit.. so 85 it’s for nothing....Yes! Drugs totally freak me out too as I’m not even great with normal stuff! When do you start again??  Are you in south east?! Xxx

 

MBJ
Member

Re: February 2019 chemo starters

Hi Sissy60

I read and analyse everything, I was a nurse,health visitor and for 27 years a university lecturer in nursing and health visiting. When I read all about the drugs I freaked out and decided the risks outweighed the benefits for me. But then I spoke to my BC nurse and she said that with my ONCO score I would benefit then she did the PREDICT scoring tool with  me too. She then said as she always does Dr James you must stop reading and let us look after you. Easier said than done hey. 

Sissy60
Member

Re: February 2019 chemo starters

Have a great birthday lunch! It’s good to know another 60 plus with a borderline onco score as we are rare and hopefully chemo will be gentle with us:) xxx

Sissy60
Member

Re: February 2019 chemo starters

I analyze everything too.. some of us are made like that! I was fine (ish) until onco score though and docs were surprised by it which freaked me out! So got a bit obsessed why I have one of 30 with stage 1 grade 2 BC. The docs can’t explain it to me...sometimes the reading helps doesn’t it?! Xx

MBJ
Member

Re: February 2019 chemo starters

Hi Sissy60

Welcome to the group no one wants to belong to. I know how you feel about chemo it was not on the cards for me either but my ONCO was 27 and in my BC center they only work up to 50 not 100. So now I am having it. But I also had a positive lymph node had a clearance and was only in 2. I am starting FEC-T on Wednesday pre assessment on Monday. I am fed up of waiting now and really need to get it going. The support and information on this forum is fantastic it's a real life line. Good luck and I know we will be chatting again very soon. On by the way I will be 65 in March. Off out for lunch for our son's 40th Birthday. Take care x

Ally2019
Member

Re: February 2019 chemo starters

Hi Bescann, 

 

I am well today, thank you. I’m sending you a massive hug for tomorrow. I will keep you in my thoughts, please let me know how are you tomorrow ❤️

 

 

Susie B
Member

Re: February 2019 chemo starters

Hi, I started chemo on 8th Feb and like you didn't fancy the idea of self injection. Luckily my husband has volunteered to do the deed as he had to practice on himself whilst in the RAF, but I may need to step as he does go away occasionally. I understand how you feel. I'm due to have my final jab (for now) later today. Nowhere near as painful  as the doc/nurse saying you'll just feel a little scratch as they zapp in yet another needle for bloods,etc. I think the thought of doing the injection is the worst part.. So far I have had no side effects from it but we all react so differently from all these different concoctions. Take care☺

 

 

Sissy60
Member

Re: February 2019 chemo starters

Thanks:) thank goodness for this forum!

is anyone else starting in two weeks approx?

ive got to just go with decision for now and make best of it... hard as my husband goes away with work and daughter went to Uni in October and my friends are lovely but can’t really understand and I hate to bore them and swallow the tears when they discuss holiday plans and hair appointments! All things shall pass is my motto.... xxxx

Marlyn
Member

Re: February 2019 chemo starters

Thank you sissy60,

 

hubby bought me a a tea shirt with drama queen written on it....did ponder on if I should wear it this afternoon......

its a strange old world  we have entered ....surreal indeed.....got told all along I wouldn't need chemo....then all of a sudden I do....reading all your threads help enormously.....

 here's to all of us lovely beauties.... said with a big sweeping bow and a rose clenched between teeth....exit stage right.....xxxx ( knew my amdram would come in handy one day) xxx

Trixielady
Member

Re: February 2019 chemo starters

Sorry Sissy60 that message left before I'd finished it,  I think it's a very difficult situation when you have friend in that position but hopefully your oncologist would have advised you what way he'd prefer you to lean it sounds like you've made your choice and decided on chemo, like you already know its so different for us all we all have different breast cancer stages grades lymph node involvement but the treatment this day and age is better than its ever been. This is a lovely friendly supportive forum don't forget to pop in and out of the others the ladies have so much experience over the other forums to give they're wonderful xx Big hugs positive thoughts stressing and not sleeping doesn't help it feeds it they say xx

Sissy60
Member

Re: February 2019 chemo starters

Good luck marlyn. I’m right behind you lol.

im starting 28th. Which one are u on? Hope all goes well I think you’ll do well and being an ex actress being a drama diva is fine .. it’s a strange time for all of us - first performance on the chemo stage😳

Trixielady
Member

Re: February 2019 chemo starters

Morning Sissy60

And a very warm welcome, so sorry to hear about your friend and understandably how very very difficult it is to make choice knowing that chemo probably won't be plane sailing 

Sissy60
Member

Re: February 2019 chemo starters

Hello

i start chemo on 28 feb 2 weeks today and am very anxious!! Everything was fine told no chemo - stage 1 no nodes or vascular involved. But then oncotype was 30. Was told it’s still really a grey area but chemo recommended but had a choice. It’s been awful deciding as always been scared of chemo as my friend got a blood cancer from it after BC preventative treatment. I’m told that’s rare and sure it is but it’s different when you know someone it affected. I feel so well it seems mad!!! Told chemo only helps 15 out of 100 women like me! Aagh! Anyway, decided to do it but I’m 60 so concerned re my age too. Didn’t sleep last night for worrying which won’t exsctly help! After reading about neutropenia. Getting portacath fitted next week so anyone had that?? Got 3 EC cycles then Paclitaxel weekly for 12 weeks can’t imagine lasting that long lol. Hope everyone enjoying sunny day today.... xxxx

Trixielady
Member

Re: February 2019 chemo starters

Hi Sandraindurham, hope you're both well and your daughters wound area is improving, I'm hoping for a day out today haha.... unfortunately..... it's only to keep my friend company whilst she attends a hospital appointment at least we'll get lunch out it will be strange being in a hospital and not having them ask for me! I'll actually be able to smile again xx take care big hugs 

Marlyn
Member

Re: February 2019 chemo starters

Well my beauties, it's chemo day today and to say I'm bricking it is an understatement....just want it over with and to be sat on my sofa watching most haunted.....

 

if if I am not a writhing wreak on the bathroom floor and my fingers don't have bubonic boils on them I shall endeavour to post later this afternoon......wish me luck! I love you all ( said in an extremely dramatic and diva way) xxxxxx

Trixielady
Member

Re: February 2019 chemo starters

Hi Implausible 

Sorry hunny did you miss that thread, its an injection to help raise our white blood cells you'll probably know about it all by now?

Hope your doing OK ? I didn't have any problems with mine until the 6 night /early hours woke with terrible pians in my back if only they'd let me take stronger pain relief sooner I probably would have been ok, but instead spent all day yesterday in the chemo unit being checked out they eventually let me take some oxoycodone, my unit says it happens but so much pain was very rare it usually happens on day 1 or 7 and only lasts for 24 hours thankfully it did xx

Trixielady
Member

Re: February 2019 chemo starters

Oh where has that annoying little bloody Robot gone ? I was just starting to get on with him,  now we just need a save button please, so I still keep losing what I'm writing coz onnce I've checked it or made a mistake with buttons you've guessed it, it's gone xx

Trixielady
Member

Re: February 2019 chemo starters

Hi Sarah, hopefully you've now had time to touch the ground and keep running like the rest of although now slower, it's an unwanted and long journey but hopefully the end results will be well worth it. There's so much information on here it's really great to be able to dip in and out of the other forums, I've been trying to follow an alkaline eating plan and increasing my fruit and veg haha its not easy coz I hate fruit and veg but made much easier by making smoothies and soups,, then I went and spoilt it by having a subway, then macdonolds the day after chemo,, Anyway only meant to say good luck and welcome xx

Trixielady
Member

Re: February 2019 chemo starters

Morning Rosina , hope today goes well with chemo and the cold cap  don't forget a wolly hat, I couldn't try it unfortunately as I suffer terrible from migraines., I'm 11 days from first chemo now and doing well I keep checking my hair and nails, nails ridged but hair seems OK but beginning to think I had it cut shorter far too early but never mind I had to be positive and productive, big hugs xx

Trixielady
Member

Re: February 2019 chemo starters

Morning Marlyn, Good luck for today, it really isn't as bad as you think hun xx

Injections are to help the body produce white blood cells into the bone marrow  , mine started on day 3 after chemo for 7 days and I was good until day 6 then experienced pains in my back but apparently this doesn't always happen,, don't forget to ask if you can take more sickness tablets if still needed, xx

Marlyn
Member

Re: February 2019 chemo starters

Implausible . Jabs in tummy???? What's that all about??? Xxx

Implausible
Member

Re: February 2019 chemo starters

Today has been a crazy long day, and hard work!  So I'll go through all today's posts and reply and update properly tomorrow.....

 

But.....

 

One thing.....

 

Nobody told me I have to inject myself in the tummy!!!!!

 

 

Ally2019
Member

Re: February 2019 chemo starters

Hi Rosina,

 

I hope you are well.

 

I have the smae book and felt it was brilliant too! espcially with the pointers to ask questions xx

Seaside Sar
Member

Re: February 2019 chemo starters

Hi Stargazer1,

 

You do make me smile - I've now got a vision of someone going around the shops wearing gloves and carrying a bottle of anti-bac! 😅 Don't worry, I'm exactly the same. I was in a shop earlier, pointing at everything I needed while hubby filled up the shopping basket. As soon as he was ready to pay, I ran outside to get away from everyone! It was a bit mental to say the least. The security guard must have wondered what on earth I was doing! 

 

 

Trixielady
Member

Re: February 2019 chemo starters

Hi Marlyn, I applied dark purple nails polish the night before and left it on a for nearly a week afterwards my nails appear ridged now, also been using nail oils and hand cream (don't know if it's all in my head) can't really remember the condition of my nails because they had polish on them. I was advised no gel nails due to infection xx 

Good luck for tomorrow xx I was advised my anti-sickness tablet taken the morning off chemo lasted for 5 days but what they didn't say is that I could have taken another from the packet they gave me to bring away that night if needed xxx

 

Seaside Sar
Member

Re: February 2019 chemo starters

Hi lovely ladies,

 

In answer to the nails questions, I painted mine the night before chemo and actually asked the nurse how to proceed from there. She said just to remove and reapply as needed. So when they started chipping, I reapplied a fresh coat. So far, so good. And yes, acetone free remover is recommended to retain some moisture. I've also tried to remember to use cuticle oil every day.

 

Having said all that, it does depend on which drugs you are being treated with as to the extent of nail damage. I've so far had FEC, which apparently isn't as damaging to the nails as Taxotere/Docetaxel which I will have from cycle 4 onwards. 

 

All that to look forward to!

Marlyn
Member

Re: February 2019 chemo starters

Hi mjb, you right....non stop fear...yikes!!! Didn't know if removing old varnish was a good idea but then just to keep re applying for 4 months doesn't seem like a good plan either!! Xx

MBJ
Member

Re: February 2019 chemo starters

Hi Marilyn

I think it's to protect our nails from the light. I think you will need to do it every few days as I did mine a few days ago (as a practice run) and they looked really crappy today. I have also seen that we need to use alcohol free nail varnish remover. I am going to ask at my pre assessment about gel nails as I muchh prefer them but I think it will be a big fat NO. Our bodies are not our own anymore I had to have written permission last week from my BC nurse before the beautician would do a microblafing top up for my eyebrows. I .am sure we will both be glad when we get this first one over with the anticipation (fear) is non stop. 

 

Becsann
Member

Re: February 2019 chemo starters

Hi Ally2019

I completely understand the emotional side with getting your treatment plan, it’s really tough and I hope you feel a bit better about it now. 

I start this Friday and you start Monday, very close to each other. I understand the nervous feelings too, I wake up every morning and for that few seconds it’s not there. I am really scared about Friday, just went and bought a lovely soft blanket to take with me. Shopping for bits and pieces is strangely calming. Then again I love shopping so it’s probably just switching off for a bit. 

You absolutely can do this, us girls are made of strong stuff. 

Take care of yourself and good luck for Monday. xx

 

Marlyn
Member

Re: February 2019 chemo starters

Right you lovely lot, what's this black nail varnish about then? Do I apply it tonight ? ( chemo starts tomorrow) then just leave it on the whole 6 cycles? Or do I take it off and re apply weekly? Someone out there who can help me out? Xxx

MBJ
Member

Re: February 2019 chemo starters

Hi Daisy di

Welcome to our group, the waiting for chemo to start is really hard I have known I would be having chemo since the begining of January and am having my first session next Wednesday. I have had two surgeries a MX with reconstruction and a lymph node clearance. I am trying to keep life normal what ever that is any more?? This week I am going out a lot meeting friends for lunch, shopping etc things I imagine I won't be doing for a while. There is loads of advice on this forum about preparing for chemo and coping during it. Hope to see you on here again spoon. Good luck. 

 

Rosina
Member

Re: February 2019 chemo starters

Hello Clare 

( and co) I got my hair cut short ( it was already a pixie) so I guess it is a fringe less pixie. 

I told my kids ( 14 yr old son and 16 yr old daughter) about the cold cap and said that it is 50% - 50% that it works . My son said ‘do you really want to go all tufty? Might as well just let it all fall out ‘. This made me laugh. I told the Chemotherapy nurse yesterday and she tried her best to get a really good fit for me. 

Tell Anthony you are not going to have a ‘monk look’ was her comment.

We laughed again.The best medicine 🤪

Nettienoo
Member

Re: February 2019 chemo starters

Thanks for the great tips everyone. I’m off to hypnotherapy session number 4 tomorrow. I feel they do help with the anxiety. Trying to keep busy until I have the first chemo under my belt 2 weeks today.......gulp!

MBJ
Member

Re: February 2019 chemo starters

Hi Marilyn

Good I am glad it went well and you were somewhat reassured by your visit. I know what you mean by blurting it out I did in Boots when I was looking for bicarb toothpaste ! 

 

Stargazer1
Member

Re: February 2019 chemo starters

Hi SeasideSar 

Thankyou 🤞🏻 for the Emend, I’m already dreading next time but have been assured that is the ‘best’ anti sickness meds, I’m not sure until my review appt what else they will give me. 

I know what you mean about buffets I’m not keen on them at the best of times but will certainly avoid them at the moment. 

I was thinking pasta or pizza without any salad on the side in case it’s not washed properly 😂 oh gosh so much to think about. 

Im about to pop to the shops, I want to wear gloves (in case of germs) 😂 & a hat (to cover my greasy unwashed hair) but it’s too warm, oh my goodness how my life has changed! My new accessory is anti bac gel 😂😂 xxx

MBJ
Member

Re: February 2019 chemo starters

Hi Sonia

Sorry you have been feeling so crap. Yes we must a avoid people with germs but avoiding hubby is difficult, been trying it for 44 years love him. Get well soon, hope the wig shopping goes well. 

MBJ
Member

Re: February 2019 chemo starters

Hi Claire

This does sound catchy bit like a pop duo. I am having FEC-T much against the grain I must say. Seriously  though good wishes for tomorrow. Let us all know how you get on. X