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February 2019 chemo starters

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Re: February 2019 chemo starters

Ooh and send up a prayer for the February girls! I think you should go... use that STOP nasal spray from Boots helps protect from germs. I’m developing earache and headache oh no do hope it’s not a bug🤦‍♀️🤦‍♀️

MBJ
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Re: February 2019 chemo starters

Hi Daisydi

Wellcome to our lovely supportive group. Yes cancer sucks and we are all going to kick it's backside. I am going to cold cap, having my hair cut short first, I am having FEC-T. Three cycles of each. I also have two cats one of which is sleeping on my lap as I type, and a dog. I also have a long suffering husband, poor thing I don't think he knows what's hit him. He has had to work out how to turn the oven on !!  Good luck and keep posting. 

 

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Re: February 2019 chemo starters

What a lovely mummy you are. Can feel you feeling her pain as I would with my daughter. She’ll be ok with you thereSmiley Happy)

MBJ
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Re: February 2019 chemo starters

Yes he is good Sandra and my sister is very supportive she is a nurse like me so practical and sensible. Although I don't feel sensible at the moment 😯. So I will feed my spiritual needs on Sunday and try to avoid the nasty germs 😷🤧👾👾.

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Re: February 2019 chemo starters

I hear you, MBJ, but let us put it this way: soon you will be able to be back to a spontaneous life and you should do something wild!

Communion at home is the best, how lucky to have a brother vicar, he will be able to know exactly how to support you through this.

MBJ
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Re: February 2019 chemo starters

Hi Sandrainduram

 Thanks for this sounds horrific probably shouldn't have been taking it for the last 50 years yuk.  I will just take the bread which is what I thought. But I will risk the germs, as I really need to go to Church before chemo on Wednesday. I will wear gloves so I won't shake hands skins to skin  when sharing   the Peace. 

I have not been for weeks as I had a chest infection and feel it will help my peace of mind. My brother is a vicar so he will bring me home communion if I can't go in the next few months. Oh so much to think about and plan. Whatever happened to spontaneous life. 

 

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Re: February 2019 chemo starters

Regarding the the injections to boost immunity, how painful are they, and how often do you have to have them? wil it be the same to have just the one or several? Any side effects, besides the pain (I presume it will be back pain?)

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Re: February 2019 chemo starters

Hi Sarah, I think I have spend more hours reading this forum than anything else in my life!

I have read that several ladies here spoke about pineapple as something they can eat to ease symptons, especially really cold or in popsicles so I will have them prepared, in case of need.

I will not be able to ease her pain or to feel any of the dreaded symptoms of chemo, this is the least I can do, try to prepare as much as possible to help her.

Member

Re: February 2019 chemo starters

Hi Sarah

i have the single injection on day 2. When I previously had chemo back in 2011 I had injections over five days. It’s much easier having just the one. And yes the back pain kicks in within a week. I bought a heated back pad on amazon which has really helped and was prescribed Oramorph oral solution for if the pain got really bad. I had 3 cycles of FEC and 3 of T back in 2011 followed by a month of radiotherapy. good luck with it all.

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Re: February 2019 chemo starters

Daisydi!  That was it.  Should have been easy to remember as my son's girlfriend is Daisy.  But I think my "chemo brain fog" has set in already despite not actually having had any chemo yetSmiley Happy

 

Sounds like you have really been through the mill already with 3 surgeries Smiley Sad  hope everything goes more smoothly for you going forward.  I am also doing 3 cycles of FEC and 3 of T, followed by a month of radio.

 

Trixie, I really do love your attitude.  I am also hoping to keep life as "normal" as I possibly can during the 18 weeks, albeit without taking silly risks.

 

I'm hoping to get back to work quite soon but it will be mainly WFH, especially in the most infectious week in the middle.  

 

But I've been signed off for the first 4.5 weeks so I can go through 1 and a bit cycles first to see how I get on....

 

One more question..... the injections to boost your immunity.... I see some of you have to do these multiple times?  I've been told once per cycle, exactly 24 hours after end of chemo infusion, soon day 2.

 

These things seem to vary so much regionally, or maybe it's just case to case....?

 

Is there anyone else who just does it once on day 2, or are you all days 3-7 with a nasty bad back at the end? Smiley Sad

 

Sarah

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Re: February 2019 chemo starters

Oh gosh Sandra - I thought I was super prepared and have bought a mega box full of stuff, but after reading your extensive list, I now feel like a total rookieSmiley Very Happy

I think I missed the memo about pineapple, can someone enlighten me? (Luckily I really love pineapple!!)

 

I'm home from having my portacath fitted.  It sticks out a lot more than I thought it would, but the kids think it's hilarious that mum now looks like an android Smiley Happy and I've never been one for low cut tops, so nobody will see it anyway.

 

I've spent the afternoon styling 2 wigs to look a bit more like how I would wear them.  Thinking of thinning them both out a tad too as they are much fuller than my usual hair.  But they are cool, I do like them.  

 

My hair probably won't fall out now, just to spite me Smiley Happy

 

Welcome aboard to our new lady whose name has jumped out of my head, and while I'm writing this I can't go back to check, sorry!

 

Sarah

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Re: February 2019 chemo starters

Thanks ladies.  We will be fine and I thought I was healthy until this little bliter came along!

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Re: February 2019 chemo starters

Trixielady, you are absolutely fantastic!!!!!

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Re: February 2019 chemo starters

Daisydi, 

sending you lots of love and blessings.

Member

Re: February 2019 chemo starters

Hi Daisydi 

I'm on Fec-T as well, with the T I start herceptin but not thinking that far ahead.

My first wasn't too bad, fingers crossed for you hun but I suppose it still depends on dosages and other factors and general health xx

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Re: February 2019 chemo starters

Im having 6 sessions of FEC-T the first 3 FEC and then 3 T.  

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Re: February 2019 chemo starters

Hi Ive already had 3 surgeries, the first in October, second in November (where they forgot to do the anc) and then 3rd revision and anc on 10th Jan.  They found an area of DCIS near my original tumour which caused all the problems as they couldnt see it.  I was only expecting radiotherapy but had 4 nodes positive out of 24 removed so got the chemo call.  I am going to cold cap and really hope not to be ill as I live alone with 2 cats and 2 rescue dogs.  Dont have time for this cancer rubbish!

Member

Re: February 2019 chemo starters

Hi Sandra 

I'm absolutely fabulous at the moment going out to the Ramside Hall Hotel tonight for a meal,, really looking forward to doing something normal getting dressed up it seems like I let my life change with my diagnosis but no more, taking one day at a time and if energy levels temperature is good and I'm well enough life will hopefully remain as normal as possible starting tonight, slowly slowly does it as long as I'm aware that whatever I might be experiencing is a normal side effects but the emergency helpline are absolutely fantastic xx

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Re: February 2019 chemo starters

Thank you Trixielady, I did not know about this.

We have an appointment with the chemo nurse on Monday, and I will ask her about this.

How are you feeling?

Member

Re: February 2019 chemo starters

Hi Sandraindurham

So pleased your daughter has a start date . 

I had my hair cut much shorter before chemo but I'm pleased I haven't shaved it yet 11 days after first FEC and it's still great apart from needing a dye that apparently it can't have until 6 months after chemo. 

I find pineapple fab going to try freezing tinned but think I started using a soft toothbrush and sensitive toothpaste too soon even though my mouth is tender at times went back to my electric brush feels fresher, I have found my taste bubs lacking but enjoying fruit & Veg smoothies .

Sandra just make sure with the oncologist that you have some strong pain relief in place that can be taken if necessary, I didn't and had to go nearly 12 hours before they decided I could have something to manage my pain due to Neutrophils injection xx

Member

Re: February 2019 chemo starters

A Sash nurse is the home visiting nurse. Your district nurse I guess.

You are doing your best. 

Sending positive energy. 

Breath. 

No more headless chicken stuff 🌸🌺🌼

Member

Re: February 2019 chemo starters

Hi Daisydi 

Forgot to ask what your actually having and is it before or after surgery for you? Sorry not sure if you'd already wrote it on a thread xx

Member

Re: February 2019 chemo starters

Never heard of that MBJ?!

i read to keep away from animals and like you I got three cats and new puppy. You just have to be careful not to get a bite and wash hands a bit more. 

Just looked up flower thing and it looks like florist is right as they carry germs harmless to normal people but not to immune suppressed. Great eh? And it’s only a few days a month immune system properly down but people go to work on chemo don’t they? Think we need to be sensible. I won’t touch roses as they have thorns. My friend re did her entire garden during chemo... hands in soil and garden centers. So who knows. It’s a pain isn’t it🌷🌷🌷🙄

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Re: February 2019 chemo starters

Feeling it too daisydi. 

My friend texted me and said it’s six months and that’s not long in scheme of things. I actually felt better after I read that ...for about 5 minutesSmiley Wink I’m 3 days after you. Starting EC at 75% for 3 then 8 weeks Paclitaxel. 

Walking every day, guzzling water and I’m doing the Valter Longo fasting before as so many of my pals said it lessened side effects massively...and makes chemo more effective according to the research. Will try it anyway.

Youre not alone 🥰

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Re: February 2019 chemo starters

Hi daisydi 

Oh hun I know it's easy for us to say but it really isn't as bad as we all make out! Saying that I had a total melt down the day before mine,  I'm 1 a head of you  back on 25th for my 2nd. Honestly most of my first chemo has been managed well just keep checking that whatever happens is part & parcel of chemo anything to uncomfortable or different you ring them plus keep check on temperature xx big hugs 

 

 

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Re: February 2019 chemo starters

Hi Rosina, thank you so much.

Being a celiac, she cannot eat much of the wholesome foods, I bake at home and we rely heavily on fruit, vegetables and home made food at all times. We have been burned many times by the 'safe gluten free food'.... not!

I do not know what is a SASH nurse, but we had district nurses here. Unfortunately most of the times they have hurt when taking dressings out and caused further issues.

Lucky me, I am trained to deal with these situations, and I have managed to clean and dress the wound properly.

We are doing Giquong at home but no, we do not have any extra services in Durham, even the 'Look good' workshop does not come here.

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Re: February 2019 chemo starters

Eeeeeeek!! Just got my start date of 25th Feb.  Now gone into panic mode

Member

Re: February 2019 chemo starters

Dear Sandraindurham, 

I am truly sorry to hear about your daughter ( leaking wound). 

Have the SASH nurses not been round?

 The face mask will not protect from a virus!

Please reduce the anxiety and panic.

You are well prepared. 

Eat wholesome food, relax, watch fun films. 

Reduce the stress levels.

Sending you positive thoughts.

Is there a Cancer Support Center nearby for some complementary therapy? Reiki?

Reduce those stress levels.

Most important!

MBJ
Member

Re: February 2019 chemo starters

Hi Girls

Does anyone know if it's safe or not to be given flowers when we are on chemo as the florist told my sister that she should not buy them. 😣

 

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Re: February 2019 chemo starters


@MBJ wrote:

 

I now have another sort of worry. I will be going to church on Sunday but do I risk the communion bread and wine??? I think I might just have the bread and not the wine as everyone drinks from the same cup. Oh the possibility of GERMS 🤧😷😱👾👹 is never ending. Can't get any now before chemo on Wednesday just had antibiotics for a chest infection 2 weeks ago. 

 

Hi MBJ,

Please do not share the wine. Before all this I was training for ministry and although alcohol content is high it is not enough to kill bacteria and virus, and you will be risking herpes, colds, flu and all sorts of nasty stuff.

And I would not advise church either. Many people will be ill and the air will be full of what you do not need when your immune system in non-existent.


 

MBJ
Member

Re: February 2019 chemo starters

Hi All

Well had a lovely morning out with girl friends, coffee then a look around then lunch. I have already put on 9lbs since I stopped going to Slimming World last September. I am like my dog I need short term pleasures at the moment and that is usually for him and me food. 

I now have another sort of worry. I will be going to church on Sunday but do I risk the communion bread and wine??? I think I might just have the bread and not the wine as everyone drinks from the same cup. Oh the possibility of GERMS 🤧😷😱👾👹 is never ending. Can't get any now before chemo on Wednesday just had antibiotics for a chest infection 2 weeks ago. 

Now waiting for my sister to arrive from Hampshire 😀.

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Re: February 2019 chemo starters

Right, after many complications with a constant leak from her wound, my daughter is finally starting her FEC next week, on Thursday.

We are absolutely terrified and I look like an headless chicken.

I have ordered rosemary oil and almond oil for her scalp (she will have her hair shaved before starting), Bio oil to try to prevent eczemas, nail oil for daily treatment of her nails, special moisturising gloves to protect her hands and nails, face masks to protect from virus when we have to travel for chemo, loads of Purell and Dettol in all forms, including the one to do the laundry, small plastic spoons to be used when using creams, lotions or lip creams in order to avoid spreading bacteria, Simple shampoo, loads of disposable gloves and those disposable plastic shoes when entering the house until I can reach my indoors footwear, antibacterial socks to keep her feet confortable with mosturising cream, two thermometers, Bicabornate sodium, Difflan and Listerine to keep mouth ulcers far away, ginger cookies, trying to find pineapple ice lollies, if not, I am going to try do it and mints.

Am I forgetting something? Any advice about what is working for you, please, please, please?

I am keeping my poker face whilst completely panicking!!!

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Re: February 2019 chemo starters

Hi Stargazer1 

I had rang the emergency helpline they had advised paracetamol and then ibuprofen 2 hourly alternatively but it didn't shift it eventually was allowed by oncologist to take oxoycodone. Seen Oncologist today who's said unfortunately the injections are a must so be prefared for same things next chemo cycle ( lovely man) but to take oxoycodone before bed on my 6th night he's still saying it's usually the 1st or 7th day xx take care 

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Re: February 2019 chemo starters

Yes it’s wise to avoid germfests! I’m getting through the antibac hand spray .. And that nasal spray that stops colds. I never felt so well in ages it’s such a waste😂 Yep 6 blipping months... and back to our new normal and life more precious for it! Xxxxx

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Re: February 2019 chemo starters

I was due to spend Sunday in London with pals, but as a couple of them have colds, and I really don't want to risk having to put my first chemo back, I've cried off.

 

I'm sad as it was going to be my last "fun" day for a while.  Thinking of something I can do instead that's less germy Smiley Happy

 

All in all this is a 6 month or so blip, and we can all get back to our lovely full crazy lives afterwards.  I reckon it will go by quicker than we think.

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Re: February 2019 chemo starters

Yes forests are the best you’re right! Healing trees aah. 

I think a happy thing a day is good ideaSmiley Happy

Mine is superficial but we had new French door and new windows in kitchen yesterday, ours were falling apart! It’s such a pleasure looking out to garden now and clean windows hehe! Cheered me up☀️☀️☀️

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Re: February 2019 chemo starters

Hi Nettienoo, Enjoy your weekend away. We went to London before chemo day. Way too busy to give Gremlim (that's what we call my unwanted guest) much thought. You'll be surprised at how much good a few days away can do😊

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Re: February 2019 chemo starters

Sunny good morning

hope everyone has an okay day today.

i woke up with the usual anxiety! Haven’t really slept properly since diagnosis , can fall asleep but wake up very early and then the mind starts up. I do want to be a resilient warrior but am more a jelly on a plate Woody Allen style...!  

On the onco score I did get obsessed and worried about it... it’s been in the US for ages and they’re more clued up on it. I speak to a couple of women who said no to chemo with scores in the mid 30’s. They are ok 9 yrs on and one who had a score of only 4 had recurrence so it’s not perfect by any means. One has a score of 59 and ok after 12 years but did chemo as would be sensible! The Tailorx trial didn’t focus on 26-31 score so all the data for grey area is taken from other trials. . Oh well it’s better safe than sorry eh?

Im glad your portacath all ok, Sarah. I’m having mine under local so just in and out they said. I’m trusting it’s all ok to not have a general but didn’t have a choice....yes definitely something in the grief thing I’ve heard it many times...and mine was similar timing to yours. Mine was there a while as I thought it was scar tissue as it came on site of a previous lumpectomy... right under the scar!

 

Of course having a good weep over hair and cancelled holidays is normal and natural. It’s those things that remind us our life is on hold for a bit and not in a way we’d ever wish for. Ice hockey tour Stateside sounds awesome... I think we go through such a lot from diagnosis to surgery to chemo, radiation and the bit I don’t fancy is the hormone therapy for next 10 years! It’s easy to feel isolated although it’s so common! So many women around where I live have had it and now just getting on with their lives ... and that’s encouraging! As one said to me seeing others carrying on is tough but you have to suck it up.. and people say some weird things but just have to let it go...my BC nurse said a good weep is therapy... start of chemo can be most daunting bit. Hoping weekend is good for all and that all who started are feeling okSmiley Happy

Glad you are all hereSmiley Happy)

Roz xxxx

 

 

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Re: February 2019 chemo starters

Hi Rosie, pleased to know that like me the cold cap experience was ok, so many seem to have  a terrible  time. I had my first session last Friday. I don't know if this will help, but I am on FEC chemo and was given the worst offender for hair loss first followed by the one that may cause some loss. The nurse then started the clock for the time needed following chemo for the cap to hopefully do it's job once the second one had dripped through. By the time the third lot had gone through, which doesn't cause hair loss, saline pushed through my PICC line, meds to take home explained, etc, etc, I was ready to go. Hope this makes sense. 

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Re: February 2019 chemo starters

😂😂 backspin!!! If only 😂 back pain xxx

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Re: February 2019 chemo starters

Hi Trixielady I’ve been looking through the forum to find your message about backspin. Day 8 for me and was woken up in the night with bad pain in my back, hips and legs. I went out last night with hubby for a meal & all sorts going through my head, was it something I ate? Oh no was it that 1 glass of wine? So I’m grateful to know that you had it too, thank goodness for this forum. I’ve taken paracetamol but it hasn’t gone, thinking of ibruprofen next?xxxx

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Re: February 2019 chemo starters

Forests are the best 🌳🌲🎄🌵🌴

Remember to hug some trees ( or pat) when you get the urge.

Member

Re: February 2019 chemo starters

My happy thing today is that I am going for a weekend away with my family to Center Parcs at Woburn Forest. Last trip before chemo starts in 12 days (not that I’m counting! Lol). Because I’m worried about picking up an illness, I won’t be using any of the facilities and will just spend my time in the lodge and outside in the forest. Looking forward to the change of scenery because I haven’t been out very much recently due to recovery from mastectomy and reconstruction. Sad to miss out on the Spa and pool but I’ll be back there to do it ALL as soon as I can. 

Love and hugs Jeanette xxxx

ps it will make up for cancelled trips to Philippines and Amsterdam a bit.

 

 

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Re: February 2019 chemo starters

Hi holiday chat, we had to cancel I got our money back from TUI but unfortunately as my sister and family weren't on our booking she wasn't covered yeah obviously she could still go but there was no way she was going whilst I was going back under my absolutely wonderful surgeons knife the exact day we were due to fly off into the sunset for my hubby's 50th but I'd been lucky we'd already celebrated my lovely 50th & 12th wedding anniversary in July fantastic cruise can't believed how quick we were converted from hubby walking my feet off  no sunbathing always busy to lovely relaxing sea days fabulous menu's & entertainment, sorry got carried away with the happy memories that seemed a lifetime away and from happening again but back on track my sister gave her holiday to her partner & family they only need to pay a change of name fee. I thought it would have really upset me looking at the photos but it didn't it made me believe I'm gonna beat this coz I want my lovely wonderful life back I'm not willing to give up without one hell of a fight, but we did manage a small 50th birthday party for the select few scared silly of getting ill before my chemo started xx Stay positive lovely ladies  we should write on here one happy experience to each other every day however little silly or big it maybe to remind us we're alive and happiness is in our control xxx big hugs xx

MBJ
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Re: February 2019 chemo starters

Hi Rosina and all

Yes I have read that book too it was very good. I am a realistic person, who has carded for many individuals during my years as a nurse and health visitor and witnessed much suffering at first hand. So yes I know that many people are dealt a terrible hand in life. I am really an upbeat sort of girl who enjoys family friends and my wonderful dog and cats ( who are the bane of my husband's life). Ha ha. This is our new normal and deal with it we all will in our own strong ways. So I am off to get ready put my heated rollers in (won't be doing that much longer) and going off out for coffee with the girls on a very lively Friday morning. 

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Re: February 2019 chemo starters

Also thinking out aloud here re. Planned holidays apart from cancelling altogether another idea would be to allow / offer/ suggest for someone else to take the place of the person who can’t go : good friend, relative ( older/younger) why not?

 I am sure both parties ( the one going- the one staying) would have lots to tell each other when they get back together.

Just a thought 🌈

Member

Re: February 2019 chemo starters

Morning MBJ ( and fellow readers)

just one more penny ‘s worth from moi:

My day job is a Special Needs Teacher and I tell you plenty of kiddies have been dealt a very poor set of cards indeed but it’s how you play them that counts!

Funny I am applying , all the tools of the trade to myself now. 

Song comes to mind :

https://youtu.be/MN1AtzLrW4Y

🤪

Member

Re: February 2019 chemo starters

Morning,

Re. Predict , I did it myself first ( it was mentioned in my book ‘The Complete Guide to Breast Cancer by the 2 lady doctors Greenhalgh and O’Riordan and they actually state doing this with your medic)  and then asked my Breast Surgeon about it and we did it together on her computer which was better as she drew my attention to the benefits of chemotherapy 10 years from now which I hadn’t noticed).

The same book also mentions the Oncotype Dx which is given in the NHS when you’re borderline. Quoting from the book :

’ You are given a recurrence score: low, intermediate or high. A large trial called TAILORx showed that if your score is high you should be offered chemotherapy. If it is low or intermediate you should be able to avoid chemotherapy. although individual factors such as your age will also be taken into account ‘.

MBJ
Member

Re: February 2019 chemo starters

Good morning Sissy60 and all you lovely ladies. 

Yes I think the ONCO trump's everything else as it's individuals to us and our tumor. In Singleton Hospital here in Swansea they also only work to a score of 50 not 100, so with a score of 27 I was definitely getting chemo.

Now on a lighter note yes Swansea or as it's better known the Gower coast is fantastic, Mumbles is really lovely and the scenery is beautiful. We do get a bit of rain but then it would not be the green green grass of home without it.

Another hectic day today out later for coffee and lunch with some girl friends. Bet I won't be doing that Next week !

Member

Re: February 2019 chemo starters

Morning everyone.

 

First of all, most importantly, I did get my brie and cranberry baguette at about 9.30 last night and it was delicious! Smiley Happy

Now I'm waiting for my brekkie.  People turn their nose up at hospital food but here it is lovelySmiley Happy

 

I should be heading home around lunchtime.  A little bit bruised and achey from the portacath insertion but not in pain as such. All seems to have gone very smoothly.  They took me for an x ray to double check it has gone into the vein ok and I assume it was all ok because nobody has said otherwise (I was still coming round from the general anaesthetic so didn't actually think to ask!)

 

All this talk of cancelled holidays, I also had to cancel a big trip - we were due to head out to Chicago on March 14th, and then embark on an ice hockey round trip taking in Colombus Ohio, Detroit and St Louis as well as Chicago itself.

 

Annoyingly the insurance covers the flights but not all the hockey tickets, which cost more than the flights!  I'm trying to resell them but no luck yet Smiley Sad

 

I feel kind of guilty because the trip was for my other half 's 50th and now he misses out.  Obviously he is being super understanding, but still....

Missing the holiday has been the only thing so far on this journey that I've had a real good cry about, which makes me think that I've got my priorities wrong!

 

I also got a twinge of jealousy when a pal posted yesterday with a new , stunning dye job on her lovely long hair just after I had mine all cut to a super short pixie pre embarking on chemo.  It felt selfish of her somehow although of course it wasn't!

 

Funny how we fixate on the relatively trivial things

 

All that said, I'm still feeling relatively upbeat.  

 

Oh - re oncotype.  Mine was pretty high  - 34 - which is obviously worrying to a point!  But at least it means that I know the chemo will likely help me and it's not a waste of effort.

 

And one other thing .... doc reckons that my tumour may have been there for about 2 years (I lost a lot of weight - intentionally - towards the back end of last year and she says that's probably how I spotted it, as my boobs have lost fat and got smaller, and it was probably hidden behind the fat before) - 2 years ago this week my dad died and that was a big deal for me.  So maybe there is something in that whole "grief sets it off" theory!

 

Sarah

 

Last PS I've never been to Swansea, it sounds lovely!  A trip may be on the cards in one of my not-feeling-too-grotty chemo weeks! Smiley Happy