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February 2019 chemo starters

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Re: February 2019 chemo starters

Oh Implausible you could have done with more. Help and support. Too much for one person to deal with. But I know that it's not always easy to get the help you need for various reasons. Take care x

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Re: February 2019 chemo starters

Hi Marlyn

Well I love cheese and potato pie and baked beans but whether I will at the end of the week is another matter. 

Just washed the locks for the last time 😥 got a head full of heated rollers in now. They will then be relegated to the bottom drawer. Having it all chopped off on Tuesday. Early start tomorrow have to be THERE for pre assessment at 9am, which is really early for a retired person. Oh it's all so scary. I am 65 but feel 5 and would like to hold my mother's hand, if only. 

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Re: February 2019 chemo starters

Hi All, just checking, what was the worst cycle (1st, 2nd, .....)?

How did you feel after each one and afterwards, in each week of interval?

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Re: February 2019 chemo starters

And as for smells...I couldn't even cuddle my cat last weekend as her smell was enough to tip me over the edge. I have stopped wearing perfume and my nailpolish was truly turning my stomach the other day. This is worse than being pregnant!

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Re: February 2019 chemo starters

Oh Trixielady, I know what you mean about the personal hairs disappearing already...Still, think of all the time saved on waxing, etc.

 

Hi Marlyn, glad you're feeling better today. Cheesy potatoes was all I wanted in that first week too. In fact, anything with cheese was good. The bowels were an issue for me too. I will be asking the oncologist on Wednesday but I suspect she'll recommend Senna. I'll let you know.

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Re: February 2019 chemo starters

Hi MBJ and Implausible, thank you for your kind words, and I am so sorry, you both had it really nasty on Feb.

There are trying months, really. Me and my husband had our birthdays in August and he died in August.

I try to ignore the entire month!

Keep strong, ladies, this week... arrghhhhh!

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Re: February 2019 chemo starters

Hi mjb,

 

yes!! The poisonous tuna sandwich!!! Well I have to say I am feeling a lot better Tonight, eaten cheesy  mash and peas and ice cream. It's really odd how your taste changes, I love quorn but it tastes nasty 😷.....oh and toast! Bloody vile.....however I can highly recommend arrowroot biccies...

 

good luck for wed....now to get me bowels in action!!! Xxx

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Re: February 2019 chemo starters

There still isn't anywhere to visit my dad.

 

I sorted out the will, all the probate, and spent months clearing and selling the house.   My sister was supppsed to sort the headstone and burial of ashes.

 

Ashes are still in an urn on her shelf!

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Re: February 2019 chemo starters

Hi Implausible

Yes these few days in February are very significant for us as a family for both sad and happy memories. Yes I am sure your dad knows how much is. Going on in your life at the moment. I can't even go to visit their grave at the moment it's just too much for me to bare. 

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Re: February 2019 chemo starters

Report.  Not repeat.

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Re: February 2019 chemo starters

Oh and PS.  Not desperately high priority as things go, but I'm happy to repeat that the wig stayed on all day at the seaside despite strong breezes and I had a really fab day.  Nice to have one last day of freedom and enjoyment before the big day on Tuesday.

 

And Marlyn - I'm glad you are on the mend.  What a horrid start for you:(  really hope they can tweak things for you next time so it's all less rotten! 

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Re: February 2019 chemo starters

Oh gosh my dad died on Feb 17th too! (2 years ago) and it's only seeing you writing that down that has made me realise it's today!  I feel a bit guilty for not spotting the date sooner, but I reckon my dad would realise I have a lot on my mind right now and I have no idea what day of the week it is at the moment, let alone the date on the calendar 😕

 

I never forget when my mum died as it was on my 40th birthday.  She always did like to grab the limelight 😄

 

Sandra you and your poor daughter are really due some better hands of cards 😞  I'm so sorry that you both have all this nonsense to deal with on top of everything else.  We will all be with both of you every step of the way x

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Re: February 2019 chemo starters

Hi Sandrainduram

Yes I really got a great deal from going to church this morning. Also it's lovely to see people I usually catch up with on a regular basis. Missing out on lots of things at the moment like everyone else here. Voluntary work with the church, ladies that lunch group etc etc. But I will be strong and get through this so I can get back to my lovely life. Your daughter has had a lot of issues to deal with in her life, she is lucky to have you and be so close to you. I was very close to my mother who lived next door all my married life. It will be the anniversary of her death on Tuesday 4 Years she was 87. It's the anniversary of my dad's death today he died young too been gone now 44 years. So these few days in February seem to recur for us as a family. My son and my father's birthday on 19th Feb and mum died,  my Dad died on 17Feb and it's also my brother's daughter's birthday today, and my chemo starts Wednesday. Going to stay in bed all of February next year!!  

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Re: February 2019 chemo starters

Hi Marilyn

So please you are feeling better. None of us know how it will affect us. Goodness knows how I will be after my first one on Wednesday. Three years ago I ate two sandwiches in a party and had an Anaphylaxis!! But at least I have got two EpiPen's 😀.

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Re: February 2019 chemo starters

Hi Trixielady

Thank you for the good wishes. I will be glad now to get this first one done so I know what I am dealing with. My Sister lives in Hampshire but I live near Swansea so it's a fair distance. I think she was most upset because they are off the Kuala Lumpur on holiday on Wednesday. We are really close she is 11years younger than me so I think I mothered her a bit when we were younger. But she is a very practical dependable woman again she is a nurse too  (obviously runs in our family genetics). Have been cleaning the house with hubby's help. I think I have got more cleaning stuff and germ Ridders than anyone else in Swansea. Let's hope your temp settles, gosh worry if it's up and now if it's down too. 

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Re: February 2019 chemo starters

Hi MBJ, when the spiritual is part of our daily life, we feel liberated by being part of the service.

How are you feeling?

My daughter is very, very scared, not only of chemo, which she will start this Thursday, but from everything.

Every cough, every pain means now a possibility of cancer somewhere else!

She hasn't had an easy life,because she has terrible migraines and cluster headaches with triggers like using a computer for more than an hour, going to a movie or to a place with some lights, or even a sunny day.

She has a malformation in the mouth that does not let her sleep normally, she has extreme varicose veins in both legs and she has to keep an eye when she is seating, or she is in bed, she is a celiac, so most places to eat are a no-no, she has had periods in her life that she couldn't even move for months.

And now this.

A year ago I was very ill with a serious problem in my kidney, ending with its removal, and she spent an year afraid that she would lose me.

We do not have anyone else, my husband died very young with an heart attack, so we are so close that we even speak at the same time, the same things!

I feel like I am dying when hearing some of the things she is saying, but I make a straight face because she has to let it out.

It is not easy and I wish I had more family with us.

I keep telling her about all the posts here, and how everyone is going through **bleep**ty times, but it has an end and she will live to get stuck with me and my shenanigans for many years.

Reading your posts here is giving me a lit of courage! 

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Re: February 2019 chemo starters

Well ladies, day 3 of chemo and just starting to feel human, it really knocked me for six! I was hoping to be one of the strong ones but alas I was the writhing wreck on the bathroom floor...

 

managed to keep food down( little and often)  but I now seem to have developed a ninger nose, I feel like an elite sniffer dog! It's truly horrendous, poor hubby pops to his mums for food.

 

also got a right tingling head, like pins and needles......

 

take care my beauties.....keep trucking xxxxx

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Re: February 2019 chemo starters

Hi hunny a big hug! My scalp got really sore to the touch as hair started to fall. It was two weeks after 2nd chemo. It wasn't painful at all if you didn't touch it! Touch it  and I'd kill you. i did all the protective stuff and didn't wash hair etc. Sometimes it doesn't work. You haven't failed and once you get used to it it is quite liberating. Pubic hair disappears almost unnoticed. I found eyebrows and eyelashes the last to go. That's tricky cos you then really look like s cancer patient

 Contrary to what I read on net however they grew back first. You will cope really well and find untapped strengths

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Re: February 2019 chemo starters

Hi MBJ, so pleased you took the risk and went to Church I bet it was lovely to feel part of your church again. It's like every thing you do from now on in once your first chemo is over on Tuesday you'll feel less anxious because it's definitely fear of the unknown, as long as your careful around people and watch out for situations that could possibly put you at risk, I bet you loved seeing your sister, I leave 15 minutes away for mine but for two weeks before starting chemo she had laryngitis so her doctor told her to keep well away just incase, then on the other hand going totally over board doesn't help either so, I've been very careful choosing my activities and people and places to visit I'm on day 14 and manged an hour out for a coffee and a quick look around the shops, so feeling good, Nurse wasn't to happy as my temperature is still hovering around 35.2 so have to be careful as my next round is 25th. Hope your son has a lovely birthday, it will be the boost you need at this time xx

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Re: February 2019 chemo starters

Hi amberthomsonel

So pleased your doing well, can you remember when your hair actually started coming out and how it felt just before it started to happen I think I'm starting to lose for a more personal place and at times my hair seems to hurt, just wish I knew how long it takes and when it happens xx

Have you had the all clear? Xx

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Re: February 2019 chemo starters

Hi Sandrainduram

Well I risked church, it was lovely to be there, bit emotional now and then. I took your advice and did not take the wine, and wore gloves to shake hands during the Peace. But I am glad I went. 

Oh it's such an emotional time its exhausting, my sister was upset when she left yesterday, just spoke to my daughter and granddaughter in Abu Dhabi, hard being so far away from them. Thank goodness for what's app. My son will be here on Tuesday for his 40 birthday, the day before I start chemo. 

There are some pluses though my husband is hovering and mopping the floor I have given him a chore list poor man. Hope things are not too bad with you. 

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Re: February 2019 chemo starters

I have two chin hairs. Those little beggars survived 6 cycles!  Otherwise I was beach body ready. There is a plus to no imaac!

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Re: February 2019 chemo starters

Hi Implausible,

 I agree the Guardian Article was biased towards the negative IMO.

 I have been very lucky and haven’t had any problems so far after my first dose. 

I personally wouldn’t fork out £1.600 on hair. Every one has different priorities.

I am looking forward to see if my upper lip hairs go as they have been waxed , threaded, plucked and are still going strong.😂

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Re: February 2019 chemo starters

Sorry to but in to this thread but wanted to post from the post chemo viewpoint. Last chemo on 26 October. Yes it was sh*t but doable. I did cold cap for two sessions. I didn't find it bad ( have to say pain of FEC in the veins much worse) I began to lose hair so went for the shave. Wept in the car but after that it was totally OK. My hair is growing back. It looks like a fashion choice now not a cancer patient. But the hair that fell out has grown back as baby blonde, the hair that was shaved and didn't grow has grown back black! I looked like a badger so have dyed blonde. Once you have lived with no hair for a few months you can cope with anything. I am rocking my inner Annie Lennox. You will too!

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Re: February 2019 chemo starters

Hi Seaside Sar,

 

Thank you😊, that'll be great.. Yes, I'll keep you up to date.

 

Cheers

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Re: February 2019 chemo starters

Hi Susie B,

 

Lovely to hear from you and of course I don't mind you dropping by.😊

 

I will report how things are on day 14 (tomorrow, eek!). Right now at day 13 my hair is still going strong. I'm planning to wash it tomorrow though so that will be the test. Like you, I will be facing a regrowth of grey hair, so either way I'll need a cover up! I haven't committed to a wig yet but I have got my eye on one just in case. I also have some lovely headscarves ready for any bald patches!

 

Let me know how things go with you as well.

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Re: February 2019 chemo starters

The card I’ve been given says over 37.5 and under 36 - that’s not much wiggle room! I think I’ll have the number on speed dial... struggling to get the thermometer to read over 36 now but thankfully the backup thermometer arrives today

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Re: February 2019 chemo starters

Trixie I hope you feel better soon.  

I think my doc said I have to call if temp goes below 35 or over 37.5   , I have it written down somewhere.  There's so much to remember/stress about! 😞

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Re: February 2019 chemo starters

Hi Seaside Sar, Hope you don't mind me dropping in, so to  speak, I'm on day 9 after chemo and cold cap.  Would love to know how things are at day 14. Like you I feel pretty nervous too. In process of getting a wig, just in case. Even if I keep enough hair I will need something to cover the badger look as my coloured hair gradually becomes striped with grey🐺.

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Re: February 2019 chemo starters

Hi Implausible, 

That's what I done on Friday checking wig didn't move but then I put it down to having hair x 

Yesterday my temperature was low and never changed much all day put it down to having been out on Friday  only had 3 single Gins. Today got a headache and checked temp before taking paracetamol to find it below 35, double checked it still low so decided to ring emergency line to find out that apparently we're supposed to ring when it falls below 36 if feeling unwell because they are supposed to take you in for checks nobody had said so please be careful ladies. I've asked if I could stay at home for a while to see if it changes I can for now as I'd be a more risk at the hospital xx

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Re: February 2019 chemo starters

Implausible - Love your wig, you look amazing! Enjoy the seaside xxx

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Re: February 2019 chemo starters

You must have more of a head for alcohol than me, that much would put me on the floor! 😄

 

I'm the same with the food shopping, if my taste buds are all going to change, how do I know what to stock up on? 🙂

 

I'm doing an experiment today, have got one of my cool wigs on and heading to the seaside to see if it blows off! 😄  If it does, no harm done as I still have my actual hair underneath 🙂

20190217_105312-picsay.jpg

 

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Re: February 2019 chemo starters

Night out was good! Not too many drinks... couple of cocktails and four bog standard ones, I’m starving now!! Just gonna eat as normal today and see what happens, rather have a good day today than sit here feeling empty and stressed!

 

More concerned about not knowing what to put on the shopping list to eat during the week!

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Re: February 2019 chemo starters

I think there’s a bit of a break between chemo and rads as our immunity has to build up again ..what a bloody pain it all is 🙄 I think I’m finishing chemo @ June 20th as I’m not doing the entire 12 weekly one. No way!

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Re: February 2019 chemo starters

Ha!

 

What a coincidence.

 

I'll let you know when I have my dates.

 

Sarah

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Re: February 2019 chemo starters

I’m getting it there too! It’s fab place. Really nice people and top equipment!  I’m in OX4:)  10 mins away xx might even have same person. Well I never! 

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Re: February 2019 chemo starters

I've had a bit of a wobble today too, not like me, I've been mainly ok up until now, I think it's because it is getting so close now.  

 

The place I'm having radio is a private clinic called Genesis Care.  My work insurance is paying for it.  Not sure exactly where it is but it's in OX4

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Re: February 2019 chemo starters

Wow! I’m very near hospital! Is it John Radcliffe or Churchill?

It’ll be a few cuppas and a massive hug waiting for you! 😘😘 I start a week Thursday so not far behind xxx feeling a bit nervy tonight... been fine all day🥴

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Re: February 2019 chemo starters

Sissy you're in Oxford?  That's where I'll be having my radiotherapy as I'm just down the road in Swindon and we don't have a radiotherapy facility here.  Small world:)

 

I start chemo Tuesday.  I guess I could fast up Monday but I don't know if it would be worth the effort.  Other half wants to take me out for a nice meal tomorrow and he would not approve of me starving myself for 2 days especially given the chemo nurse expressly telling me not to!

 

If I get rotten side effects this first time around though, I'll give it a bash next time.  Can't do any harm I guess. 

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Re: February 2019 chemo starters

Hi Rosina, 

 

Cheers, I will try it xx 

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Re: February 2019 chemo starters

Hi Sissy60, 

 

Thank you, I will try it. I’m about to do some reading, so I will also share what I find. 

 

I hope that you have a great evening xx 

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Re: February 2019 chemo starters

It does indeed Sarah... but at least we know there’s an end to it.. holding on to that. And how we keep our peckers up throughout (def not that kind of pecker thanks😂). There’s something so weird about feeling so well and knowing in a short time it’ll be zombieland. I like that article though! It’s so honest and she didn’t have anything major go bad.. and she didn’t have a band to rehearse like we have!🎤🎹🎸🎸👩‍🎤💃 or a circus gig🎪 And the second chemo seemed ok. I think she was properly depressed as her husband had got killed the year before🙇‍♀️ So that must’ve made it all feel worse too. Not lucky😳

A statistician omg that’s impressive as I’ve been going through the oncotype stats for ages working out that they used different trials to get to the RS score. And altered the intermediate score. It literally is statistics in action informing our treatment protocols so I was desperate to understand it! But not a maths gal... was an actress who failed maths  gcse but do long to understand it as Ive been studying philosophy and that gets quite mathematical !. Put my course on hold for now:( I was so shocked when doc said only 15 women out of 100 like me would benefit from chemo. I had no idea they did it like that and 85 don’t need or benefit.. but it’s stats again innit?! The doctor could NOT tell me how much my 19% recurrence risk would go down to by doing chemo. I asked so many times!

What day are u starting? You could just light eat day before ..it all helps , but some ok without fasting anyway but our immune system kicks back in quicker with the fasting. I have IBS and get acid so need to protect my guts from the chemicals. I’ve not known anyone with chemo brain so don’t worry about that - and there’s literally a swarm of women around my area had breast cancer. 4 in my small road alone! Yep.. Oxford is a hotspot.

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Re: February 2019 chemo starters

Oh Edinbird, have a fabulous night out just Becareful  the hangover doesn't run over into Monday if you do drink xx

Just Becareful with pub toilets handwashing remains important because I'm sure they check your white blood cells for infection before starting chemo on Monday at least they did me  .Have lost of fun xx

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Re: February 2019 chemo starters

Edinbird, have a great night out!!  I kind of wish I had a similar "last big bash" to go to 🙂

 

As for that Guardian article.  Gosh, she certainly doesn't sell the whole chemo experience!

 

I'm already too late to fast for 72 hours before, so I'm going to see how the first cycle goes, if it's utterly awful, I'll maybe try the fasting on the second one....  I really don't like being hungry though!  I'm usually panic if I'm more than 2 hours away from a snack 🙂

 

The chemo brain bit is a worry.  I really need to get back to work soon, and my job is very brain heavy! (I'm a statistician, it's all heavy maths).  Months of barely being able to follow Jeremy Kyle doesn't sound encouraging!  

 

Ugh.  It's all so daunting, not knowing how it will affect each of us, everyone's experience seems different....

 

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Re: February 2019 chemo starters

Daisydi attempting to send link. This article swung it for me and has great other handy hints: https://www.theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-can...

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Re: February 2019 chemo starters

I’m just on the bus off for a night out in Edinburgh with my team from work...! So the opposite of fasting! Someone has just coughed up into a crisp packet behind me 🤢😷

 

Been booked for a couple of weeks I only knew chemo starts on Monday on Wednesday! Loads of us at work have been having a rough time for loads of reasons but I know it’s the last time I might see them for a week or so at least so want to have fun but don’t want to get upset or pick up germs!!

 

I don’t have kids and they’re my team (I’m the manager) so I feel bad I won’t be about so much to look out for them and sort out their issues. Determined to try to work when I can so I can keep in touch and some normality I hope 🤞

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Re: February 2019 chemo starters

Thanks will have a look

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Re: February 2019 chemo starters

So sorry to hear you are having a rough time Marlyn. Sending positive vibes your way sweetie. X

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Re: February 2019 chemo starters

You can have bone broth or miso soup but from the info I have it’s best sticking to just water and herbal/green teas. 48 hrs before then 24 hrs after. 72 hours. Then eat veg soups and gentle carbs like rice then normal food. The evidence is so compelling and human trials have shown reduced symptoms because our cells go into protect mode. Leaving the overactive greedy cancer ones out in the open.  If you look up the Valter Longo pre chemo fast there’s good info. I’ve got his book and he’s funded by top cancer organizations, is a proper scientist and it has been around a while. Some journalists have written about it too. A Guardian one called Decca something did it and her account was very honest, she saw real difference in how she felt. But it’s not going to suit everyone. Longo gives a good Ted Talk too. I’m careful so I wouldn’t do it without really looking into it and getting first hand experiences and I’m def going to go for it as it’s totally logical...I wish I could do links but not sure how DOH! A friend who’s a gardener did it ( not the first cycle) and swears by it. She barely stopped working during chemo. But we’re all different. Oncologists were sceptical but a fair few have come round to the fact it can have a protective effect... even a 24 hr fast before helps.  Look up the Decca ( surname forgotten!) article on her experience. 

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Re: February 2019 chemo starters

Hi Marlyn

I thought you had been quiet. Sorry you were so unwell, unfortunately it will probably make you dread the next one more. But hopefully they will change things for you next time and you will be much better. Look after yourself, and look forward to seeing you back here making me laugh.