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February 2019 chemo starters

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Re: February 2019 chemo starters

Hi Edinbird, 

 

Thank you, the gym is the only part of me that helps me keep sane lol. It was definitely chilly today, that is really good about your taste buds, I wish mine would go back to normal. Previously, I could not leave the house without having a cuppa. I was like a teapot, but now I’m like 😒

 

I’m glad that you and your bestie sorted it, I love your picture! It’s a true definition of how I feel. 

 

I agree, it is hard putting oneself first, but we can only get better at it, and for me it feels so good (when I do it). I am currently on my sofa about to watch a film, I brought a Now tv stick for my sluggish days 😁

 

I hope that you have a fab evening xxx 

 

 

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Re: February 2019 chemo starters

Ha, Edinbird, you have found a way round the "Good Place" automatic swearing censors on this forum, put it in a picture! 😄

 

Daisydi I have my "it's not flipping fair!!!!!" angry moments too.  Especially since we all still have months and months of this ahead of us 😕

 

We will get our lives back eventually.  But it does feel like there are a ton of hurdles to cross first, doesn't it.  And I'm tired of it already!

 

Sarah

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Re: February 2019 chemo starters

Think I might be a bit angry today.  Must be getting my mojo back but it really is so hard isn't it?  I cant help thinking about my poor mum who has developed dementia and is in a care home completely oblivious to what her youngest daughter is going through

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Re: February 2019 chemo starters

and dont forget about the hormone treatment which will block oestrogen and ruin your bones.  Sorry rant over. Should be grateful ....

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Re: February 2019 chemo starters

Daisy, I agree with you, it's such a long road isn't it! I'm finding everything an effort, and then I read the chemo stacks up and the tiredness can get worse ( that's me buggered then) and then rads tire you out too!! Oh boy!! Help!!! Xxx

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Re: February 2019 chemo starters

Thanks Edinbird.  I keep looking at my odd breast and cant believe this all started back in Oct.  I have had 3 surgeries including lymph node clearance in January.  This seems to have been such a long and never ending journey for me.  Want my life back now, thank you cancer you have done enough....

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Re: February 2019 chemo starters

Daisydi your immune system is worst 7-10 or 12 depending on what you read... dips down after the treatment and comes back up ready for it to get hit again next cycle.

 

Eat away!! I think we all do what we need to get through this. I’d love to put some weight on my backside departed some time in the early winter I’d love it back!

 

Had my bath felt a bit dizzy getting out must have been too hot! Lump still feels exactly how it did two weeks ago and the nipple still belongs on the confectionery counter 😞

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Re: February 2019 chemo starters

LOVE IT EDINBIRD

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Re: February 2019 chemo starters

Just putting my twopeneth in. 1.   I cant stop eating and its the only things that makes me feel human so I dont give a toss about weight gain  2.  I'm only a week in but rather disappointed to have to pluck chin hair and 3. Im not getting any injections of anything so what am I missing out on?  Also when is low immunity week?

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Re: February 2019 chemo starters

Oh gosh this is the best ever Edinbird! 

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Re: February 2019 chemo starters

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Re: February 2019 chemo starters

Ally well done for the gym! Just went on a two mile walk but misjudged the weather and was rather chilly in my leggings so going for a bath! My taste seems fine so far nothing is bothering me...

 

Sarah bestie is having one of his days but managed to get him on the phone and he’s a bit more perky now. It’s silly, if I was at work I’d have just let him stew and sort himself out but because I’m at home I’m able to fly round in 15 mins so it’s hard to just let him be. Might forgo the shopping and just veg in front of the tv tomorrow but good to switch off anyway. I struggle to put me first and I know I need to.

 

Anyway we had a bit of a feisty chat and I sent him what I’m going to post next - apols if anyone is of a sensitive disposition but I don’t think so... it’s our mantra!!

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Re: February 2019 chemo starters

Hi Sarah, 

 

I hope that you will be able to go Hockney next week. 

 

My weight seems to be steady, but just like you said I have also been snacking a lot more. So, I’ve been going to the gym each day, I’ve been going when it’s less crowded. So I can avoid germs as much as possible. I’m also having lemon and water in the mornings, as I’m still do not like tea or coffee 😩. Xx 

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Re: February 2019 chemo starters

Hi Susie B,

 

My son is only just starting to feel marginally better. He hasn't left the house for a whole week now but at least he is able to eat quite well. He still has a big lump in his neck which the doctor said should go down with Ibuprofen but no luck so far. Glad to hear your son is on the mend. It's hard having to keep your distance isn't it?

 

I know what you mean about hair loss. I'm saving so much time not having to epilate. 😂

 

As for the injections, yes they are one and the same. It just seems that some hospitals give them out as a matter of course and some (including mine) don't.

 

Sarah, I feel your pain with lack of hockey. I was feeling well enough to go last weekend but with my immunity being so low, I didn't want to risk it so I had to make do with the live stream. Not many games left now. Hopefully I can get to at least one more game before the season finishes.

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Re: February 2019 chemo starters

Hi everyone 

 

Glad to say I'm well enoughto start posting again. What a strange array of conversions today. I often wonder if men on their forums are so open?  Do men chat at all!?

First off can I ask a silly question, there's much talk of WBC injections. I'm, or rather my brave husband is, injecting me with Filgrastim (Accofil) for 7 days after chemo to help make white blood cells. Is it that or something else🤔? Leading on from that he admitted yesterday that he hates doing it, not because he's scared to but he just hates to see me going through all this stuff, the chemo, previous tests, losing my hair, the whole lot. It's the most open and honest he's been since my diagnosis. Luckily he's got lots of support from both his mate/ colleague and there are 4 women in his workplace that have had bc and check he's ok. Which leads on from the topic today of hair growth or departure of. One of the girls, the most recently diagnosed came up to him with this little gem. Quote ' Make sure your wife doesn't get a sniffle or cold because amongst other things nasal hair departs too. Nothing to stop dripping nose'. No more explanation required. Have plenty of tissues at the ready🤧. As for other body hair, just realised I haven't epilated my legs for a while. As for the lower garden, that's stayed well trimmed for many years, and not requiring so much attention either. Oops can't believe I've just said that😶.

Moving on to weight loss I lost some after my 1st chemo session then put most of it back on by my 2nd session. Lack of exercise probably caused that🛌🏾.

Seaside Sar, how is your son? Chris went back to work today. We actually let him join us for dinner yesterday since all his shingle spots have dried up and is no longer contagious. He's been having his meals in his television/gaming come sitting room. Bless.

Take care everyone and all the best to those of you having chemo this week. Can I just add I don't how I could cope without the help and support you all offer. Thank you❤❤❤❤❤❤

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Re: February 2019 chemo starters

It’s like you know us! 😂 yeah it’s just how we roll... he knows I’m thinking of him and I’m dreadful at giving him space. Kinda need to know if we are still shopping tomorrow or not! I’m going to go for a walk in a bit try and clear my own head as staring at this laptop isn’t helping today

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Re: February 2019 chemo starters

All you can do is send a message, say you are worried about/ thinking of him, and wait it out 😕

 

Not easy!

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Re: February 2019 chemo starters

Thanks Sarah - he’s being very elusive which either means he’s genuinely feeling sick ill or he’s having a bad day in general. I think it might be both... barely heard from him and he’s not answering his phone. Which makes me worry and I can’t concentrate on anything.

 

As for weight I’ve been 58kg solidly since the start of the year doesn’t seem to budge

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Re: February 2019 chemo starters

Hi all

 

Sorry I've been AWOL, nothing sinister, I'm just feeling surprisingly ok at the moment (touch wood!!) and am just kind of enjoying life while I feel normal and not thinking about blinking chemo and cancer 🙂

 

Not that I've been doing anything too exciting, am in my low immunity middle week so I'm avoiding crowds and stuff, and that means I had to miss hockey this week which I'm sad about as it was an important game and by all accounts a very exciting one. But I'm hoping to go next week fingers crossed.

 

So I've mainly just been going out for walks, and working on the comic I'm drawing. In between catching up on some reading and my Netflix queue. I could get used to this life of leisure!

 

Side effect wise - Edinbird, snap! My short and curlies seem to be on the march as of this morning! 😄 But, touch wood, barely any movement from my head yet. I am only on day 13 though. And my legs are as hairy as ever. I've also got a niggly tooth nerve.... hoping that doesn't develop into anything nastier.

 

As for the tummy jab, I only had to do one, 24 hours after chemo. I stood there like a lemon for 10 minutes going "I don't think I can do this I don't think I can do this", then I pulled up my big girl panties and did it and I didn't feel a thing! The needle is so tiny. So I'm not particularly worried about it next time. It is really weird injecting yourself though! I could never be a junkie 🙂

 

And for those of you feeling rough on day 5, that was my worst day too, I think, 5 and 6  I felt like death!. Hang on in there.

 

Oh a question about weight gain/loss. How are you all doing on that front? In my first week after the chemo, despite constantly snacking on cheese and biscuits, the weight dropped off me. I lost half a stone. But in the second week, despite me eating more healthily (but still a bit comfort food heavy 🙂 ) it's all gone back on. I'm going to try to maintain or even lose a bit in week 3, although that's hard without being able to do as much exercise as usual. How are the rest of you getting on? Or have the scales been banished for now?

 

Oh and Edinbird, I feel for you with your friend situation as I know you have said before that he is quite reliant on you, but you have to put yourself first on this one. Lots of phone calls to see how he is but keep away from those germs!

 

Take care all Sarah x

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Re: February 2019 chemo starters

Hi Marlyn. I had them throughout FEC but still got neutropenic. They have been increased from 5 to 7 with my first T. Maybe it is just a consultant choice but if you suffer neutropenia with any cycles I would have thought they’d be prescribed as a preventative for next time regardless of chemo type xx

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Re: February 2019 chemo starters

Hi Girls

I can see all your discussions on the WBC injections. Well I had mine from day 1post first FEC and we all know how effective they were for me! So I am not sure how much if any difference they make.

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Re: February 2019 chemo starters

Gooooood afternoon everybody!

 

Been reading all your posts and see you're going through some of the pants things that chemo throws at us. Hope you're all managing to battle through it.

 

I've been for my second lot of blood tests this morning and keeping my fingers crossed that chemo can go ahead on Wednesday. Still no mention of WBC injections for me. The nurse said if my bloods are still low they might think about treating it. Ho hum, patience needed on my part.

 

So after that I treated myself with a shopping centre visit. Lovely to do something normal. I ended up buying a crochet book, needle and wool. Feel like taking up a new hobby. 😊

 

Hugs to you all.

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Re: February 2019 chemo starters

I have Difflam spray... I have some Tyrozet lozenges that I already had too so alternating them and the occasional Cordosyl! It’s like a pharmacy in here

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Re: February 2019 chemo starters

Morning ladies xxx 

 

I am gearing up for my 2nd round of chemo next Monday. 

 

Edinbird, do you have Difflam lozenges? I had a bit of a sore throat over the weekend and they really helped. Xx

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Re: February 2019 chemo starters

Edinbird...oh I see!! So not needed for fec? That's a relief...was getting worried for a mo then...but don't want to inject myself ...xxxx

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Re: February 2019 chemo starters

Marlyn, for some reason my consultant likes you to have them throughout FEC-T. A lot of consultants think it’s overkill I reckon. I’m just going along with whatever at the moment. Neecy, we can do this. 💉. Edinbird, I shook the first time and couldn’t look but honestly hardly felt a thing. Mine need 30mins warm up time out of fridge so don’t sting then. X


@Edinbird wrote:

Marlyn I’m on FEC-T - I don’t need it during the first three FEC but I do for T... so I’m glad about that as it makes me cringe every time I think about injecting myself 😝


 

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Re: February 2019 chemo starters

Marlyn I’m on FEC-T - I don’t need it during the first three FEC but I do for T... so I’m glad about that as it makes me cringe every time I think about injecting myself 😝

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Re: February 2019 chemo starters

Nettienoo, I'm with you today... Zero energy having started vilgrastin, the white cell injections yesterday. I can hardly lift my arms to put the kettle on! I am hoping it will settle down. X

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Re: February 2019 chemo starters

Hi nettienoo. I have often wondered why some of us have the injections and some don't....I don't and so worry as to why not? You post 5 days? Well, I can tell you ( without jabs) this was my worse stage, my 3 rd week has been my best , although still tired I can at least drag myself around the house, managed to sort the washing out, make me and hubby breakfast and do a little walk...so...it does get better...hang on to that thought...

Am I the only one pleased to see it raining outside? Now I really can't do much can I?? Just watched " this morning" about vaginas....very interesting!!! Xxx

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Re: February 2019 chemo starters

Edinbird, funnily enough I had this conversation with hubby this morning ( poor man, he really does put up with so much) although I am practically bald on top there is no evidence of loosing it else where, my legs look like I am wearing woolly tights and the lady garden could do with a bit of topiary! Absolutely refuse to do anything about it....stubborn little critters! Xxx

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Re: February 2019 chemo starters

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Re: February 2019 chemo starters

Morning Edinbird,

sorry to hear that you’re not feeling well.

 I have been listening to podcasts and catching up with episodes on Women’s Hour.

 I have also watched a film on Netflix ( it was mentioned in Women’s Hour)

It’s called ‘Period. End of Sentence ‘

Hope you feel better soon,

Rosina

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Re: February 2019 chemo starters

Oh Susie I feel your pain, I am gearing up for second cycle this Thursday, will be beside myself if for some reason it can't go ahead....I am pretty much as bald as a coot now...didn't cold cap but I pray it works for you...

i totally went off coffee in the first 2 weeks but happily guzzling the stuff in my 3 rd week....making the most of it! 

Hubby wont be here tomorrow when my new thermometer arrives, so will have free range for the day, how sad that I'm looking forward to getting a thermometer! Who knew that chemo would send me to such silly places!!! 😜 xxxx

 

 

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Re: February 2019 chemo starters

Hi lovelies, I’m still here, 1st chemo +5 but have zero energy today. 1st day off steroids and today will be day 4 of wbc injections. Been trying to get out of bed to go and have shower since 8😕 Temp is fine. Please tell me it should get better when these injections are finished. I think everyone is a bit down today. Group hug needed. ()()()()()()() xx

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Re: February 2019 chemo starters

Something I forgot to say earlier... head hair isn’t budging yet but down below... noticed a few came out when I went to the toilet and tugged a bit and it was coming out in tufts! Which is fine by me, wasn’t expecting it to come out there so soon though! How hairy are we all apart from the head hair?

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Re: February 2019 chemo starters

Hi Marlyn

 

I'm here........just about. Had 2nd chemo session with coldcap on Friday, felt fine Saturday and Sunday, apart from slight fatigue yesterday. This morning had coffee as normal, my husband always makes a cup for me before he goes to work. I was fine with it after 1st chemo. This time not so good😩. Ended up taking one of my 'just in case' anti sickness meds, then got indigestion so had to take something for that! Also blood pressure all over the place, I feel knackered and my hair is all over the house,  sadly not in-situe on top of my head. I've got visions of going to my hairdresser next week and asking what she can do with the few hairs I've got left😨. I'm taking my wig with me so she can hopefully style it better than I can. Good that you're getting a new themometor, just remember use it just once a day! 

I wondered too where everbody was. Will post later when I feel a bit more with it☺ 

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Re: February 2019 chemo starters

Hi Marilyn

Yes I was surprised at how quite everyone is. I can recommend this tympanic thermometer Fairywill I bought it from Amazon and I think it saved my life.

I am recovering slowly at home. Still really weak but an showered and dressed. Husband is looking after me like a princess to be fair. I am eating well so I am hoping that will help me regain my strength.

Up until now I have not really seen myself as a cancer sufferer just me dealing with things as they came along like surgery and lymph node removal, but this week I have really felt like a sick woman and I realise that that is much more to do with acute illness than the actual cancer. So I needed to get my mojo back so I can deal with my next treatment decisions. 

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Re: February 2019 chemo starters

Morning xx

 

I’m ok throat is still the same, very swollen on one side so just plugging away with the spray. Feeling a bit down as I was going to go and have breakfast with my best friend but he woke up and was physically sick and so cancelled... so now I feel rubbish because I can’t go check he’s ok in case he passes anything on 😞 just stuck waiting for him to wake up again so I can message him or phone him. I’m sure he’ll be ok but it makes me feel useless.

 

Trying to do some work but my heart isn’t in it. Just feeling fed up.

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Re: February 2019 chemo starters

Hi Marilyn Im here just wondering where everyone was.  Hope you're all ok.  Still got my headache but now have permission to take paracetomol

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Re: February 2019 chemo starters

Where is everyone?? Hope your all ok.....very quiet on here this morning...

 

Just wanted to say hubby is ordering me a state of the art thermometer .....I have finally broken him, I found the " hidden" old thermometer ( rubbish hiding place) and temp was 35 followed an hour later by 37.8 , so as I'm feeling well have decided the £5 Tesco thermometer has to go! 

 

I do hope your all ok? Hope to see some action on here soon......oh.....and I love you all xxxxxx

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Re: February 2019 chemo starters

Hello again,

 I have been told that chemotherapy will put me through an early menopause ( I am 49)  and I couldn’t care less. I do have irregular night sweats but nothing more than that.

 I wasn’t expecting any period so this was a surprise. I guess I will shut down gradually? I also keep checking my hair ( I am sleeping in a night cap from suburban turban which is great, as the brim can be pulled down over my eyes and double up as an eye mask).

My brother has joked with me saying ‘Are you sure they gave you drugs and it wasn’t just  a saline drip ?’

I am sure , as my chemotherapy nurse had to slowly feed the drugs in : Epirubicin was red and the cyclo-thingy was milky white.

 I am seeing my oncologist tomorrow and I have reiki booked too.

 

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Re: February 2019 chemo starters

Trixelady 

the same happened to me last Saturday, the helpline told me to get hot water bottle hot drink and a blanket...temp came up....saved from another hospital visit....xxxxx

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Re: February 2019 chemo starters

Susie 

on the day of my surgery when they took my blood pressure I set off the red warning light on it! I was terrified they would cancel my surgery.....suffice to say they didn't....and I managed to live through surgery..lol xxx

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Re: February 2019 chemo starters

Haha I've got the thermometer obsession too got one for home and one for the handbag even asked the nurses in chemo unit to check it against their's xx

She said don't forget we need a phone call even when it drops below 36 ! ! Said to her that's funny coz it dropped below 34.8 and they said i could stay at home keep warm and rest, she was stuck for words but i did admit to her I'd refused to come in with it being my good week unless it had stayed low for an hour or so xxx

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Re: February 2019 chemo starters

Rosina my first period without contraceptives was this time last week and I was in agony! Paracetamol and hot water bottle helped and it’s all done now.

 

Just bought some manuka honey thinking it might help my throat... expensive stuff! Worth a try though.

 

Week three starts tomorrow and I’ve got a day off booked on Tuesday with reflexology in the morning and shopping at the outlet centre with my best mate in the afternoon. Can’t wait!

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Re: February 2019 chemo starters

Hi Marlyn

We only have one because my husband has high blood pressure and is on meds for it..  I usually only check mine when he does, approx every 6 months. It was every day after my first chemo session. I'm  usually towards the higher end of normal, at the moment it's towards the lower end of normal. I deffinitely have  'white coat syndrome'👻. I had cataract surgery  in 2017 I was 182/96. God knows what it'll be come my surgery. I hope they've got copious amounts of sedatives💉.      

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Re: February 2019 chemo starters

Hi Rosina 

Mmm periods, luckily for me they're a thing of the past went through menopause in mid 30s (50now) but hot flushes seem to be raising their awful head again, bless you cramps on top of this must be bloody rough,bed seems like the best place at times like theses big hugs xx

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Re: February 2019 chemo starters

Susie b,

I completely forgot we have a blood pressure monitor! Mine has always been on the high side but never had meds for it...I think I have " white coat syndrome " right....now where did put it?!!! 😉 xxx

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Re: February 2019 chemo starters

Hi Marlyn

 

Me too! Skin on my hands is peeling aswell. I've put it down to antibacterial hand gel. Possibly allergic to it as I do suffer from eczema on my hands so I may need to stop using it.. Frequently use hand cream as normal.

Must tryJennifer Saunders book, it's my kind of biographical reading. I read Linda Bellingham's book 'There's something I'm been dying to tell you' back in 2014 about her cancer journey. Sadly it didn't end well for her, but her story was funny, sad, thoughtful and for me now, helpful. She also talks about her acting career and the time when she received her OBE which makes for entertaining reading📙

Had my 2nd chemo last Friday, and now it feels like ground hog day☹. Knackered and slowly loosing my taste buds. At least 2nd time around we know what to expect.☺.

Keep up with the good work with the themomitor once per day is enough. My obsession is checking my blood pressure. I think the steroids are causing it to drop, or it could be the chemo, so hubby has threatened to hide that away. I'm 5 foot nothing so he'll place it somewhere I can't reach it⬆️ 

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Re: February 2019 chemo starters

Apricot and date cookies

 

From the Guardian food section.

 Date syrup is easy to make :

1 cup pitted dates, 1 cup boiling water cover dates and soak for 1 hour. Add 1/2 of a lemon juice. Blitz.