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February 2019 chemo starters

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Re: February 2019 chemo starters

Daisy, 

you've made me think, I only took 2 weeks off after my died when I was 21. We weren’t given the full picture so I had no idea she was so I’ll, so it came as a huge shock. The cancer thing has brought up so many things I don’t think I’ve ever dealt with, I think that’s why I’m reluctant to go back to work too quickly. I just hope we manage financially. 

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Re: February 2019 chemo starters

Edinbird you have done so well keeping up with work in the first place.  I am at the other extreme wishing I had some sort of work but dont and cant face the prospect of looking for jobs.  I am sure your employers understand.  When I tragically lost my sister in a diving accident in Egypt I went back to work after 2 weeks but I really really couldn't cope with the pressure and some months later had to go off sick.  I was the head of a department but I wanted to work part time which they eventually let me but then I couldn't cope with being in charge and not being there all the time which is why I moved up to Norfolk to get a clean break.  Even though I have left all my friends behind I think it was still the right decision as they were all moving away to be closer to family etc. and we still meet up occasionally.  My work always played such an important role in my life but then I discovered life without work and it is so much easier although I do need to do a little something.  My biggest enjoyment was being able to have the dog I had always wanted and she was my best friend and companion until last year when I lost her at the age of 15.  Have you ever wanted a pet? Just give yourself time.  It is very early days and you are still in treatment so try to be patient with yourself xxx

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Re: February 2019 chemo starters

Edinbird, sorry your feeling so bad atm, when I spoke to one of the nurses the other day, she said we almost need to mourn your old life as it will never be the same, but in the end we will come out stronger than before. I felt it was a bit Patronising at the time, as I was a strong person before, but I think she’s probably right, she also not to go back to work until you feel 100%  as if you go back at 90% you end up worse than ever xx 

hope you manage to 82C52969-9D56-42A4-8180-70F03BD34E68.jpeg

 

56417357-C824-413F-8732-2B0385142156.jpeg

My my hair is still very thin around my ears as my hair hasn’t grown long enough, it’s curly underneath where it’s all grown, make the top long layer stick right out in the morning, 🤪🤪

the camera show my big bags so maybe the lack of sleep is beginning to show 😩😩

good news I rang my local Macmillan group mustard tree, and I can get in the spa day, that I couldn’t attend in may, due to problem PICC. Xx  

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Re: February 2019 chemo starters

Hi guys xx

 

So going back to work didn’t work... felt too overwhelmed was tired felt anxious and came back home. Feel really useless and upset. I’ve gone from feeling bad being at home to feeling bad being there. I understand why people just go off and stay off now. Not sure what I’m going to do except go to Maggie’s tomorrow and talk to them after physio. Everyone keeps saying put me and my health first and I just don’t know how to! I can’t ever have a level of normality again. I feel like I need a new start on everything and out of my depth with work, wish I’d had a bad interview and got the project work now. Sorry for being so down, my sweats have really come back bad this last week so my brain is mush 😞

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Re: February 2019 chemo starters

Nettie I just think thats the way they do it here.  My own hospital doesnt have an oncologist and we have to borrow from the N&N and I think the poor bloke is so overstretched they couldnt do it any other way.  I'm sure they think if you have problems you will tell someone but it doesnt make it very easy.  It must be such a relief to see your hair growing.  Im just noticing as Im typing that my fingers have got hairy!  Yuk! and all the new hair growing is so wayward just growing whichever way it wants.  Dont quite know how Im going to tame it all.  Got my eyelash curlers yesterday and my eyelashes arent quite long enough but I am ready.  I think you all look good with short hair.  I am so lucky that I managed to keep probably 60-70% of my hair but it still looks a mess cos the new hair growing underneath is making the rest stick up.  Anyway speak later x

PS  I can do WhatsApp

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Re: February 2019 chemo starters

Susie, I have serious hair envy, you have so much. Mine is on a go slow probably because I’m scrutinising it all the time and willing it to get a move on. I miss my fringe too. My hairline has receded at the sides since the menopause and it is accentuated by having a widow’s peak. Is anyone using supplements to help with hair growth or specialist shampoos? 

This is my hair growth today (about 5/6 weeks worth). 🙄 82163086-329C-4F2F-BA40-BE618F8FB110.jpeg

 

14C3CE9A-6858-4C61-8AEF-CAD250DC3E53.jpeg

 

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Re: February 2019 chemo starters

Daisydi, do you think you were forgotten. Did you end up calling to enquire, 7 months does seem a long time between Onco appts. Last week I was chasing up my follow up after surgery appt with breast surgeon as back in January, I was told they wanted to see me in 6 months. When I phoned the Breast Care Unit on Friday, they had indeed completely forgotten me. I wasn’t on that system for a follow up appt or further mammograms. Good job I chased it up as mammogram due next month. It makes me wonder what would have happened if I was a little elderly lady who lived alone with memory problems. It seems to happen so often that follow up appts aren’t made. Worrying really. 

Marlyn, I’ve been on Anastrazole a couple of weeks now and am getting a few aches in the joints, particularly my knees. I’m hoping this is just temporary. What is trigger finger? I have an aching toe. Perhaps I have trigger toe? 🤔 xxx

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Re: February 2019 chemo starters

Susie, sister in law 😉

with whatsapp, we just need your telephone number and you to have the app. Works really well and you don’t get charged for sending photos either. Xx

I’m plodding on while I’m in the right frame of mind be back later 💕

Member

Re: February 2019 chemo starters

Hi everyone, again 

 

Daisydi, good to know you've finally got an oncologist's appt but 27th November still seems an awfully long time to wait since you haven't seen since April. What do you do in the meantime if you need advice or encounter problems with the meds you've been prescribed?  The holistic therapist sounds interesting and if she can help with your symptoms that'll be brilliant. Thanks for the compliment regarding my hair. I'll probably still wear my wigs out but not bother at home home, unless I'm having a bad hair day😨😨😀😀.

 

Marlyn, I've heard of trigger finger but don't know what it is. I'll have to Google that one.  As for hair I was quite fortunate in that I managed to hang on to about 30 to 40% of my hair.  Also despite continuing to lose hair after FEC finished my bald patches started to sprout almost immediately. Can't wait to colour it again, starting with some pink running through it. Don't think I'll be brave enough to use your pink spray😆😆😆.

 

Sonia28, sorry I'm a bit thick, what does SIL mean🤔🤔🤔? WhatApp sounds like a good idea, not that I've ever used it. Must ask my personal technical assistant, ie my son, about it. I must say I don't like it when the Forum is down, especially if I or any of us, really need to talk. We all have our moments especially when we're having a rough time, when we need to off load, rant, moan or even cry😭😭😔😔. It would be a comfort to know there are alternatives to maintaining contact. Could you pass the sunshine on to Somerset please☀️☀️☀️ I need to go outside and tidy the geraniums whilst it's dry.

 

Right need to make a start🌺🌺🌺 and start deadheading to poor things. The hanging baskets aren't exactly looking their best. Hugs to everyone❤❤❤❤❤

 

 

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Re: February 2019 chemo starters

Susie think your hair looks great.  Dont think I would bother with a wig if I were you x  Oh and I've just got an appointment through the post for the oncologist Wed 27th November. First appt I've had since April

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Re: February 2019 chemo starters

Susie.....just wanted to say your hair looks really fab, so much longer than mine.....xxxx

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Re: February 2019 chemo starters

Whatsup is a good idea, a good back up for when forum is down....

i still have fumble fingers, it's never left me....Also read the anastrozole can cause trigger finger....bloody hell.....it's bad enough not sleeping and looking like some demented zombie.....but the possibility of trigger finger too! Really??? I don't know whether to laugh or cry....sleep deprivation wreaks the head.....

Member

Re: February 2019 chemo starters

Hi everyone 

 

Glad things are working again. Hate not being able to chat or catch up with all that's going on. 

So I've had my hair cut so it looks like a short crop. It actually looks like a shorter version of my normal style. Wish my hair would hurry up and grow now so that I can have my fringe back. Still I should be grateful that I haven't lost any during this current round of chemo.  My hair bc had a slight wave so I'm hoping the curls will drop as it gets longer. The scruffy look and various shades of grey don't show up so well in the photos.

Just going to have some lunch. Love to everybody.   xxx

 

20190910_092504.jpgBefore hair cut20190910_092357.jpgJust about see remnants of coloured hair20190910_092649.jpgScruffy20190910_113845.jpgNeater at the sides20190910_114343.jpgIt's coming back curly20190910_114438.jpgI want my fringe

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Re: February 2019 chemo starters

Marilyn. I can sympathise with you, it’s hell when you get no sleep, I think my body is getting use to the lack of sleep now😫😫

daisy, let me know how’s you get on, I’d be really interested to see if it helps.

missed you guys, I managed to put a messenger group together but haven’t got everyone’s details, I know you can have messenger without Facebook as my SIL does, but if WhatsApp suits everyone better, that might be the way forward, I felt so lost when the Forum went down, maybe it’s trying to wean me off 🤪🤪

im busy sorting through the house today, feeling sort of okay. Ignoring not feelings in hands and ploughing through, sun shining. Music on and I’ve bathed the dog 🐶, happy Tuesday everyone xxx 

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Re: February 2019 chemo starters

Marlyn, poor you😪😪😪😪. That's how I felt up until yesterday. Moan away. That's what we're for. Get some rest if you can. 

Susie xxx 

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Re: February 2019 chemo starters

Yayyyyyyyyyyyyyyyyyy.  Morning all, its amazing how panicked I feel when I cant get on here.  Know that feeling Maryln.  Ive just booked a session next week with a holistic therapist to see if she can help me with my ailments, mainly numb feet and rotten toenails.  Cant wait to see if she can perform miracles.  So good to be back xx

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Re: February 2019 chemo starters

I want to have a moan before I get chucked out...

 

I didn't even sleep a wink last night!!! Arrrrrrggggghhhhhh!!!!! Today I'm an actual walking zombie with sore red eyes.....I'm wearing a tea shirt that has " dramatic " in glitter written on it.....cause that's how I'm feeling today!!!!

 

noisey workmen don't help either....feeling like a piece of poo.......but I still love you all.....x

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Re: February 2019 chemo starters

Just testing......keep getting chucked out......

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Re: February 2019 chemo starters

Looks like it’s back then. 🙌🏻😊 xx

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Re: February 2019 chemo starters

Testing to see if forum working properly. X

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Re: February 2019 chemo starters

Hi everyone

 

Well it's day 10 after chemo and I'm finally feeling more human. That said, I felt ok the other day, then promptly reverted back to tired mode😪😪😪😪😪.  Fingers crossed I've entered the onwards and upwards stage. On the plus side the mouth wash I was prescribed has worked fairly well so will ask for more ready for my final round. 

 

Thanks Daisydi and  Marlyn for your replies. Judging by how I've been lately I'll probably be knackered like you two😪😩. Can't see me being super human like Rosina and Implausible.  

 

Trixielady, like you I feel more like me when I'm wearing one of my wigs. If my hair colour was anything like Christine Lagarde's it wouldn't be so bad. Helen Mirren and Judy Dench are another couple of names that seem to suit grey hair too. I'll have a better idea of what my hair is like after it's been cut. Also the reaction and comments from both my son and husband will say a lot. Maybe have a brown paper bag ready to stick over my head😆😆😅. You look great in both the photos by the way. Also remeber Cala Bona from many years ago. We stayed in Cala Millor, I think that's the place, which is the next resort down.

 

Daisydi sorry but pension age doesn't reduce for anything nor never has done. Raising the age to 66, especially when it was changed over such a short period of time stiil sucks. I get annoyed😤😤 and I used to work for the DWP, but not on pensions I hasten to add. I actually started in what was the Unemployment Benefit Office, Dept of Employment way back in1975. Eeeeeek!!!

 

Hope the rads are going ok Ocean21. Sorry can't remember if this is your final week or next week. Chemo brain. 

 

As for me the idea was that if I felt a bit brighter today I would tidy up the geraniums but the weather had other ideas so I'm having a bit of a clothes clear out. Using Gok rules, if I haven't worn it in over a year, 2 or 3 in some cases, it's going to charity or the bin. If it's looking worn or scruffy why have I still got it? If it's too tight bin it. I'm being ruthless for once. Wonder how many new clothes I'll be buying 👕👖👗👚👚🛍 to replace what I throw out?

 

Love to everybody.  xxxx

 

 

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Re: February 2019 chemo starters

Morning Susie, being the queen of side effects I dont think I am in a position to answer your question about radiotherapy!  You just have to look at the other amazing ladies who worked through it, went back to work straight after, had holidays etc. etc.  To be honest with my side effects the main contributory factor was the heat and sun which you wont have to worry about in December.  I would say go with whatever makes you happy and deal with anything if it arises.  You may get nothing x

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Re: February 2019 chemo starters

Susie,

just a quick bob in ref rads, as I'm a complete light weight rads knocked the stuffing out of me, I had 23 sessions ( with a double bubble on the last day)  I have never known tiredness like it! ( other than chemo tired) 

i think it took me a good 3 weeks to start to feel more human.....I'm hoping your more like our Rosina and implausible, who quite frankly are super women....xxxxx

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Re: February 2019 chemo starters

Morning everyone from a very wet Somerset🌧🌧🌧🌧 with the prospect of thunder later⛈⛈⚡🌩. I wasn't expecting that😨😨☹.

I've got a quick question for those of you who have had radiotherapy. How long did it take to recover afterwards? I'm only asking because I had established that if I start rads 4 weeks after chemo  finished I would have 3 weeks before going away to London or 2 if rads started  1 wk later. Now hubby says w/c 9th Dec won't be good for him due to work and so we may need to go away on the 2nd instead. I'm concerned that a week may not allow enough recovery time. Any opinions, tips, advice, etc would be most welcome.

Talk to you all later. Have a good day.  xxx 

  

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Re: February 2019 chemo starters

Good morning everybody,

 

I hope you all managed to have a nice weekend and enjoy the last bits of sunshine. Hope you enjoyed your drink in the summer house, Susie. Getting colder now, brrrr!

 

Welcome back Trixielady. I too think you look lovely in both photos but I understand what you mean about not wanting to go out without your wig at home. I keep grabbing the headscarves when I'm out, much to my other half's protestations. He likes my short grey hair apparently. I'm not overly impressed though.

 

Thanks for the photo of Christine Lagarde, Rosina. She does look elegant. Something to aim for. My hair is too spiky for my liking, never mind the fact that it's completely grey. Your colleague's comment is just typical of how people think they're being nice, yet it grates on us terribly. A friend of mine, in response to me saying I would like my hair to grow a bit longer was, "Yes, then you can style it a bit more."  Another one of my friends said, "Ooh, look at your hair!" Followed by, "It will grow." Generally, I'm not getting the impression that anyone (apart from hubby) likes It very much. Haven't shown my Mum yet. Now she's definitely got no filter so that will be fun 😂

 

Have you tried the pink hairspray, Marlyn? Are you going to post a pic?

 

Well, I've had an almost normal weekend with the first ice hockey game since last season, visiting a friend, playing badminton and going for some long walks. Even played the keyboard for a bit but had to stop because of my sore fingers 😔 Still feeling the side effects from barry Herceptin. Getting lots of pins and needles in left hand as well. With one thing and another it's never possible to forget this dang BC.

 

Right, time to get dressed and head out to the shops.

 

Hope you all have a good day.

 

Sar xxx

 

 

 

 

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Re: February 2019 chemo starters

Thanks Sonia28 

Its awful how we always seem to cancel something that we think we don't need just to find out it would come in handy I had one with the GMB but there we go its gone to late now think it actually covers BC, one of my life insurance said if i could not go back to my normal job I could cash it in now otherwise the earliest is in 4 years when I'm 55. Was also advised to ask my mortgage company because sometime they have cover that we weren't aware about but No not mine same about utilities but no not ours. Spent the year before I was due to turn 50 looking for better insurance and illness cover but decided not to bother because i felt well!! If only xx you'll have to put a new photo on xx

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Re: February 2019 chemo starters

Hi Daisy, 

we had 3 life covers so hubby cancelled one last year it was the one with critical illness cover, never mind would have helped but nothing we can do about it now. 

 

Trixie, you look lovely in both photos but I know what you mean about feeling yourself. 

 

Ive stopped getting my eyelashes done, as mine have started to sprout and didn’t want to do any harm to them, but they are taking so long, tried to put mascara on this weekend but they are definitely not long enough yet.

Also the photos hubby took this weekend are definitely going on my before weight loss photos even though I’ve already lost a stone. 😫😫😫

hope everyone has had a good weekend xx

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Re: February 2019 chemo starters

Marlyn sorry it was me getting mixed up although we did go camping somewhere near Shropshire when my sister lived at Cannock. I Know it was a long shot but the lady i met on holiday had a friend called Marlyn who was diagnosed at the same time but think she lives in Wales xx

We live near Durham xx

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Re: February 2019 chemo starters

IMG-20190906-WA0000.jpgFeel much more like me

 

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Re: February 2019 chemo starters

IMG-20190908-WA0000.jpgMy hair absolutely hate it! Wouldn't go out at home without my wig

 

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Re: February 2019 chemo starters

Yes Rosina grey is fashion at the moment!

Another thing I meant to say is that I have just been reading about finance and have noticed that lots of ladies have had pay outs from their critical illness insurance, just in case any of you have it.  Unfortunately I dont.  What I was really looking for was whether they would lower the pension age with a bc diagnosis as currently I have to wait until I'm 66 but I think that's a bit of a long shot but it bothers me that I may never get back my hard earned money!

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Re: February 2019 chemo starters

Christine Lagarde

 

One classy grey haired lady 

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Re: February 2019 chemo starters

Hey SusieB,

I had to respond to this :

“ bc is not going to force me to go grey gracefully and show it to the world.”

Well this is exactly what I have done ( I will see in December- 6 months post chemo if I wish to colour it or not as I don’t dislike it, if Christine Lagard Head of the IMF can pull it off then so can I 🤪).

What got to me on Friday was a colleague at the photocopier saying how she admired me for going ‘au naturel’ - I was very diplomatic in my reply, but when I got home I told my daughter ( she wants me to dye / highlight my hair ASAP and tells me without mincing her words 😂) and I said something along the lines of ‘she - said colleague- needs to look at herself in the mirror first what with her pot belly and wonky teeth , does she also need admiration for going ‘au naturel’ 🤯

What is it with women coming out with ridiculous comments about someone else’s appearance!!!! I know it was meant as a compliment but it’s a stupid one.

Rant over 🙏 ohm.

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Re: February 2019 chemo starters

Hi everyone 

 

Still feeling tired😪😪😪😪😪 despite sleeping for a couple of hours yesterday afternoon and sleeping well last night.  Just returned from Asda with hubby. We only needed a couple of bits but the trip out has done me some good.  Also returned with a pair of jeans👖 and a couple of pull on bras so no hooks to mess around with which weren't on the shopping list🗒.

 

Trixielady, welcome home🏡☺. Stairs can be a pain but I use them as a guide as to how fit/unfit I am. A good day is when I automatically rush up them without thinking. Only managed that one day since last chemo on 30th Aug😩.  Regarding hair, mine is growing back slowly where I had bald patches but I am still having chemo (TC) and cold-capping. The new hair seems to be growing back curly and is making the hair I managed to keep stick out wildly, especially first thing in the morning. As for colour it's a horrible mix of various shades of grey with white at the front😺😾🐺🐈🦍🐭🐨🐇. I'm having it cut on Tuesday so if I remember I'll do a before and after photo. I still intend to wear my wigs out. Barrying bc is not going to force me to go grey gracefully and show it to the world.

 

Marlyn, I was tempted to find out more about the Dyson hairdryer last year and perhaps put it on my Xmas present ideas list for hubby, then  Gremlin turned up so put that one on hold. You'll have to let me know if it's worth the money. I must say I am impressed with their vacumme cleaners. Hope to see a photo of your pink hair. It'll be ages before I can colour mine. My brother is up there too on the uncaring relative league table. He hasn't asked once how I'm getting on, commented on me getting through chemo, surgery, etc. I stopped bothering about him a couple of months ago. Like your sister he is happy to talk about his travels. I did copy him into the e- mails I sent Mum but gave up in the end. We've never been close but I've always shown concern/interest when he's had surgery or health issues. 

 

Must go now hubby has a drink for me in the summerhouse.

 

Will catch up with you all later.  xxxxx 

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Re: February 2019 chemo starters

Maryln you've just reminded me I need eyelash curlers.  Trixielady I managed to keep most of my hair, probably lost about 30% but all around my face it is growing back white and curly and it does seem a bit slow only about an inch long.  Its a bit of a strange look but cant do anything about it. Eyebrows are growing randomly and eyelashes growing but very slow.  Can only put clear mascara on to try and train them where to go instead of straight down into my eye!  Maryln all my sister talks about is holidays, she has booked 3 since I finished my treatment!

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Re: February 2019 chemo starters

Trixelady....lol.....I now live in Shropshire....been here 3 years after moving back from Spain.....where do you live? 

 

Iv had a bit of a spending spree in boots today, got some pink hair colour ( spray) now I have hair! Also used my dyson blow dryer for the first time since Feb.....ok....it only took 7 seconds to dry.....but! 

Got eyelash curlers....now I have eyelashes ! And got some pretty pink nail varnish....now I have decent nails! Also got some stick on heat pads for my back, never used them before so hoping they work....last night in bed was pretty uncomfortable.....

 

hot flushes....now they've really ramped up since meds! 

 

Lovely day today...my ideal weather, sun out but nice and cool.....hope your all doing as well as you can..xx

 

oh...ps... my sister has got to take the first prize for being the most uncaring sister....I sent her a pm asking how she is ( I last heard from her last month....and it was me reaching out) I got a long reply back about how much she is looking forward to her Spanish holiday next week....about how she is learning Spanish.....and guess what? Not one question on how I am.....not a one....think I'll stop bothering.......

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Re: February 2019 chemo starters

Ladies where are we with hair?? mine is coming in slowly my last Chemo was end of May the sides and back are ok but the front is very thin, the colour is crap and makes me feel really old rather than 51 but unfortunately I've just read that letrozole and herceptin can play havoc with the hair.

Still awaiting heart scan results so hopefully its good news but have received a letter saying the bone people want to see me the end of September that even sounds better than i was expecting as its for a bone density scan possibility of osteoporosis much better than bone mets xx

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Re: February 2019 chemo starters

Morning daisydi 

I actually take letrozole and the hot sweats I was getting seemed to ease after the first month thank god but I'm not sure really if its was the herceptin or tablets still get some now and again but I feel they are brought on by anxiety xx

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Re: February 2019 chemo starters

Morning all and Trixielady nice to hear from you.  I am feeling so much better.  Think Ive worked out the sleeping issue as last night when I woke up instead of stressing and looking at the clock I just turned over and fell back to sleep.  Although not ideal it is so much better.  Didnt actually get out of bed until 6.30 and then went back until 8.30 which is my kind of normal getting up time now.   Feel so much better and ready to face the world.  Does anyone know how long the hot sweats last on Anastrazole or will it be forever?  Its amazing what tiredness actually does to you physically and mentally and as long as I get some sleep I can cope.

Hope you all have a great Sunday.  The sun is shining again here and looking forward to a nice dog walk after seeing my mum.

 

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Re: February 2019 chemo starters

Morning lovely ladies 

Well its doesn't matter where we are when we're aren't well, I'm so glad to be home and really disappointed in myself!! but I have realised for some reason the stairs are a big factor in my breathlessness and aches and pains!!

For some reason probably chemo brain I'm really struggling to keep up with all your health issues but always thinking about each and everyone of you, so big hugs giving love and strength to continue to deal with this barry thing and good luck for those trying to return to work.

Marlyn where actually are you from again?? Xx

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Re: February 2019 chemo starters

Hi everyone 

 

Well after feeling less tired over the past couple of days I thought I was slowly getting over chemo fatigue😪😪😪 , but no, I'm almost back to square one⏹🔙 and definitely not a happy bunny🐇. Hubby had me in tears last night😢😢. He was moaning about the shower in our en-suite not being as good as the one in our bathroom. He refuses to use the en-suite one and reminded me that I didn't want to replace it. 'Course I didn't as a my chemo hair wouldn't cope with the stronger flow of water and trying to get the thing installed around appointments, good days when I could vacate the bedroom early and other things just made it all seem too difficult this year. It's bad enough having to cope with this Barrying bc without feeling guilty about the way it's impacted on our daily lives and being reminded of that. Rosina, if I'd have had a glass of water to hand I might have been tempted to chuck it over him too. It didn't help that he couldn't understand why I was so upset so that made me even more angry. Think he understood in the end. Anyway intend to get new shower🚿 next year.

 

Daisydi, I felt the same as you yesterday going for my PICC care wearing jeans which I haven't worn since FEC chemo ended in April. It made me realise just how long I've had treatment for. Even knowing I've only got one session left isn't making me feel any better. I'm sure the fatigue has got a lot to do  with the way I'm feeling at the moment😪😪😩😩.

 

Edinbird, hope you start to feel better soon. I understand about not being able to face taking painkillers. I got to the same point with Gavisgon where I actually felt sick taking them. Fortunately my oncologist was sympathic and prescribed a tablet to take daily. CT planning on Monday - result ☺👍.

 

MBJ, I'm beginning to wonder if your onco overdosed you with the chemo. Weighing you with boots on just doesn't seem right, then is he upping the dose a bit more? Is it possible you had 110% rather than 100% to start with? I think I'd start asking some questions when I felt up to it. On the positive side you may start feeling that by stopping the chemo you did infact make the right decision. 

 

Love to everyone xxxx

 

 

 

        

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Re: February 2019 chemo starters

Edinbird seems like this hell is going on forever doesn't it?  Ive just put on a top I used to wear at the start of my chemo in Feb when it was a bit chilly and it really brought everything back.  How long ago that was.  I feel a bit better today as I am back to waking every couple of hours but at least I got some two hour sleeps in.

Marie such a good job you made the choice of having no more chemo.  What amazes me is that we get our hearts checked before chemo and then nothing after so who knows what damage it has done.  I hope the medication does the trick for you and that you will soon feel better.

Love to all xx

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Re: February 2019 chemo starters

Marie I feel so bad being in my heart trial - yes it might have stopped something like this happening to me but equally you didn’t get the chance to go on it 😕 I have packets and packets of the pills here that will just go in the bin because they prescribed me too many since I halved the dose after I was dizzy on round three. I’m really grateful I’m on it and it concerns me that I won’t be for the oral chemo, not that that’s the same at all but still.

 

Sat around feeling pap today - stayed up late for me watching a film, only had two glasses of wine. My stomach started playing up so I went to bed straight after at 11 and had a restless night filled with grumbly and rather revolting belly which meant I couldn’t lay down properly, more sweats which have gotten worse the last few nights (must be my period trying to wake up I guess?) and then woke up about 7am with legs reminiscent of T... fabulous. So they were aching too much to get back to sleep. Feeling a bit less sore sitting on the sofa but I’m too tired to feel better. And in that yucky phase where I know painkillers would help but the thought of them is enough to not have them. I’ll probably get some with lunch. Will go out to the shop later and see if moving around helps. Just what I need when I’m back to work on Tuesday 😬

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Re: February 2019 chemo starters

Mbj,

 

what can can I say? I'm truly smacked in the gob. It makes me so very grateful I had a heart scan just after cycle 1 ( I've had 3 in total ) 

Thank the lord you stopped at one cycle, it doesn't bare thinking of if you'd carried on! Do you know the stage you're at? 

 

I know after my first cycle landed me in hospital the onco  told me it was 100% dose, they start off on the full whack and adjust accordingly...thank god you didn't carry on, I feel on a deep level you knew it would have been wrong to do so...

 

i hope and pray the heart meds settle down ......oh boy, what a journey! Xxxx

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Re: February 2019 chemo starters

Just a very quick pop in before I hit the road, this weekend is mental busy.

 

Just wanted to extend further big squishy hugs to Marie and Daisydi.  Love you both and I hope things look better soon.  

 

And Edinbird....  you probably got the cannula idea from me as I had one at my rads planning meeting.  They used it to pump some kind of tracker dye through my system for the CT scan.  Maybe that isn't standard?

 

Catch up with you all properly on Monday x

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Re: February 2019 chemo starters

Morning everyone,

 

Just popping in to give our MBJ a big hug. I'm cross on your behalf. 😡

 

Thank goodness you didn't have any more chemo. 

 

Praying for no more side effects for you xx

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Re: February 2019 chemo starters

Hi MBJ

 

Just  a quick one. When I told my husband about your heart problem the first thing he asked was "Was that due to the chemo?" Switched on or what?! I think I'd be more than a bit angry😤😤. 

I feel genuinely upset for you if the cause is down to some medic being careless about how much chemo an individual can be given. 

 

Time for bed 🛏.  xxxx

MBJ
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Re: February 2019 chemo starters

Hello Everyone

I had a telephone conversation with my cardiologist this afternoon. He explained a bit more to me I have an insufficient left ventricle that is only pumping 30% of the blood out into the Atrium. He said it was definitely caused by the chemotherapy. My God thank Goodness I did not have anymore. To think how I have agonised over not carrying on feeling like a coward and a failure. But my body was really not able to take it. Strangely I was talking to the nurse in the Tenovus caravan when I had my bone infusion two weeks ago. She asked me about the chemo and I told her my story. She then asked me who my oncologist was so I told her. You never guess what she said to me oh yes he does like to pump up the doses and give everyone a good wack!!!

So God knows how much he gave me, he even weighed me with my boots on. 

I hope this does not scare all of you, as you are all doing so well and most of you are through the chemo stage. I really struggled when they told me I needed chemo and almost did not do it. Indeed my specialist nurse (think I have written this before) said to me "Dr James stop reading and let us look after you" well they did a mighty fine job of that.

Sorry girls I am just feeling a bit angry tonight and I am sure they were doing what they thought was best for me. Also if I had refused chemo then I would have been acting against medical advice and we all know we need to feel we have done everything we can to survive for our loved ones sake as well as our own.

I am seeing the cardiologist in two weeks and started my medication yesterday and have already got the cough that is a side effect. Just call me side effect Marie.

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Re: February 2019 chemo starters

Beach walk sounds good to me Daisydi.

Back at work today and I did a full day ( 8 am till 4.45) . I also sat down with a colleague and drew up a timetable so that we all know when I will be in and for how long ( as opposed to turning up and going on until I have had enough which was vague and not such a great idea - although with good intentions behind it).

So Friday will be my full day and all other days are Half or Quarter days . 

One day will start at lunchtime. So I am feeling much happier about this phasing in business. As I do have a tendency to keep going and then getting tired and cross. Having the day off yesterday started well Hospital review etc and ended up with me losing my temper with H1 and throwing a glass of water over him as he was cooking. It all started when the kids had got back from school, I got back from my relaxing pedicure and then H1 and K2 got into a play fight tussle which ended up with both of them getting upset and hurt 😱

I was so cross with both of them ( and myself) that I left the house and walked around the park and picked blackberries. I returned 2,hours later to a quiet home with fed kids. 

I just did the ironing and went to bed at 10pm.

We are all okay today so I am not sure why all hell broke loose yesterday.

My daughter thought the whole thing was funny and she got told off by me for finding it funny. 

Today the kids got told that they both have to help with the chores and a duty rota has gone up. We used to have one , then they said they knew what they had to do and then it slowly fizzled out to H1 and myself doing most of it. Which is not on.

K2 is not allowed to play computer games for more than 1 hour on week days, so he has a long face.

 The joys of it all .🤪🤪🤪🤪

 

 

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Re: February 2019 chemo starters

Thanks Daisy - you just have a combination of everything 😕 hopefully the beach walk has helped. I have no idea what the sleeping pills were I got second chemo because they were rubbish so I just threw the box out!

 

Hmm I had thought I needed a cannula bonus if not!