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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

Well I'm home and done.  Feel very strange. Dont feel like celebrating last chemo.  Just cant get my head around it at the moment.  Had a bit of a meltdown today as my cold cap machine was broken and I had to use an older one with a different style of cap.  I have worked so so hard to keep my hair and I will be devastated if it all goes on this last cycle.  Made such a fuss but there was nothing they could do.  Did see a dr for a review before my treatment and he has really upped my doses of everything and prescribed new stuff so hopefully I wont suffer too much with my usual side effects.  Wish they had done this last time.  He was a very nice dr and explained loads of stuff to me.  He even managed to show me my nuclear medicine bone scan which had been bothering me.  I have arthritis in my shoulders, neck, knee and feet and thats before I start taking hormone tablets for 10 years!  Told me that my tumour markers were still 4.8 apparently normal is 5 and this is to see whether there is still cancer in the body.  It has gone up from 4.1 last time but he says its ok under 5.  I didnt even know about this before.  Something else to worry about now.  I have been prescribed huge amounts of steroids for about 8 days, then stuff to help with tummy issues as steroids can irritate gut which I didnt know about and then anti fungal tablets for 8 days which hopefully wtill stop the burning, itching and swelling in my armpits and down below.  Please god hope it works.  

Sorry some of you are feeling so anxious.  Just seems the norm for us at the moment but we are all here for each other and I will try my best to help all of you along the way just as you try to help me.

Love to every single one of you xxxxxxxxxxxxxxxxxxxxx

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Re: February starters 2019 - yes, we rule!

Susie, I totally get how you're feeling. It's so rubbish having to deal with uncertainty all the time. Marlyn is spot on by saying  that we are good at covering what we're feeling on the inside and that this tends to attract all the unhelpful comments from people.

 

So far this cycle, I haven't fared too badly with physical effects but mentally I am really struggling. I am constantly worried about work and what will happen when I return. I just generally feel low and like nothing makes sense anymore. I am truly grateful I've got you ladies to chat to as I don't think anyone else understands.

 

Sending you a big hug 💕

Member

Re: February starters 2019 - yes, we rule!

Susie 

i think your mood reflects how we're all feeling, this is our safe place to say what we want....no one can understand what truly goes through our minds....one resident has just said to me " keep smiling "! .......yes, I'm very good at that but behind that smile is a wide range of emotions.....I do make allowances for people with their off the cuff remarks but one day I do fear what I'm actually thinking will come spilling out, I just hope it's not to one of my residents! This morning one of the ladies asked me when I'm putting on a fish and chip lunch ( before bc it was monthly) boy I had to control myself! 

 

Xxxxx

Member

Re: February starters 2019 - yes, we rule!

Hi everyone 

Thanks for all the photos today Ocean21 and Rosina. I certainly need something to cheer me up. After starting yesterday feeling anxious by the evening it turned into feeling pretty low, not bad enough to define as depressed, and have felt the same most of the day so far. I think lots of different things have popped into my thoughts or things have happened at the same time leading to a bit of an overload. Not so long ago, just before diagnosis an insurance policy linked to our endowment mortgage had matured and due to an earlier inheritance from my Mother-in-law we had previously paid off our mortgage. Upshot of this was that we could use the money as we wanted so we were discussing how much to put away for retirement, spend on house, treat ourselves (short luxury breaks to London and Aix, the timing of which was dictated by Gremlin not us), and that kind of stuff. We were also thinking about our 45th wedding anniversary having celebrated our 40th in style last September. I haven't talked about those plans since because although I know this bc will be sorted I really don't know what the future has in store. Not knowing yet if I'm HER2 positive, triple negative or even a mix of the two definitely isn't helping. Booking next years holiday was a huge achievement for me. Then I'll also be waiting to see if I'm all clear after surgery. If so I'll have 2 more rounds of FEC, not clear and it'll be 2 rounds of TC. Will explain more on that when I get the results after surgery. Then there was the small matter of having my wedding ring cut off. It needed doing but I wanted it cut off and enlarged on my terms not Barrying bc. I won't have my ring resized until all my treatment is finished. Then there's the conundrum which some of you have talked about,  how do you know chemo is doing its job after surgery. The oncologists replies don't seem to be particularly encouraging. And added to all this, if I get one more email from my mum asking "How are things?" - her way of asking how I am with the bc - I'll scream. I ignored the last one I received on Friday as we'd replied to her emails last Sat, Sun and Monday. Then on top of all of this there'll be the worry of annual mammograms, 3 monthly checks for  lymphodeama by their machine and it just seems never ending. As some if you have said it's difficult when people say things will soon be over, you'll soon be back to normal, etc. I for one know that things will never be 'normal'. In time no doubt there will be a normal but a new and very different one. Sorry if this makes for depressing reading but I really do need to offload and put things in writing. Funnily enough I do feel a bit brighter, shame the weather isn't 🌫🌪🌨☔. Thanks everyone for listening, so to speak or reading this post. Will read the rest of today's posts and catch up later today or tomorrow hopefully in a better mood. Love to you all❤❤❤❤❤❤❤❤         

Member

Re: February starters 2019 - yes, we rule!

Hi Daisy

last one woop! Woop!well done girl side effects will soon be gone - well done ❤️❤️❤️👍

Member

Re: February starters 2019 - yes, we rule!

Thinking of you Daisydi.

 

Hope all is going well x

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Re: February starters 2019 - yes, we rule!

Edinbird, you are doing so well coping with these household problems on top of everything else (even though you probably  think you aren’t). They are the kind of things that in normal life are a minor inconvenience but during chemo break us very easily. I thought my washing machine had broken last week when I was feeling grotty and was in floods of tears. Turned out the child lock had accidentally been turned on!!!!! Felt a bit silly and slunk off to bed. 🥺 xxx

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Re: February starters 2019 - yes, we rule!

Ps I’ve been saving some of Rosina’s recipes to try. X

Member

Re: February starters 2019 - yes, we rule!

Thinking of you Daisydi xxx

Ocean, thank you for the update and more gorgeous photos. Poppies are so beautiful but then so are all the other plants/flowers. It was interesting what you were saying about your vegan son. My youngest has been vegan for about 3 months now. He was constantly suffering with dry patches on his skin and symptoms of IBS. Tests have not shown anything so he decided to try a vegan diet. His skin and stomach problems have improved dramatically already. I was very dubious when he first told me but I know he will have done the necessary research to ensure he has the rift nutrition. He is a great cook anyway and has  steered clear of processed food for a while so I think he has found the transition fairly smooth. He wants me to try going vegetarian (not trying to make me a vegan  as I think I would really struggle). I will certainly be considering it in the future but whilst chemo is ongoing I just need to be enable to eat what I fancy rather than not eat! X

Member

Re: February starters 2019 - yes, we rule!

Gorgeous photos Ocean21, 

love them.

I am going to share some from my walk yesterday;4A482061-AEA2-4E46-93B3-D10D16DC4104.jpeg

 

AE9057C2-0FEC-41C7-AD0F-1AE7675E049E.jpeg

 

2B4BACC0-75BF-4318-AE97-04634D75466B.jpeg

 

Member

Re: February starters 2019 - yes, we rule!

Good luck Daisy! We're with you all the way 💕

Member

Re: February starters 2019 - yes, we rule!

Forgive me anyone I left out of my post.Good luck today Daisy

xx

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Re: February starters 2019 - yes, we rule!

Daisy 

just wanted to pop in to wish you well today love, we're all there with you....virtually cheerleading you as you walk out the unit xxxxxx

Member

Re: February starters 2019 - yes, we rule!

Good luck Daisy xx

 

The flowers are all amazing Ocean. I’m stuck in bed again. A bit self enforced... waiting on the plumber coming as I desperately need to wash my hair so I can’t do it and then they turn up and need to turn stuff off. Legs are still a bit sore but much better. Need to get up and try for shopping later to prove I can manage to get to the surgeon appointment tomorrow. I think I’ll be ok. It’s sunny outside and the rest of the week looks miserable but not much I can do right now.

 

Save myself some money anyway since need to pay the plumber, and alarm people who can’t come until Thursday... now the smoke alarm has started making noises too that should just be a battery but I’m sick of everything breaking!!! It was somehow ok when it was just me broken!

 

I’d cheer myself up with some nice food if there was such a thing... maybe by the end of the week if I’m lucky! Might brave the kitchen for toast and run up to bed if the plumber makes an entrance

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Re: February starters 2019 - yes, we rule!

32C6793E-127E-456E-954E-330D295E384F.jpeg054F166D-2514-4C82-9181-D13FE37063AD.jpegE6E6DACE-7E21-488C-8D7E-479228F9D40E.jpeg7375B5CD-5EB7-4292-8492-DEFAB27F7AE5.jpegEC6C8497-6512-4993-8668-68D62383721B.jpegD5840C0B-B025-48B1-BA95-1B14ABEBF685.jpeg01144249-FEA0-4A92-8626-55E65899AAE5.jpeg

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Re: February starters 2019 - yes, we rule!

11D986B0-F499-4B41-A136-CB080844181B.jpegA nigella plant that I found while pulling up from grass at the side of Jackson’s pound. Nice alternative to the usual blue colour way. Will collect the seeds for next year.28B6E860-9A23-4171-BEA8-93AFBB4BAD18.jpeg91C3C7B8-C4C2-4373-9511-F1CCBC29F177.jpegF527A0BB-CACD-400F-8AB8-46D1A806F117.jpegDEEF8DF4-81D6-410C-8C58-F0233A2C4ADF.jpegJasmine94B624AF-ABF3-4AEF-9EA1-B5017265A8B5.jpeg

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Re: February starters 2019 - yes, we rule!

160C829E-E8F3-415E-BF06-7336823CBB17.jpeg7CF7E787-856C-4D92-BF7D-D2F290D3D3CF.jpegD5507068-FDAE-4C46-BD4E-3B91196C20AE.jpegWalnuts, the tree was growing beside the poppy field381B9CC8-4F94-449B-8133-23273634A315.jpeg

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Re: February starters 2019 - yes, we rule!

Morning lovely ones.

 

Fantastic ,those of you who have finished chemo , we’ll get there those of us who haven’t quite finished.

 

I’ve got a session tomorrow and then  another two before I’m finished.. You may remember I’ve been having Taxol weekly. It’s worked out well very few side effects although I must say it’s dented my appetite and practically everything I eat either has no taste or is far too sweet. Bizarrely, I can eat Haribos until the cows come home. Have to will myself to walk past them when we go shopping 😅.

 

Sonia28 was super happy to read that your lung is clear. Was holding my breath scrolling through to see what happened.

Edinbird hope that you’re doing well. Sounds like you need to search out some triple negative forums that are more in keeping with your positive mindset. 

Susieb hope your anxiety is getting more under your control. It can be really debilitating. I didn’t have hot flushes or night sweats during menopause but out of nowhere I’d have awful panic attacks. Me being me i kept them to myself, very hard, but goodness me they were awful. Dr Jiang my Chinese medicine doctor and acupuncturist was a gem, treatment from her really helped immensely.

 

Marlyn, sorry to read about your sore boob. I had my first meeting with the radiologist last week. He said that before treatment I must use any creams , butters or lotions or the boob itself as they act as a barrier to the rays. He’s given me a prescription for cream that they want me to use on it. Got it from the chemist so it’s there waiting even though I don’t start with the rads until the end of July. I have to wait 4 weeks post chemo before they start treatment. Was a bit down when he told me the number of sessions I have to have. Far more than you.

 

I’m down for between 5& 6 weeks of treatment. He said that they decided at their team meeting to give me a little extra because I had one node involved.

Ive more or less accepted it now as 6 weeks was what was down on the protocol treatment sheet that the oncologist gave me. I was upset because I’m sure the surgeon  told me I’d need a couple of weeks so that’s what I’ve always had in my head.  

 

To be honest , although I’ve been p* ssed  off at it , I know we’re all different but, reading your updates i seem to have  had a very simple treatment protocol to what you guys have experienced. Apart from the injection that I needed the day after treatment with EC and some nausea meds I haven’t had anything else. A couple of weeks ago I was prescribed something as the nails on my fingers and toes became really tender. They’ve lowered my Taxol dose and it’s not so bad now. Still got dark shadows on most of my nails but I’m told  that will work itself out when I’m done with chemo.

 

As I anticipated a short course of rads I thought everything would be finished  before my eldest son arrives with my grandchildren at the end of August but I won’t have so we’ll have to work around it. Can’t wait to see them.

 

My daughter is still here. It’s lovely. She’s going back on Sunday, I’ll miss her loads but she’s got an interview with M&S so she has to go back.My youngest rang yesterday and it gladdened my heart to see he’s not fretting about me . They’re all obviously concerned but they see up close how I’m doing and that reassured them.

 

My daughter has me trying all these vegan recipes.My youngest has been trying a vegan diet as a friend of his said it helped his eczema. My boy has had it seemingly for ever , now he’s plagued with it on his hands, it’s even on his palms. He’s always struggled with dairy products so I used to but that lacto free milk when he lived at home. Now he’s cut out dairy altogether it seems to have made a big difference to the eczema.

 

8403BB45-311F-4CC8-AC3B-888AD175E0F2.jpegB1270976-AD1D-4480-A692-D18B7C769122.jpeg4568DF30-B137-4DBA-993D-4B36ABFCFC82.jpegD6EBF9F4-5954-406C-B5AF-2C422A8B1D87.jpegBBB11B66-8730-478B-AF05-BC0DE7CC9827.jpegInspired by his needs while he was over , me and my girl have been a vegan cuisine kick. Our biggest success has been meringues. Chick pea water ( aquafaba) ,icing sugar a bit of lemon juice and vanilla whizz it up and voila .. they take an age to cook though, however I’m very impressed. Never been interested in food chemistry but aquafaba seems to have a myriad of uses so Id be fascinated to learn what properties it has that make it so useful.

 

Anyway,  bank holiday over here today . Staying around the house loads to do for gite , aiming to list it as available from this coming weekend providing engineer coming fro. Orange doesn’t find any issues getting WiFi access. It can be a huge problem in rural areas and we’re no exception.

 

Right my beauties, pics for you. Poppies have been out in force.

 

xx

 

 

 

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Re: February starters 2019 - yes, we rule!

gb/podcast/toast-podcast/id1440135011?i=1000437060041

 

I am enjoying the TOAST podcasts .

This one is about walking the South Downs.

 

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Re: February starters 2019 - yes, we rule!

Celtic music

 

Good Luck Daisydi with your last chemo.

All will be well 🌈

Rosina

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Re: February starters 2019 - yes, we rule!

Hi daisydi 

Hope your final chemo session goes ok today. You can do it☺. 

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Re: February starters 2019 - yes, we rule!

I think that's the problem Sonia.  We are all such strong women and just expect to get over it all quickly but it seems to knock the strongest the hardest.  We will be fine x

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Re: February starters 2019 - yes, we rule!

Daisy, I didn’t recover the last time, note the 2 days of tests in hospital. I’m glad it is the end of chemo, as not sure I would be able to

continue. Fingers crossed for you tomorrow, and be kind to yourself don’t expect too much

( finding that hard myself) my body and mind are not quite working together, but hopefully it we will be all on the road to recovery very soon. 

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Re: February starters 2019 - yes, we rule!

Hi peoples

 

Sorry for being quiet

 

Feeling a little rough and mainly dozing in and out

 

But I'm ok and not in the hospital yet, that's the main thing.  In fact after creeping up and up all day I just took temp and it has gone back down to 37.0 which is great news as it was flirting with the dange zone this afternoon

 

Heading back uo to bed now.  Catch up properly tomorrow.

 

Sarah x

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Re: February starters 2019 - yes, we rule!

Hi everyone, Seaside that is such a beautiful photo of you and your daughter.  Such lovely smiles. Edinbird its good that you have faith in your oncologist.  Ive only seen mine twice and to be honest I dont really like him but I suppose its the nature of the job.  Just had to use the mobility scooter again as I have no energy, really sore knees, feet and toes.  Doesnt bode well for the last one tomorrow, who knows what joys it will bring.  The worst thing is that I have also had 8 steroids today and I should be buzzing and I am just not!  Glad you feel better Rosina.  Hope you are alright Implausible. A white t shirt was not a good idea today.   I am covered in black flies.  Not a good look.  Love to all xx

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Re: February starters 2019 - yes, we rule!

Hi Marlyn

 

I’ve got oncologist on Friday. He was very positive at the last scan. He’s the clinical director so I can’t complain and will absolutely be guided by what he says.

 

Yes whatever is there is coming out!! Scans show the lump is very isolated from an otherwise healthy breast although the nipple issues and skin thickening do concern me. Dunno how many lymph nodes they’ll want to take. Not long to wait to find out.

 

This came up on my Facebook and it made me laugh... not that it was remotely funny what we have been through or at the time but I guess we can smile now 😆 we are all still here and kicking its arse so...

 

No more hospital dashes please!!! 🤞

4EA05D32-7108-410B-9579-AC9143783BEF.jpeg

 

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Re: February starters 2019 - yes, we rule!

Edinbird,

sorry to read your day is kak, I hope you manage some sleep tonight.......it's rough enough feeling so lousy....but add no sleep to the mix....oh boy!

I have a friend who is triple neg, she's doing ok but does constantly worry, I read up on it for a better understanding, naively I thought breast cancer was one diagnosis....until I had it....then I realised there were different types....does your onco give you much feed back on how it's all going? I mean, if there's not much shrinkage they can still remove it right? Xxxx

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Re: February starters 2019 - yes, we rule!

Well done to Mini Sar! I think a lot of us are feeling like pap when it’s so quiet you can sense it...

 

Third day predominantly in bed. Aches are far less severe but I get so dizzy if I stand for more than about 5 seconds. When I’m laid down I’m fine so I’m particularly frustrated.

 

And it is husband’s birthday today 😕 I only even managed to write his card this morning! He wanted an iPad but changed his mind so he doesn’t have a present 😔

 

Feel bad for feeling so bad. Went on my triple negative forums to ask about response to chemo with my lump not shrinking much. Less because I’m worried but more because I knew I’d get people telling me they had similar experiences and I’m normal. People keep dying on these forums too. It’s just unfortunate there’s no pattern it’s just the way of my type of cancer. Our recurrence rate is more Barry than others. I’m not down about that it’s random. Sitting in bed watching TV stinks!!

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Re: February starters 2019 - yes, we rule!

Hi everyone  

Well done Seaside Sar to your daughter for doing the Race for Life this morning. Georgeous photo of the pair of you too☺. My son is due to run the Race in Taunton next month with a couple of friends.

Glad I'm not the only one to hit low points every now and again. It almost makes me feel normal. I woke up this morning very much on edge/anxious and have ended up taking a full dose today of my meds for anxiety☹. Apart from the upcoming surgery I don't think just passing the 6 month point since diagnosis has helped, especially as there is still so much to go through. And yes, my poor hubby gets the brunt of my meltdowns. It all gets a bit too much sometimes and knowing that things will never be as carefree as they once were doesn't help either. This  Barrying bc is💩. 

Anyway less of my ranting, today hasn't been too bad. It's stayed dry and me and Dibley had a lovely walk while hubby did some work in the garden.

Enjoy the rest if the day. Love to you all❤❤❤❤ 

 

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Re: February starters 2019 - yes, we rule!

Congrats to your daughter Seasidesar.

 I feel like I am back to ‘normal’ at last, 11 days after being ‘dosed ‘. Head is much clearer 🤗

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Seaside Sar

Well done to your daughter for running in the race for Life. I have just come home from singing with the Rock Choir for the Llanelli Race for Lifeh in not so sunny Wales. But at least it was dry. Wonderful to see so many people running for a cause so close to our hearts.

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Re: February starters 2019 - yes, we rule!

Hi everyone,

 

It's dry and sunny here today which is a good job because my daughter ran the Race for Life this morning. So proud of her and will admit to feeling a bit choked up when I saw everyone gathering at the start line. 

 

Good to hear the news about your son, Sarah. Massive congrats to him!

 

Sonia, I hope your rads are all done in time for your trip away. It is frustrating not being able to plan ahead but fingers crossed for you.

 

Glad to hear you're feeling a bit better today, Daisy. I went into super grump and depression mode yesterday evening. Poor hubby as ever got the brunt of it. It's just hard at times facing the reality of what we're going through.

 

Hope everyone else is having a good day.

 

Loads of love

 

Sar xxx

 

20190609_114456.jpg

 

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Re: February starters 2019 - yes, we rule!

EF5B7F30-CAA5-4068-BB3A-8D8C1027F4B5.png

 

MBJ
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Re: February starters 2019 - yes, we rule!

Hi DaisyDi

I was not trying to emphasis having dark thoughts as such. But to highlight the fact that it's absolutely normal for us to feel anxious sometimes. All the literature talks about it. We and our nearest and dearest can't expect things to be as they were before BC but my aim was to show that we all need to find our new normal whatever that may be. Campaigner, champion, volunteer or just quietly picking up the reins of our life. Like me sailing off on my cruise on Friday, looking forward to it now but still a bit scary as it will be the first time away since my diagnosis. Reading about life after treatment is helping me realise what I am feeling. It's strange to feel a bit abandoned by the nurses and Dr"s after being closely monitored for months. Not that I want to need them or become dependent on their support, but it is taken away very suddenly. Like your safety net has been wiped away. 

But obviously I am well and out and about doing stuff, but it is still early days and there is still healing to do. 

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Re: February starters 2019 - yes, we rule!

Daisydi, I’m Tuesday.......fingers crossed. Xx

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Re: February starters 2019 - yes, we rule!

Afternoon all, just popped in to say huge congratulations to your son Sarah.  What a star x Hopefully that has made you feel a bit better.

Nettie is it you and me on for Monday then?  I'm not so miserable today but a bit grumpy!

Edinbird sounds like you had a bit of a hard night.  Hope you're feeling better.

Rosina, Seaside, Sonia and Deano hope you are all ok and not suffering too much and Maryln hope you are enjoying your weekend off.  

MJB glad I'm not the only one having dark thoughts but I suppose it is expected isn't it?  Trouble is because I am not doing very much I have too much thinking time.  Hopefully it will get better with time.

Ocean hope you are ok and nearly finishing your chemo?  Susie hope you are ok.  Not long to wait now.

I would love to write a big long post to reply to everyone but I cant remember what has been said and I cant scroll down.  Sorry if I have missed anyone out.  Its start of the roids tomorrow so at least I will have a healthy glow.  

Love to all xx

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Re: February starters 2019 - yes, we rule!

Implausible, I’m made up for your son. Especially as he thought he hadn’t got it. Well done. 👏👏👏👏👏. Xx

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Re: February starters 2019 - yes, we rule!

Quick pop in.

Good news about your son's job offer Implausible. Pass on my congrats to him

We've just got back from our walk and it stayed dry🌞. As you can see from the photo Dibley is doing what greyhounds do most of the day, lounge around doing nothing. He enjoyed his walk though🐕.

20190607_122119.jpgDibley after his walk

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Re: February starters 2019 - yes, we rule!

Well done, congratulations ⭐️ to your son.

Is this the smart guy whose photo you posted in his new gear?

 I seem to have severe ‘porridge brain ‘ today 🥴

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Re: February starters 2019 - yes, we rule!

Just a quick pop in to let you know that my 16yo got that job at Pizza Hut and he is super chuffed!

 

He had been promised a call back on Thursday to let him know if he had been successful or not, which never came.  So he assumed he hadn't got it.  But the call came today and he starts next week Smiley Happy

 

Nice to have some good news for once....

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Re: February starters 2019 - yes, we rule!

Hi ladies, 

not a lot going on here today, not feeling too bad, achy legs. I’m just resting up on the sofa, as weather is awful outside, and enjoying not being in the hospital for the first time in 5 days. 

I loved the bell photo Sar, wish we had one on our ward, all the usual ladies weren’t there, so ended giving my good bag to a nurse to share our as  I’d only met her  that day. 

 

Implausible I had the same conversation 

"When I asked my onco how we knew it had worked he said we dont but just hope it has"

he said it’s a mop up, and ill have no more scans. Although the last 48 hrs proved that wrong 😬

I am all tattooed up now, i said they look like black heads 😛 to start in 4/5 weeks, hope it’s sooner as we are off to caravan for 2 weeks beginning of August and don’t want that to be radiotherapy catch up. But hey ho who can plan with BC !!!

 

Deano, I’m glad your all done and dusted too, 

daisydi, just a few days for you too xx

 

Edinbird, what a night you had,hope you’ve got some rest today and it’s been a little less adventurous. 

 

MJB, I’ve lost track when do you go on your cruise??

 

Trixielady, how are you holding up?? 

 

Marilyn, I hope your enjoying your weekend break from radiotherapy xx 

Nettinoo, SusieB, Ocean21, Veronica,  Stargazer thinking of you all xx hope I didn’t forget anyone, feel I should have a list by my phone with my chemo brain 💕💕💕

 

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Re: February starters 2019 - yes, we rule!

Hi Susie B,

 

Hope you and Dibley enjoy your walk.

 

I've just been for a mega long walk after saying I'm taking it easy today but I needed to clear my head. Constant work worries. Meh!

 

Saw these poppies en route. 

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At least I didnt get rained on. Back home now for a rest.

 

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Re: February starters 2019 - yes, we rule!

Hi everyone 

Finally read through all the posts from yesterday and this morning. It's like reading a novel sometimes. Feeling the highs and lows of many of you at the moment. We certainly go through it. I've had a busy morning so far, just about to have something to eat, then we're going to take Dibley out for a walk to a local country park with lovely views from the top. Have a good day everyone. I'll catch up sometime, probably Monday the way things are going! Love to you all xxxxx      

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Re: February starters 2019 - yes, we rule!

Lovely photo Seaside Sar☺. I'll pretend I can hear that bell loud and clear🔔🔔🔔🔔  xxx

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Re: February starters 2019 - yes, we rule!

Good morning you lovely ladies,

 

I am curled up on the sofa with a fleecy blanket, cup of tea and cinnamon roll. Comfort all the way. I got quite a few hours sleep last night so I'm hoping that will counteract the steroid crash today.

 

Sounds like you had an eventful night, Edinbird. What a pain. I was getting annoyed with the rain and my cat howling in the early hours but a house alarm would definitely have done my head in. Good luck with the special day. I hope it works out for you - a well deserved treat.

 

Sarah, you flatterer! Trust me, I was utterly wiped out after chemo 6 and certainly looking worse for wear. As if i need convincing of how my appearance has changed, good old Google photos showed me a helpful reminder of this time in 2013 when my hair was very dark and much fuller, and my brows and lashes were intact. Oh well, after a few more weeks from now I will be keeping an eye on the regrowth and hoping to look like me again. I said to my husband last night that my hair looks like one of those characters out of a horror movie where you're not sure if they are alive or a ghost. He actually agreed with me which made me feel really great!

 

Rosina, the bunny pic is very cute. Thank you for sharing. Also thanks for the link to Snatam Kaur. Sounds interesting.

 

I hope everyone else is feeling OK today. The weather here is utterly pants so I'm not planning to do anything other than rest today.

 

Loads of love

 

Sar xxx 

Member

Re: February starters 2019 - yes, we rule!

Morning,

all I did in art therapy yesterday was chat/share.

I now have a new artist (singer ) to share with you .

She is American , her name is Snatam  Kaur. 

Music is ‘ painting with sounds ‘ , art is ‘painting with colours’ both are healing.

Snatam Kaur

Edinbird sounds like you had an eventful evening!!!! I think you have been amazing. 

Hugs,

Rosina

Member

Re: February starters 2019 - yes, we rule!

Good morning warrior women!  We survived another night!

 

I actually managed to get a half decent night's kip last night which makes all the difference.  Although my legs still feel like they've been run over by a steamroller, but you can't have everything, right?? Smiley Happy

I wonder why T has such a weird effect on legs in particular, and not arms?  Odd.  Anyway, let me catch up.....

 

First off, I can't find the post now, but which of you was it who was watching Years & Years yesterday or the day before?  I caught up with episode 4 last night and oh my goodness!!!  What a tearjerker!!!  It might be the most depressing TV show I have ever watched, but it is worryingly believable.

 

Aha , found the post.  It was you, Marlyn. 

I also had the same talk as you from the doc about how the worst tiredness and soreness from the rads will kick in a week or two after they finish.  That's no good!  I was hoping for a little reprieve between rads and surgery.  There is no let up at all, is there??  He reckons it peaks quick and goes away quick though.  So here's hoping.

 

And I love the sound of the rain too, as long as I'm safely inside and don't need to go out in it Smiley Happy

 

Daisy you sounded so down yesterday,  poor you Smiley Sad  Honestly, I know exactly how you were feeling!  I hit exactly the same low spot a couple of days before my last chemo too (the day I went to see Rocketman and had my giant weeping and wailing session).  I think it was a mix of so many things.  It was supposed to be my "good weekend" yet I still felt so incredibly fatigued, made me wonder if that old energy will ever come back.  Then there was a combo of relief that the last session was imminent but also fear of having to go through the horrid side effects yet again.  And just knowing that this isn't anywhere near the end of the journey.  And the eyelashes and the sore fingernails,  and just everything!  It really is just all too much at times, isn't it Smiley Sad

I honestly don't think that anyone can really understand what a mentally and physically draining experience this all is if they haven't experienced it themselves. 

 

And this kind of thing really isn't helpful at all.... I get exactly the same vague shrugs from my doc too:   "When I asked my onco how we knew it had worked he said we dont but just hope it has"
How do they think that is going to put our minds at rest????

 

But we are all surviving and we WILL all feel so much better a few months down the line, we just gave to grit our teeth and plough on.  And give it a year and we will all be comparing our cute pixie hair cuts and renewed eyebrows, and meeting up somewhere for high tea and maybe we might even have the puff to manage a couple of flights of stairs Smiley Happy

 

Seaside, I love your bell photo!!!  You look amazing in it, you would think that pic was taken before you started chemo #1 not after chemo #6!!!  This fat potato is jealous Smiley Happy 

 

Deano, talking of bells, sorry we don't get to see your video but I'm glad it was a good moment for you and we can imagine the ding ding ding Smiley Happy

 

MBJ I did start to read that Peter Harvey article a month or so ago when it was first shared.  But I decided it was too early for me to start thinking ahead too much.  I definitely intend to do some work around that area though once the bulk of the physical treatment is done.  I'm already booked into a 6 week "what now?" course at the Cheltenham Maggies in September/October.  And if that doesn't put my head totally where it needs to be, I'll treat myself to some 1 on 1 therapy.   I want to be able to get to a point where I don't ruin the rest of my life worrying and panicking about recurrence.  I want to be one of those irritatingly inspiring cancer survivors who go on to maximise every second of their new "bonus" lives....  but right now I simply don't have the energy to even think about that!!

 

Rosina ,love the bunny pic!!!

 

Edinbird, early start for you today but glad to hear you are feeling better than yesterday, hopefully that is you starting to come out of the chemo side effect woods for the last time, yay!!

 

Blooming burglar alarm though!!!  Hopefully that is you done now as things always go wrong in threes, they say?  Dishwasher, boiler, alarm. 
Why does this nonsense always happen at the least convenient moment???

 

I've got to admit that I looked at that "special day" link you put up, saw it was for "young adults" and was worried you hadn't spotted that bit.  I know you are a lot younger than most of us in here but I thought that would mean under 25s or something, but it goes all the way up to 40!   How cool is that???  I'm very happy now to think that I would have been considered a "young adult" not too horribly long ago Smiley Very Happy  I really hope that you get selected!  That would be awesome.  And 18 months definitely isn't too young for sports.  The lady who sits next to me at ice hockey has brought her baby along every week since he was 2 weeks old Smiley Very Happy

 

So, what has everyone got planned for the weekend?

 

My main plan is "don't end up back in A and E", anything beyond that will be a bonus Smiley Very Happy

 

I'm not expecting to be too active, as am still in side effect city, but I might try to do some collage or easy small drawings.  Nothing too taxing.

Of course I haven't actually tried getting out of bed yet, and I might find that I'm not up to even that minor level of effort.  But fingers crossed. 

 

Big fat love to everyone.

Sarah x

MBJ
Member

Re: February starters 2019 - yes, we rule!

Good Morning Edinbird

This sound a great plan. I really hope they can organise it for you. Hope you have a restful day as planned with no more boiler or alarm catastrophes. X

Member

Re: February starters 2019 - yes, we rule!

Morning all xx

 

Wide awake at nearly 6am but feel a lot better at the moment... hoping that continues! Still going to have a lazy day though.

 

After a crazy few. As if the confusing scan and nasty T SEs were not bad enough, the boiler people who were recommended couldn’t take any more jobs. Managed to find someone else to come on Monday. Then last night was sat in bed and an alarm starts going off outside. Sit and put up with it for about 10 mins until I think it sounds awful close so try looking out the window. It’s our burglar alarm!!!! The control box had gone dead and triggered it and we couldn’t turn it off!! Husband had had a few gins but had to run around outside to stop the neighbours complaining and try and speak to someone on the alarm number. Turns out we should have been maintaining the alarm (who knew) and it turned itself off after about 20 mins. We cut the power to the whole house and it didn’t stop! I was hobbling around the place looking for the instruction booklet but it didn’t matter since the controller was knackered. So that also needs mending on Monday. Thank goodness it was at about 8pm and no later!

 

Surprised I’m not tired after that but have managed to sleep ok despite aches and worrying about temperature.

 

I’m going to do this later - fill in the form and see if I can get a special day. I don’t feel like I deserve it any more than anyone else but I have an idea of something to ask for... since I’ve not seen my nephew for a year I was thinking of asking if they’ll arrange to take us all to his first football match? Is 18 months too early for that? Need to ask my sister. Need to wait for the fixtures to come out on Thursday. We support Norwich but my sister’s partner supports West Ham. Bet the fixtures don’t add up but would be amazing if they did. Need to get it all signed off by the oncologist and that’s Friday so it’s doable. Shouldn’t get excited about something that is completely out of my hands but now I have the idea in my head... let’s see if we can make the magic happen

 

https://www.willowfoundation.org.uk/

Member

Re: February starters 2019 - yes, we rule!

BA7CB68C-8C99-451F-BC02-482A1B93FFDE.jpegThe bunnies were out this evening