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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

Hi SusieB

here is the answer to your question:

https://www.colourmebeautiful.co.uk/

It is a colour analysis workshop.

 I was with a bunch of ladies- all cancer patients- and we had our most flattering colours ( for wearing close to our face) matched to us. 

I had had this done privately (1-1 session, Birthday gift, makeup also a year ago, you also get a booklet with fabric swatches ) so I did it again to check if anything  ( because of chemotherapy) has changed but I still suit soft colours .

 It is a fun workshop and I enjoy seeing how other ladies ( they can do men too but there weren’t any) look amazing when they have the most flattering colours close to their faces.

No makeup though or fabric swatches were given out - the workshop was free.🌈

 

Member

Re: February starters 2019 - yes, we rule!

Right, wig now rinsed and drying. Now where was I?

Oh that's it, I was going to ask Rosina, what is the Colour me Beautiful course/session? Your anecdote about your daughter made me smile. One of my work colleagues in Basingstoke had a son a little younger than my son. She had a similar experience. She was of oriental extraction her husband white American. Their son was a blue eyed blonde and bore no resemblance to her at all.   

Daisydi, is that really you under that cold cap! Know what you mean about the cold ears and ouch! as they warm up☹. 

Edinbird I went to my surgeon's appt too by myself but made sure I was armed with relevant questions, some of which came via this forum. I think I'll have hubby with me though when I go for my post operation results as I thing there'll be quite alot of information for me to take on-board.    

Right, must go now and get on with a few things that need sorting before Friday. And yes Seaside Sar we definitely all need to meet up when we feel up to it. Hope the rest of of the day goes ok for all of you, just wish the sun would shine🌝. xxxx  

 

 

 

 

Member

Re: February starters 2019 - yes, we rule!

Hi everyone 

Just a very quick pop in. Spent over half an hour catching up with all the posts was just about to reply then remembered I'm supposed to be washing the second of my two wigs. It's in soak at the moment. Anyway just wanted to let you know that I am feeling much better today after my couple of days meltdown.

Rosina and Sarah thank you both for sharing your stories and experiences.     

Seaside Sar hope your rads meeting is ok tomorrow.

MJB, not long 'til your cruise now. While you're sailing off into the sunset I'll be drifting off to the land of nod with the help of my aneathatist..

Must pop back to deal with my wig. Love to you all. Will finish this post later. xxxx 

 

Member

Re: February starters 2019 - yes, we rule!

My beautiful friends,

 

I am welling up reading all of your posts. You are all amazing and strong.

 

Daisy, I really hope the cold cap did its job for you, poor love! Freezing ears are painful. At least that part is done now. Take care and rest lots.

 

Good luck today, Nettienoo. Completely understand your fears. Wish I could come and give you a big hug.

 

Rosina, thank you for sharing your story. So very sad for you to have gone through this. You are remarkable and a very special lady. Great big hugs to you.

 

Edinbird, it really sounds like your work do need that protocol. You have been so amazing carrying on working, the least they can do is make the necessary adjustments and show kindness and understanding.

 

Sonia, hope you're able to catch up on some sleep today. If the weather where you are is as awful as it is here, you are better off in bed.

 

Marlyn, hope today's rads go well and the soreness is bearable.

 

Sarah, going back to feeling down (which is still the case for me) I think you're right - much of that must be down to that sense of unknown again and the start of the next lot of treatment.

 

On that note, I am having my radiotherapy meeting tomorrow so I will hopefully get a start date.

 

Hope all the rest of you lovely ladies are OK today.

 

More than ever I feel we need to meet up when we're all feeling well enough. Gonna be emotional!

 

Loads of love 

 

Sar xxx

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Re: February starters 2019 - yes, we rule!

 Going to ‘Colour Me Beautiful ‘ this afternoon at the Macmillan Cancer Support Center. Next week is the ‘Look Good Feel Better ‘.

 Just to add , I had also been to mothers and toddlers at other church halls. I got asked if my daughter was a foster child by the pastor at one of them as Kalinda has a darker colour ( duh- like her Dad) I never went back to that one. Really hurtful remark 😳 the heart does get a bashing. 

Rosina

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Re: February starters 2019 - yes, we rule!

Thanks Implausible,

When I spoke to the police that Friday night I repeatedly said he H1 needed help and counselling. I now know that the police don’t do this. 

Peter, who married us knew both myself and H1. I met Peter through the mother’s and toddlers group that ran at his church ( Baptist - you choose if you wish to be Baptised, neither of my kids are) and he had said to me if H1 and I ever decided to get hitched he would be happy to do the service.

When the police took H1 away that evening I thought he would return later. When he didn’t , I took the kids up to London for the ice skating ( as planned)  on Saturday and when H1 still didn’t show up I was really upset because I didn’t know what was happening. So I went to Peter at his Church on Sunday morning and spoke to him after the service.

He did not advise me on the spot ( as he didn’t know what to say either, he listened). He checked in with me for the whole week I was alone with the kids. He asked a friend of his ex-police to find out what would happen next. He also spoke to H1 separately.

Peter was amazing.

 I am forever grateful for how he helped us. 

He passed away on his 65th birthday just as he retired. I am welling up writing this.

Peter was a good man.

On the odd occasion that I do go to church I always think of him and his kindness.

H1 also remembers him as a good man and so do the kids.

Hugs,

Rosina

 

Member

Re: February starters 2019 - yes, we rule!

Rosina Heart

 

I've been thrown into the middle of a work crisis this morning (not actually back on roster till tomorrow but that seems to have been overlooked!) and therefore can't yet reply in full but I can't read and run!

You are brave to share!  And I am glad it has helped.

 

Usually I would bristle at the part where the vicar talked you into dropping the charges but given that you got a fairly unusually strong police response which clearly served as a short sharp shock, and you guys are still together and happy years down the line, I'd say it all worked out well.

 

I worked with Refuge for a number of years and had to stand down in the end because I couldn't handle seeing so many woman return to their abusers for what almost inevitably turned out to be more of the same.  Happy results like yours were rarer but I am so glad that they do happen.

I'm also glad you took action swiftly and got a good response from the authorities.  Well - a slightly frightening response but at least they didn't side against you which is also unfortunately often the case.

 

I'll reply better properly later!

 

Sarah x

 

 

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Re: February starters 2019 - yes, we rule!

47B67AC4-289F-490A-93F7-E59D502A4473.jpegChakra 4

 

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Re: February starters 2019 - yes, we rule!

Rosina, oh my goodness how brave you are to have shared your past trauma with us. As Marlyn has said, no judgement here. I’m so glad you feel better for having done so. Lots of love and hugs. Xx

Member

Re: February starters 2019 - yes, we rule!

Hi Edinbird, yes please update us when you can. 

Such a good idea about getting some kind of protocol put in place at work. I think the court service could do with an overhaul of theirs too. When I first had bc 5 years ago it was all pretty shocking the way I was treated by management. It made the experience a lot more traumatic than it should have been. 

I would be quite happy going to chemo on my own but it’s a distance away and I don’t drive so someone always has to take me (usually my friend Sharon as she seems to enjoy coming with me, weird lady. Lol). X

 

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Re: February starters 2019 - yes, we rule!

Hi Edinbird, yes please update us when you can. 

Such a good idea about getting some kind of protocol put in place at work. I think the court service could do with an overhaul of theirs too. When I first had bc 5 years ago it was all pretty shocking the way I was treated by management. It made the experience a lot more traumatic than it should have been. 

I would be quite happy going to chemo on my own but it’s a distance away and I don’t drive so someone always has to take me (usually my friend Sharon as she seems to enjoy coming with me, weird lady. Lol). X

 

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Re: February starters 2019 - yes, we rule!

Hi Marlyn,

thank you. I feel lighter for sharing. I shared in art therapy last week too. 

We all carry ‘stuff’ inside of us that we think we have ‘dealt’ with.

Ocean21 I love your Nigella photos. Nigellas look like mandalas to me.

They are also known as ‘ love in a  mist’.

Rosina 🌸

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Re: February starters 2019 - yes, we rule!

Rosina 

Thank you for sharing your story, there are no judgments here, only unconditional love. Sending you healing pure energy and a tight hug... xxxxxx

Member

Re: February starters 2019 - yes, we rule!

Good luck with dose #5 today Nettinoo.

All done Daisydi, you will get through this bit now and out the other side. 

Implausible yes I did go for a good walk on Sunday. It was a relief to have  ‘me’ back. Horse tranquiliser drug has been so strong that  I have been in tears  sitting on my sofa thinking I won’t be able to complete my Macmillan Hike in July . H1 says I don’t have to and my walking buddy says we can always catch an Uber if we feel awful but I so want to get to the finish line 🤪

So it was lovely to feel light and free and walk instead of shuffle. Actually it was exhilarating!!! I am convinced my legs are stronger- no aches or pains at the end of the 16 miles. No aches or pains the next day either. I caught the bus back from Hartfield ( £6.20 😳). I am aiming to get to 20 miles before the big event. H1 will be joining me on this training.

 I think this walking is becoming something of a pilgrimage dedicated to the heart.

On Sunday morning I was out and walking at 8.30 am ( so glad to have my body and brain back) that by the time I was at the start of the Worth Way the bells were ringing at St. Nicholas ( I mean peeling away) that I got all choked up. It’s like they were ringing for me 🤗

I too have experienced domestic violence x2  ( I shared this in my most recent art therapy) so it was very good to get it ‘off my chest ‘. If you are wondering it was with H1.

The second time ( about 10 years after the first incident) I called the police and H1 spent the night in a prison cell. 

We have managed to forgive each other but I have not forgotten.

We had only known each other for like 40 days or so before I fell pregnant.

 I was at the time teaching in Istanbul. I told H1 over the phone and he let me decide whether I wanted to keep the child ( my daughter) or not.

 I continued to work at the school in Istanbul until I was 6 months pregnant and then I came over to the UK and moved in with him. We had never lived together.

H1 had been married before and his marriage had ended after 4 years ( no kids) and the lady had gone with money . When I met him back packing in Thailand I liked that he never said anything bad about her.

Anyway our first bust up was when my daughter was 11months . It was over our pet parrot ( which I had bought from the Friday ads for a Valentines gift) anyway the parrot hated females ( it loved H1 it would feed from his mouth)  and it would dive bomb me when it was let out of its cage.

 I used to watch him like a hawk but he never went for my daughter. One day I had had enough, rowed with H1 and stuck bully boy ( that’s what I had named him) out in his cage in the back garden.  H1 went mental.

 I packed and left ( back home to my parents in Greece).

The second incident was just before Christmas, I had bought tickets to take my kids ice skating in London. H1 and I had got married by this point ( we got married when my daughter was 6 and my son 3 I wanted to get married but he was a lot more reserved seeing he had been ‘burnt’ first time around) and I was teaching at a Pupil Referral Unit for children who have been permanent lay excluded from mainstream education. I had 2 awful weeks at work ( and I mean ‘flight or fight’ situations - these kids project all their ‘stuff’ on you) and I came home tired and an argument over the dinner that H1 had prepared for me ( I said something like ‘I am not eating this **bleep**’) and I cannot remember what else but I do remember being shoved outside . I could hear my daughter upset inside and I went back in got both the kids and called the police on my mobile phone because I wanted my kids to know that it is not ok to behave like this. 

H1 got pepper sprayed and handcuffed and I didn’t see him for more than a week. I didn’t know what had happened to him and the police wouldn’t tell me . It was awful. 

Thanks to advice from the vicar that married us I went back and retracted my statement at Crawley police station. 

That was 7 years ago. 

H1 doesn’t believe in counselling (I have suggested it) .

H1 found the lump in my boob.

I am working on myself and my own demons.

H1 loves all of us. I don’t think my Mum has let stuff go but she should.

Hence all the heart chakra work.

Love and forgiveness,

Rosina

 

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Re: February starters 2019 - yes, we rule!

Edinbird if it helps, you can tell your sis etc that I've never taken anyone in with me to any of my consultant appointments.   

 

I've never wanted to, and to be fair nobody has offered to come with me Smiley Happy  but I would have said no thanks if they did... I feel like I need to concentrate at the appts without the distraction of someone with me, and if someone else was in there with me hearing possibly bad news at the same time as I heard it, then I would be too busy worrying about them when I should be thinking about me....

 

My other half did take me to all my chemo appts however, but that's because I was advised I shouldn't drive myself home after them.  And the hospital is in the middle of nowhere.   To be honest I reckon I would have been fine as usually felt ok on actual treatment day, and I just ended up feeling guilty that I used up 6 days of his annual leave.  

Especially given all he ended up doing each time was sit there playing games on his phone while I talked to the chatty lady in the next bed!

 

Daisydi don't worry you didn't scare me, I know all these drugs have their side effects and we need to find our own cocktails that work.  I'm putting hormone regime worries firmly on the backburner for now

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Re: February starters 2019 - yes, we rule!

Morning, well the steroids have done their job and kept me awake most of the night again. Will prob have to take a sleeping tab tonight and this is going to be a long haul on steroids this time.  No other probs so far but then Im not expecting them yet.

Sarah didnt mean to scare you about Letrozole.  Everyone is different and some people are fine.  We just have to find the drug that suits us best but make sure we dont suffer in silence.  Apparently even different brands can give different effects but hey we dont have to think about that until the radiotherapy is over.  One step at a time.

Edinbird good luck with the surgeon.  Let us know how you get on later.

Praying for you Nettienoo.  Know exactly how you feel but I did it so so can you.  Take care x

Hope everyone else is ok xx

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Re: February starters 2019 - yes, we rule!

🍀🍀Good luck Nettinoo, 🍀🍀

you’ve got this 🤞.

It will be lovely to have you son with you today, even if not in the nicest situations. 

 

Ive had a rubbish nights sleep, serves me right thinking I was coming out the other end early 🤪🤪🤪 hopefully I’ll catch up on sleep later xx

 

I’ll pop back later when brain has engaged    

 

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Re: February starters 2019 - yes, we rule!

Good luck Nettie xx I’m having the kinda opposite issue whereby I’m going on my own to my surgeon appointment and I can tell my mum and sister are a bit weirded out by that. I just figure whatever needs to be done needs to be done and there’s no point disrupting anyone else’s day by it. I never went to any of my husband’s surgical appointments unless we had to travel a long way together (he used to get seen for his shoulder at National Orthapaedic Hospital in London so that was always a bit of a trek). Doesn’t help that I still feel rough though. Sat in bed with sore ears and feeling a bit strange, went to bed early as I came over dizzy and sick but then couldn’t sleep until about midnight. My legs are still aching just laid here and I’ll have to walk from work to the hospital and back. I understand that these appointments need doing and I need to get scheduled ASAP but why can’t they make them when side effects are likely to have worn off a bit more?

 

Oh and it’s my first day back working after the last treatment... although my boss doesn’t expect me to do much. Starting to think I should have gone sick now... I’m sure I can get through a few more days. I really want to speak to the Chief Constable and Head of Wellbeing about my experiences and see if some kind of cancer protocol can be put in place. I’m astounded still by the lack of understanding that there’s been of my treatment and how I might be feeling. It’s easy if you like if someone is diagnosed and then just goes sick but I was truly made to feel like I was strange wanting to work and my needs on chemotherapy - and this is with the DDA protection! I guess I’ll get round to that soon enough. Need to focus on getting out of bed first.

 

Will let you know what the surgery decision is later xx

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Re: February starters 2019 - yes, we rule!

Nettie all the very best for today.... both for the chemo and with oh so gently agony aunting your son a little! 

 

My 2 older boys are coming up to the same age as yours and I know that they are both adamant in not wanting kids.  Luckily (for them, not for my grandchild prospects!) their respective girlfriends seem to be in agreement for now.  But if that were to change I could see it causing trouble in paradise, for sure Smiley Sad

 

Totally understand why you are dreading the side effect stage of this next chemo btw, I've been the same since my hospital trip, and I didn't even have sepsis!  I've been so determined not to end up back at the hellhole hospital that I pretty much took chances I shouldn't have last time around and refused to go in even though i couldn't get my telp down under 38 for ages.  I got away with it, but with hindsight that was silly of me.  Ignoring the high temp and just heading to bed and hoping for the best was daft.

 

But this cycle, I'm delighted to say that I seem (fingers crossed and touch all the wood!!) to have got through the danger zone without even having to lie to myself!  I had one spike at 37.7 yesterday but half an hour later that had gone back down to 37.0.  Result!

 

So here's hoping that you also get a hospital free cycle this time, boy do you deserve it!!!

 

Daisydi I love the photoSmiley Happy  a fitting souvenir of your last chemo.  And as Nettie says, if it was turning your ears to icicles then it must have been freezing your follicles too Smiley Happy

 

Not so in love with your words of wisdom about Letrazole (sp?) though!  There was me all pleased with my "post menopausal" diagnosis as the doc had told me that letrazole was easier side effect wise than tamoxifen....  but it sounds like it still ain't a walk in the park (literally!!)

 

I guess I will try whatever they give me and if it really doesn't work for me then we either try something else or I weigh up the risk/benefit of continuing to take the drugs.....  will worry about that later, got rads to get through first Smiley Happy

 

Hope everyone has as good as a day as possible, despite the lousy weather x

 

Sarah x

 

 

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Re: February starters 2019 - yes, we rule!

Just realised we are approaching 5,000 posts girls. I reckon we’ll get there in the next day or two. How fabulously chatty are we? Xxx

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Re: February starters 2019 - yes, we rule!

Daisydi, big hugs for getting to the end of this absolutely Barrying 💩 stage of treatment my darling. I’m sure if that cold cap was freezing your ears off it would have been doing it’s job in protecting those hair follicles. Great news about the doc too. I am hoping things will be different for you this time as far as side effects as he seems to be trying to cover everything. I bet you wanted to hug him for giving you a bit of hope in that department. Such a shame not all drs are like that. 

Implausible so sorry you have been suffering so much the last couple of days honey. Sounds like you are starting to improve a bit now if you managed to get clean. The days when you can’t even be bothered to have a wash/brush teeth or peep out from under the duvet are just awful aren’t they? I think you are right about PTSD and cancer treatment though. Our previous army life has obviously made us very aware of it. My cousin has been treated for years since being injured by a roadside land mine in Iraq but thankfully doing well now and sings in the Invicta choir amongst other things. I have watched my husband like a hawk over the years for signs as he was in N.Ireland for a bit and Gulf War. Thankfully, he seems to have been able to cope. 

Cancer treatment is a prolonged period of extreme stress and anxiety and there will be people who need help with PTSD afterwards. I hope that help is there for us all if we need it. 

I have been awake since 5am worrying about chemo 5 this afternoon. I want to have it and get it out of the way but the thought of what the outcome will be this time terrifies me to be honest. I don’t think I can stand one more day lying in a hospital bed feeling dire and the ensuing delay of next cycle etc.The fact is that I felt like this pre chemo 4 and yes I did end up in hospital again but it was only 2 days and it wasn’t sepsis this time so I am trying to hold onto that. 

We all need this rain to Barry off don’t we? It’s not helping with low mood issues. 

My youngest turned up here just before midnight straight from his boat in Norway and wants to take me to treatment today bless him. It will be nice to have him “captive” with me for a few hours so we can have a good catch up. (That’s if I can manage a conversation as the FEC going in makes my head really fuzzy and I often go into my own little world.) My Tom is having relationship issues so I think that’s why he’s come straight here rather than to his girlfriend in London. It’s the age old thing, after 7 years together, she wants commitment, babies (totally understandable) and he isn’t ready yet.Not sure he ever will be as he is 31! Kids eh? You think when they grow up and leave home you won’t worry so much but you seem to end up worrying even more! 

Anyway, I’ll shut up now and start getting on with the day. I’ll update later just to let you know mission accomplished. 

Love you all, each and every one of you. I would never have got this far without your support you beauts. 😘😘😘. 

 

 

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Re: February starters 2019 - yes, we rule!

My sister thought it was funny that I was trying to tuck my towel into my cold cap as my ears were freezing off and couldnt resist taking a picture!  My very last chemo ...20190610_165620 (1) - Edited.jpg

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Re: February starters 2019 - yes, we rule!

Oh and good luck for tomorrow Nettienoo. x Nearly there.

Maryln I think I will be on Anastrazole too.  It is reassuring to read that the December girls are coping ok.  My friend is on it too and she doesn't really have any problems.  She was on Letrozole but couldnt walk after 2 days so they stopped that immediately.  And she is very very fit so I was dreading that one.

Must go and wash all this stuff off my hair for the last time and hope it stays put!

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Re: February starters 2019 - yes, we rule!

Daisy our posts crossed there

 

Sounds like you have had a mixed day for sure.  You could have done without that cold cap palaver giving you extra stress!  But hopefully the other model they used is just as effective.  Your hair has taken no prisoners throughout this whole thing, it ain't going to give up now.  

 

And I really hope that the new regime of drugs from the nice doc help you have an easier ride through the final set of side effects.  Glad they have taken you seriously.

 

As for the scan results, docs are so good at saying something that sounds super worrying, then saying it is nothing to worry about, and then walking off leaving you worrying regardless!  I wish they would try a little harder to fully explain and reassure....

 

Now get plenty of rest and drink lots of water and think non itchy thoughts!!! Xxx

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Re: February starters 2019 - yes, we rule!

Hi all

Last time I posted properly on Saturday morning it looks like I was in good spirits and planning on getting some art done etc. 

Yeah that didn't happen! Smiley Very Happy

I've felt like utter death for the past couple of days, pretty much unable to do anything other than fall in and out of sleep, and feel very sorry for myself.

But.... maybe.....hopefully....touch wood I'm starting to come through that now.  I just now had a shower at least.... baby steps Smiley Happy

I used my special shampoo bar for the first time that is supposed to encourage faster and thicker hair regrowth.  I'll let you know if anything sprouts!  It has a slightly minty herbal smell but nothing too strong and it has left my little fuzzy stubble nice and soft.20190610_135122-picsay.jpg

 

 

Rosina it looks like you walked a marathon yesterday from the step count I saw pop up on your Facebook!  So if that was 10 days post T I should be fit to run a 10k by this Friday.  Will hold you to that Smiley Very Happy

 

Right....catch up time....

Seaside.... those Google photos and "Facebook memories" and the like are a nightmare aren't they!  Talk about rubbing it in.... I don't want to be reminded of how healthy looking I was a year ago, thank you very much!  I'm kind of dreading this coming October when it will remind me how I happily hiked up the hill to the Hollywood sign, all suntanned and full of energy and hair.  It was a hard hike but so much fun and I wonder if I will ever be able to do something like that again :/

Really feel for you (and Edinbird) with all those work related worries hanging over you Smiley Sad  Feels like we should all be eligible for some kind of free pass at the moment.  No extra worries allowed.  The BC is enough!

Absolutely love the photo of you and your daughter at Race For Life.  2 peas!!!!

 

Susie I hope that your weather isn't as horrid as ours right now.  It isn't great Dibley walking conditions out there today.

 

Oh and thanks to all for congratulating my young oik on his job.  Yes it is the same kid who lost the weight and got new clothes. Next time he wants new gear he can buy his own nowSmiley Happy

 

MBJ/Daisydi/Susie B ...  you are definitely not alone in a little overthinking getting you down.  Or just in general wondering how best to navigate the future without it being too dominated by the big trauma we've been through, worried about recurrence etc., not feeling able to make plans,...

 

I've had counselling in the past for PTSD, related to the domestic violence issues from my marriage.  And to be honest I can't see how this isn't kind of similar... big long drawn out unpleasant experience with the fear that at any point going forward it could raise its ugly head again.  And various potential triggers to bring up those fears or flash backs....    I think we are all going to have to work hard to get those feelings under control.

 

But having done the work and recovery before, albeit from a different situation, I can at least assure you all that it won't be on your mind all day every day forever.  The happy in between days where you don't dwell on the past and/or the scary future get more common as you go on.  The days when you just enjoy the present.  Those are the best days.  May we have many, many of those ones!

 

My son's counsellor just happens to be a breast cancer survivor herself (total coincidence).  In fact that was what prompted her to retrain from accountancy into therapy.  He said that she told him that the first time you go in for your post treatment check ups / mammogram etc it is terrifying because you are CERTAIN it has come back.  The second time you are nervous.  But by the third and fourth it is much less scary. 

 

Anyway, I'm rambling.  Just to say, I hear and share your worries and down days.  I've spent the last couple of days almost torturing myself reading multiple accounts of women who say that they are still suffering from extreme fatigue and various other unpleasant side effects years after treatment ended.  Why do I do this?  It is like I am seeking out my worst fears and validating them in some kind of self fulfilling prophecy.  Of course if I go looking for horror stories I will find them....

 

I rebalanced this rather flawed research by reading the last few pages of the August 2018 chemo starters thread here on the BCC forum - I felt a bit nosey doing so!  But I am glad I did.  Because those ladies are only 6 months or so ahead of us but 1) a couple of them are doing the Race for Life this month!  And 2) they are all dyeing their hair Smiley Very Happy   It is all so encouraging....  just to see them starting to go back to work and see their energy levels picking up.  That'll be us in a few monthsSmiley Happy


MBJ it is interesting to see you say about feeling abandoned by the docs and nurses, I think I felt like that as soon as my surgery was done in January!  I haven't heard a peep from my BCN since before chemo started.  And have only seen the onco once since early Feb.  I did see the chemo nurses every 3 weeks obviously but only in a very practical way while they were administering treatment.  Nobody has asked how I am, or anything.  Whereas after diagnosis and building up to surgery they seemed more interested in how I was coping. 

I read on the other threads about people having Macmillan nurses come to appointments with them, being offered all sorts of support....  I feel a little left out, got to say!  Smiley Happy  I found the maggies centre and got on the LGFB course on my own after seeing it mentioned on here.  You'd have thought my medical peeps might have said about it, otherwise without this forum I'd be none the wiser..... And then there are all the scans and extra check ups that a lot of you have had that I have never been offered.  Anyway, never mind, I've coped ok I guess.  But my point being, I can see why, if you have actually had good support throughout, you would be nervous of it going away!  Without you lovely lot I would have felt very alone indeed throughout this whole process.

And how long now till the cruise?  Is it this Friday, this week?  Exciting!!!!

 

Edinbird I hope today has been a better day for you.  I also hope that your surgeon and onco can give you reassurance at your meetings this week on the effectiveness of the chemo treatment to date and next steps.  You will feel so much happier once the lump is gone, I promise.  It feels like a ticking time bomb when it is still lurking in there.  Before my surgery I was *convinced* I could feel it growing day by day.  Daft because of course it wouldn't have been that noticeable, but our brains are idiots Smiley Happy

It must be particularly scary being on a big forum  where some members have passed away Smiley Sad  hopefully still a small percentage?  But even so it would still cause a bit of a gulp.

I'm reading this book of roughly drawn newspaper style comic  strips at the moment.... I can recommend it, it is harsh and to the point but also funny! 20190610_183619-picsay.jpg

 

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I didn't realise until after I bought it and was half way through, however, that the author didn't survive her BC....  makes it more poignant but also so very sad, and also not something I am really over keen to dwell on right now!

And you must be so fed up of everything deciding to break at once around the house!!! Let your hub take the brunt of worry about that stuff, if you can.  You have enough going on!

Totally hear you re not being able to take comfort in nice food.  My taste buds are worse than ever on this final round of T Smiley Sad  everything I try to eat leaves me feeling like my mouth is lined with clay, or grease.  It is disgusting.  I didnt bother to eat at all yesterday.  Today my son bought me a cheese and onion pasty home.  That was a mistake.  Bleurrghhh.  After that I managed an apple turnover which was ok during but had a nasty after taste.  That will have to do.

 

Daisydi, how did it go today?  Sorry you had to go into your last session still feeling so rough Smiley Sad  but it is done now.  One more lot of the nasty side effects to get past and then it is all up and up.

 

Ocean, I live for your photography posts I really do, thank you so much for all that wonderful colour!!!  I swear you should have an exhibition or bring out a book.

Really glad that you are coping with the weekly Taxol.  If the worst side effect if Haribo addiction I think you have done well Smiley Very Happy

6 weeks of rads sounds like an awful lot thoughSmiley Sad  I've not heard of anyone here having more than 4 weeks.  Is it worth pushing back on that a bit?

Its fab you ended up able to keep your daughter over in France for so long.  And that the son you were worried about isn't fretting too hard.  Waiting to tell them face to face paid off there I think although it must have been so difficult for you.

Rosina love your photos too!

 

Nettie I hope you enjoy your vegetarian experiment.  I've been veggie since I was 15 so i can't remember what life was like before!  I have done the odd vegan phase here and there but I always relapse as I love cheese too much.  That said they do have much better vegan cheese nowadays.

PS I'm glad your washing machine was only messing with you! 

 

Seaside I've been heavy on the mental downer this cycle so far too.... as you can probably tell by this even-more-rambly-than-usual post.  Do you think it is because it is the last one and now we start on another phase of the great unknown? 

But as you say, nobody else who isn't going through this can really get it. :/

Glad we have each other!!!

 

Ok that's more than enough of me blathering on!

Night all x

Sarah x

PS Marlyn, where's our fish and chips (or veggie equivalent)??? Chop chop!!!  Smiley Very Happy

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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 💕

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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

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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❤❤❤❤❤❤❤❤         

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Re: February starters 2019 - yes, we rule!

Hi Daisy

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

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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

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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

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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

 

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Re: February starters 2019 - yes, we rule!

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

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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

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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