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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

Rosina.....don't forget the quiet corner.....xxx

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Re: February starters 2019 - yes, we rule!

I used to go into total panic mode over my thermometer, was completely obsessed with it...so glad you were ok though....you don't want history repeating itself...

im obsessed with my blood pressure monitor right now, I see the nurse tomorrow ref high blood pressure and have been making notes of it to take tomorrow.....I'm driving myself nuts over it! 

 

Well....got rads this afternoon....wish me luck! Just hope me elbow ( or any other parts of my anatomy) aren't sticking out??!! Straight after I have my LGFG course....they had a cancellation so I almost snapped her arm off....xxxxx

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Re: February starters 2019 - yes, we rule!

Thanks Marlyn,

count to 10 . I will do my very best.

My daughter has said that I just have to listen without getting wound up.

Breath and count to 10.

Breath and count to 10.

🌸🌸🌸

 

Member

Re: February starters 2019 - yes, we rule!

Morning all

 

Stargazer!!!  It is good to hear from you!!!  We do worry loads about the people who have disappeared from the forum for whatever reason, but I guess this kind of online group suits some people more than others, so I was hoping you were ok just not on here... 


Sorry to hear you have had such a tough time with chemo Smiley Sad  It really is quite the ordeal, isn't it!   But did you say you are now on the final stretch?  Thank goodness.  I hope the last cycle is more gentle on you.  Please do pop back in once in a while to let us know how you are.

 

Most of us in here are on cycle 5 now, with 6th and final cycle in June.  Although there are a few of us who have already finished up.  And others who have a different timetable and will be continuing a little longer. 

Daisy, your point about your sister is interesting.  Mine is acting weird too.  To be fair she has always been weird Smiley Happy  we have never been close.... she is much older than me and left home when I was 4, and there were times when I've not heard from her for literally years on end. 

But now she is insisting on calling every other day or so, because I think she feels obligated to show she cares because of the cancers and stuff.... but she is odd on the phone.... almost like she gets annoyed with me when she asks how I feel and I say that I feel not so good.   I keep trying to explain that it is normal for me to feel cack at this stage of the cycle and that it is just normal side effects of the chemo and that it isn't the end of the world.  But she acts like somehow I shouldn't be "suffering" at all and it feels like she thinks I'm just not trying hard enough to feel better Smiley Happy  I think I just need to lie to her and tell her all is ticketyboo!

Families, huh??? Smiley Happy

 

Anyway, all that aside, good luck for today!!!!

 

Sonia.... I have always loved that Dr Seuss quote Smiley Happy  hope you start to feel better soon x

 

Oh Edinbird Smiley Sad Smiley Sad  reading your post I can really feel how overwhelming the job thing is.  It couldn't be worse timing for them to be restructuring jobs while you have so much else to deal with!   You do have youth on your side and I am sure you will bounce back after treatment quicker than us old dears, in terms of ongoing fatigue.  But you can't know exactly how you are going to be until you get there, and it sk difficult for you to have to make a decision on your future when you don't know what you will want or be able to manage. 

I think what I would do in the circumstances is apply for the job I would want if I was at full strength, and then ask them to manage it accordingly in terms of reasonable reduced hours etc while you build back up to full energy following the end of treatment.... rather than aiming low for a job you don't really want.

But obviously it is your call, and you understand your employer and your situation far more than I do.

 

Rosina.....  that sounds just like afternoons spent with my other half's gran!  She tells us repeatedly (literally, same stories over and over and over and overrrrrr) about all sorts of incredibly dull things happening to people we have never heard of.  And if we try to tell her about anything we've been up to she really isn't interested and cuts us short and starts on her anecdotes again.   You just have to grin and bear it!  Smiley Happy

 

And talking of dull anecdotes.....

 

As for me.....well.... I had quite the evening last night!!!

 

I was super tired most of the day yesterday, dozing off and on on the sofa, so by early evening I had taken myself up to bed. 

Ironically when I got to bed I woke right up again so sat there reading....then I started to feel really warm, took my temp and it was 38.2    oh dear, here we go again!

 

But then I noticed that the radiator in my room was on full heat, which it shouldn't have been according to the thermostat setting.  Went through the whole house, every radiator was on crazy hot.  The kids were melting.  House was like a sauna.  No wonder I was warm!

We turned the thermostat right down but the radiators wouldn't turn off!  Kept getting even hotter!   Ended up having to turn them off at the boiler.  Turns out that the batteries in the thermostat remote control are nearly dead and so it had gone loopy....  by the point we finally managed to get the house to stop its crazy overheating I was up to 38.6!!  I was in a real panic, I couldn't work out how to stop the radiators getting hotter and hotter and thought the boiler was going to blow!!!!  Thank goodness for YouTube videos, I found one that showed me how to switch it off....

 

I felt fine though, didn't have an actual hot forehead, felt ok in myself.  So I really didn't want to over react and head straight back to the hospital when I was fairly sure my high temp was just down to the insanely hot house and the panic of trying to stop the boiler exploding.

 

So.....  I decided to get out of the sauna and went and sat in the car on the drive and watched telly on my iPadSmiley Very Happy    by this point it was about 10.30 at night and my neighbour gave me the strangest look out of his window Smiley Very Happy

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That worked to a point, I soon cooled down to about 37.8, but that is still too high.
Then I came back in the house that was still residually too hot and it started to creep up again.

So I basically sat there till nearly 3am repeatedly taking my temp and getting myself in a total state,  which in itself was making the numbers go up and down, getting ready to call a cab for a middle of the  night dash to to hospital....

 

Then, like a twit, I fell asleep, thermometer in hand!  Smiley Happy

 

And.... by some miracle woke up this morning still alive and with a nice healthy temp of 37.0

Phew!

 

I probably should have gone to A and E last night when I couldn't get it under control.  But I'm kinda glad I didn't given that everything turned out ok in the end. 

All this is so blinking stressful!

 

Here's to all of us getting through today as best we can xxx

 

Iove to all

 

Sarah

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Re: February starters 2019 - yes, we rule!

Edinbird,

that just sounds bloody horrible.....I think not get a good nights kip puts the icing on the cake. I thank my lucky stars I didn't have to move onto T .......it comes to something when you start being grateful for the cancer you have! I hope you turn a corner soon Hun....I really do....and for all you other beautiful ladies who are suffering.....xxxxxxx

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Re: February starters 2019 - yes, we rule!

Oh Rosina....your post had me on stitches ( in a loving way) this was how my mum was....i used to count to 10 in a quiet corner....you took me back in time...lol.....

good luck in the hotel....breath.....xxxxxx

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Re: February starters 2019 - yes, we rule!

Hi Daisydi 

thanks for your post. New day , new start, this is what I wrote to my brother yesterday as I was so irritated with my mum :

‘Hi Bas, have just got back from a pub lunch with Granny and the kids. Place I took you. Granny wanted fish and chips then because it was Sunday and they had roast she changed her mind and had roast beef instead. Fair enough. It wasn’t hot enough for her so she sent it back and they made it hotter, fair enough ( but the Yorkshire pudding was burnt at the edges now), then the beef wasn’t sliced thin enough and it was too much to eat and it was better at the carvery in Yorkshire when she last had it with her cousin R. Then , did I know about L’s friend’s son who used to be a coast guard in Corfu and had now got a good job in Belgium and his mother moved to Corfu to be with him ? I said Corfu is a nice island. Anyway to cut a long story short I ran out of patience with her . My kids were telling me to calm down, Granny was saying ‘best not to talk’ 🤪 I was saying no , let others talk about something as nobody knows or cares about these people you are going on about. Granny ‘s answer the kids don’t talk. When they do talk she can’t hear them ( she took her hearing aid out) 🤪 
I think it’s old age!!!
She wanted to come tomorrow to the hospital with me and I said ‘to do what?’ I don’t like going but I have to. Anyway she is going to Boots the chemist and I said get the hearing aid fine tuned . She said she is. Then the other one was ‘I am not allowed to watch Eurovision’ and I said I never said that, it was on last night at 9pm and I asked you if you wanted to watch it but you said you were tired. She couldn’t argue with this as this is exactly what she said. I dropped her off at the Beauty Salon yesterday to get her toenails done and she insisted on walking back.
Anyway we are all good now. I am having a nap. As I said , it’s old age so no point in getting irritated. She liked the Calm music though. We are having 1 night in a hotel in the Ashdown Forest on Tuesday.
Oh and when I attempted to talk about the summer holidays, her answer was ‘ I cannot think that far ahead , day at a time’ but nobody talks we just have to listen to her rubbish stories about idiots we have never met. 
😫 So verdict she always was like this, Papou probably listened for as long as he could take it and then found other things to do with his time and brain.
Deep breath.
I feel better now 💋’

Still feeling that I need to develop more patience.

Must be hard for you Daisydi, at least my Mum can have a conversation with me ( even if she can keep going while the rest of us have a glazed look).

Bit embarrassing when your own teenage daughter is telling you to chill!

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Re: February starters 2019 - yes, we rule!

Morning xx

 

Well I was feeling a lot better last night the leg aches had stopped and I just thought I was tired. Called back fit for work. Fast forward to now when I’m sat in bed feeling rough, had a rubbish nights sleep and woke at 4 with legs aching again, headache, nose all bunged up again, just feeling wrong. Thank goodness my temperature was ok! Took paracetamol but that didn’t do a great deal. Back/stomach hurt also so not sure if that’s period trying to happen or the injections doing it?

 

So now I’m meant to be working!! 😬 it’s ok I only need to do a few hours my first two days back. Can’t face it yet though. And I have to do my job forms so it needs done. I have to do a note of interest for a job two grades down that I might end up having to take with no pay protection if I’m not successful for one of the jobs I’m matched into (that I don’t even know if I can or want to do after all this) and a flexible working application to show how I would do the jobs I’m matched into which are both based in Glasgow and I’m here. I didn’t want to do all the travelling before and I certainly don’t want to do it now! I have to show some innovation and willing to do it, it’s so hard not knowing what I’ll be able to do when it comes to it. Not just when treatment is finished but I see people talking about being tired months or years down the line. I have to make an effort on these jobs because if I don’t then I’m withdrawing from the process and basically resigning! I’ve tried so hard to just carry on with things and keep my life going but the thought of full time work after so long scares me to be honest, and then having to travel hours at least half the week, I think I’d be so tired and fed up and worn down. My job has been my life and now I just can’t face it. I’ll have to try and I’m sure it’ll be ok but it doesn’t help that I will never have my job to go back to as it’s gone 😔

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Re: February starters 2019 - yes, we rule!

Glad to hear from you star gazer, 

 

Hope everyone is good today, I’m still feeling run over by a bus, at the moment, but hopefully not long now till it passes. Oral thrush is getting me down. I’m just fed up with it. 

Saw this, this morning and thought it was very fitting xx 

 

 

64A0224E-183E-48A5-8BB7-50D5CE126861.jpeg

 

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Re: February starters 2019 - yes, we rule!

Hi Stargazer1 

So glad to hear from you☺. Will write more tomorrow. Have often wondered how you are getting on. P.lease keep in touch. SusieB/Lesley xxxxx   

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Re: February starters 2019 - yes, we rule!

Hi ladies,

I havent been on here for a very long while. but I have been thinking about all of you.

Ive been suffering from anxiety due to having extravation during one of my treatments and a hospital stay, I was prescribed lorazapam, which i refuse to take!  However I know its the last week of treatment for some of us so I just wanted to wish everyone the very best. I for one cannot wait for this 6 month nightmare to be over.

Good luck fabulous ladies

Lisa xxxxx

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Re: February starters 2019 - yes, we rule!

You must watch Madonna attempt to sing.  You will be cringing and it is so funny in an awkward kind of way!  I couldnt stomach watching the whole thing but I just happened to put it on when she came on.  Why am I not bouncing about on steroids this time???  Dont even have a rosy face but do keep getting hot flushes.  The art therapy sounds really good.  I think my cancer centre does some kind of art course but I never go in there!  Have the LGFG booked for 30th May and if I am well enough by then will check mine out too.  I think my sister is struggling to know what to say to me.  She tries to be upbeat but she was horrified how I was last time and doesnt know how I can put myself through it again.  My mum doesnt know what day it is and I think she seems to have gone blind as she cant see me or anything come to that. When I talk to her she looks up at the ceiling.  They are putting it down to the dementia.  I am not convinced but I havent got the energy to argue with them at the moment.  Hope everyone is ok x  By the way my onco nurse advised me not to take steroids after about 2pm so they dont interfere with sleep!  We'll see

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Re: February starters 2019 - yes, we rule!

Hi Daisydi,

we gave up.

We saw Madonna give her little speech, Mum cracked up over the eye patch and one of her crew saying that his mum grew up listening to her songs . We were in fits of laughter.

😂😂😂

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Re: February starters 2019 - yes, we rule!


Ahhh Ocean, we can always rely on you to pop up with some gorgeous pictures just when we need a bit of colour and natural beauty.....  absolutely stunning!
 
I know what you mean about lack of dignity.. sometimes, if the medical professionals in attendance seem trustworthy (like my nice chemo nurses) I am perfectly happy to throw caution, and clothing, to the winds Smiley Happy   But if you get a funny feeling from someone, and they don't seem to be particularly considerate in regard to making sure you are well covered up, it suddenly feels extremely awkward and uncomfortable!  The last thing you want is to be creeped on when you are already in a vulnerable and upsetting situation. 
 
I remember them asking when I was in labour with my 3rd son if I was ok with a couple of student midwives coming in to observe.  I thought they would be female, and only 2 or 3 students.  I looked up to see about 15 young people, a mix of male and female, staring intently between my legs!!  It was somewhat offputting!!!
 
 
As for physchologists etc, it seems to really vary who gets offered what.  
 
Rosina has her lovely art therapy - which I am so jealous of Smiley Happy - and a few other people have been offered counselling either now or after treatment.  Nothing remotely like that has been mentioned to me at any stage throughout the whole process, all the medical discussions have been strictly about physical not mental health.....

Maybe because I haven't expressed any concerns?

 

I did notice when I went to the Maggie's centre in Cheltenham for my LGFB session, that they do offer a 6 week course on "what now after treatment?" which I think I will try to get myself booked onto.  It will mean having to skive off work 2 hours early every Tuesday for a month and a half, which my boss might not be best pleased with, but I'm going to say/imply it is on doc's orders.....

 

As for out other halves / families etc.  My fella is keeping a brave face, he is being very matter of fact about everything, supporting me through treatment, taking the mickey out of me occasionally to make me laugh and cheer me up, but generally choosing not to make it into too big a deal.  I am grateful for his approach but do worry that he is more worried deep down than he is letting on.....  I can't see him being interested in counselling or chatting about it online though.  Not his style.

 

As for my 16yo son.... it is definitely playing on his  mind but he was deflecting his worry onto our cat!  He kept asking me every day if I thought the cat was ill, if she was sleeping too much, if I thought she smelled odd, what would happen if she died, whether we should start keeping her indoors as he was worried about her getting run over.  He was getting so obsessive about it that I twigged what was going on.  He didn't want to let himself worry about anything bad happening to me so he subconsciously made it about the cat instead.  Brains are clever!


He is now seeing a child/teen psychologist once a fortnight (at great expense!!) and it seems to be doing him the world of good.  He tells me he loves therapy Smiley Happy 


The older kids?  They just don't mention it at all....  I've asked a couple of times if they are worried and they just brush it off.....

I think there is a Macmillan leaflet for loved ones, which might be of some use?

 

And talking about people worrying about other people - Sandra please thank V but honestly she mustn't be worrying about me!  I'm absolutely fine.  I mean nobody enjoys feeling poorly but I know *why* I feel naff, and I know I only have to put up with it for a couple more days.  Genuinely I am so utterly delighted that I didn't end up back in  that horrid hospital this morning, that I am a happy bunny!!!  

I have just spent a couple of days mainly asleep and feeling under the weather, but in the grand scheme of things that isn't that big a deal...

 

Sarah x

 

PS I skipped Eurovision this year.  Doesn't sound like I missed muchSmiley Happy  and I don't think it would be anywhere near as much fun sober!

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Re: February starters 2019 - yes, we rule!

Yes thanks Ocean it certainly is beautiful where you live.  Rosina wait until you get to Madonna.  It was truly awful!

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Re: February starters 2019 - yes, we rule!


@Rosina wrote:

Rosina, Veronica really wants to speak with you about all things Classic, her major problem is the attacks with aura that she has and blurred vision that prevents her to jump on the bandwagon and start a 'proper conversation' as she says!

But she is really looking forward to it!

 

Implausible, Veronica says that she wish she was there to give you some comfort, and to all other 'sisters' that are being through this misery.

And, Edinbird, she says that she is still keen on moving to Edinburgh, and she will look forward to have coffee with you one day!

Ocean21, you have the garden that I always wanted. Did you plant it all yourself or some came with the house?

Keep moving, my dears, we are all closer to the door!

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Re: February starters 2019 - yes, we rule!

Thanks for the pics Ocean21, 

I am keeping mum company and watching the Eurovision Song Contest on bbc iplayer. So far it is cringeworthy awful 😬

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Re: February starters 2019 - yes, we rule!

A7BAE3B1-39B1-4B36-B56F-7BAFE7BFCDB6.jpegFD5772E4-F9D2-4F1D-9156-83426EA97287.jpegNigella604C4F65-5D0B-4EA1-8C66-2084FEAE16EA.jpeg216B1EEE-1AFE-4987-B225-3CDEA9DC3B05.jpegE0A6FCC5-E434-4671-B4B7-0328268D58B4.jpegPurple elderflower. No idea what it’s posh name is, it’s a cutting that I took and nurtured on.6C749FDC-627B-493E-B7B7-239FF354BF14.jpegWater lily flowers coming through20B71D54-3E64-4E25-9F1C-C070FE5BEBE4.jpeg5BE4922E-DE7C-4C72-83E3-97EDEF33D790.jpegI trying to ‘rewild’ parts of the garden. Garden needs to get its natural equilibrium back. Previous owners didn’t feed the soil and the farmers roundabout love their sprays. No matter, we’ll win through.72B1FDF6-1057-481F-B72A-7F6F152CE4CC.jpegButtercups. The dragonflies are loving being amongst them.E2A69985-BC0D-4CBA-8CE8-9C8129140C09.jpeg97134452-7026-4830-8823-7711EE0568B6.jpeg

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Re: February starters 2019 - yes, we rule!

Hey lovely ones,

 

Read through and caught up... I think ! 

 

Taxotere seems like a proper  bundle of laughs .. not. I wasn’t looking forward to weekly Taxol that I have but although the weekly  regime has its drawbacks I’m grateful not to be experiencing the side effects that you guys are having with Taxotere.

 

The one thing that I hadn’t anticipated on a weekly regime is the psychological adjustment. It seems like there’s a very short window available when you can stop thinking about being a bc patient. With a three weekly regime you could get some downtime.Anyway, whatever our regime we’re slowly but surely making our way through this bc quagmire and we’re winning.

 

 

Ive had 3 sessions of Taxol and I’ve another 6 to go. Then I have a break for a month and then I start rads for 5 weeks. Don’t know what the treatment regime is for that here but I’m due to see a radiologist so no doubt all will be revealed. Not looking forward to the topless bit among strangers but as you say Sarah, how else would they deliver such targeted therapy effectively. 

 

They’re don’t seem to go a bundle on patient dignity here. When I went for my heart scan this man who did the initial intake told me to remove all clothing from my top half and didn’t offer me anything to cover up.Don't know why but I instinctively felt something wasn’t right with him so even though my other half was with me I tried as best as I could to make sure he didn’t see much. From the look on his face I knew I made the right decision.Then after a little wait the cardiologist walked in and I had to uncover. Felt very undignified.Thankfully, Mr Creep wasn’t in the room too.

 

I see that some of us are struggling with moods and very understandably periods of high anxiety.

Over here , there’s a psychologist attached to the oncology team if patients want to see him/ her is it worth asking your respective oncology teams if there’s a similar service available for patients? Even if there aren’t any individual sessions available there may be group sessions where you can get together with other bc patients and talk through issues.Do  Macmillan offer any kind of talking therapy sessions?

 

On the subject of moods, I know it’s been an emotional rollercoaster for us ,what’s it been like for your partners/ loved ones? Have they said anything or are they trying to put on a ‘brave ‘face too?My other half had a bit of an outburst on Friday which is making me pause for thought.  There’s a carers forum on here that he might benefit from but apart emailing and reading online news he doesn’t ‘do’ any IT/ social media stuff and also I guess he’d feel hampered if he thought I might read what he wrote.

Conundrums, conundrums. 

 

 

Audiobooks, love them. I tend to listen while I’m crafting or decorating. I’ve tried it while gardening but that didn’t work out too well especially when I have to shift things. ! I started a book group here. Mainly to meet like-minded readers. I’m not into chick-lit or romances so I knew the only way to have a group for the kind of literature that I’m into is to start my own. It’s been an experience! That said I’ve got a core group now who are on the same vibe as me so that’s great. Seriously , thinking about starting an online book group so if any fellow readers are interested let me know.

 

Some pics for you. By the way SusieB , you and your hubby are justly proud of your garden, what a lovely space.And your wisteria looks wondrous, I’m jealous. Ive got two I’ve grown from seed , they’ll probably be about 18” high in 2025🤣

 

Hope that everyone is having a reasonably restful day.

xxA140E8F8-8ED8-49E7-AD4F-0C6A452803CA.jpegAllium754497B4-0215-4903-92AB-4CC3302640F8.jpegDFAFAC52-8B9C-4FD4-9266-AAB7CEAFA44F.jpegValerianECA965FB-71C8-4FCE-AD6F-B6F2231EB81C.jpegBorage & bees. Self seeded, I leave it as the bees love it.

 

 

 

 

 

 

 

 

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Re: February starters 2019 - yes, we rule!

Morning everyone

 

Hope we are all feeling as well as can be expected

 

I woke up this morning, looked in the mirror and got a shock, I looked like a murder victim, dried blood all over my face and pillow from what looks like a rather spectacular night time nosebleed.  Thanks T! Smiley Happy

 

I've decided that, what with the nosebleeds and my lovely skinhead hairdo, I'm basically Eleven from Stranger Things Smiley Happy
img_7698.jpg

 

BUT that aside ....this time 3 weeks ago I was on my way to the hospital with a temp of 38.2, this morning it is 37.1 and I ain't going NOWHERE Smiley Happy woohoo!

 

Still feel weak as a kitten/achey all over/ generally cack, but I'm happy as larry sat at home on my own sofa watching Line of Duty.  Fingers crossed I can remain out of the danger zone.

 

Rosina - thanks for all the detailed info about the art therapy stuff.  That is really helpful.  I'm still trying to work out how I can find a way to help with it on a part time/part qualified basis.....  if it is generally administered strictly 1:1 then that might be tricky.  I kind of want to find someone doing group art therapy so that I can just be a kind of classroom assistant....    I am definitely going to go to that one day workshop in September if I am well enough and I guess I can ask them there how best to proceed.    Also I would rather work with adults than traumatised kids..... I don't think I would feel comfortable having that much responsibility!  Either cancer patients or maybe domestic abuse survivors....   lots to think about....  I just want to "pay back" into society a little.  Funny how a brush with mortality changes your priorities!

 

Sonia my last chemo is due for the day before yours.  We are getting there!

 

Nettie sorry you are hitting that rotten stage of the cycle.  Hopefully it won't last too long.  I am almost nostalgic for FEC now that T is so much horrider!  But I think I got away with a lot on FEC, I know it is a lot worse for some of you than I had it.  

 

You sound like me with sports.....  I hate to see the other team getting a total thrashing even if it means that my team wins!  I remember my pal's hubby having a right go at me once as we were watching our team dish out a 12-0 victory against the Telford Tigers.  I said "I wish Telford would just score one goal", and he immediately declared me a "fake fan" who doesn't understand how hockey works.  Smiley Happy

 

Lovemama,  sounds like you have really been through the wars Smiley Sad  but great news that side effects are now clearing up and you are on your way back to your old self.  I appreciate you giving us a bit of a timetable expectation, as I think we are all hoping to bounce right back to our old "normal" as soon as treatment ends, but of course that isn't realistic! 

 

I'm hoping to at least feel a bit more like me by the start of 2020, but I have accepted that 2019 is a bit of a write off!

 

Edinbird, looks like you did a bit of a "count your blessings" exercise this morning.  Always a good idea.  I also am grateful that, although the treatment has not been remotely fun, at least it is available to us for free, and it is working to make us better.  We will all come through this stronger.  Eventually!   

 

And as you say, in between the horrid bits, we have mostly managed to have some fun, days out, nice walks, even trips to France! 

 

And great news about your pal's benefits and counselling... it is difficult when you care about someone who the system appears to be letting down....  a relief for you there.  It isn't as if you don't have enough to worry about already of your own!

 

Oh and I can't sit down in my shower cubicle eitherSmiley Happy  it is tiny! 

 

Daisydi enjoy the readybrek steroid glow Smiley Happy

 

Sarah x

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Re: February starters 2019 - yes, we rule!

Morning all, jjust taken steroids so looking forward to a nice healthy glow.  Here we go again ....

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Re: February starters 2019 - yes, we rule!

Hi Edinbird, 

I sit in the bath. Shower is set to warm ( not hot) I stand at the far end of tub as the water always starts off cold and move in once water is warm and sit down.

I only get up once I have finished and switch shower off.

Hope this helps 🌼

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Re: February starters 2019 - yes, we rule!

Rosina the good shower is in the en-suite in a cubicle so I can just about sit down but it’s very awkward. Have a shower over the bath in the main bathroom, it’s not like that one is dreadful but it’s not as good. When I have a shower I have it on hot to wash my body - turn it down to wash my hair - turn it down again to condition my hair. I’d have to be up and down to keep adjusting it and it’s tricky when there’s not much space. I don’t think my joints would like it! I could try the bath one, it’s not like it’s too much faff to adjust until I have the right temperature. I could sit on the edge of the bath but that’s not too comfy.

 

I probably need to wash my hair it was Tuesday when I last did, I’ve been so sweaty it’s rather revolting! No one can see under my hat but when what pokes out is all stuck together and greasy too I feel a right mess in public!

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Re: February starters 2019 - yes, we rule!

Edinbird, Good Morning 

“Might reward myself with a shower (tho that involves standing up so will have to think about that...)”

just wondering : can’t you sit down in the shower? I have done so on many occasions ( both now and before bc ) just make sure the shower curtain is well placed and that the water can flow down the drain. I angle the shower handle so that the water hits my back between the shoulders. 

Hugs,

Rosina

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Re: February starters 2019 - yes, we rule!

Morning xx going to get in early whilst I’m not feeling too bad!

 

Crappy nights sleep more sweats and was just wide awake at one point so I got up and had tea and toast! This extra weight is no way coming off! 😂 legs still sore and slight headache actually but I don’t feel too bad in myself. Think I will try for the shopping later and that will be my effort to be normal today. Might reward myself with a shower (tho that involves standing up so will have to think about that...)

 

Feeling happy tho as

 

Weather looks nicer today 😊

Bestie found out his benefits are being increased not cut! We were so worried he was losing out. Not that I want him to be considered more sick but it’s a proper reflection of his situation so better all round

His counselling that we thought was being cut because he’s struggling (yeah that makes sense) isn’t so again more stuff I don’t have to worry about when Barry is being Barry

Won the lotto!! I got a free lucky dip 🙌🏻😂 haven’t won a thing for ages so that’s good!

 

A few of us seem to be having treatment early next week, it must be stressful waiting for it when several of us seem to be suffering from ours... I’m thinking I can’t wait for my last cycle but I don’t want to feel like this again! Wish I was back on FEC... but FEC wasn’t zapping the little bugger that well. If T has been killing all the good cells and not really getting the bad ones I will be most annoyed! Laying here having a good poke and prod and nipple fiddle... no point stressing as it’s not clear cut but less than 3 weeks to my scan won’t really give the third T much chance to work... they must know what they’re doing.

 

All the nurses were very positive in hospital and two said they wouldn’t even know about my hair (was wearing a headband) and one still said it looked ok when I took the band off!! Yeah I’ve ended up admitted twice but I keep saying how I’ve never felt or been sick. I’ve had a sore throat, constipation, diarrhoea, felt dizzy, a cold. Just normal things everyone gets. These aches aren’t normal and neither is the hair loss but that’s ok, I suppose I still feel like chemo hasn’t kicked me in the butt too much. And then I feel bad for everyone who has had to stop early, who has been delayed, who has been stuck in hospitals for days in a cupboard or not.

 

Flip side... Everyone who has managed to do loads of exercise and eat well, everyone who has gone on holiday!! We are all getting by and the bad bits we get through together and the good bits help us get through the bad bits. Flowers and art and music and food. And lots and lots of poop and blood and other Barry stuff.

 

We are all wonderful 💕

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Re: February starters 2019 - yes, we rule!

3F400DD5-A457-4F0C-A4B9-7DC5F79E0294.pngToday’s message

 

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Re: February starters 2019 - yes, we rule!

Hi DaisyD, Marlyn, Susie B, thanks so much for your virtual hug. It really helped me to calm.

Not a surprise to me, I got almost all the side effects in the list. The bisphosphonate Zometa had turned me to a  zombie for 1 whole week. Stiffed and heavy legs, headache, sore muscle in legs and arms, watery eyes. Took 3-4 Tylenol (Panadol in UK?) every day and finally yesterday, all symptoms suddenly disappeared.

11 weeks after my last dose of 3-weekly Paclitaxel. My finger tips still couldn't feel the hot and cold. Still blurred vision. (Remember when having EC in 2011, my onco told me my vision prescription should be able to reverse after chemo and it did.). This time, the chemo nurse told me to be patience, some people took a year to recover. My hair started to grow when cycle 5 (out of 8). 20 weeks now, about 1 inch.

3 weekly paclitaxel is as toxic as 3 weekly docetaxel or maybe more. But a recent research is showing docetaxel is more effective than pacltaxel. The research was printed at end of 2018 which was after my chemo started  8-(

https://news.cancerconnect.com/breast-cancer/taxotere-confirmed-more-effective-than-taxol-for-metast...

 

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Re: February starters 2019 - yes, we rule!

AB84FB55-C4CD-4A0B-98D2-F47E69A7DF33.jpeg

Hi my gorgeous ones. I’m managing to keep up with your posts but am in full steroid comedown/wbc build up this weekend and feel pretty poop. Barrying hate FEC but from what I’ve read would be hating T more. So sad you are suffering on it girlies. I’m sending you all a cuddle. Hopefully back with you in better form soon. On the plus side, I managed to drag myself downstairs to watch my team win the FA cup. Felt so sorry for Watford though as the goals kept going in. Xxx

Member

Re: February starters 2019 - yes, we rule!

Hello All,

catching up on all the posts.

1) Implausible your posts make me laugh. I have never thought of you as being sarcastic! I am now referring to T as ‘horse tranquiliser ‘ to family and friends. Re. the art therapy my sessions are 1-1 and I really get a lot out of it. My H1 thought that I was painting a ‘still life’ each time I went ( he would ask me what did you paint today ? ) another friend asked if she could come and watch and a colleague at school  made an off the cuff remark and said ‘does that mean you sob while you paint ?’ which shows how little is known out there about what art therapy is ( my colleague- senior to me I may add should have known better- I think she was trying to keep the conversation light and amusing!!!).

 I knew nothing about art therapy when I started but I have always liked to paint and draw ( I ended up doing an art A level in a year, during my 2nd year of teaching when I signed up for an art evening class and the tutor talked me into it 🤪 got a ‘C’ grade ).

My art therapist is a ‘transpersonal’ counsellor. We usually start with a chat about my week, or how I feel, or why I was late ( this happened last week 😬) anything really and I have the option to use watercolour , chalk or pastels. I lead the session and I feel totally in control. One 2 occasions I have been gently guided to notice something in my creation and then we talk about it.

There is no object or idea that I aim to paint it’s more about the colours and patterns that evolve during the session and we discuss them afterwards. I find it fascinating.

 In my most recent session my therapist said that talking isn’t necessary at all , as the art acts as the ‘expression ‘ . I could immediately see how children would benefit from this.

 I have found that I ‘reflect ‘ a lot on what evolves.

The link to the course you shared looks fascinating. If I were you I would go.

 I did also attended a group workshop ( there were 4 of us) lead by the same therapist which also gave insight to myself.

 2) Re. the food and cheese in particular it was Ayurvedic Lady who told me soft white cheeses only ( low oestrogen content as I am ER+), regular medics have not banned anything food wise . All they said was ‘no scientific evidence to link anything in one’s diet to breast cancer ‘. I just kept reading around. I love Stilton and had a bit. H1 advises me to ‘listen to my body ‘ and eat whatever I want but he draws a line at any flesh as he is vegetarian ( did that fish want to die ? did you think about it’s life blah blah).

What else, my Mum, smoked ( not heavy) , drinks in moderation, ate whatever she wanted ( never dieted in her life) never took vitamins, doesn’t pop pills ( a good thing as thalidomide was offered to her for morning sickness way back 😱) she thinks that my disease is due to stress and the mad pace of life that is considered ‘normal’ these days.

We have had this tune on tap today:

Music to keep you calm

as we both hate being told what to do 😬

Good night, sleep tight 🙃

 

 

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Re: February starters 2019 - yes, we rule!

Edinbird, I’m  just behind you, My last T will be on the 5th June, no date for radiotherapy as yet. 

I wont be having anymore scans so my oncologist told me last week. Not sure how I feel about that. 

Possibly on meds for 6 months before ovaries out, and unsure on reconstruction date. 

Im like you implausible I like to know what’s going on and when( control freak in me). I feel that’s what I’ve lost control of most with Barry!!

 

currently haven’t got up to much today, very lazy and lots of aches and pains. Currently having a nice hot flush, not looking forward to more of theses. 

 

My heart goes out to you Sandra watching your child in pain is the worse, hopefully someone can help out💕

 

We are nearly through stage one ladies we can do this 💪

 

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Re: February starters 2019 - yes, we rule!

Implausible/Sarah, she needs a turn around, she will feel better, it was to much, cancer/mastectomy/my own illness/unemployment/financial issues... I keep telling her that she is my hero, nobody can cope with all of this at the same time!

 

So glad you are better, I am sure that it will keep like this.

Member

Re: February starters 2019 - yes, we rule!

Hi Edinbird 

my  last T is 7th june do I’m still behind ya! When my temp is either fly high or really cold I give myself 2 hours to try and regulate which helps - currently having hot flush the joys but I feel better than last time - try for a reduction if you can. Had my mri and they said it should look at my  lymph nodes should get my results in 2 wks then appt for surgeon after last T. 

 

Onwards and upwards you are nearly there  keep strong ❤️❤️

Member

Re: February starters 2019 - yes, we rule!

Smiley Sad  there must be something that they could prescribe to at least help V a little?  Beta blockers maybe?  They are supposed to be safer/milder? 

 

In better news, happy to report that my temp is now safely back in the happy range.  Phew!

 

I don't want to go back inside!!! Smiley Very Happy

 

 

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Re: February starters 2019 - yes, we rule!


@Implausible wrote:

You will all be delighted to hear that I have now showered and changed!  My household have taken the pegs off their noses Smiley Happy

Although don't ever let me go to prison as I dropped the soap about 20 times!!!

 

Sandra.....  is it time for a visit to the GP to get V some medication for her anxiety/depression??  It sounds to me like she could do with a little help there, and it seems that a few of our ladies on the forum have found that little extra medical nudge to be helpful.....

 

As I kind of touched on earlier, I am lucky really that I tend to be able to keep- if not upbeat - fairly chill most of the time when it comes to mental state/moods.   I occasionally feel a bit fed up when I am under the weather , like today.  But never for long and never too negatively.   My mantra for the bad bits is "come on Sarah, rest up and wait it out".... and that seems to be enough to keep me in fairly good spirits.

 

It must be absolutely unbearable to have not only the physical symptoms to deal with but also strong moods/anxieties/ depression.  If it happened to me I'd like to think that I would be asking the GP to throw everything they can at that just as they would a physical symptom. 

 

Please reassure her at least that she is not alone and we are all rooting for her.  And hopefully the further she gets from her last chemo, the better she will start to feel x

 

Marlyn.... apparently I don't have to be tattooed for the rads, so the lady on the phone said.  But I have no idea why not.  Surely everyone has to?  I guess I will find out more when I get there!  Am hoping they can fit me in the day after my next T dose before the steroids wear off and the side effects hit me....

 

 



@Implausible wrote:

You will all be delighted to hear that I have now showered and changed!  My household have taken the pegs off their noses Smiley Happy

Although don't ever let me go to prison as I dropped the soap about 20 times!!!

 

Sandra.....  is it time for a visit to the GP to get V some medication for her anxiety/depression??  It sounds to me like she could do with a little help there, and it seems that a few of our ladies on the forum have found that little extra medical nudge to be helpful.....

 

As I kind of touched on earlier, I am lucky really that I tend to be able to keep- if not upbeat - fairly chill most of the time when it comes to mental state/moods.   I occasionally feel a bit fed up when I am under the weather , like today.  But never for long and never too negatively.   My mantra for the bad bits is "come on Sarah, rest up and wait it out".... and that seems to be enough to keep me in fairly good spirits.

 

It must be absolutely unbearable to have not only the physical symptoms to deal with but also strong moods/anxieties/ depression.  If it happened to me I'd like to think that I would be asking the GP to throw everything they can at that just as they would a physical symptom. 

 

Please reassure her at least that she is not alone and we are all rooting for her.  And hopefully the further she gets from her last chemo, the better she will start to feel x


Sarah, medication for anxiety or depression is a no-no for her. We have spoken many times with her neurologist about this, and it have a negative impact in her situation related to her migraines.

Brains are really annoying!

I think that a therapy using pattern modification would be the best for her, but... she has to want it, and I completely understand when she says that she has enough on her plate for now.

Funny, I use the same method you use to surpass situations. I was a depressive person all my life, but my external behaviour is completely different. Nobody would peg me for a person with such nightmarish thoughts Smiley Happy

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

Hi. girls

Just seen this on FB thought it was appropriate for all of us. IMG_20190518_180803.jpg

 

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Re: February starters 2019 - yes, we rule!


@MBJ wrote:

Hi Daisydi

I completely understand your worry about recurrence. I think we will all find that nag that seems to only relate to us as individuals. For you it's the number of lymph nodes that's your demon. Mine is stopping the chemotherapy treatment, especially when I read about those that have had big reductions. I worry that these few weeks I have enjoyed when all you girls have been suffering will not last. When I read all of your posts I feel I have not suffered enough to ensure it stays away. All ilogical know but there it is in black and white. 

But enough of that I am off to the party. 

Will catch up with everyone tomorrow. Xx


MBJ, Veronica asked me to tell you that she is feeling exactly how you are feeling, she says that is really the same!

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Daisydi

I completely understand your worry about recurrence. I think we will all find that nag that seems to only relate to us as individuals. For you it's the number of lymph nodes that's your demon. Mine is stopping the chemotherapy treatment, especially when I read about those that have had big reductions. I worry that these few weeks I have enjoyed when all you girls have been suffering will not last. When I read all of your posts I feel I have not suffered enough to ensure it stays away. All ilogical know but there it is in black and white. 

But enough of that I am off to the party. 

Will catch up with everyone tomorrow. Xx

Member

Re: February starters 2019 - yes, we rule!

You will all be delighted to hear that I have now showered and changed!  My household have taken the pegs off their noses Smiley Happy

Although don't ever let me go to prison as I dropped the soap about 20 times!!!

 

Sandra.....  is it time for a visit to the GP to get V some medication for her anxiety/depression??  It sounds to me like she could do with a little help there, and it seems that a few of our ladies on the forum have found that little extra medical nudge to be helpful.....

 

As I kind of touched on earlier, I am lucky really that I tend to be able to keep- if not upbeat - fairly chill most of the time when it comes to mental state/moods.   I occasionally feel a bit fed up when I am under the weather , like today.  But never for long and never too negatively.   My mantra for the bad bits is "come on Sarah, rest up and wait it out".... and that seems to be enough to keep me in fairly good spirits.

 

The only time I got properly upset was the other week when I thought they would never let me out of the hospital! 

 

It must be absolutely unbearable to have not only the physical symptoms to deal with but also strong moods/anxieties/ depression.  If it happened to me I'd like to think that I would be asking the GP to throw everything they can at that just as they would a physical symptom. 

 

Please reassure her at least that she is not alone and we are all rooting for her.  And hopefully the further she gets from her last chemo, the better she will start to feel x

 

Marlyn.... apparently I don't have to be tattooed for the rads, so the lady on the phone said.  But I have no idea why not.  Surely everyone has to?  I guess I will find out more when I get there!  Am hoping they can fit me in the day after my next T dose before the steroids wear off and the side effects hit me....

 

 

 

Edinbird.... it wasnt actual raw blue cheese, it was dressing from a bottle , so hopefully pasteurized.  And I only had a tiny bit....  will avoid the rest Smiley Happy

 

My temp is now over the limit but I'm hoping that is from the hot shower.  Trying not to panic and will test it again in 20 mins or so....

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Re: February starters 2019 - yes, we rule!

Hi all 👋🏻 

 

Today has consisted of variously getting up, cooking, eating, sweating lots then going back to bed... getting restless legs so then getting up and starting the cycle again... pretty dull. Temperature came down overnight, was so worried about it given how much I keep getting so hot. But the discharge letter said watch for feeling unwell, being hot and sweaty isn’t unwell so I stayed calm and did manage to sleep a bit and it was normal this morning. Still blowing my nose a bit but it’s not troubling me too much.

 

Tried to have a doze this afternoon but the legs are just too achy. Getting bored again now. Waiting for husband to make dinner but he was out at his American Football tournament all day and wants to sit down. Fair enough! I’m not hungry but eating would be a distraction.

 

Blue cheese is definitely off limits Sarah! It’s full of mould! But then again I’m on penicillin maybe I could try some... better not 😝

 

I was worried about mayonnaise at first but any stuff you buy in a jar is heat treated so that’s fine. Sainsbury’s has started teasing me about cheese I’ve had vouchers for blue cheese and Brie and I wonder if I can use them if the cheese has long enough dates... my chemo helpline card says you need to monitor things for 6 weeks after last chemo but I don’t know if there’s a safe date for reintroducing the banned foods?

 

I now have more dates so hoping that things start to slot into place...

 

Last T 3rd June

Mammogram and ultrasound 6th June

Breast clinic 11th June (wonder if this is surgeon?)

Oncologist 14th June

 

So the only thing I think I’m missing is CT scan to check the lung node. Unless you guys can tell me of any other appointments I should expect ahead of surgery?

 

I was first on the T but now I feel really far behind again as lots of talk about radiotherapy. I’ll get there with you all xx

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Re: February starters 2019 - yes, we rule!


@Marlyn wrote:

Sandra, I really do understand what V is going through...we all do.....my coping mechanism is a dark humour, I'd be constantly crying otherwise....is V down for the LGFG course? I think it would do her the world of good. When does her rads start? Little by little bit by bit things will get a little easier, after all she isn't long out of chemo, we think we're going to bounce back immediately, it's a shock when we don't! 

How does she react when you read out our posts? I hope she understands we're all in it together, she isn't alone...not for a moment.....give her a cwtch from me? I'd be more than happy to chat to her ....in her own time.....xxxxx


Marlyn, I try as much as possible to read everything and she knows you all, but she keeps saying that she doesn't want to know more because she cannot stand to know that you (and everyone here) is suffering.

It really hurts her!

It is more than what she has suffered (and still is) from chemo, it is the Damocles' sword because she believes that her lungs have cancer because she has a cough, that it will be back, that life is horrendous, etc.

It doesn't help her situation: she loved to be back on studies, but she cannot continue with her PhD because it wasn't her choice and it is horrendous, she doesn't have a job and she is really tied up.

My fault, really, I should be in a good position to take her somewhere else, to start in a new environment, to freed her from this dark feeling.

She is at home all day with her thoughts, it is not helpful at all.

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Re: February starters 2019 - yes, we rule!


@daisydi wrote:

No I have not gone vegan but I think mayo is on the naughty list due to raw eggs and I accidentally had some a while back and it made me feel sick (mind you I felt sick most of the time on FEC).  Im so confused with the cheeses too.  I know blue cheese is bad but I thought other soft cheeses were ok and then I read somewhere else to avoid feta, goat and sheeps cheese so I am completely lost.  Just sticking to cheddar and mozzarella for now.  Yes I am still on for Monday and I am so so wary.  They are extending my wbc injections and all my trouble started when I started doing them but maybe also coincided with stopping the steroids too.  Its funny how we all react so differently to things. 

 

Daisy, homemade mayo is not safe because we make it from raw eggs, but all the mayo we buy is safe because the process kills all the bacteria.

Soft cheeses and cheese from goat, sheep, etc, are extremely dangerous, not only because of bacteria and fungus spores, but also because they can carry brucelosis (even though we have security measures whilst preparing them, there is still the risk)

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Re: February starters 2019 - yes, we rule!

Sandra, I really do understand what V is going through...we all do.....my coping mechanism is a dark humour, I'd be constantly crying otherwise....is V down for the LGFG course? I think it would do her the world of good. When does her rads start? Little by little bit by bit things will get a little easier, after all she isn't long out of chemo, we think we're going to bounce back immediately, it's a shock when we don't! 

How does she react when you read out our posts? I hope she understands we're all in it together, she isn't alone...not for a moment.....give her a cwtch from me? I'd be more than happy to chat to her ....in her own time.....xxxxx

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Re: February starters 2019 - yes, we rule!


@Edinbird wrote:

I’m home! A week of antibiotics although no particular infection found as yet. Just feel tired now.

 

The weather is lovely that’s the annoying thing but I think I’m better in the cool whilst I’m still worrying about my temperature.

 

All I want is dates! And news and updates. I wish I knew what was happening to me when. I’m just stuck idling whilst I wait and I’m no good at that. I want a timetable and to be able to plan. Let’s all swap shall we?!

 

Probably fall asleep for a bit before dinner 😴


Oh honey, things have been really difficult for you!

I am so sorry!

Please try to rest, it is so important now!

HeartHeartHeartHeartHeartHeart

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Re: February starters 2019 - yes, we rule!

Good to hear from you Implausible.  I really worry when I dont see any posts. Ridiculous I know but I am a bit of a worrier of late! No I have not gone vegan but I think mayo is on the naughty list due to raw eggs and I accidentally had some a while back and it made me feel sick (mind you I felt sick most of the time on FEC).  Im so confused with the cheeses too.  I know blue cheese is bad but I thought other soft cheeses were ok and then I read somewhere else to avoid feta, goat and sheeps cheese so I am completely lost.  Just sticking to cheddar and mozzarella for now.  Yes I am still on for Monday and I am so so wary.  They are extending my wbc injections and all my trouble started when I started doing them but maybe also coincided with stopping the steroids too.  Its funny how we all react so differently to things.  I didnt get any terrible pain last time only headaches and my legs felt like lead for a couple of days and now I feel better than I ever did on FEC.  I completely forget to take my temp most of the time but when I do it is usally 36. something.  Take care of yourself.  Even when I was neutropenic last time my temp was normal and it only showed up in a blood test.  My radiotherapy starts in July too and finishes mid August.  Im already panicking about how I will keep my neck covered up and how hot I will be and I wont be able to swim in the sea to cool down.  I am also starting to worry about recurrence (I know I shouldnt but I keep reading stuff about having 4 positive nodes and there is such a jump from 3 that it really worries me).  So all in all having a bit of a meltdown at the moment but I blame it on the T!  Having an Indian takeaway tonight, Yummy!! 

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Re: February starters 2019 - yes, we rule!


@Rosina wrote:

Hi Daisydi,

dose #5 is Thursday 23rd of May ( assuming blood test is ok on Monday).

Apologies if I bored people to death re. My eating habits but the worry of developing lymphodema in my right arm  ( I am right handed) keeps me on the straight and narrow and again the biggest risk factor seems to be piling on the pounds. I don’t want to ever have to wear a compression sleeve!!!!

 

 


Rosina,you are never boring and we pick up excellent tips for you.

We are really worried about the dreadful lymphodema, V tries to be really careful but it is not easy when she is sleeping.

Her sleep disorders can cause havoc during the night and she can end up sleeping with her left arm (the one from the mastectomy) under her which is a no-no.

I keep waking up and checking on her!

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Re: February starters 2019 - yes, we rule!

Implausible, I thought you might be suffering, it really does suck big time.....I can't imagine how you will cope being measured and tattooed while on your first week of T.....it really is a faff about....I cancelled hospital appointments if they were in my first week of fec, there's no way I could manage anything much in that first week and you sound the same on T .....bear in mind they need you to keep very still during the proceedings, with lots of manhandling.....

 

now go and shower lol xxxxx

Member

Re: February starters 2019 - yes, we rule!

Hi girls, whenever I blink there is so much to read!!

I am trying to keep in check, it looks like a tv series, I keep asking to myself 'who said that?' 'what happened here?'

OK, V is still feeling too low, my major concern is her depression, she is a bit on the low side, keeps wanting to speak about what happened during her surgery, everything that went wrong, everything that can go wrong in the future, chemo or no chemo (no guaranties either way), she is extremely afraid.

I am trying to tell her that she has now to look forward, try to be positive, but she isn't able to do so.

She feels that her life ended (her words) and, as much as I can find the words and the arguments, it never worked with her and it never will.

Although we have several ways of seeking support, like Talking Changes, Disability Support or even this org by phone, she doesn't want to speak with anyone, the only person that she wanted to speak was someone from this forum (I was so surprised) but she disguises quite well, nobody can see her reality.

Hair related: I had a tip for a very good shampoo that many people are using after chemo, especially those who are or will be using Zolatex and Letrozole, because both cause thinning of the hair.

It is Grow Me, I have bought it for Veronica, as he lost all her hair right on the first cycle and we can see something coming out now.

I will keep you posted.

Now, can you help me dealing with her situation?

What do you do to surpass agony and negative thoughts? 

How can I help without being stupid?

Member

Re: February starters 2019 - yes, we rule!

Here is the link for the art therapy course:

 

https://www.baat.org/Courses-Conferences/338/South-West-Introduction-to-the-Profession-of-Art-Therap...

 

It does look good but it is a lot of money (£100) for something that I might not be able to progress anyway....

Member

Re: February starters 2019 - yes, we rule!

Hi all

 

Apologies I've been quiet.  I have been pretty much dead to the world today and yesterday, either in bed or conked out on the sofa.  Must be starting to hum by now as I have been lying around in the same jamas since Thursday!

 

I've just taken a codeine tablet as everything aches like hell, and will attempt a shower and change of clothes once that kicks in.  Don't want the neighbours complaining Smiley Happy

 

This part of the T cycle really is the absolute pits.  I can't concentrate on anything for long so can't really enjoy TV or books or podcasts.... just find myself zoning out and realising I have no idea what the character just said etc.

 

I tried to stack the dishwasher and got totally out of breath in minutes.  It really does suck!

 

All my pals are living it large at a big annual event in Bristol today that usually I would go to.  So I am torturing myself a bit looking at all their fun photos :/ which is silly really.

 

Just need to wait this out.  And hope that I dont end up in hospital again (I'm panicking about that possibility.... temp so far today has been borderline, around 37.4 ....)

 

Anyway, enough of my whinging!!

 

Marlyn I didn't realise you had to lie there topless like a reclining page 3 model for rads!  Although I guess it makes sense really, I guess they aren't going to laser through your top....  I hope it wasn't too embarrassing lying there ages all exposed while they faffed about.   Very annoying though that after all that they couldn't go ahead.  Hope they get their act together better next time.

 

I got a call from the radiotherapy place in Oxford yesterday.  Apparently they want me to go in the first week of June for a "positional not diagnostic" CT scan to get me set up for rads starting in July.
I pointed out that I will most likely be feeling like utter turd that week as once again it will be the first week of my T cycle and she was "oh don't worry we will send a car to collect you". Last thing I want is to have to have a CT scan miles away on a day when I am feeling horrendous, lift or no lift. 

I will wait for the actual date and time to come through and argue the toss if necessary.

 

Love the t shirt by the way!  And as for "dark humour", I think it is near enough essential to get us through difficult times.  You have to laugh or else you cry, as the old saying goes.  I've definitely been making some fairly insensitive jokes at my own expense since this whole cancer thing reared its head....

 

Seaside.... I hope you had fun at your choir meet.  And enjoyed the pizza.   Mmmmmmmmmmm piiiiiizzaaaaaa Smiley Happy 

 

Which reminds me, Rosina, honestly I wasn't being sarcastic when I said that your healthy eating and walking etc is inspirational.  I really meant it!!!  I wish I could stomach decent food at the moment, I really do.  But carbs and cheese seem to be the only things hitting the spot (and, thankfully, fruit still works).  I can't wait until I start to feel a bit more normal and can get back to a much healthier regime and lose some of this blubber....

 

Edinbird I'm glad you weren't stuck in the hospital for too long.  Hopefully you have had a nice restful recovery day at home....

 

Trixielady, here's to more good days than rotten ones!

 

Susie you and I are so different, I desperately want to know *exactly* when everything else is going to happen, dates and times and so on, so I can plan around them..... but my docs are so vague!!!!   I guess we all deal with these things in different ways.   I hope that they can leave you in the dark a little longer as per your preferences.....

 

I'm also glad that those of you with anxiety about all this (and who wouldn't???  I sometimes worry that I'm not worrying enough!  Given that it clearly is something worth worrying about! Maybe I'm just in denial....) are getting some help with medication to take the edge off the worry. 

 

Daisydi have you gone vegan and I missed it?  Or is "normal" mayo on our no-no food list?  I had some blue cheese dressing the other day and immediately wondered if I was supposed to be avoiding that...probably am....oops!   Having been a veggie since I was 15 I'm always incredibly blasė about food poisoning and stuff like that, considering it more of a worry for the meat and shellfish eating types.....  I really should pay more attention.  For example I didn't realise until the other day when Edinbird mentioned it that we aren't supposed to eat brie or camembert while undergoing chemo.....

 

MBJ I hope you have fun at the birthday do tonight Smiley Happy

 

Rosina.... your art therapy thing.... is that 1 to 1 or more of a group thing?  I think I mentioned before that I am really interested in the field of art therapy and would love to maybe volunteer as some kind of teaching assistant one day a week to help a qualified therapist as I wouldn't be looking to totally change career at this point in my life....  but I would love to find a way to "do my bit" once I'm through treatment.  I have found a one day "intro to art therapy" course in Southampton in September that I might attend....  but it seems more geared to working with troubled children than adults.  And more in a 1 to 1 capacity.   Nobody in Swindon seems to offer it at all so there is no-one for me to offer my volunteer hours to..... 

I will have to keep looking into it....

 

It actually sounds like the local bird population have been doing some "art therapy" on your car! Smiley Very Happy

 

Deano I'm glad you got a little reduction in your dose and that all went well yesterday.  Here is hoping you have an easier ride this cycle.

 

Daisy, hope it goes easier for you too this time.... are you still on for Monday?

 

Phew that has taken me hours to type!!!! 

Take care everyone xx

Member

Re: February starters 2019 - yes, we rule!

Hello all,

 I am in line for the Tesco car wash and it has started to rain 🤪

the car was covered in bird poop and it was the last chore out of many completed today.

Yes to seeing the silly side of things 👍👍👍👍

Mum is having a mani/pedi ( dropped her off prior to coming here) she has got an umbrella and sandals to walk back in. 

I think we are all certifiable 🤪

The rain is coming down heavy so it’s going to be a double cleanse!!!