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May 2017 chemo starters

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Re: May 2017 chemo starters

This is my current view. Much better on a sunny 🌞 day as I like to see the planes fly over as we are in the air corridor. I annoy my family by saying which plane it is and where its going, thanks to Flightradar24 app!

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Re: May 2017 chemo starters

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Re: May 2017 chemo starters

Treehouse you are so funny, your humour is medicine to me as you make me laugh, sorry I am not as funny back! Can just image a pile of blacmange   in a dressing gown.

 

You need one of those bird feeders on the window so at least you can stare at them or at least pretend to stare at them....

 

Just take little steps each day. After my Mx my daily challenge was to get out of my PJs by mid day. That was all I had to do each day then every couple of days bring the time a bit earlier. Now I can manage 6.30am (weekdays only!). Remember I was told on the Moving forward class about the Spoon theory, you have 12 spoons of energy, how do you use them? Take a look at www.butyoudontlooksick.com  and then find the spoon theory. Looking back at some of the info I got from the course, alot of your symptoms as similar to fatigue.

 

My desk at home overlooks the garden, not much to see but rooftops but great for day dreaming when I am supposed to be storting the post, bills and doing husbands books!

 

Hx

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Re: May 2017 chemo starters

I think people expect too much of us too soon, and that includes us-- we expect to be straight back to where we were. That's not how it is. Major surgery takes much longer to recover fully than you think. Add in chemo and maybe rads, and the effect is multiplied (not just added). It's amazing, treehouse, that you're alive and have the energy for anything at all just yet. And MJK, teaching? Respect!
I'm so impressed with everyone who's gone back to work, I only work part time and from home and I've halved the amount this year, and I'm already behind on my targets. Not that I'm worried, I know I can catch up, but everything seems to take at least twice as long as it used to. As if I've aged 20 years.
Old crocks club, anyone?
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Re: May 2017 chemo starters

So, I'm now in the diddly squats club AND the pillow dribbling club. It's good to have friends like you guys!🀣
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Oh and I dribble, on my pillow at least. πŸ˜ͺ
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I'm convinced that blancmange status is the body's self defence mechanism to slow you down to the pace you need to go at while you recover.
I am faster than I was in October but the pace increases very gradually and I'm going with it. X
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Re: May 2017 chemo starters

Thanks MJK. Well done teaching that’s a huge achievement.

Brain 🧠 fog πŸ’­is definitely how I feel. I can just sit and stare out of a window for hours and have absolutely no idea πŸ’‘ what I am thinking about.
I really am useless.
I was an intelligent active strong capable woman. Now I am a blancmange in a dressing gown.
At least I don’t dribble πŸ‘πŸ˜‚
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Re: May 2017 chemo starters

Treehouse, I read what you wrote and was nodding my head in agreement.
None of us caused our cancer and all the aromatherapy oils on the planet wouldn't have prevented it or, in your case🏑, a faulty heart valve as well. Complimentary medicine, positive thinking, diet and exercise have their place but they're not the alternative people like to think they are.
While it's all going on we're in survival mode. But the physical and emotional side effects take much longer than people like to think. I reached the finish line in October and still get fatigue, brain fog and aches and feel low. This is from someone who had a relatively 'easy' time of it.
So you can tell those supporting you that it takes months not days to recover from major surgery /chemotherapy /radiotherapy /hormone treatment let alone all combined. If you can live with that then they'll have to too.
I did my first 2 hours of teaching this week which was a milestone but very tiring.
I've also started a mindfulness for health course (free through a local cancer charity). I'll let you know how I get on. X
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Re: May 2017 chemo starters

Image result for I will never be normal again after cancer

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Re: May 2017 chemo starters

Treehouse, we all understand exactly how you feel. Just because treatment is over there isnt a specific time when we are suddenly over it and back to normal. Maybe better physically but not mentally. We will never be normal again. Until people accept this, they can't possibly understand. Only those who have been through it can really know how you feel. Having said that, you also had the heart surgery on top. That in itself is major both mentally and physically. Its going to take time for you to process the last year. 

 

Its ok to feel depressed and to acknowledge that you are is first step to getting better. Is there anyway you can speak to your GP to find help, even if it just someone to chat to, to let it all out?

 

Andi, good to hear you are ok, your children must be relieved. Lots of rest and gentle hug.

 

Had a busy week, 2 x work days and husband was 50 yesterday. He has been in a grump for a week about it...

 

Love and hugs to all!

 

❀Heather

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Re: May 2017 chemo starters

Good to let it out f..... g hell treehouse after tge last year its not surprising you are totally normal feeling like this christ i feel like tgst too sometimes and i haven't had an extra major health issue to fight xxx much love to you fellow warrior πŸ’–
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Big love to you Treehouse.  If there was anything any of us could do, we would do it but your battle comes from within.  Go easy on yourself and don't have any expectations about how you should behave. You have had one tough journey. Xxx

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Re: May 2017 chemo starters

Wow sorry all that really did sound like the rant of a woman on the edge. I feel a lot better for that.
Sorry all. X
It must be so difficult for loved ones to be supportive when I don’t know what I want or need.
Must try to be patient.
Stop being a bitch.

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Re: May 2017 chemo starters

Treehouse, nothing you did has caused any of this and aromatherapy and positive thoughts don't cure cancer or fix heart valves. They are just comfort treatments to help you relax.  It sounds like your Mum doesn't like accepting what you are going through. 

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Re: May 2017 chemo starters

It also implies it’s my own fault for being ill.
If only I’d sniffed mint more often .
Or said magic words before bed.
Or thought more positive thoughts.


Yes ladies we all got cancer because we had negative thoughts πŸ’­
REALLY?!?!?!!

I am not giving up !
I am not being negative.
I know my risks and I will do everything in my power to give me the best chance of getting through this but don’t tell me ; I can fix this with a few drops of oil on my feet and a constantly thinking of unicorns πŸ¦„ and rainbows 🌈.
It’s not my f**ing fault.
So people please don’t say anything that suggests I somehow could have avoided this.

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Re: May 2017 chemo starters

I do so get that, Treehouse. People mean well. They do insist on recommending a diet of gung-ho berries and jolly-juice, and then you'll be as fit as a flea.  Which makes me wonder why the NHS bothers spending enormous sums of money on high-tech treatments and complex drugs.

But what do I know? I've never even seen a Guatemalan worry doll, for all I know it might cost ten times more than six rounds of chemo and a couple of years' worth of herceptin, with a couple of complex surgical procedures thrown in.

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Re: May 2017 chemo starters

Thanks for support as always ladies. I couldn’t open link tatyana my phone not playing.

Sorry to rant but my mother completely refuses to accept when I am not well. I remember telling her I had found a lump. She insisted on poking and prodding and said it was not like hers so couldn’t be cancer and just stop worrying.
Clearly I ignored her.
She is desperate for me to be back to normal I get it. SO DO I!!!!!
I am not looking for problems I am not just being negative. The fact that I couldn’t solve a hole in a heart valve with aromatherapy and positive thinking is doing my head in.
I know every one means well but it is getting to the point where I don’t talk to people anymore because I can’t hear nonsense 🀯
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Re: May 2017 chemo starters

Treehouse, I was reading an interesting article the other day about depression, here's the link if you're interested, https://www.theguardian.com/society/2018/jan/07/is-everything-you-think-you-know-about-depression-wr... One of his main points is that actually, depression isn't necessarily a "disease," in some circumstances it is a perfectly rational response to a situation, eg bereavement, being unhappy at work, etc. He thinks it's a mistake to treat it as simply a chemical imbalance in the brain, instead we should be looking at the cause.

So in your case, I'd say it is absolutely no wonder that you are feeling down. You haven't "got" depression, my dear, You've had a terrible, tiring, difficult, frightening, painful, horrendous, worrying experience, and it's not over yet, and OF COURSE you're not exactly the third Chuckle Brother just now! I think you're amazing to have kept so much of your sense of humour through all this.

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Re: May 2017 chemo starters

Thanks ladies 😘 The bell is rung πŸ”” the triathlon is complete πŸ… the weight on my shoulders is gone πŸ‹πŸ½ what a relief.

Andi, lovely to hear from you and glad all is going well for you post surgery and great that you are pleased with the results. Take it easy. Sending gentle hugs. 

Treehouse, is there someone at the hospital you can talk to. You must feel quite confused about where you belong now between the oncology/breast unit and cardio if you don't feel well. Guatemalan worry dolls only work if you believe they do, placebo effect!  πŸ˜œ

Tatyana, glad you have plans and ct scans (omg, I'm turning into a rapper!) Enjoy.

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CK, I've put a few thoughts on the July thread for you!

 

 

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Re: May 2017 chemo starters

Mai well done lady ringing that bell its been a long time coming πŸ””πŸ””πŸ””πŸ””πŸ””, you really said in your post how I feel x I sobbed on Tuesday evening in bath, and have shed a few tears since yes it was a big day for me having last treatment and my kids and family shed some too, but its hard putting into words how all of this affects you yes we are survivors Mai we survived gruelling treatments and surgery and we have got through something that a year ago was something we could never comprehend dealing with i know one thing i am not the same person I was a year ago
Tatanya really pleased for you with the clear margins result Andi so pleased you are on other side of the op rest up now lovely Treehouse well what can I say apart from πŸ’ͺπŸ’ͺπŸ’ͺ you do things at your own pace only fo things when YOU are ready!!
Rosie πŸ‘ for the swimming 😊 Misyangel and Jay thanks for the well wishes
Ladies... we are πŸ’ͺnoone can tell us we're wrong πŸ’–πŸ’–πŸ’–πŸ’–πŸ’–
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Re: May 2017 chemo starters

So ck I had bilateral mastectomy.

My mother has just declared that I am depressed. !!!! Ffs
I’m ill not depressed. These are physical symptoms not in my head.
People try to help but Guatemalan worry dolls are not going to help
Aaugh!!!!
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Re: May 2017 chemo starters

 
Have any of you lovely ladies had surgery to take out lymph nodes and clear margins after chemo but not with masectomy as I have already had a lumpectomy before chemo?
I have just completed chemo treatment and have my op on 22nd January and was wondering if you have any tips to make it as easy and comfortable as possible. TIA.xx

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Re: May 2017 chemo starters

Ooh very exciting tatyana enjoy 😊
And good news about ct etc also xπŸ‘
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Just re-read my own last post and had a fit of giggles. It seems the highlight of my day, and probably my week, is to only have to wait a week instead of three weeks to find out what is going on in my innards!!
Well, to heck with that. The real highlight is that hubby has just bought us tickets for Wicked -- tomorrow! No waiting at all!
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Re: May 2017 chemo starters

I got lucky for once, the CT scan people phoned me this morning with a cancellation so I can have the scan on Monday, then see the oncologist on Wednesday, his amazing secretary is going to chase them up to make sure the radiology report comes through in time. So, a couple of weeks less waiting than I expected!😊
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Re: May 2017 chemo starters

Andi, so glad you're out the other side and that you are pleased with your new look, that's good to hear! Be gentle with yourself, it takes quite a while to get your strength back after surgery, so get plenty of rest and enjoy being in a new place in your life!

Treehouse, big hugs, hope the new thermometer is kind to you. You've been through more than most of us, no wonder you are feeling insecure. You'll get there. Wherever "there" is. Which is something that I feel we'll all have to wait to find out.
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Re: May 2017 chemo starters

Andi so glad you are back and feeling ok and mobile. Well done πŸ‘ and be patient.
Mai you did it.
Take a moment and then go and live without constant hospital visits.
I am feeling a bit wobbly physically. I get dizzy and the dreaded migraines are back. I sent mum out to buy me a new thermometer today as mine said 34.2 . Even after I changed the battery twice.
I am definitely in the cautious paranoid stage waiting for infection to take hold
again.
I’m not feeling great and I’m terrified to tell my family.
β˜ΉοΈπŸ›πŸ€―πŸ€§πŸ€’
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Re: May 2017 chemo starters

  Mai - just read your post πŸ’• Oh petal it’s not easy is it.  According to people we should be jumping for joy at the last chemo, but the reality is very different, we quietly think, ok that’s done, now what?  Whilst it’s a relief it’s also a kind of curse.  I know I couldn’t have gone through this without everyone on here and the support.  I guess we are a group of women now who understand one another and will be here for one another come what may πŸŒˆβ˜€οΈ

You have achieved a lot, allow yourself a moment to acknowledge it and then busy yourself πŸ˜‰

sending you lots of hugs

xxxxxxxx

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Re: May 2017 chemo starters

Hello ladies, I’m finally back.

 

surgery took longer than expected as my vessels decided to hide, so 2 hours extra in theatre.  Felt extremely groggy from anaesthetic given by IV and overnight IV and bear hugger blanket.  Not for the faint hearted I can assure you.  My temperature was mid to high 38 degrees under what felt like a grill for 24hours but they were happy. All of a sudden today I’m pretty mobile, walking about with my bag of drains, and already had one removed.  Breast is looking so good! I’m blown away with the results.  Should hopefully be going home on Saturday.  Perfected the roll in and out of bed.  Got the stairs with Physio tomorrow.

 

Will read all your posts tonight and catch up.  Mishy I think you finished today?! 🀯 Well done lady! πŸ›ŽπŸ›ŽπŸ›Ž

 

so so happy to be feeling vaguely normal again 

 

xxx

 

 

 

 

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Re: May 2017 chemo starters

Mai that post gave me a lump in my throat you ring that bell load and proud πŸ””πŸ””πŸ””πŸ’«πŸŒˆ xx

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Well done mai. You have had a long and sometimes difficult journey with some giggles along the way but you made it. Ding ding xxx
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It's so true Mai - we are, we are indeed Survivors - we must keep telling ourselves this too and others!

 

Enjoy the feelings today - very mixed emotions but you've reached the end of "active" treatment and that's truly something to celebrate.

 

What a lovely postman you have - I must admit, mine's seen me; bald, long wig, short wig, sunhat, nightcap, little hair, more hair, and now grey curling hair and he never looks at me any differently!  I just smile cos when he sees me out - I've always got perfectly styled wig on and look totally different and he just says polietly "good morning/afternoon".

 

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Re: May 2017 chemo starters

Yes Mai you are a survivor! Say it loud and say it proud! πŸ””πŸ””πŸ””πŸ””πŸ””
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Re: May 2017 chemo starters

Thanks Ladies, I'm feeling quite overwhelmed and tearful at this milestone this morning.  I'm feeling good but the tears just keep rolling out.  The postman delivered a couple of parcels this morning and said "I'm liking the hair", well that was enough to start me crying when I closed the door. He's seen me in my dressing gown with the hood up when I had no hair or eyebrows and in my wig and as much as you think you are hiding it well, people notice the hell behind your smile.  I will be ringing that bell like a cancer survivor because the physiotherapist told me yesterday that's what I am and I will enjoy that title and try and move forward and forget the negative thoughts.  I think once you've had cancer it's hard to celebrate and feel like a survivor because you're scared of it coming back but we should celebrate because we have survived so much.  It's been a long road and I am so grateful to have your support and friendships on this journey. Thank you Ladies. Xxx

 

image.jpeg

 

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Re: May 2017 chemo starters

Good luck Mai for last rads today. Ring that bell loud and clear to signal the completion of the triathlon. How lovely to have your Mum with you.

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Well done Rosie on your first swim - I wish I'd learnt to swim - I believe it's one of the best exercises - especially for gentle return to fitness.

None of us are the woman we were, Rosie, but I believe we're stronger and braver now than we could ever have imagined.

Good news on your work front too, they seem very compassionate, which really helps - the school where I work have been absolutely fantastic. Hopefully all goes well on 5th February..... eeks not too long away - make the most of these next few weeks. x
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Good luck Mai for today's final session - it's such an amazing feeling - enjoy! 

 

The end of one incredible journey and the beginning of a new one...... xx

 

 

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Re: May 2017 chemo starters

Penultimate radiotherapy done today. Final no.15 tomorrow and my Mum is coming with me to witness the grand finale bell ringing.  So today I'm observing the group headlines are: clear margins, ranting, swimming and dentist! πŸ˜‚

Tatyana, fantastic news, clear margins rocks! Xx

Treehouse, don't feel bad for experiencing negative emotions and don't feel you have to manage anyone else's emotions. Look after yourself and go at your own pace. Everyone will understand and if they don't well that's their problem, not yours. You have to be harsh for your own wellbeing right now. Xx

Jay, glad the dentist went well, at least you've got good teeth lol, keep smiling!! πŸ˜† Xx

Rosie, well done on swimming, you're doing really well so be your own best friend and congratulate yourself.  Xx

I think people don't understand what it feels like to have aches and pains that are SEs from harsh treatments which you really didn't want but had to have to survive but before all of this you felt young for your age and full of energy and that's been taken away from you and now you just feel like an aging whinger but feel a bit angry that it wasn't caused by aging, it was caused by treatments.  Grrrrr!

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Re: May 2017 chemo starters

Rosie, congrats on first swim! Looking forward to mine soon, but I'm sure it will be quite tough, my arm feels quite weak and stiff. No you're not the woman you were -- you're somebody much stronger, just a little out of practice!

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Re: May 2017 chemo starters

Excellent news Tatyana, hooray for clear margins

 

That reminds me Jay, I must ring the dentist tomorrow.

 

Finally rang my boss to arrange phased return to work. We’ve decided on 5th Feb as first day back, which means I’m still under the 6 months full pay. So glad I managed to work from home during chemo! He said phased return can last up to a month so will be full time by March. It will be a mixture of shorter days, shorter week and some office/ some working from home. I also now have 60 days holiday as carried last years over so should get plenty of time off this yearπŸ€—

 

I did my first swim at the gym today, enjoyed it but it was hard work. I’m not the woman I was πŸ˜‚

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Re: May 2017 chemo starters

Tatyana 😘😘very pleased to hear you got clear margins wonderful news. πŸ’•πŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
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Good news Tatyana that your surgery showed clear margins. Sorry to hear you've got to wait for appointments. x

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Yay.... Dentist - ticked! 

 

All is, in the words of the dentist.... "excellent" - thank goodness another good news moment.  She gave them a good clean and my goodness they feel lovely!  

 

It was funny though - my dentist changed at the beginning of treatment and although she's never looked at my teeth, I've met her a couple of times during treatment via my Son who's had a few problems in the past year.  So today when she came to collect me from the waiting room - she started announcing herself etc (as obviously she'd been reading my notes and realised I hadn't been in since March 2017) - however, when we got to the treatment room - and I explained the situation - she looked at me and said - "I'm so sorry, I thought I recognised you - it all now makes sense"!  

 

She said I was due x-rays but when I explained about the rads only finishing on 19/12 - she said - "Oh no, we can leave them for a year or so - you really don't need more rads in your body...!"  Lovely girl!  

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Just seen oncologist, have to have a CT scan, after which we'll decide on rads to internal mammary nodes, which is difficult given my history but can be done. So, back to waiting for appointments! Still, the path results from surgery showed clear margins,so that's good.
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With you totally on that MJK - I know exactly what you're saying.  You almost feel like adding, "but mine is due to cancer treatment...." - but we don't do we.  x

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One of the things that frustrates me is that if you say that you have a problem with memory /achy bones /fatigue / hot flushes / whatever is the 'I get that too' response from people as though the lasting side effects of treatment are normal and everyone gets them. Sorry but NO it's not the same or NORMAL. Grump over.
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Re: May 2017 chemo starters

Oh treehouse, I know exactly what you mean and I'm sure we all do. I know I haven't had anywhere near as tough a ride as you, but I so understand where you're coming from about the constant kind questions and the need to expend your precious energy reassuring other people.

My ageing mum who has memory issues and doesn't know what century we're living in will ask me how I am ten times in a five minute phone conversation and I totally don't know what to say to reassure her, it doesn't stick anyway and all she really wants is for me to say the cancer has gone forever and I'll live to be 95 like her. Sorry but I'm not going to lie. I'll tell her an edited version of the truth and minimize everything. But in the end I just end up saying I'm fine. She can't help it, poor dear!

So yes, I think often we do just give in and say we're fine. As long as you have one good 'un, like your husband (and mine). ❀️❀️
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Re: May 2017 chemo starters

Treehouse - maybe a quick reply to your messages would be something like ; I've finished active treatment for bc and now dealing with the side effects, In additon, I am making a slow recovery from open heart surgery - I think I can leave the "How are you feeling question" right there!!  Suffice to say, I'm just grateful for each and every day".

 

Don't let others put pressure on you to be "well and normal" and equally don't put that pressure on yourself!  

 

Hey, that previous sentence has made me chuckle!  For it's so easy to pass that above advice on to others - I just wish I could listen to it and act on it myself!!!!

 

I guess the biggest piece of advice is just to concentrate on yourself and get yourself better - taking all offers of help and assistance from whoever offers it.

 

You're one strong lady Treehouse and you will get there - like the rest of us, we need to be patient and give it time.... xxx