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October 2017 Chemo Starters

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Re: October 2017 Chemo Starters

Ali be careful with the hair colour a lady i know who had chemo had her hair dyed blonde at a salon and it all snapped shes never had this happen before the girl said colour must have been too strong my hairdresser said she wouldn't colour mine!!! However iys now officially long enough for a proper hairstyle 👍😃 just a little advice to make sure that the colour isn't too harsh x
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Re: October 2017 Chemo Starters

Hi Buddyfan - ooh enjoy Cornwall!!

I have a tender scalp too and its very itchy! Is yours itchy too? My hair is thick and i want to colour it but i am scared of reacting due to the itchiness. My hairdresser says there is no redness.

Hope yours gets better and you have a fab holiday xx
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Re: October 2017 Chemo Starters

PS, I can't join you on fb as my OH uses my fb profile. Pretty much all my posts are from him.
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Re: October 2017 Chemo Starters

Hi Ladies, have a great time this weekend.

Our music fest was a couple of weekends ago and was a huge success. Everyone had a very chilled out time. Best of all, a few rallied round and cleaned the house. Windows done, shower screen Viakalled, floor scrubbed etc etc. My MIL, did the beds and kept coming round to check I wasn’t doing too much and told the others to make sure I rested! I’m getting very good at delegating.

Packing, very slowly for Cornwall now. It’s all the sundry bits and bobs that take the time to find. I’m not looking forward to the journey from Norfolk, it was substantially easier from Herts.

Do any of you have a tender scalp at times. Pretty sure it’s not sunburnt as I’m very careful and my hair is really thick chemo curls now. Everyone says I should keep it short as it suits me.
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Hi jencat 😘😘really pleased all going well with recovery 👍👍you’ve a busy week next week enjoy yourself 😁😁mishy, good to see your dr etc are following up with checks on you, that’s peace of mind for you instead of having to fight for things like you did with the brca test 😘😘buddyfan, hope you are ok lovely, has your music festival taken place? I hope you had a beautiful day and no awkwardness from anyone darling 🤞🤞😘😘💕💕✨✨shi xx
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Re: October 2017 Chemo Starters

Ladies enjoy your meet up this weekend i bet you have a lovely tiime fill us in afterwards!!!
Jencat i hope everything is OK im surr it will be but it doesn't stop us worrying doed it i have an mri scan of full spine yesterday following a gp visit last Thursday!!!! I am sut it id just going to show some old spine stuff which maybe getting worse but because of symptoms and history of bc i was a better get it checked situation!!!!!!
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Re: October 2017 Chemo Starters

Thank you for taking the time to reply to me Jill. Hopefully my dentist is right and it's nothing to worry about, but the hospital referral has made me feel anxious x

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Re: October 2017 Chemo Starters

Aah, thank you all for thinking of me Smiley Happy YD and I have been away visiting friends for a few days and had a lovely time.

Think I said that the dentist referred me to the hospital last week because of the lump on my gum? Referred me via the cancer route, which panicked me a bit, especially as I had a phone call from the hospital the next day to sort out an appointment! Receptionist said it was normal to be this quick as have to be seen within 2wks, so going this Thursday. Still worrying about it, but the antibiotics have definitely shrunk it and my dentist thought so too when I saw him again yesterday and said again that he doesn't think it's cancerous. Saw my chemo onc as well yesterday (what a day!) and she thinks it looks like a blood blister, which is what I wondered too. Hoping it's not the Zoldronic Acid that is part of the problem as onc said it would have to be stopped for a while if that's the case. Dentist thinks it's the chemo that has caused the problem as the lump is over a tooth that has had root canal work.

Chemo Onc checked both breasts, under arms and collar bone yesterday and said she couldn't feel any lumps and I'm healing from radiotherapy nicely. Smiley Happy And you'll be pleased to know re Saturday, I can wear deodrant on my left side again! Smiley Happy (Gorgeous Greek onc had said no!)

Not having the scan to check for the little bit of cancer in the internal mammory chain that was left from chemo (a few mm) until Dec as both she and Radiotherapy Onc have said it's too soon and could give a false reading, but Chemo Onc said she'd be very surprised if there was anything there, especially as it responded well to chemo. and I was also told that at radiotherapy. Would have liked the scan earlier though really as I don't know definitely that I'm clear.

So bit of a mixed few days-Thurs, hospital Smiley Sad, Friday, a family wedding (and a year since my op!) Smiley Happy Saturday us! x Smiley Happy Sunday, family Smiley Happy Tuesday, my first mammogram since bc Smiley Sad Next Thursday, my birthday! (hopefully a better one than last year as it was a few days after my op+it poured with rain and it never rains on my birthday!) Smiley Happy xx

4 more days! Smiley Happy xx

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Re: October 2017 Chemo Starters

Ali, I'm not sure where the October one is yet. I'm wondering if we should suggest somewhere else. I think it's probably a case of seeing whose going and deciding from there. I'm sure it'll get talked about on Saturday!

Shi, I've already said that I doubt I'll sleep for 2 nights. I'll be shattered Monday, better not plan too many difficult meetings 😊💃🕺🏻💃🕺🏻👯👯‍♂️👯👯‍♂️
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Ali😘😘I’ve text you darling 👍👍 meesh 😂🤣😂🤣😂🤣 not been this hyper since I went on first school trip abroad 😁😁😁 heads up we ran round the boat all night and did not sleep in our cabins 🤪🤪🤪🤪💕💕✨✨✨shi xx
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Re: October 2017 Chemo Starters

Where and when is the October meet Meesh? Pm'd you Shi xx
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Re: October 2017 Chemo Starters

Hello ladies, I have a feeling we're all going to be bouncing off the walls by the end if the week. I'm so excited about the meet up. Ali, I hope you can make the meet up in October! 😊

Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Ali pm me your email address or mobile number and we’ll get you a photo over. Love to you and 🍒 b 💕💕✨✨shi xx
Member

Re: October 2017 Chemo Starters

Post photos of your meet up ladies and have a great time xxx
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻😁😁😁😁Sue, it’s going to be amazing 😘😘and don’t forget the Oct meet up too for ladies unable to make this one, that’ll be amazing too 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻Has anyone packed my tranquillisers and straight jacket 🤪🤪🤪🤪🤪💕💕💕✨✨✨shi xx
Member

Re: October 2017 Chemo Starters

This time next week ladies I am soooooo excited I can’t even explain how much I am looking forward to meeting you all

Love and hugs xxx
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Chaffinch ❤️❤️❤️ Big love my darling, hitting the 1st year anniversary brings it all back doesn’t it. Focus and remember we’ve done the journey and it’s all about living and 💃🏻💃🏻🕺🕺💃🏻💃🏻And 😁😁😁😁and 🤪🤪🤪🤪and most important that we all have each other always and how blessed we’ve been to have had a beautiful, loving thread that we have ❤️❤️ Another big thanks to the may17 ladies, mishy18, tatyana, ali49 and our wonderful ladybowler and all the other amazing kind ladies who with all their love and support on our journey got us safely through 💕💕✨✨✨shi xx
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Re: October 2017 Chemo Starters

Sorry to hear about your employment issues, Jencat and Mishy. I hope that you get an outcome that suits you in time x
Today is a year since I was told that it was highly likely that I had breast cancer, final diagnosis came on 9th of August with HER2 diagnosis 2 weeks after surgery. Next Wednesday with be 9th Herceptin which will be half way through. I feel very grateful for our NHS. Stay strong girls, can’t wait for our meet up on 4th. I’m not here very often now but this supportive community has been such a lifeline ❤️Xx
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Re: October 2017 Chemo Starters

Linda, hello, I’ve not been in here for a while but I found Manuka honey was my best friend. I took a teaspoonful morning and night through the whole of the rest of chemo after level of neutrophils being 1 after first cycle, I used the Tiptree 15+. Good luck with your treatment. It does end eventually stay strong x
Shi Community Champion
Community Champion

Re: October 2017 Chemo Starters

Jencat 😘😘hope you are ok ❤️❤️❤️ Wonderful posts from the beautiful Kate nd wise jill1998 as always thank you 😘😘💕💕✨✨shi xx
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Re: October 2017 Chemo Starters

Thanks Meesh. Been having fruit juice to boost immunity. Should of had mackerel but had chicken tonight instead. Manuka honey has not been doing its job. x
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Re: October 2017 Chemo Starters

Hi Linda, I did fecx6 so no docetaxel for me. There doesn't seem to be any rhyme or reason to the neutrophil count, mine were always ok but I was told they can change from day to day. Hopefully they'll be ok for you tomorrow 🤞🏻I cold capped through all my treatments even though my hair was quite thin on top and I had really bad cradle cap by my last one. I was worried that they may tell me I couldn't continue but was told they never stop anyone who wants to continue with the cold cap and some people had continued despite hardly having any hair left. 

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Re: October 2017 Chemo Starters

Blood test today showed neutrophils at 0.88 and need to be 1 so am having another tomorrow to see if they are high enough. Cant understand it as last 2 times they bounced back fast although maybe as this is my first Docataxel? Anyone got any thoughts or assistance re this please? Am having cold csp on the up side though. Not going yo work before chemo tomorrow and resting now and drinking water lots.x
Community Champion

Re: October 2017 Chemo Starters

No it doesn't and you will find that pretty much any new symptom will be investagted with the words cancer ? attached to it -hard but most of the time it's not the explanation st all .
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Re: October 2017 Chemo Starters

Thank you Jil for taking the time to reply. As you say it's unlikely to be anything, but I suppose they have to cover their backs as well. My dentist said to me that he knew it would make me feel anxious once he'd said it, but he was 99% certain it's nothing, but this would also mean I could be seen quicker because he wasn't sure what was the best treatment route, so he needed a 2nd opinion. I suppose the feeling of anxiety doesn't easily go away once you've had a cancer diagnosis  x

Community Champion

Re: October 2017 Chemo Starters

Hello Jencat - it's impossible not to let your mind go to the worst place isn't it - but like you say 99% is pretty good odds Unfortunately once you have had cancer health professional always play safe and refer you for further investigation if any doubt whatsoever - very anxiety provoking .
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Re: October 2017 Chemo Starters

Feeling a bit anxious-had a swelling on my gum which came up after chemo. Went to the dentist, who x-rayed it, said it was an infection and gave me a course of antibiotics, but said it would have to be removed-said chemo had found a weak spot cause I'd had root canal treatment there before, which needed re-doing or other options. Lump went down with antibiotics, but yesterday I noticed it had got bigger again and managed to see my dentist this afternoon. Put me on antibiotics again, but referring me to the hospital via the cancer route! He said he's 99% sure it's nothing and a cancer lump wouldn't reduce as mine did, but this way will get me seen sooner and he'd like a 2nd opinion on the best treatment as there are three options.

I know there's only a 1% chance it's anything serious, but I keeping homing in on that, which is silly really cause if I was told I'd got a 99% chance my bc wouldn't return I'd be jumping up and down with relief! xx

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Re: October 2017 Chemo Starters

Linda, I had my chemo at Medway hospital (Kent) Luckily my daughter was with me when I was told I couldn't continue with the cold cap as I was able to get her opinion as well-she agreed that my hair looked too thin on top. I did lose quite a lot of hair when I was using the cold cap, but I managed to disguise it by wearing a hat and as I still had quite a bit at the front and sides, it didn't look noticable, especially as it was Winter.

I'm not sure that I lost all my hair completely once I'd stopped the cold cap, although my daughter said that I did! I used the cap during FEC and stopped using it during T, but my hair seemed to start growing back fairly quickly whilst I was still having chemo.

I haven't used the Lush bar that helps growth, I didn't seem to need to. I've got quite a bit on top now and my hair is thick. (I finished chemo in March) Only problem is that it doesn't seem to have a style and I think I look like one of the Munchkins from the Wizard of Oz Smiley Happy x

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Re: October 2017 Chemo Starters

@Jencat Did you keep your hair? Which hospital? I have had 1 docataxel and have 2 or 3 more docataxel. Paxman said to continue with cold cap as they have had good results with docataxel. I did wonder if i may kèp my hair as not lost any yet on first docataxel.
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Re: October 2017 Chemo Starters

Interesting. I have had a message from Paxman and they said use a paper theatre cap or gauze so looks like it is not true. They are calling me tomorrow to discuss further and have asked for an e mail i can print off to take on Tuesday when i sè onco and Wed when i have chemo. Thanks all.x
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Re: October 2017 Chemo Starters

I don't know if that is correct or not Linda, but the same was said to me on my 4th session and I had to stop using the cold cap. I was told it would stick to my head and be very painful x

Community Champion

Re: October 2017 Chemo Starters

Hi Linda there are a number of threads about the cold cap in this section you may find someone who has had a similar experience https://forum.breastcancercare.org.uk/t5/Chemotherapy/bd-p/4435. you could also maybe ask about this in the Ask the Nurses section https://forum.breastcancercare.org.uk/t5/Ask-Our-Nurses/ct-p/Asknurses/interaction-style/forum
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Re: October 2017 Chemo Starters

Not sure if this is the right thread re cold capping? The hospital refused to use the cold cap last time as i dodnt have enough hair to pull over the top. I suggested putting gauze and a hairnet on the top but they said it may stick to my head as per the Paxman instructions. Is this correct? I have messaged Paxman but not heard back yet. Many thanks.
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Re: October 2017 Chemo Starters

Sometimes Sue, it's a bit hit and miss! Seem to be getting recent one's now, but texts people sent during chemo are somewhere in cyberspace! Smiley Happy

Thanks for pm xx

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Re: October 2017 Chemo Starters

Jencat just aentbyou a pm x
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Re: October 2017 Chemo Starters

Jencat is your phone receiving texts yet ? Xxx
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Re: October 2017 Chemo Starters

2 weeks today ladies! Smiley Happy Although I need to pm Sue otherwise I will only be with you in spirit! I haven't a clue where we're supposed to be meeting or what time! Smiley Happy xx

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Re: October 2017 Chemo Starters

Hello ladies! Haven't been on for a while as I've been camping in the Lake District. I can definitely recommend camping to relieve the hot flushe, they were pretty good whilst I was away but I came home and they're back with a vengeance 😟I dont think the heat heat is helping 😱

 

Buddyfan, those pictures were beautiful and the dragonfly one is definitely a contender for the country file calendar! 

 

Mishy, Jencat sorry to hear about your troubles with returning to work. Hope you can both get something sorted soon.

 

Kirsten, well done! I need to sponsor you. I'll do that in a minute 🙂

 

Just over 2 weeks until the meet up. I'm so excited 🤗🤗🤗🤗🤗

 

 

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Re: October 2017 Chemo Starters

Reboot yes you need pc yo upload photos x
Well done lovely lady x
Jencat see you in less than 3 weeks
I am excited beyond belief xxx
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Re: October 2017 Chemo Starters

Buddy lovely to hear from you x what an amazing place you have there i don't blame you for spending alot of the time there as it must be beautiful at this time of the year, Buddy my gp has recommended i do just that there is a consultation meeting 14th August which i will be 'consulted' about this impending redundancy offer its a national cull of my role but do feel they haven't tried hard enough to give me a position i can do, they were well aware of the physical barriers i had to work in personal care before the bc this has just really just added to some of my previous problems in terms of my arm neck etc so i think im going to chill out for now to try and destress then look at doing something different once i have my pay off!! I def think they could have given me something i waa reminded tgat they had been very good to me aa most people are finished after ssp ends i have had any pay mind since then!! Think they are completely missing the point buddy i had wanted to return to work in May this has been their doing!!
As for the cbd i don't blame you for taking it as you say you want to give it everything you have got due to limited drugs availability and its good that you can get it from a reputable source just a shame its so expensive i wish the nhs would recognise its benefits and prescribe it xx lovely to have a bit if rain today i think the gardens and wildlife need it and its cooling the air as long as the sun returns 🌞reboot well done thats lovely that you took part and bet you felt dead proud x
Hi to everyone else hope you are all doing really well x
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Re: October 2017 Chemo Starters

Mishy, Jencqt, so sorry to hear of your extra problems. Mishy, can’t you be signed off sick until redundancy and take the time to find another job or walk of life? Also, this sounds like discrimination, have they re-jigged the structure in order to make you redundant? Sometimes though, if you’re forced into a different tack, it can be beneficial. Very hard to look at it as an opportunity though. Both of you, I have started CBD oil, primarily because I’m clutching at straws regarding cancer treatment but also for pain relief. On the fb page CBD consumers uk/eu there are loads of people using it to help sleep and anxiety. That is a closed group you can join because they say they are trying to exclude sellers. They recommend various producers and give advice on how to use it. CBDbrothers give samples so worth a try.

Nails, so, bearing in mind I’m three months ahead of you Oct starters because I did T-FEC rather than FEC-T, my finger nails have just got to the point where the weak line has reached fingertip. It’s only now that they have started to split and the new nail behind looks healthy. I just look like I have short nails, rather than actually losing them. I did lose my two big toe nails, again when they reached the end of their nailbed. It was expected as they only had half a nail bed due to infection many years ago. I firmly believe the Boots Almond oil helped and is still helping. I use it every day still.

Reboot, well done. I admire your achievements so much.
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Re: October 2017 Chemo Starters

Thank you Shi and Jencat, we finished the half marathon at 1.30 this morning. It took us just over 5 hours but my MapMyRun app said that we’d walked 15.8 miles!!! 😳😳😳
It was a fantastic event and great to walk around all the sights of London: Oxford Steet, Marble Arch, Hyde Park (where Bruno Mars was playing), Buckingham Palace, the Houses of Parliament, Trafalgar Square, Piccadilly Circus, Leicester Square, Covent Garden, the South Bank, Tate Modern, the Globe, Tower Bridge, the Tower of London, St Paul’s, the list goes on. It really was a challenge of dodging late night shoppers, hipsters rolling out of eateries and drunken people falling out of bars 😂
I’m overwhelmed that between the 2 of us we have raised £2000 including offline sponsorship! Split between BCC and Prostate Cancer UK.

It’s been nice to catch up with the forum again a bit this past week but gosh what an awful situation work have put you both in Jencat and Mishy! Tomorrow is the official end of my maternity leave and start of 6 months sabbatical, I feel so lucky to have the opportunity to do that.

Lots of love to everyone xx As I re-learnt last night, we are all absolutely amazing - we just need reminding sometimes xxx

(P.S. Do I need to be on my PC to upload photos?)
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Re: October 2017 Chemo Starters

Yeah its not good is it i think im more angry that i can't move forward if i want my redundancy so its a case of sitting waiting just incase you need any advice i sought some from maggies rehabilitation and employment case worker who has been fantastic offering telephone support if i need someone at any impending meeting with them hes also assured me that I have rights covered in the equality act we have to be treated fairly and given support to ensure a smooth and phased return which should be built up, of course in my case i could do that but there won't be a job at the end waiting so it isn't good for my well-being as it will cause more stress etc so unfortunately and reluctantly im having to extend fit note to remain off till it happens i really hope you have better luck with it i was told that its been noted in cancer recovery a well organised and managed return to work should have a postive effect on recovery but if its not it can actually have a negative effect on recovery ckuld they not give you a longer phased return the average is around 12 weeks should be full pay xx
Buddy lovely to hear from you lovely pictures what a beautiful place you definitely have a contender there with the picture for the country file calendar xx
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Re: October 2017 Chemo Starters

Mishy, thank you for taking the time to reply to me. It sounds as if you're going through a nightmare at the moment, I hope you manage to get something sorted soon. It doesn't seem fair that you're not receiving any wages or that you might not receive redundancy pay either.

I've not been sleeping well either, which as you say, doesn't help our recovery x

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Re: October 2017 Chemo Starters

Sorry was meant to say i was advised by employers at first to stay on sick leave x
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Re: October 2017 Chemo Starters

Jencat its an absolute nightmare when you have got work issues but the others are right about phased return pay etc i am un the process of a very stressful situation with my work to cut a very long story short my return has not happened!! Being made redundant was informed verbally in may when meant to return td stay on sick leave while they tried to sort out a new role now found out they haven't got a suitable alternative which i could carry out offered a care worker job which i can't physically take and now want me to start a phased return in my current role till October when they will make me redundant 🖕 its resulted in me being that stressed i have been getting headaches chest pains and not sleeping doc has hit the roof said they are having an effect a positive recovery i have had to go down the getting advice route as im now in limbo with no wages but if i just leave i will lose redundancy x
Community Champion

Re: October 2017 Chemo Starters

Get on the phone Monday and say you want Occy health /HR advice before agreeing on when and how you return .
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Re: October 2017 Chemo Starters

Thank you Jill and I'm sure you're right, once I'm back after a couple of weeks, I'll probably be expected to cope as if I haven't been away! I need to get it sorted asap because of the school holidays coming up x

Community Champion

Re: October 2017 Chemo Starters

You really should be negotiating a very slow return and they should pay you your full pay while you are going through phased return .You maybe need to stay off sick til you have had Occy health /HR discussion .Please don't feel pressured to go back too soon - the ball is in your court you have disablity law on your side - they just want you back to solve their staffing issues once you are back through the door I know from experience - you will be expected to cope .
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Re: October 2017 Chemo Starters

Thank you all for your advice regarding my work dilema, it's really appreciated x

I discovered today that I had a message on my phone from the Macmillan work advice team, so I'll get back to them on Monday and see what they've got to say and I also need to phone my chemo onc anyway to let her know that I've now been discharged from the radiotherapy onc and now back in her care, so will also mention this situation to her. I spoke to a work colleague last night who was off sick last year and she said that HR made her do 3wks at 50% and then 3wks at 75% and she was only absent for a month, not 11 like me!

I can't afford not to work as I'm on my own, but another option I've wondered about is reducing my hours permanently. I'm 60 next August (that feels a bit unreal!) but I could probably take my work pension now. It's not worth much, so taking it a year earlier than I intended might not make too much difference and it might be worth it physically and mentally. Another little job for Monday maybe?!

I need to sort all this out asap as school finishes on Thursday, plus I'm getting stressed and not sleeping well. 

On a positive note, I didn't see my usual onc yesterday, his replacement was Greek and gorgeous! (and lovely) I was a bit disappointed he didn't need to examine me! My YD said she felt like asking for an examination too! Smiley Happy  xx