October 2017 Chemo Starters

[Ali49]

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

[Shi]

💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻😁😁😁😁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

[SueW]

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]

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

[Chaffinch17]

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

[Chaffinch17]

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]

Jencat 😘😘hope you are ok ❤️❤️❤️ Wonderful posts from the beautiful Kate nd wise jill1998 as always thank you 😘😘💕💕✨✨shi xx

[Linda Corinne]

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

[Meesh73]

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. 

[Linda Corinne]

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

[Jill1998]

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 .

[Jencat]

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

[Jill1998]

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 .

[Jencat]

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

[Jencat]

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 x

[Linda Corinne]

@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.

[Linda Corinne]

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

[Jencat]

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

[Jill1998]

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

[Linda Corinne]

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.

[Jencat]

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!

Thanks for pm xx

[SueW]

Jencat just aentbyou a pm x

[SueW]

Jencat is your phone receiving texts yet ? Xxx

[Jencat]

2 weeks today ladies! 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! xx

[Meesh73]

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 🤗🤗🤗🤗🤗

[SueW]

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

[Mishy18]

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

[buddyfan]

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.

[Reboot]

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?)

[Mishy18]

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

[Jencat]

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

[Mishy18]

Sorry was meant to say i was advised by employers at first to stay on sick leave x

[Mishy18]

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

[Jill1998]

Get on the phone Monday and say you want Occy health /HR advice before agreeing on when and how you return .

[Jencat]

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

[Jill1998]

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 .

[Jencat]

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!  xx

[Jencat]

What lovely pictures buddyfan and how nice to have all that at the bottom of your garden and all that wildlife too! I agree with Shi, your dragonfly photo is beautiful x Which part of the country do you live in?

People can be very insensitive in their questioning sometimes, they probably mean well, but it can come across as intrusive. I was at a bbq recently and somehow my bc came up -I'd got plasters on some of my nails trying to save them and someone asked why! Wish I'd thought of something witty like I'd been in a wrestle with a shark! People I hadn't even met before were asking me if I'd been given the all clear, which I haven't yet. I think your idea of emailing your guests before your music do is a good idea, as you say you don't want to spend the day discussing cancer. Hope the day goes well, hopefully the weather will be as nice as it is today xx

[Jencat]

Well done Reeboot, hope it goes well this evening xx

[Shi]

💃🏻💃🏻🕺🕺💃🏻😘💃🏻To our Reeboot who’s doing the walk through the night tonight 👍👍👍👍you sparkle and be amazing darling ❤️❤️❤️💕💕✨✨✨shi xx

[WhyteFawn]

Buddyfan that's a beautiful spot. We had a dragonfly come through our window the other day it was so beautiful. I watched it for ages before it made it's way back out.

[Shi]

Buddyfan, beautiful photos 😘😘😘think you should send the damsel fly one into country file for their calendar👍Lovely is like a little private paradise down there for you, it’s beautiful. I think your email to everyone is a good idea, then you will be able to enjoy your music event without having to field constant questions. People are concerned and mean well, but they don’t half put their size 9’s right in there sometimes and engage gob before brain and you don’t want that. So pleased you’ve been doing bit of snorkelling it’s very relaxing doing that ❤️❤️❤️Thanks for sharing lovely photos 💕💕✨✨✨shi xx

[buddyfan]

Ha, at least my hair doesn't get in the way of the mask now.

[SueW]

What lovely pictures buddyfan x

[buddyfan]

My 'secret' spot by the river. No one can see me from this bank and only sheep the other side.

[buddyfan]

Crikey Jencat, what a traumatic situation. I don't know how any of you are managing to go back. I physically wouldn't be able to.

I've got our little music do coming up on 21st and I've realised that not all of the guests know about my cancer. I don't want to spend the whole day answering the inevitable "did they get it in time" or "are you clear now" . NO I'M NOT CLEAR, IF I WAS, BELIEVE ME, I'D BE SHOUTING IT FROM THE ROOFTOPS. Sorry rant over, they really are the two worst questions. I think I might email everyone that I've had cancer, I've finished chemo and getting better and that I really don't want to be discussing cancer all day long!

🤣😂You alk seem to think Ipve been on holiday. The snorkelling was in our local river, at the bottom of our garden. I sit in there for hours, with damselflies, dragonflies, swallow, swifts, house martins, kingfishers, trout, swans and cygnets all oblivious to me. Absolutely love it. I was in there on the quarter final and heard the cheering from the village!

oh, did go sailing in a dinghy for disabled people. Lovely aftenoon, so I might try and make that a regular thing. Feeling a little self indulgent, sitting by and swimming in the river, sailing and embroidering at local studio. Especially when OH is slaving away building an extension to shed roofs. Mind you it is for his digger! Still, I did bring him a piece of cake back from embroidery today. AND I still haven't got a bathroom near to our bedroom!

Bit of a bummer, physio thinks body boarding might be a step too far for my back.

Right, back to trying to understand the CBD minefield. 💖💖 to all 🧜‍♀️🏄‍♀️⛵🏞🌊

[Shi]

Jencat, I totally agree with Jill, do not go back till you are ready, don’t feel obliged or any of that mullarky, you are what’s important both physically and mentally, it’s a big step going back to work after everything and to be going back into a lot more commitment is not going to help you my lovely till you are ready to get your Knick ass pants on and only you will know when you are ready. Look after you and put yourself 1st please for once you lovely lady 😘😘💕💕✨✨shi xx

[Jill1998]

Don't go back til you are ready and on your terms - once you are back they very quickly forget what you have been through and that you may still be struggling .I think you can request a referral to Occy health for support /advice - they helped me return in a way that was manageable and my employers had to respect their advice .

[Jencat]

Thank you very much Jill, Sue and Cassie for your help x

Had a long chat with my friend who I'll be job-sharing with last night and she's very supportive and understanding-I've asked my Head if I can swop a day/pm with my friend to have counselling and she can't see a problem either because she's in school 4 days a week, so it's not as if I'm even asking her to swop on her day off. Also had a cuppa with one of the TA's who had a cry on yesterday pm! Both are saying I need to put myself first and maybe I shouldn't return yet.

Occ Health haven't been mentioned, but I'll look into that Jill, thank you. I have phoned Macmillan and one of their specialist teams will be getting back to me . I'm also going to phone my union and see if they've got any info. I've got an onc app today at the hospital where I had my radiotherapy (and where I'm hoping to have my counselling) so I'm going to speak to the Macmillan workers there as well and see if they can give me any advice and info about a phased return.

Didn't sleep very well last night thinking about it all! I think the conclusion I'm beginning to feel is it's maybe best to try and get back to work in Sept, but I'll probably speak to my Chemo Onc about only returning for one day a week until I've finished my counselling, because emotionally I don't feel I'm ready just to go back. I haven't been in a classroom for over 9mths, but I'm going to be launched straight into class and a more difficult job than the one I left as I didn't have the responsibility of my own class prior to having bc. I'll only have another adult with me until lunchtime (even though I've mentioned and given my head an info leaflet about my neuropathy) and returning without possibly the counselling I feel I need-one of the reasons I want it isn't just to talk about the cancer, but feeling anxious about returning to work after such a long gap!

Got an app with Radiotherapy Onc today, feeling a bit anxious about that too! I'm becoming a wreck!

Thanks for the virtual hug Sue, it'll be lovely to have real hugs with everyone soon xx

[WhyteFawn]

Hi Jencat. I hope you're ok after your meeting at work today. Definately ask your gp for a note to specify no of hours to work etc. I was offered one but I just went straight back to work full time as I'm an all or nothing kind of girl!
X