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May chemo starters 2018

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Re: May chemo starters 2018

Hi all,

Good to catch up with your news.

JemPD thanks for the T tips..I have my dark nail polish ready and use factor 50 so will re,ember to put it on the nail beds.. Always worry about taking paracetamol when my temp could be high.

Havent used any theatre caps but good tip if it goes thinner as very cold last time. You're nearly there. Well done on the wig. I haven't bought one and wear bandanas and buffs instead. Too hot for wigs for me 😊

 

Went to work for a while today..strange but good to see everyone. 

 

Will be back at the end of the week no doubt.

stay well everyone,

Tropic_al x

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Re: May chemo starters 2018

Herts good to hear from you - stay away from people and germs- antibacterial hand wash goes everywhere with me- children are use to using frequently too. No more Casa NHS for you this cycle, stay on the plane with us😊
My last chemo session is 4th September followed by rads - not sure if 15 or 20 sessions- in my head thinking 20- hoping will be finished by half term in October as off to Portugal with extended family- not sure I’ll be fit for much though, lounging round a pool is what I’m planning. I will need a little more surgery to tidy up and give me a nipple back - not seeing surgeon until January- feel this will be the bit for me to make me feel more female again.
Looking forward to stepping off that plane Shi - banking on you being there to welcome us with a cocktail- I haven’t drink any alcohol since Dx in February so just a single shot please- that’s all I will need to be dancingπŸŽ‰ xx
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Re: May chemo starters 2018

Jacqb we’ll all be here holding your hand, and I doubt anybody will be through everything by the end of the year (I have to admit that had been my target until a couple of weeks ago when the surgeon told me the follow up surgery (x 2) won’t be for another 6 months. We just have to tell ourselves it will be worth it in the end xxxx
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Re: May chemo starters 2018

Hi Tracey and Hets
I may well be last over the chemo line as I’m on the ROSCO trial. Will have last of four Docetaxel next week then a five week break followed by surgery in September. I will then have four FEC sometime in Oct/Nov. Whilst I am looking forward to the break from chemo, I am a bit down about it then carrying on till the end of the year.
Jacq x
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Re: May chemo starters 2018

Glad to see you back Hets.

Interesting to see who will be finishing treatment in September. I have been put back 2 weeks but if i am now on track should have last chemo september 13th before 15 sessions of rads.

How is everyone else doing and are we all crossing that line for last chemo in September? We have a plane to catch βœˆπŸ’ƒπŸ‘
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Re: May chemo starters 2018

Hi all not been on for a while but reading this sounds like you’re having lots of ups and downs but encouraging each other through them. I’m 6 days into 4th FEC, but with no bone marrow injection so v tired and totally locked myself down in terms of going to public places in the hope of avoiding infection, avoiding hospital, and staying safe. Interesting to see comments about bloods - mine are all over the place and in particular liver markers v high - apparently scan will be arranged just as precaution. These last 2-3 cycles do feel harder all round, not helped by the heat, but we will get to the end - have we worked out who is going to be last across the finish line yet? My last cycle will be finished on 22/9 (as long as there are no more delays).
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Re: May chemo starters 2018

Great news Linda 😊
Thank you Shi for the encouragement πŸ‘
Sarah, my liver has taken a bashing from chemo and strong antibiotics so I’ve just been for a lovely pub lunch and drank teetotal G&T! Anyone who knows me would be amazed!! and yes the fatigue has got worse each time.
Jacq x
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Re: May chemo starters 2018

Linda Corrine - wow what a difference a day makes ! So pleased for you . Sounds strange that happy you can be poisoned today! But as you have said 1 step closer😊. Hope all goes well including cold capping. This is hell on earth but we are all doing so well and getting closer to the end.
Cycle 4 yesterday, 1st docetaxel- feeling surprisingly ok today- unlike fec no swimmy head. Woke up this morning dreading what nasty se today would bring- so far so good. Been out for walk to the sea- always does me good . Children all out at beach with family and friends. I’m now resting . I know it can all change very quickly but doing ok.
Good luck with rest of day xx
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Re: May chemo starters 2018

My neuts are 3.92 today from 0.88 yesterday so chemos going ahead. Hey!

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Re: May chemo starters 2018

@JacB - so sorry your liver reading was wonky, delays must be so frustrating!

 

Has anyone found the crashing fatigue worse the more sessions we have?

I'm on course for my 5th of 6 on Monday - docetaxol - but this week I'm stuggling big time with fatigue!

 

Sarah x

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Re: May chemo starters 2018

Jacb, the liver can take a pounding on chemo, think quite a few of us ended up with high reading near the end and a couple of delays so just keep focused and better to land in Greece safely 😘😘any delays that’ll be passport control so you’ll get through ok ❀️❀️❀️Keep πŸ’ͺπŸ’ͺπŸ’ͺas you have done the whole flight amazing lady πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
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Re: May chemo starters 2018

Thanks Jempd. Hope all will be ok tomorrow as have ultrasound booked for the 6th which may be affected. Really dont want to delay this Hell on Earth as doing a countdown now. 43 days to go or maybe less if only have 2 more cycles.x
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Re: May chemo starters 2018

Oops - not sure what 1st sentence is suppose to say !!
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Re: May chemo starters 2018

Hi all love Rbs got my on today!
Tanya and TraceyMac - great you enjoyed LGFB course and met each one ther - how lovely. Know what you mean about the eyebrows- filling in for me at the mo- enjoy all your new kindly given products😊
Jacq- sorry bloods not allowing chemo tomorrow πŸ˜–- take the extra week to look after yourself . You will get there with the rest and of us.
Linda - hope your bloods are raised to ok levels tomorrow- all my bloods were a little down but still with ok levels. Good news re cold cap and then using theatre cap- this what my nurse does- top tip leave theatre cap on for short while to allow all ice to melt and head to warm up. I cold capped again today- don’t think one can ever get use to that awful 1st 15 mins- what we put ourselves through! The good news about docetaxel is only 2 hours of cold cap😊
Shi / your encouragements keeps us all going, thank you. Beautiful towel packed, can’t wait to land - I can now say 2 cycles to go 😊😊
Melissa - you’re doing so well, hope rest of cycle is low on se😊
Cycle 4 βœ…, docetaxel 1βœ…- no allergic reaction😊no swimmy head that I suffered with on fec. Very very tired but so far ok- long may it could continue. Came home from hospital to 🌻 picked at lunch cal farm by my children- a lovely surprise, they are beautiful😊
Take care all, I hope no more casa NHS for any of us this cycle. Xx
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Re: May chemo starters 2018

LGFB was lovely and the goody bag amazing. I can now draw an eyebrow which for me is great . It was lovely to meet u Tracy you look amazing keep strong for T .
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Re: May chemo starters 2018

Sorry to hear that Jacq. Am at home resting now and prob not going to work before chemo tomoz. x
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Re: May chemo starters 2018

Hi Ladies
Just had a call to say they are not happy with my liver function so chemo delayed for a week. Really disappointed as this one is my last T and I can’t wait to get it done. I’ve taken the steroids and fasted for 36 hours for nothing. I Also have the worry of what is happening to my liver 😞 This rollercoaster ride is s**t! Good luck tomorrow Linda, Hope the cap goes ok.
Jacq x
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Re: May chemo starters 2018

Went to my LGFB session today and it was great. A lovely 'pick me up' just at the right time.
Was lovely to meet you Tanya, let's hope we can meet again as we get through these next few months of treatment.
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Re: May chemo starters 2018

Linda my neuts have been down for the past 2 cycles but thankfully when having the blood test redone again on the day they've risen above 1 and chemo has gone ahead so fingers crossed this will be the same for you x
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Re: May chemo starters 2018

@Jacqb Thanks. Will be there ate 1 so will probably see you tomoz. Glad to hear they have lowered the dose. I did ask re that too & maybe they will end up doing that for me too!.x

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Re: May chemo starters 2018

Hi Linda
Good to see you today, sorry to hear that. Fingers crossed for tomorrow’s blood test 🀞they’ve agreed to lower my dose by 10% which is a huge relief as really can’t face another admission.
Might see you briefly tomorrow as I’ll be there till three.
Jacq x
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Re: May chemo starters 2018

Just been told my neuts are 0.88 and need to be 1 for chemo tomorrow. I have to go in an hour early for another blood test tomorrow to see if they will be able to do the 5th chemo. Not sure why as the last 2 times it was higher than before I started chemo although I am on Docataxel now after having 3 FEC? Just hope it is higher tomorrow & that I havn't taken the steroids for nothing.

 

They have agreed to use the cold cap again (as last time they refused) using a paper theatre cap or gauze as I got an e mail from Paxman saying that they can use a theatre cap or gauze!

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Re: May chemo starters 2018

Captain costas has radioed ahead to spiros sunloungers and 😎😎πŸ₯“πŸ₯“πŸ₯“rads loungers being set up for 😎😎πŸ₯“πŸ₯“ladies, duty free trolly will be round soon before you come into land πŸ‘πŸ‘πŸ‘πŸ˜πŸ˜πŸ˜nearly there ❀️❀️Beautiful πŸ’ͺπŸ’ͺπŸ’ͺladies πŸ˜˜πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨shi xx
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Re: May chemo starters 2018

Hi everyone..not had much to report for the last 2 cycles  and I count myself so lucky with escaping most SE. I have been checking in daily though and am so impressed with how strong and positive everyone is doing/keeping despite some of you having a few struggles, hospital visits, delays and nasty SE. I’ve been routing for you all daily xxx

Shi’s Encouragement is absolutely fabulous, I can’t thank you enough for taking the time to boost us on.

 I had my 4th FEC (4/6) on Wednesday. I’m actually finding having the chemo the most traumatic part. Again my WBC was down from the day before bloods, but new bloods on the day showed ok, I find that wait so stressful to see if chemo is going ahead or not. My Veins are shot to bits so they had to go in through my hand and for the first time I was hit by fatigue pretty hard! I was ok on the Thursday, day one, but Friday Saturday Sunday I just kept dozing off! However new week, new me, feeling so much more energised and back to normal..wait what is normal?!?!

We’re all about to turn that corner real soon and see that light....keep going everyone xx Melissa xx

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Re: May chemo starters 2018

Ladies you are doing so well, lovely to hear from you all.

Tanya, I will see you at LGFB tomorrow morning πŸ˜πŸ‘
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Re: May chemo starters 2018

@jempd all the best for tomorrow, you'll be fine. Sending positive thoughts and strength your way.You got this.. Im day 11 now and back to myself. It's doable even though it may not feel like it at the time. @mustardandgray sorry you have an extra week of rads. I was told 10 originally and then went up to 15, but if that what it takes we can do it. Lgfb tomorrow and quite looking forward to it. Will fill all you ladies in when I get home ❀️ keep strong and well protected in this heat apparently it's getting hotter πŸ”₯πŸ”₯πŸ”₯
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Re: May chemo starters 2018

Hi Sarah - 1 more to go πŸ˜ŠπŸŽ‰- light at end of a tunnel. Rads just a shorter tunnel and they lying on beach in Greece waiting for the rest of us to finish- save those sun beds!!
Sorry 4 weeks of rads - I am expecting that too, if then 3 weeks would be a nice surprise. Don’t dwell on what radiologist said - focus on 1 more chemo first.
Tropic_al - my 1st t tomorrow- also dreading it but chatted through with nurse and consultant today and feel a little better- some top tips- nails paint dark - I have navy- then keep high factor suncrean on the nail beds- for the whole time. Take paracetamol before joints ache - suggested to me 4 times a day for 3-4 days rather than wait until achy- if needed add codine. If possible keep walking and moving. But if you have a bad day go with it and the next day might be better- felt this helped a little.
Also continuing with cold capping - lost about 60% now πŸ˜–but focussing on regrowth- will need to wear theatre cap again - really not looking forward to any of tomorrow but it will be another βœ…. Children want me to wear wig when we go out- cycling today with helmet and wig was too hot- sweat pouring down my face πŸ˜–but it helps them and a fab day with them.
Xx
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Re: May chemo starters 2018

Hello!
Hoping everyone is having minimal side effects and enjoying the sun.
For the first time I can see the homeward straight, after my first radiology appointment this afternoon.
I have my 5th of 6 chemo sessions on Monday, and am being measured up and tattooed ready for radiology on the 6th August.
It's all coming around quite fast now!
The only negative was that the original 3 weeks radiation has been extended to 4 weeks, as the doctor said it was "a particularly nasty cancer" which threw me a bit.
But I can do an extra week!
Sarah xx
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Re: May chemo starters 2018

Hi all,

sorry I have been away for a week or so. Haven't been away on a holiday unfortunately, although the flight is sounding wonderful Shi!

 

On my good week or cycle 3 of FEC and feeling great as you do so working and seeing friends 😊.

 

Days 5-9. were not so good this time with a temp and feeling unwell day 7. Think I got too tired after not sleeping at night and not resting enough in the day.  Got as far as A&E then temp dropped a bit and didn't go in as felt like a fraud the last time so went home to bed...really stupid but survived ok and told off by the specialist nurse the next day. Took me a few days for my immune to pick up and spent says watching football and tennis till I felt better. Will go in quicker next time.

 

I have my first Herceptin this coming Friday so need to stay in hospital all day for monitoring then my first T next Monday with the cap. Dreading T as have heard nothing good. Have my nails painted dark, plenty of pineapple in stock, Manuka honey, peppermint tea, ice lollies, difflam and will hope for the best! Busy time at work and have been trying to help out as we're a small team but will have to work around the down days. 

Sorry some of you ladies have very sore mouths..that's been my main problem so will have to work hard on keeping an ulcer free mouth.

 

If if anyone needs any cold cap info then I'm still doing it despite losing quite a bit of hair on top It's given me a lot of confidence. Can't say that this summer is the easiest to be doing it though as wearing bandanas and hats out and hard to keep a cool head with these steamy nights in a very hot house! I'll help where I can if anyone has questions.

 

Will be back soon...no doubt whinging more next week! πŸ˜€

 

Best wishes he's for some healthy days for all

Tropic_al xx

 

 

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Re: May chemo starters 2018

Tanya thank you so much for your update on how you are doing on T! Hope you are continuing to feel better each day. Assessment tomorrow and chemo on Tuesday - T number 1- dreading it. 3 children finished for the summer - not great timing. I’ve roped in friends and family to help for the first week. After reading most people’s experiences on T didn’t think I’d be the best Mum.
Hope everyone keeping well and no visits to Casa NHS this cycle.
Xx
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Re: May chemo starters 2018

Bing bong captain costas says look out the windows on the left and give the Liston in Corfu a wave as we fly over πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹bing bing πŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
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Re: May chemo starters 2018

Linda Corrine your cold cap question on oct17 Chemo thread, try pm big meesh73 she was our cold cap queen on our thread 😘😘she might be able to help and also lovely Jill 1998 has posted useful info for you on oct17 Chemo thread in response too πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨shi xx
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Re: May chemo starters 2018

Good to hear you are feeling bettter Tracey and you are right in the bigger picture better to be safe than sorry. The 30th will soon come around and you will be much stronger for it x
Tanya I’ve just had my 4th T and also have had a nose like a tap. I’m also on Herceptin and I think it is a SE of that and chemo. As time has gone on I have developed little cuts in my nose and a little infection but this round got some antibiotic nasal cream and it’s cleared up in days. Hopefully it won’t be as bad for you but just for you to know x
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Re: May chemo starters 2018

Hi everyone hope all is well and fighting on x Im now day 8 and feeling a bit more normal now and not so snappy my poor hubby has suffered with me this week. I still get quite tired late afternoon my taste has returned and my mouth now looks pink and not a white dead look. So to everyone who has T coming up you can do it, just a lot different side effects. Oh and forgot to say I have now lost all of my nose hair so that runs like a tap now. LGFB next week looking forward to that. All my ❀️ ladies stay πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺ
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Re: May chemo starters 2018

Thanks Michelle, feeling so much better, had date for first T as yesterday was cancelled so it is now the 30th July so I have delayed by a couple.of weeks but better to be safe and avoid an infection st this stage of treatment
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Re: May chemo starters 2018

Could you move your surgery to Exeter Jacqb?
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Re: May chemo starters 2018

Hi Linda
Thanks for replying, yes he said that their will be noticeable asymmetry after rads and I know I will struggle with it. I’ll just have to save up for surgery next year.
Jacq x
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Re: May chemo starters 2018

Hi Tracey, I hope you are feeling a bit better now. A few from my thread had various delays and changes to treatment and yes found it frustrating at the time but hopefully you will get your next date soon and I expect you are glad to be rid of the tooth pain. Enjoy your LGFB course x
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Re: May chemo starters 2018

@Jacqb Depends on the hospital. I was told they dont do it for Therepeutic Mammoplasty but Exeter do and so do London where my surgery has been moved to.Will it leave much asymmetry with a WLE? x
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Re: May chemo starters 2018

Good morning ladies
Had a consultation with my surgeon yesterday, he confirmed that I will be having WLE and lymph node clearance that will leave me with no nipple and asymmetry. He also said that balancing surgery will not be available on the NHS. I thought that it had to be offered? Does anyone know if that is the case? As I am completely OCD about symmetry, I would love to hear if anyone else has been told that future surgery is not available on the NHS.
Many thanks
Jacq x
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Re: May chemo starters 2018

I have a rash still under my boobs which i thougjt was a heat rash and on my hands. The chemist asked what steroids i took if any and as my hubbie didnt know they wouldnt give him hydrocortisone cream. Not been back again yet but will do so.
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Re: May chemo starters 2018

Unfortunately I had to get my tooth extracted so I had taken my double dose of dexamethosone in preparation for taxotere for nothing! I had 3 hours sleep in 24 hours but made up for it last night. I am on antibiotics for a week so because of my dental issues couldn't have my first T yesterday, it has been rescheduled for July 30th.
I did feel disappointed but at least now I get an extra week to work and feel 'normal'
Hope everyone is doing okay and managing the side effects.
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Re: May chemo starters 2018

Hi. I had rashes on my chest and hands after cycle 1. At the time I thought it was heat rash, but now I am not so sure. I took some Piroton and applied hydrocortisone which helped. Xx
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Re: May chemo starters 2018

Hi all I’m so sorry to read that things are getting tough. My psychiatrist has said that fatty fish (ie salmon, tuna), dark chocolate, bananas, and turkey (yes turkey not chicken) are v good anti depressants. Worth a shot? After a week off (so a 4th week free of chemo!) I had my 4th cycle today. No bone marrow injections so I have to stay v safe but I’m DETERMINED to get through this cycle without a trip to hospital!!! Fingers crossed xx
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Re: May chemo starters 2018

Good afternoon ladies,

 

I hope those rashes clear up for you Tanya.

 

Thank you for the positive vibes for the dentist, unfortunately I had to get the tooth extracted this afternoon whilst my wcc is optimum but that means no first T for me tomorrow after getting myself mentally prepared for it. I had already taken my double dose of dexamethosone so I will be buzzing tonight no doubt. I am on a strong antibiotic for 7 days as well. I am sure the steroid will help reduce the extraction inflammation so not taken without cause!

 

I am a bit upset as I have all the dates mapped out when treatments are and when I can work and now I have to change it all again but on the positive side, I can go to my LGFB session on the 24th feeling well. I have to go for bloods again that day and I have to phone Velindre Friday for my next chemo appointment which they can't guarantee being a week later or the venue so I am feeling apprehensive about that as I have got to know the nurses and it will be the first T so already worrying about it.

 

Have to stay positive and just deal with what they offer me. Sorry for the negative emotion in my message, think it has got me down a bit today 😞

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Re: May chemo starters 2018

Hi Tanya
When I had a rash, it was like hives or prickly heat, I got some hydrocortisone cream and it really helped.
Jacq x
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Re: May chemo starters 2018

@mustardandgrey yep what a rollercoaster I'm on day 6 and feeling quite low emotionally it definitely takes the stuffing out of you I have now developed a rash on my neck and top of my leg kinda like prickly heat. My mouth looks horrendous but thankfully no ulcers I hope you are doing better now all my love to you. @tracey good luck in the dentist I had all my teeth done just before I started treatment and my dentist said that if there were problems they could do treatment that they would liase with chemo unit but so far so good x Has anyone applied for PIP I have a lovely lady from Tenovus who has done everything for me but it's been 7 weeks now and still not heard anything. I'm starting to find the financial stress on top of everything a bit too much . Sorry for the moan ❀️❀️
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Re: May chemo starters 2018

Oh you poor thing Tracey, it’s not as if we don’t have enough to contend with at the moment. I hope the dentist sorts the problem and chemo goes to plan. X
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Re: May chemo starters 2018

Oh my! @TraceyMac hope it goes well at the dentist and there's no delays. xx
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Re: May chemo starters 2018

Thanks Michelle21, all has been complicated by a wobbly, sore tooth so I have to see the dentist tomorrow for assessment I am hoping my chemo doesn't have to be delayed but will find out tomorrow