December 2016 Starters

[Snail888]

Bit of a set back today. Mentioned to onc that bc boob has lump in it. He calls in consultant and now i have to wait on an ultrasound of lump. The lump has been there since surgery but now im concerned its another tumour. Surely they sgould scan you after surgery. Anxious 3 week wait now. And there was me thinking thwre would be some light after last chemo next week.

[Evie-S]

Good to hear from you Fiddlercrab, I was wondering where you had been. Hope half term was fun. All the best for T2 tomorrow.

I know many others are having T2 also this week - good luck to everyone, will be thinking of you all. 

Jacquie - I really hope your hands start improving very soon and you get your taste buds back.

WMJ - do you feel better for your day of rest yesterday? 

Touch wood the nausea/reflux has finally gone for me! Took a long time. Still not really keen on many foods though, can't wait for taste and appetite to come back.

Love to all, Evie xx

[fiddlercrab]

Blood tests: check

T2 tomorrow: check

Pancakes: check

Forgot the steroids at lunchtime and had them at 4. I may regret this tonight.

Hope you're all OK, I've been busy with half term and haven't caught up yet.

[Jacquie48]

Morning all. Andrea, how are you? Been thinking about you.

Rooner I loved the picture. It's wonderful to do normal things.

I'm longing to get my taste back. Knowing there's no more chemo has me thinking about food all the time but until I can taste properly I don't want to do anything special. I naively thought 3 weeks would be enough as taste buds renew regularly, or so I believed. My fingers still hurt and my hands and fingers are still peeling. Nearly two weeks now. Also still very tired but trying to just get on and do stuff through it. House is a tip. OH has tried really hard but it's a tip!

Like others, my tumour was also tiny but beastly. 12mm but 6 of 14 nodes affected. Size is clearly irrelevant to this wretched disease. Luckily they got clear margins first time around.

Be kind to yourselves ladies. WMJ just rest.

Jacquie xxx

[WMJ]

Morning Ladies!

I am feeling totally exhausted at the moment, it came over me last night. I have been doing so well on the weekly treatment &  I think I have overdone it. Total rest for me for at least today and tomorrow. 😞

Hoping you get some relief today Andreaj. 

Hoping everyone has a decent day.  X

[Agarside]

Hi All,

I had surgery first, didn't quite get margins so repeated 3 weeks later.  But now feeling lucky in that I havent got any more to think about.  3 nodes removed and all clear.

Trouble was, tumour was a G3 and vascular - hence in the December club!

Pre chemo bloods tomorrow but expecting RBC to still be low so will be delaying first round of T.  No point in starting this if already compromised.  Am so tired and worn out it is unreal.

Went to my van in Talybont Fri and Sat and it had to be the coldest wind chill ever on the beach!!  but it did perk me up and we got to do lots of walking, around Barmouth .... Got another Onsie - Pink this time!!

I seem to spend my life in Onsie's atm, so easy....

I have my look good feel good session on Tuesday, a late cancellation, hopefully something to look forward to.

love to all

Amanda

x

[Running girl 53]

Looking good Rooner good to see you have the energy for decorating.
Hope you are feeling better today Andreaj.
About the lymph node clearance, i too had a very small lump 1.3 cm and slow growing too but still found in 2 out of 3 lymph nodes after sentinel nide biopsy, cancer cells found on surface of the affected nodes so oncologist wanted to do clearance and found cells in 3 more nodes. Surgery was day case and apart from the fact that i had just got myself stronger after mastectomy and i felt i was back to square one the reality is that it wasn't too bad. After 3 weeks i started to feel fitter again ( 2 surgery's close together takes a lot out of you). Seems a long time ago now i look back on it. Looking forward to the day when i feel that way about chemo.
Didn't go to wales today as forecast not good, so spent the day walking in the cotswolds followed ny a nice pub lunch. Tired now but content.
Hope you all have a good week. Xxx

[Evie-S]

WMJ - sorry to hear that you have to go back for more surgery. I have been told that my surgery will be done between 4 and 6 weeks after the last dose of chemo - not sure if that is a government regulation. So hope you will be fully recovered by your son's wedding. Something very special to look forward to - the wedding I mean. xx

[Evie-S]

Fab photo Rooner. Thanks for giving us all a giggle today. I am so impressed at your energy. xx

[WMJ]

I feel for you Andrea and that situation is absolutely appalling and totally unacceptable. I cannot believe you can't get some relief over the weekend.
Rooner999, good on you getting some painting done.
I saw ONC on Thursday for check up and to discuss my treatment plan. Looks as though I will be on Tamoxifen initially until they are sure I am through the menopause then may change. However looks like a 10 year plan. Not happy about it but not looking further than finishing the chemo. although hoping to have an appointment with the surgeon in the next couple of weeks to discuss when I am likely to be able to have the lymph node clearance.
Our son gets married in July and I want to be as fit and healthy as possible for the wedding. The sooner I get the surgery done the better to be honest. Not that I am looking forward to it but just getting it over with. X

[WMJ]

Yes Evie I had a lumpectomy with clear margins in November, unfortunately 6/7 lymph nodes they took were 'nasty' so have to have a full node clearance plus radiotheraphy. My lump was very small, less than a cm but still managed to cause damage to the lymph nodes. It was not expected as no evidence from the ultra sound and it being a small lump. X

[Rooner999]

Thanks Salowery. I've been very lucky with SE's and I'm very conscious that a lot of you have had a really tough time. But hopefully my 'nipple painting' will make some of you lovely ladies smile 😊

[SALowery]

Hahaha good for you Rooner don't know how you have the energy!!!!

[Rooner999]

Having a productive day painting our bedroom, but I think I have more paint on me (and my boobs!!)....

[Jacquie48]

RobinJ there's up to a 6% chance of jaw bone issues and it is really worrying me as I will also be 5 years on Zometa. Apparently risk much higher if you have a tooth extraction whilst on Zometa (or any bisphosphonate). If you Google (if you can bear it) cancer research website has more about it. 😔 Bloody bloody cancer.

[RobinJ]

Hi Jacquie. I'm having Zometa infusions too along with the chemo. I've been told I'll have to carry on taking zometa for five years! This is because I'll be on letrazole and the zometa is to strengthen the bones. What's all this about jaw decay?! I don't like the sound of that one bit. I also have to take a calcium tablet every day which I don't like as it tastes horrid and you have to chew it. I'll have to take them for five years too.
Andrea, your pain sounds horrendous. I'm so sorry to hear it. I hope it gets sorted.
R x

[Rooner999]

Thanks Jacquie - that's reassuring. Probably the expectation is worse than the actual removal. Looking forward to the day mine goes; only a few more weeks xx

[Jacquie48]

Rooner I was really nervous. The nurse was an agency nurse I hadn't met before. She told me she'd removed loads and it was painless. She carefully cleaned around it then said she would remove it. I looked away and a few seconds later she told me it was out. I did not feel anything! Having worked myself up I couldn't believe it. So please don't worry xx

[Rooner999]

I really feel for you Andrea, awful situation. Jacquie - how was it when the PICC was removed? I'm dreading that I have to say, the thought of it being pulled out 😝

[Running girl 53]

Hi Andreaj, sorry to hear you are in so much pain. Hope you manage to get some relief. Xxxx

[Jacquie48]

Hi ladies, I've just caught up with posts and I'm appalled that you have been left in such pain Andrea. Have you considered calling an ambulance? They may well be able to give you better pain relief and not being able to feel parts of your body is a serious issue. I really feel for you. Understand why you don't want to go to A and E but I hate to think of you suffering like this till Monday. You are not weak in the slightest. This treatment is bloody harsh.

SALowery glad you're feeling better, and to hear that others are doing more or less ok. My feet aren't too bad but my hands are still peeling, keep catching on things, and the tips of my fingers still hurt a lot. I still don't have proper taste and am finding that difficult as I thought 3 weeks after T it would be back to normal. Wrong. Also have terrible fatigue. I'll go out for a walk and be fine. Then suddenly I'm not and I'm wondering how I'll get home. Legs go all weak and all of me feels so flipping tired. Even though I still have mixed feelings about stopping chemo I do wonder how absolutely terrible I'd feel after another T if I'm like this after one.

Can't help re tamoxifen. I'm to have Letrozole and Zometa infusions. The latter worry me. Twice a year and been warned to have dental checks as it can cause necrosis of the jaw. I already have sensitive teeth and am terrified of the dentist let alone the risk of jaw decay!!

My Picc line was removed on Thursday. It's weird not having it. The little hole is already scabbed over and will soon be a distant memory!

I think I've missed a few posts that I wanted to comment on, sorry it's hard on my phone unless I write notes and my fingers hurt so writing is a challenge.

Hope you all sleep well
Love Jacquie xxx

[Evie-S]

Andreaj - shocking that the hospital weren't able to help. Let your husband sort out the complaint for you - he will probably feel good that he's doing something to help. You have enough on your plate already. Loads of good advice about pain killers from everyone - hope you manage to get something to sort the pain before Monday.

SALowery - that's really good to hear that you are feeling back to yourself and heading off out to eat. Have a great time and enjoy that glass of wine! At least you now know what T will throw at you. Thanks for asking about me - I'm up and about a bit more now but still low grade nausea and quite dizzy. I'm going to be asking for stronger drugs and anti reflux drugs when I see onc next.

xx

[Snail888]

Also paracetamol does have a cumulative effect and needs to be taken every 6 hours for about a week. Dad was on paracetamol for months and they did help xx

[SALowery]

Why not try solpadeine Hun xx Andrea

[swampy1901]

Hi Andrea

I was caught like yourself over a weekend during a chemo cycle with a lot of discomfort and pain - eventually on the following Monday I spoke to my GP who prescribed Naproxen and Co-Codamol.

However Co-codamol is available over the counter so you can get a stronger pain relief right now. There is no reason for you to go through such discomfort - I found it so uncomfortable and wouldn't want someone to go through it when there is an alternative available.

Someone on another thread suggested taking one each of Paracetemol and Co-codamol so you get the full dose of Paracetemol with an extra hit of painkiller of Codeine. I found it helped me as two co-codamol had the effect of me feeling nauseous and sleepy whereas one and one did the trick without any other side effects.

I hope you find some relief soon.

Hugs

[Snail888]

I wonder if we could use a private gp. My dad seemed to get all sorts. He got lyrica or pregnabalin for his nerve issues which you can only get on nhs as a diabetic. Is is worth trying one of thoae over the phone private gps? I don't know what i do know is that so e of these nirses have little empathy or care. Their dissmissive attitude does not fill me with confidence. X

[Andreaj]

meant to say Thanks to everyone for all the sensible advice and also that yes I am now taking loratadine to help with pain from gsf injections - they worked ok last time round am dreading that pain kicking in on top of this

[Andreaj]

Thankyou everyone I really was at my wits end and knowing you are out there helped even though you couldnt do anything

I phoned the hospital it took about an hour to get the dept I needed to pick up and then despite a very clear description of symptoms and the agony I was having spasmodically they suggested paracetamol !!!

I am told there is no one who can prescribe anything stronger until Monday which I feel is totally crazy, the person I spoke to advised I either get admitted via a and e (last time I was in a and e 12 hours and felt like I had been beaten up when they were done never again) or wait until Monday and keep taking ibuprophen and paracetamol.  I mentioned Gabapentin and she sucked through her teeth and said they would not give it unless I saw the consultant first anyway.  I asked about GP unit she said they will not prescribe more pain relief for this as it is down to chemo so long story short I am in horrible pain on and off until Monday at least.

I have to speak to specialist nurses.

I explained I am worried about actual nerve damage as this pain seems far more than normal and I can not feel parts of my legs and feet, but she just said I had to wait til Monday.

It feels as though other areas people are getting better care?  I cant beleive Im supposed to just stand this because no one is there at the weekend!!

Hubby is so sick of it he is now making notes and will put in a complaint. Normally I would do that but I just feel so vulnerable and stressed I cant even think straight let alone complain or put things in writing.

I so hope the rest of you are having a good weekend, I admire you all your determination and strength, I used to think I was strong now I feel ashamed of how pathetic I seem to have become..sorry but I cant say it anywhere else 

[SALowery]

Thank you Evie for thinking of me... I've just started to feel back to myself the last 2 days but am finding I'm short of breath when doing things this time round so I'm taking things really easy ready for next Friday (already) off out today shopping with hubby and dinner tonight with him and my daughter at Gouchos can't wait might even treat myself to a glass of wine 😄

I hope you ok on Fec when's your next one?

Hope everyone else is ok?

Andrea how are you feeling did you ring the hospital?

Much love everyone xx

[Snail888]

Yes seems there is so much info out there. I will ask about thus dual treatment x

[Evie-S]

Hi Snail - I am pre menopausal (well I was before chemo, periods stopped now) and I have been told I will be given Tamoxifen for 10 years. I haven't dicsussed it any further as they have told me to focus on the chemo for now. Will be interested to hear what your onc advises. xx

[Snail888]

Hi everyone hope today is a bit brighter for us all. I have a post treatment question. I have been ofgered tamoxifen after rads im pre menopause. Looking around lots of people are being offered tamoxifen and zoladex especially if they have periods on tamoxifen. Have any of you been given advice in this area? Im seeing onc tuesday and would like to be for armed xx

[Evie-S]

Morning everyone - I know Andreaj is having a tough time, but how is everyone else? SALowery - how about you, I know T has been hard. And Jacquie?

WMJ - good to read that P is going well. Have you had breast surgery already?

Agarside - you are so good at taking control at appointments. I still don't think I'm totally clear about what the Dex does - given that different hospitals give different doses. I didn't have any the day before T and hardly anything with FEC.

Claire (Rooner) - great to read about your day at college. Definitely helps to be "normal" again even for a few hours.

Snail - I admire you teaching year 11, that's got to be one of the hardest years in terms of attitude.

Running Girl - hope you have a fun day in Wales tomorrow.

xx

[Evie-S]

Hi AndreaJ - so sorry to hear you are feeling so rough. I have had three T (now having FEC) and days 4,5 and 6 were the worst on T - in fact one day I felt so grim that I wrote in my symptoms diary in huge letters "no more chemo". But things did get better. As we have more doses of chemo the effects get tougher.  The others are right - call the hospital and get stronger pain killers. We all have a moan on here when we are feeling rough - I certainly did after my first FEC, and everyone helped pull me through. 

You too are brave and this won't beat you.

Big hugs, Evie xx

[SALowery]

Andrea you will get through this ring the hospital and see what you can get stronger to take but you will beat this

Big hugs

Xx

[Snail888]

Hi andrea are you on the gcsf injections? If so try a loratadine tablet. It dies seems that tax is terrible for feet mind yoy after 5 x fec my feet are really really tender too. Xx

[Rooner999]

Poor you Andrea..contact the hospital abd get stronger meds. I've got gabapentin and they are amazing. Xx

[Andreaj]

after first T was doing ok then pain in hips legs feet started, its now day 5 or 6? feet are now agonycan bareky stand scared this will last as can hardly stand the pain. taking ibuprophen is all I have atm how do i get through more of this

sorry to be miserable you are all so brave this thing is beating me now

A

[WMJ]

Hi all,

Glad you are starting to improve, it has been a tough few weeks for most of you and although not making many contributions, I have been keeping up to date with your posts.

Jacquie sending you my best wishes, you have really be through it.

Cookiepuss sorry to hear about your Mum, that is so tough for our all. 

Had my 3rd weekly Paclitaxol today, I am doing fine on it so far, which I am obviously happy about. 

Met with my ONC today and discussed my surgery, she is arranging for me to see a surgeon for full node clearance. Hopefully this will be done a few weeks after I finish the chemo. 

take care XX

[Rooner999]

Snail..I've very lucky my students are awesome. I teach uniformed public services (my background is police) so they are very disciplined by the nature of the course. I'm intending to go back after Easter too and combine that with radio as well as dad's transplant.

Feel so upbeat tonight; just had Valentine's Day here as first night without children! Had a lovely meal and actually tasted it..will make the most of taste and freedom until T2 next Friday 😊

[Agarside]

Hi Alll,

Pre chemo T meeting with oncologist this afternoon....  I ended up seeing the Reg, as a woman complained that she had to see the Cons so took my appt at 4.30 and I had to wait till after 5pm .... hey ho, think I did better as not keen on Cons.

Anyways, RBC still on low side, 118 - particularly for me, I need 130 or above to function normally.  Am very tired and symptomatic of anaemia.  Reg wants to lower T by 20% and delay a week to get me as close to normal levels as poss.  WCC good and my usually lower that average GFR has raised, very strange lol.

We did have a conversation on Dex, he wants me to take double of what I had for FEC, so when I told him I had a zero on FEC he didnt believe me as I should have far more symptomatic..  Anyway, have agreed to a half dose on chemo day.  He tried to tell me the nurses wouldn't be happy about that, which is when I told him if he wrote up our discussion then there shouldn't be a problem - if nurses kick off, I will leave and he can sort it out.  (btw Dex of no use to build RBC, I need an anaboloc steroid and he wont prescribe lol )

So feel ok, it was a good discussion.

Hope everyone is doing ok...

A

xx

[Snail888]

Claire thats lovely to hear. I just cant face my bottom set year 11s. They arent nice kids very disengaged from school and i dont feel emotionally i can handle their snidey comments. Im expected to be back week before easter on my normal hours perhaps over 5 days not 3. Its nit really the hours its the kids. Id love a college job but not seen any jobs in my area!
Im sorry tonhear things are so difficult cookiepuss the advice to take every hour at a time is good. Xxx

[Rooner999]

Sorry to hear about your mum cookiepuss - these things are really sent to try us.

Normal day today Evie / no funnies but I did pop into college for a catch up and ended up covering a class!! I loved being back there and feeling normal for a few hours; the students didn't bat an eyelid with my bald head and the normal banter resumed after a few minutes. It was lovely talking to them about nothing much rather than cancer. To them I'm Claire the teacher rather than the cancer patient...loved it 👍🏼

[Evie-S]

Oh Cookiepuss - I'm so so sad to read the news about your Mum. Sending you and your family lots of hugs and strength. If it helps to talk on here at all then do whatever it takes.

I can only echo WMJ's advice on here - to take one day or hour at a time. Try not to think about the next T and instead focus on your Mum, your family and you. Let the oncologist do the worrying and thinking for you.

Lots of love, Evie xx

[Cookiepuss]

Afternoon everyone - I agree that it's a lonely journey despite the support from family and friends. Like Running Girl I've found it much harder to bounce back after this cycle.

Unfortunately my Mum is also deteriorating quite quickly now so I've had to dash to be with everyone so I'm feeling particularly low at the moment.

I was supposed to have my pre-chemo check with the oncologist this morning but he kindly agreed to do it via telephone and was most sympathetic re the situation which made me cry.

Anyway after describing all my side effects he has proposed reducing the dose of the T cycles. The bad news is that I will need an extra one so instead of having 2 left it's going to be 3. However he did say that he will do another scan after two and then make a final decision. I'm just too worn out to think about it all.

The skin on my fingers now resembles that of tortoise legs, all wrinkly and tough.

[Snail888]

I meant to type thanks for asking about me. Cat is currently sat in the wind tunnel greated by missing door ans shes crying 😞

[Evie-S]

Glad to hear you are feeling good - and impressive achievements today. But not good about trampoline and cat flap - hope your cat is safely curled up inside? I seem to have started a number of jobs and not finished any of them. You have inspired me to get on with them! xx

[Snail888]

I feeling good. Spent all day sorted out the kids bedrooms. 2 have left home and 1 is away. Bored today and i was up at 6 - combination of weird dreams and this terrible storm. Trampoline has blown across garden and cat flat door blown out and broken!

[Evie-S]

Thanks Snail - I have chemo brain and just can't remember anything, apologies. Maybe it was Fiddlercrab who is having surgery next too. I do remember you are "only" having FEC. How are you today? xx

[Snail888]

Hi evie. I had a lumoectomy and reduction before chemo. Hopefully just rads to go xx