Starting Chemo in December.2012

[Guest user]

Hi Ladies, well I guess it I whooped too soon.... The last three weeks have been soo exhausting, seem more tired than ever. not impressed but guess my fault for thinking it was all over also didnt help that in that time 2 friends have been diagnosed with BC as well and 1 with a brain tumour. really had enough of f**king cancer.
Very impressed with anyone who can do 1 length of a pool let alone 40! i struggle to climb the stairs at the mo.
Also not impressed with consultant who at my followup appt decided that he would really like me to take Anastrozole? bit of a shock as had not been suggested before. I am afraid I told him no not noway....am I being silly? I think just had enough of SE. Any thoughts please......

[Mindy63]

Sp, I can understand the desire to get the tumour out. I thought of mine as 'the mother ship' and was relieved when it was gouged out. I can also understand you wanting a breather, esp if there's no hurry. Personally I would much rather not be getting any more treatment but am not brave enough to live with the consequences if it comes back. I'm finding the Herceptin absolutely fine (except for the vein finding missions every 3 weeks). However I cannot see me taking Tamoxifen for 5 years.
Hamley the funny taste is kind of hard to describe, it's sort of sweet-a bit like the sweetness of toothpaste without the mintyness. It's not causing any problems but I don't fancy 5 year's of it. Hot flushes are bearable. I am hating the cold moments. I have always been someone who hates being too hot and have never been bothered by the cold but I am waking up through the night with goosebumps. I never seem to have enough layers on when I'm out and about. I am very envious of Cybele's peacock watching moment. Not possible in Scotland at the moment where it is freezing and wet.
QD-Horrified at your news. Poor kids. Hope they get loads of support.
Cressida, your philosophy is spot on-let's all live life to the full. It can be all too brief!

[hamley]

Cress, thanks for your response to my other post, I'm not sure why I didn't put it on this thread other than that it was worrying me in the night and woke me up, that's never my best time for thinking straight. Anyway, I've been back to the GPs and saw a different nurse (I'm not sure why, the last one said I'd see her again, but no worries) who was really nice. I told her I was worried about how the dressing had been applied and she said 'no problem', she was VERY careful taking it off and it wasn't as bad as I had imagined, these things build up too much in my mind sometimes. I've got a shower proof dressing now too. I've got a very soft lump at the back of my armpit that shows more from the back than the front, she thinks this might be a fluid build up and has set me another appointment for next week to check how it's going on, so all's as well as can be expected. I'm being careful with the exercises, they're a lot more difficult after this mx than they were after the WLE and ANS surgery, my skin feels as if it's going to burst open. Did yours feel like that? I'm so pleased that you had a good holiday, it's just so heartbreaking to have come back to such a sad event.
SP, I don't know a lot about secondaries, but this must be so distressing for you. Listen to what Cress says, she has lots of good advice and good luck with the WLE, when's it going to be done?
QD, Claridges sounds fab, but sorry to hear the shocking news.
Maire, does the funny taste from tam last for long? The thought of a funny taste for 5 years is ominous. I'll be on it soon too, I hope the night sweats and hot flushes don't get any worse, they're only just bearable at the moment. Did you say you get cold flushes too? I do, I get so cold that I'll be wrapped up in cardies and shivering while OH is in a T shirt!
Lisalou, it's great that you're feeling a bit better and well done getting your pay etc sorted out.
Cybele, I'm so impressed with the swimming, I can't wait to have a go myself, but you'll have to pretend to be impressed when I anounce I've done two lengths! Have a great holiday, you deserve it.
Lolly, happy Birthday! I hope it's a good one.
Big one sided hugs to all.

[Cybele]

Sarah,
I have no appetite for any of these treatments, and deeply resent them all. I had a WLE, which was my first experience of surgery, and beforehand the surgeon told me that it would effectively be the same as a breast lift, and later he could do the other one to match. 'That's nice', I thought at the time.
Having now experienced surgery and its aftermath, there is nothing on earth that would induce me to have any more unless it was going to be life-saving. My surgery was straightforward with no complications, but I still felt as if I'd been very badly beaten up afterwards... I couldn't give a monkey's if one of my nipples is a bit higher up than the other. I find it astonishing that healthy women actually pay to have surgery on their breasts voluntarily.
If you've already been through chemo, which is traumatic enough, why volunteer for more punishment if there's no benefit from it? I think you'd be a lot better off getting strong again and enjoying the summer...
Talking of which, I spent a couple of hours in Holland Park today in the shade of some trees just reading, and enjoying the breeze, and looking at the trees and flowers and a peacock who decided to join me. It was lovely. Another post-chemo day of just being glad to be alive and no longer being injected with toxic chemicals.

[SP0]

Hello all,

I saw the palliative care psychologist yesterday (thanks Cybele & Cressida for confidence boost on this). It was helpful but the main tool they think will help me is meditation, which I really struggle with. Nevertheless, I'm waiting to hear if I can get a place on the next 8 week Mindfullness course.

Meanwhile, I have a decision to make re surgery. Unusually for a secondaries girl, I'm being offered a post-chemo WLE lumpectomy and a reduction on the other side to even up (courtesy of my insurer).

It's unusual because its obviously 'shutting the stable door after the horse has bolted' as it were. But in some cases, such as mine, where I've had a strong reduction in the secondaries, the multi-disciplinary team agree it's "reasonable" to do it, partly for psychological reasons. The downside though, is they won't take any of the lymph nodes, or try to get all of the disease in the breast, just the core of the remaining tumour. There's no evidence of any benefit in doing this, just the laymans logic that I might be better off without it.

I'm relying on Herceptin anyway to manage the secondaries, and I'm told that alone may continue to shrink the primary. So I'm considering waiting a few months. I realise this may sound mad, but my resilience and mood are low at the moment, so I'm afraid of putting myself through it, for little benefit. Thought I might like to try and focus on finding some joy in life instead.

I read of your various ongoing treatments with wonder at your appetite for them, but I presume it's driven by the momentum of desire to shut the stable door before the proverbial horse bolts! I'm finding coming to terms with secondaries a job all of it's own. Thoughts welcome.

QD, shocking news from your school, makes you wonder what's going on in the world, as if coping with cancer's not enough...

Sarah.x

[QueenDrama]

morning all
Maire - thanks for telling us about tamoxifen i have that joy to come soon yuk.
Lisalouw - glad you feel a bit better
Cress- thank you. Im going to live my life too!
wendy - any news on your other daughter?
Hamley - how you doing?
well yesterday was lovely. claridges was awesome and the meal sublime. even the veg was interesting!
i was shattered afterwards though and conked out on the train for 1.5 hrs!
today - oh my god today. what is wrong with this world? It is the GCSE drama practical at my school and my boss phoned me yesterday to ask where the paperwork I had lovingly prepared before being ill was! he phoned today - to tell me that the father of one of the candidates had been murdered last night. shocked doesnt even begin to describe how I feel. poor kid. I taught her sister 2 years ago. so S has now got to go through A levels and H through GCSE's . why?

QD x

[Cressida]

Ooops, that post posted itself before I had finished. Premature posting. Oh well, at least it seems to be there. I was going to go on and and restate that "palliative" is just a word - if the service you need is under that banner, take it. I have found the palliative care people much nicer than the primary people, tbh, maybe they just have more time.

Finally - HAPPY BIRTHDAY LOLLY. Hope to see you soon, xxxx

[Cressida]

Hello again,

Lisalouw and others losing jobs/sick pay/hubby's income - You can get contribution based Employment & Support Allowance (ESA) if you don't get sick pay and don't qualify for means tested benefits. It's about the only thing you can get for your taxes without having to be destitute, so please claim it. Government want to take it away and probably will do next year, so claim whilst you can. I was in a no work no pay situation, but I was far too ill to work. I couldn't have gone in even if they said you just have to turn up and we will give you a pile of money and you can go home again. I am not sure what happens if you are getting a small amount of sick pay. You do not need to endure dealing with the DW&P - just ring Macmillan. Even though you are all competent intelligent women, this does not mean you should try to deal with the DW&P by your selves. I am a health and social care specialist and I would not dream of it. Macmillan will explain everything and do the claim for you. It's just one of those wonderful perks of cancer, so why would you be stubborn and try to do it your self???

Sarah - Cybele is completly right about palliative care. Do not worry what it is called. I see the palliative care doc about my pain and I see a specialist psychotherapist (I am not as sane as I appear). I am really pleased to about your shrinking and disappearing mets - it is truly fab news - WHOOP, WHOOP!.

[Cressida]

Hello again,

I wanted to seperate that post in case it disappeared.

QD - great news about shrinking lump and I hope you enjoyed dinner with Gordon F*cking Ramsey.

Wendy - I am glad one of your daughters has got a negative result - I have everything crossed for your other daughter

Hamley - pleased you got through Mx no 1. Hope you are recovering - I saw your other post - hope that dressing is not stuck (ouch). Don't let nurses bully you - if you want shower proof dressings, you ask for them. Do you really need a dressing? Nurse whipped mine off pretty quick and gave me some to put on myself in the shower - it made me anxious to go without dressing, but it was the right decision and it healed quicker. Stitches stayed put for about 1 week, but no dressing after 3 days. Do the exercises gently - don't push it in the first week or two, whatever the nurses say, or you risk seroma (fluid build up). Major, one sided, hug for you, x

I am coming back with another post, but I can't write a long one and watch it disappear, x

[Cressida]

Morning Ladies,

Survived Keri's funeral. There were hundreds of people there, too many to fit in the chapel. I stood outside in the sunshine, with about 200 other people, and listened on speakers. I knew she was special, but listening to her family and friends really made it clear to me what utter b*llocks all this "fighting cancer" and "be positive" really is. She was "brave" and I only saw her cry once. She also "fought" with every possible treatment, even when they advised her to give up. She had enormous support from "positive" and lovely people. It is an insult to her memory to suggest that being positive and fighting hard will save you from cancer. Anyway, rant over. I am glad I went and it feels like a turnng point for me - I can be dramatic about how I neary died or I can live my life, because Keri really did die. I want to live my life. I am sure I will still fall to bits now and then, but I hope I can do more living than crying.

RIP the fabulous Kerri, xxxx

[Mindy63]

Glad you're starting to rally LisaL.
Welcome back Cressida. Hope the funeral was not too distressing.
I'm now on day 19 of Tamoxifen. It leaves a funny taste in your mouth, Not bad, just odd. Have I mentioned this already?
Just went off to google it and scared myself silly reading up on side effects of this drug. Liver failure or blood clots anyone? Wish I didn't have to take it! Sigh!

[Lisalouw]

Good morning ladies , I'm starting to come round abit now , just an upset stomach in middle of night and morning , also still have neuropathy in hands and feet , my feet feel like bruised sponges , 2 pair of socks and furr boots gets abit warm in the sunshine , not that I'm complaining of the sun it was soooo lovely yest , I went to my house and did abit of tidying in the garden , I contacted work about my pay and I was told I'll get my half pay and the job centre may give me some to help , I phoned them up to be asked a million intrusive questions and they expected me to know mortgage ref numbers and dates from over 15 yrs ago , I was knackered after and mentally drained , don't know if it's worth it to be prob told I'm not eligible for anything as I've got some savings , I didn't understand alot of it anyway as my brain still isn't functioning at all , ill have to use savings when I'm on half pay but I wanted to drop a day when I go back to work so I wanted to get all debt cleared , working full time and bringing a toddler up on my own who has only just started sleeping through made me into a shattered stress head which I can't help thinking caused all this in first place so I want to make some life changes after my treatment , I've got the 2 day diet book , read abit and going to give it ago , not yet though , when my mouth is ok and my taste is normal I'm having a binge and a wine or two , not had a drink since dec , I'll be wasted after two ha ha , the sun is shining again today so far in Yorkshire yeah xxx
border, will def get the gel next time I'm in town , I always use cream on my boobs anyway so hopefully that will help x
QD, it's great news about mr lumpy , I've also got surgery end of may so we prob got rads similar time , I used corsodyl for my ulcers and it helped thank you , how did mass go x
hamley, so glad you ok after your first mx, how you feeling , not too sore I hope x
sp, great news on the ct scan x
mz, happy birthday for when it was , hope you had a nice day x
lolly, I too had the dreaded piles, my doc gave me some cream that numbed and had steroids in it, can't think of the name , it took a few days to feel better , I got them on my low wk too x
cybelle, yeah to back in the pool, I was in sunshine yest but no redness on face but I had tax and C so prob diff x

[Mejane]

I'm not a regular poster on the forum every day, but post from time to time, but I am an avid reader!

Everyone who posts here has helped me tremendously in terms of information about BC since I started my treatment and this pretty challenging and difficult journey we are all on. So general thanks to everyone who posts here, both for all your information, help and support - and generosity with your time - I know how long it takes to successfully get a post up on this forum at the moment! For the valuable information you all give every day, very very many thanks. and the poems too, Poems Gallore. The very best of luck to you all. XXX

[Mejane]

I'm not a regular poster on the forum every day, but post from time to time, but I am an avid reader!

Everyone who posts here has helped me tremendously in terms of information about BC since I started my treatment and this pretty challenging and difficult journey we are all on. So general thanks to everyone who posts here, both for all your information, help and support - and generosity with your time - I know how long it takes to successfully get a post up on this forum at the moment! For the valuable information you all give every day, very very many thanks. and the poems too, Poems Gallore. The very best of luck to you all. XXX

[QueenDrama]

Hi all

Cres - welcome back!
Cybele- ta for the tip re the sun. my breast nurse had mentioned that to be fair but i'd cheerfully forgotten - chemo brain!
My op is May 23rd eek! Tomorrow my sister is taking me to Claridges in London where we are booked for a 3 course meal at the Gordon Ramsey retaurant. Cant wait! just hope I stay awake!!!!!

qd

[Mejane]

Cybele - just to say I also have a bright red face from the sun - in the UK! Like you I had no idea about sun sensitivity to FEC, so will be slathering on the factor 30 from now on! Thanks for the tip. I expect I am also a bit red from the steroids, but the beacon of a face I now have is far worse than normal, so gardening in the sun without sun cream is a definite No-no from now on!

Just to say also that I have enjoyed reading your blog from the beginning and would like to thank you for your input to the calling all cold Cappers thread which I started a while back - I was unsure whether to keep going with the CC, but you and several other girls positive comments about it encouraged me to persevere. Many thanks. I have put an update on the Calling all CC thread on the forum, I am post Fec 5 and so far am lucky have kept most of my hair.

Have a great holiday and best of luck with your rads. I'm not too far behind you - and like you were, am counting the days till the end of this 'feccing, fencing FEC! ;( x

[Cybele]

Went out in the sun yesterday, for a total of about 30-40 minutes walking to and from the pool and shops, and in the evening my the skin on my face was red and hot and itchy and my nose bright red.

Just googled 'chemo and sun sensitivity; , to find that chemo, especially Fluorouracil, makes you extra sensitive to the sun, and they recommend great caution and SPF factor 30 sunscreen. This may last for a couple of months after chemo. I'd better find my sun hat.

Am posting this as a warning, because I had no idea about this. My skin is quite pale anyway, so maybe it's just me, but it really wasn't THAT hot yesterday..

Right, now off to the hospital for the first time in 3 weeks for my postponed rads planning meeting. Hopefully I won't start crying like I did in the first, abortive,meeting, but that was on day 5 of FEC6 - what was I thinking to agree to that?

[Cressida]

Morning Ladies,

I have returned from my hols and feel sooooo much better for it. I found it exhausting being a tourist and visiting all the sights, so we slowed it right down and just drove to a variety of beaches, admired them, drank tea and ate scones and then returned to the hotel sun terrace and broke into the G&T whilst watching the action in the yacht marina. If you have not had a holiday since you started treatment - what are you thinking???? Get one booked. It could save your sanity.

I have read your posts and I want to reply to many of you, but today I have to face Keri's funeral so I will post later. I just want to thank those of you who wished me happy holidays and happy birthday. I have had 2 birthdays under the shadow of cancer, but I only have to think about Keri and I know that every birthday is an achievement to celebrate. So, to all of you have come this far with me - well done on the being alive thing, and I really hope it is becoming a bit more enjoyable.

Speak to you all soon, keep on keeping on, xxxx

[Mindy63]

Lolly-I had the dreaded piles but was just too embarrassed to do anything about it. It wasn't painful though. I hope you're managing. Not long to go for you now.
How is everyone's hair regrowth? I have bristles of black and white. The white bits are at the front so still look quite baldy. Hair is also thin so scalp quite visible. Elsewhere the hair is re-emerging. Sadly. Have had to wax/shave. Only realised this after trip to pool. Oops.
Building myself up to a swim now, though feel washed out after another meltdown with teenage son.

[Cybele]

Hello, all.

I've just been to the pool and swum 42 lengths, and then walked home in the sunshine feeling really really happy and, like QD the other day, just so glad to be alive and to have finished chemo. Feeling so much better psychologically this week - my brain has finally accepted that it is actually OVER. This has taken a while... and the mad bouts of weeping seem to be over. Had a few painful days after the tooth extraction last week, but that is much better now, and it's so brilliant just to feel physically well again. And that awful weakness has gone - touch wood. And I'll be off to the Aegean a week today!!! That will really draw the line under the chemo..

Lolly, sorry to hear you're feeling so rotten, but it's not long until the end now. BIG HUG xxx and congratulations on the hair growing back - that's brilliant! I think my rads will be starting in the last week of May - I get back from Turkey on the 20th, and it should start a day or two after that - - so we will be going through rads together.

QD Sorry, have lost track of everyone's treatment- what is your op going to be?

[QueenDrama]

Morning all
Lolly - phone your doc and ask for proctosedyl. they are amazing. I too had very painful bleeding piles and the pessaries sorted them out. you have to keep them in the fridge and they are sooo cool when you insert them!. Happy brithday for Friday!

I met my surgeon yesterday and my op will be May 23rd. eek!!!!!

QD x

[lolly123]

morning Crackers,
Its very quiet on here where have you all gone? Just want to ask has anyone suffered from Piles and if so any tips? i am waiting for a doctor to call me back as at my lowest week and dont want to risk going in and catching something as all going well with FEC 6 dont want to tempt my luck, i am in real pain with them they are making me cry they are so painfull, this Chemo has a lot to answer for.
I have had my dates through for Rads i start on the 20th May and last one on the 10th June then its all over PHEW!!
Apart from that the sun is shining, treated myself to a swing chair for the garden, cant wait to try it out with a good book to hand.
And its my Birthday on Friday, gona be 52 and my hair has started to grow back, all fluffy at the moment not sure if its gona be grey or my brown but time will tell.
i Hope you are all ok and looking forward to the future when all this is behind us.
take care luv and hugs Lolly
xx
Just read this back and it a bit of a mish mosh post but thats me all over lol x

[Border_Collies]

QD your welcome to the tip and how good it sounds to hear someone say It feels good to be alive. Glad you had a good weekend.

[Mindy63]

Glad to hear you had a good day Qd. It's great getting back to normal and relishing feeling a bit more human.

[QueenDrama]

Afternoon ladies

I've had alovely day! My family went to Stourport - On - Severn. We played Crazy Golf (daughter won son lost!), went to the fair where the kids went on the dodgems and we ate doughnuts , walked along the river and had a pub lunch. it feesl good to be alive!

Thanks for the tip re aloe vera Border Collies!

QD x

[Cybele]

Border Collies - thanks very much for advice - will start straight away xx

Went to Holland & Barrett today, and they have a special offer on where you buy one product and get another product for 1p
The large Aloe Vera gel was £6.99, so I got 2 for £7, which seemed like a good deal!

Will also stock up on anti-histamines.

[Border_Collies]

Cybele - you can't start with the gel too soon. When I had my WLE back in November my BC nurse rang me at home the next day and told me to start creaming my breast immediately as it was important to get the skin in good condition before rads. Then I was using aqueous cream until I discovered that it thins the skin by 10% so I went on to Dove body cream or anything else I had to hand. I've creamed religiously since November. Didn't use the Aloe Vere Gel until the morning of rads and have continued with that.
Another tip Get some Piriteze in stock. The day after I finished rads I was bathing before bed and was just about to use the gel when I noticed the beginning of a rash - only about three spots at the time. Went downstairs for a while and the small rash started to itch. Didn't want to scratch at it and make it raw so took a Piriteze. Within 20 minutes the itching had gone. Now take one each morning and the result is no rash, no redness and no itching, but if I'm a bit late taking the antihistamine the itching is back. I'm obviously still cooking inside as my onc warned.

I've had two days of dreadful fatigue the sort that makes your limbs too heavy to move around. Feels ok today and the fatigue was my own fault because the day after rads I felt so good I did loads of jobs, went out and did some dog training etc and then suffered for it for two days. Moral to this story is I think take things easy for a while and just because you feel good don't go mad like I did.

[QueenDrama]

Morning all
I actually browsed the shops yesterday - like normal people do and today i'm going to mass for the first time since late November. I'm really sad that I missed Christmas and Easter. The other parishioners have been a huge support and I cant wait to see them all !
Hamley - well done on MX hope you recover well
Lisalouw - hope you feel better soon
Wendy - enjoy Norfolk
Maire - hope the chest pain isn't sinister
sp - well done on mets shrinkage
MZ - Happy Birthday
Cybele- im an emotional wreck too. ! hopoefully we'll both settle soon.

x QD

[Cybele]

Sarah

just to say I've read quite a few of the threads on here about living with secondaries (in case it comes back, I want to be prepared) and was cheered to find there are a number of women who have been living with secondaries for many years - I was struck by one comment from an oncologist that with so many treatments available now in some cases secondary breast cancer can be treated as a chronic disease, rather than an immediately life-threatening one. And given that you've had such a good result with tumour shrinkage and disappearance, it doesn't sound as if you need to be fast-forwarding to palliative care...

I can totally see why the 'palliative' label would do your head in, but they're not just about end of life. I wouldn't worry about getting psych support form the palliative care team - the point is that they're good at what they do - let's face it, there's not a lot of psych support around on the NHS. When Cressida had cellulitis and was in terrible pain, she was referred to a palliative pain specialist, who was fantastically good and sorted her out.

I know exactly what you mean about only the chemo making you feel ill - I was very fit and had never felt healthier when I was diagnosed, and being turned into a quivering wreck by the chemo was really hard to take.

As Maire said, the psychological side of this seems to be coming to the fore with all of us as we finish chemo. My emotions continue to be all over the place. I can't quite believe that the chemo is really finished, and I also can't believe that I've actually had cancer, and chemo. Ah well, when I start the rads in May that will remind me all over again...

Lisalouw, sorry to hear you are feeling rough - SOON it will be over xx

MZ -Happy Birthday! and congrats on finishing the rads - what excellent timing 🙂

Maire - your cold flushes made me laugh - I hope I get those! You are our Tamoxifen canary - if you see what I mean - and am reading everything you write about it with enormous interest..

Border Collies - VERY cheered to hear that your rads experience has been so postive - and Maire's - that's making me feel less nervous about it. Am so hoping this will be the one treatment my body reacts well to, and am DETERMINED it will. Going to go and get my Aloe Vera gel from H & B later on this morning. I reckon I'll start it a couple of weeks before rads, to get my skin well-prepared.

Hamley - wishing you a very speedy recovery xxx
Wendy - have a good time in Norfolk xxx
Lolly happy to hear FEC6 is proving manageable xxx

QD excellent tumour shrinkage news - yay!!

love and hugs to all xxx

[Lisalouw]

Morning ladies , I'm still feeling rough , I've just finished my gcsf injections last night so I normally have a few days of muscle spasms and pain but not normally this bad , it normally wears off by sun so I'll see what tomorrow brings and if no better I'll have to ring my chemo unit , which is a 40 min drive away in Sheffield , I have my chemo at my local hospital but any problems it's the main one in shef you contact , mouth not as white today but still sore where the ulcers are round the side I'm using ambesol now, thanks for the advice ladies , I've never had it this bad before and I had 20% reduction .
Lolly , i havnt seen much of my bc nurse and they don't work wk ends , I'll def ring the number they gave me in onc tomorrow if I'm no better , I'm keeping a check on my temp , hope your doing ok
catch up with your posts when I'm feeling a little better , lv to everyone xxx

[Guest user]

Whoo whoo rads finished tonight.
Herceptin till Jan 14 and 4 years and 11 months of tamoxifen to go.
Make the most of the paid sick leave. I had only just started a new job so had to go to work throughout the whole sorry experience. No work, no pay so no choice.
Made the whole thing go by very fast.
My turn for the birthday weekend this weekend. Ist born has come back from uni to celebrate with us.
Best wishes all, we are well on the way.

[SP0]

It's good to hear some of your stories of moving on.

The break in Spain gave me some distance to reflect - which triggered more emotional / psychological outpouring. Shame the weather wasn't better. I hadn't realised it could be foggy in the hills, when it's sunny at the coast! My new kitchen / diner looks great, but the builders inevitably hadn't finished, so I've had the self-inflicted pain of continued work in the house on return this week.

New news from me is my ct scans showed the lung mets have gone and the liver mets virtually gone (largest was originally size of tangerine). So now surgery (previously discounted) on the breast tumour is being reconsidered (shrinkage from 3.4cm to <1cm)

I've moved onto my Hercepin only regime and onc is trying to see if Pertuzamab (Perjeta) could be added. Waiting for conclusions on best plan to control oestrogen (Tamoxifen / other drugs / surgery to remove ovaries).

I look and feel much more well, but am struggling with the menopausal hot / cold sweats. Most difficult for me is trying to get my head around my situation. My onc is unable to give me any clear prognosis owing to secondaries. I'm finding it difficult to reconcile the good news about their retreat, with the message that with secondaries, any treatment is palliative and I could stop responding to Herceptin at any time and have them regrow. I've been referred for psych support - but that's provided by the palliative care team at the local hospice, so I struggle with that too! I wasn't ill before diagnosis and as far as I'm concerned its only the chemo that's made me feel ill since.

So much to catch up on from all.

Marie & Cybele - very impressed with your first swimming attempts. I've been trying to work up the momentum to go, but been kind of kidding myself I'm still too weak, so you're inspiring me.

Lisalouw - I too used Corsodyl, and really struggled with oral thrush all the way through my chemo. I used apple cider vinegar (gargle with a tsp in a little water), once the ulcers are gone.

QD - great news on lump shrinkage. Mine's similar and now I've been offered a surgical review, to see if it worth doing. Before chemo, if I hadn't had secondaries, it would have been a full mx, so we'll see...

Hamley - good to hear positive story of first mx, we wait to see if I go that route too.

Thoughts go out to Lolly and others still progressing through SEs after last chemo. Sorry to hear various tales of problems with work / jobs / pay. Its so hard to deal with other changes on top of the insecurity bc brings. We've all done so well to get this far.

Sarah.x

[Mindy63]

Hi everyone,
Nice to see so many people coming to the end of their treatment. I'm getting back into the swing of real life but having ups and downs along the way. I woke in the middle of the night to the thought, "That's right I've had breast cancer". It was as though I'd only just realised. I think the next year is going to be a bumpy one emotionally. It's true we cope one day at a time during our treatment but then we have time to reflect and that can be tough. I felt quite revived by my trip to Rome, then a bit deflated when I went back to work because a) a much loved colleagues is leaving-we're only a team of 4 and she's the person I have most in common with in terms of outlook/work ethic, so work is going to be a very different place....and b) Strong chance of closure by June 2014. This made me feel quite anxious for a few days and I was beginning to fear that maybe the tamoxifen side effects were kicking in early. However, working with young children is quite rejuvenating so by the end of the week I'd shrugged off that worry (what will be, will be) and now I feel back to my old self.
Tamoxifen is def giving me a dry mouth, leaving a slightly sweet taste (I think it's the coating) but after taxotere, I scoff at it's feeble attempts to affect my mouth. I am getting clammy moments (a continuation of chemo side effects) but that's really quite bearable. Actually, I'm suffering more from cold flushes. I am absolutely freezing at home-despite astronomical gas bills (cancer aint cheap). So only 2 weeks into the pill popping but so far so good. I'm not being complacent because I think things get bad around month 2 and by year 5 people seem to be quite worn down. I may not take it that long if it gets bad though. I was only 6/8 for oestregen dependency (7/8 for progesterone) so feel I can play dice with the number a wee bit.
On the down side I've to go and see my oncologist this weeks because of chest pains I had after last herceptin, I'm keeping everything crossed that it was a flukey moment because herceptin is the main weapon in my armoury.
Qd-sorry to hear about your husband. Fingers crossed for him. A job loss is hard to take, particularly as we get older and options narrow. Brilliant news on your scan though!
Wendy-Hope the news is good for your daughter. I haven't gone down the genetic testing route yet but it is lurking along the line somewhere. I also have daughters (and a son) and I could not bear for them to ever have to deal with cancer.
Lisal-Sorry to hear about your nasty side effects. I just hope that at day 9 you are about to turn the corner. I found salt water very effective in keeping my mouth ulcer free.
Cybele-Sorry about the dental hell. That is just not one bit fair! Glad your swimming has recommenced. I've joined my local Virgin Active club and have done 2 sessions, 50 lengths each time (with breaks for the jacuzzi and steam room). I'm not a strong swimmer. Never learned to swim properly, just taught myself-so it's head above water stuff and probably not gaining much exercise wise but feels good anyway. Got a call from one of the young pups at the club to ask me when I wanted to book in for my 'programme'. I think they meant on the exercise machines. I think that may have to wait till I have hair because I don't think a wig and beret ensemble would work on the running machine alongside all these young girls with their bobbing ponytails.
Good luck with the radiotherapy Lolly. For me it was an absolute breeze. My skin barely changed colour and i found it all very relaxing.
Hamley-So glad you've got your 1st Mx over. Must be quite a relief to have that cancerous area gone! Take it easy with your recovery and be good to yourself-'lots of treats' would be my prescription.
..............and to Cressida, out there in the land of the long-lashed cow, hope you are having a blast!

[Wendy56]

QD great news re shrinkage makes the chemo worthwhile when it has done its job.

Hamley so pleased you have got step one over and you can tick it off one step at a time although think I am mad just jumping in feet first and taking the whole lot in one go. We are all different and hopefully I have made the right choice for me as this op is number 9 in my lifetime so just want it over it has been a long time since December and end of chemo in March.

Off to Norfolk now for some chill time.

Take care everybody x x

[Border_Collies]

QD so pleased for you about the incredible shrinking Lumpy - must make you feel very positive. Also sorry about your husband's job - not a good time to lose it. However I'd be reluctant to ask him to sell his body for a living as he may never want to retire!!
Well done Hamley on getting through the op to become a uniboob. I didn't have to endure a mx but after the WLE I had this feeling of thank God that's gone - normal boob again. I think I'd have felt just the same about a mx. Anyway you're a third of the way there and rads are quite easy to endure but your journey has been such a long one hasn't it? Hope the op mends well. Take it easy.

[hamley]

Well, I've got through the first mx. It was good that I did have to go in just in case because they re-did my bloods which were OK in the end. I'm now uniboobed but that's alright because I feel that a large part of the threat has now gone. It's been quite painful, but the nurses etc. have been very kind. I had to stay in for one night, but that was OK too. My scar is very long, far more than I expected, but the GP nurse who changed my dressing this morning said it was quite a neat one.
I've got my appointment with my onc to plan my rads in May and once that's done I'll have my 2nd mx. Then I'll be done until the recon sometime in the future. I'll be so glad to get to the end of it all, I'm sure you're all with me on that!
QD, great news on the shrinkage of Mr Lumpy, he's less than 50% than his former self, that's got to be good.
Border Collies, I'm defo going to get the Aloe Vera Gel, and congrats on finishing rads.
Lolly, well done finishing chemo. I think I'll ask for a rose or a pink ribbon tattoo when I have my rads!
Cybele, I hope the tooth is feeling a bit better today. I've got to venture to the dentist soon for a filling that fell out and a tooth that crumbled during chemo. I'm not looking forward to it.
Lisalou, I'm on no pay after 3 months full and 3 months half pay. I get stautory sick pay now (about £75 per week, better than nothing), but my company pay this and claim it back themselves. I didn't have to make a claim at all.
Wendy, great news about your eldest, such a pain thay your youngest has to come back from her honeymoon to be faced with these results whatever the outcome. I hope it doesn't spoil her holiday. Good luck with the pre-op, more blood tests, I'm sure you're sick of them.
Love and hugs to all.

[QueenDrama]

Hi Ladies

my post disappeared!
I had my scan yesterday. Mr lumpy has shrunk by 2.2 cm! theres just 1.3 cm left for the surgeoins to deal with. I meet them on Monday and shoiuld face the chop sometime in may.
Borde rCollies - i was indeed being sarcastic about my husband losing his job. he is 60 and had a heart attack 2 years ago. not eaxactly prime candidate material. he'll just have to sell his body 50p a time should do it!!! re your dry mouth trey glandsosne - artificial saliva.
cybele- boo to tooth pain. hope it goes soon.
Lolly - youve done it Hoorah!
Hamley- are you ok?
Wendy - fingers crossed for your daughter. I too have surgery and rads so we might finish together!
lisalouw - check your contact of employment. some places do half pay some dont. re the mouth i found corsodyl mouthwash invaluable.

QD x

[Border_Collies]

Lisalouw I got my Aloe Vera Gel (must be gel and not cream according to my onc) from Holland and Barrett and make sure it's the 99% pure stuff. Still had no skin reaction to rads but suddenly fatigue has hit me like a train. Every limb feels like lead and I could sleep for England.

By the way it's not my husband who has problems with his job I believe it's QD's. Hope your mouth improves. I sympathise as mine played me up all through chemo and now 6.5 weeks post chemo I still have exstremely dry mouth which prevents me from talking for any length of time, like on the phone. Think OH secretely pleased!!

[lolly123]

Morning Crackers.
well i have had my appiontment to get my Tattoos, they are like Black Heads not very nice, but it has to be done, i am feeling quite good for SE on FEC 6 day 4 just a little queasy but thats to be expected.
Lisalouw, i had the sore mouth just like you are describing, had to ring BC nurse and had to go and show them to her, which nearly ended up with me in hospial again, but i was lucky the ONC doctor was there and prescribed me DAKTARIN gel and steroid mouth wash, which cleared up quite quicky, but give your BC nurse a call just to make sure your body is handleing the FEC, i had to have my last two reduced by 25% which has been much better for me.
Hope everyone else is ok and coping, looking forward to us all meeting up in the summer.

take care hugs to you all
lolly
xx

[Cybele]

Hi everyone - thank you for all the nice things you said about the blog.
I should have posted here earlier in the week when I was feeling great - which I was , Monday - Wed morning. Two trips to the swimming pool ,and on the second one I did 40 lengths -= I kilometre. Was very surprised and pleased I could manage that so soon.

Then Wed afternoon i went and had my tooth out, which I REALLY didn't want to to do just when I was starting t ofeel good, but it had to be this week in order to allow enough recovery time in case anything bad happened, before I go to Turkey in 2 weeks time. Extraction was fine, pstraightforward and painless, but the aftermath has been horrible. A lot of pain and my cheek is all swollen up, but I gather both of these things are entirely normal, so I've just got t okeep scarfing down the painkillers and wait for it to heal.

It should be fine in a couple of days, but it's knocked me back: it was just so great after five months of FEC to finally start feeling physically OK again, and now it feels like back to square one.

I HATE TEETH!!!

Big hugs to all of you who still suffering grom the chemo - Lisalouw , that sounds awful, may it soon pass xxxx
lolly - hope you're doing ok after FEC6 - it's hard to go through the se's again when in your mind you've finished xx
QD - hope scans are ok
Wendy, Hamley - good luck with ops
Maire - how is the tamoxifen going?
And big hug to anyone I've missed out - sorry, have lost track of all the posts in the last few days

[Wendy56]

Lisalouw

Chase the half pay don't let them get away with it. We all have enough to deal with without the worry of money and work. Your right don't know how anybody could work through this crap.

Hope the SE ease soon for you and just remember tax although evil does do its job for us usually. Good luck for op oat end of May.

I stil have surgery and rads to go so you might not be the last one finished x x

[Lisalouw]

Morning ladies , I'm on day 9 of tax he's making sure I don't forget him for a while , I ache everywhere , I have an upset stomach and my mouth and throat is coated white with thrush and for the first time I've ulcers down both sides of my tongue which is knocking me sick they are so sore , how can little things like that be so painful , I'm using diflam and gargling co codamol, any tips ladies ? I have my cavity shave end of may so I hopefully should have got my strength back by then, I'll have the dreaded week wait for results , then I'll start rads so I might be the last to finish , I'm dreading the surgery and results waiting with a passion .
Lolly, congrats on your final chemo, hope the ses arnt too bad x
hamley, hope everything went ok and good luck x
border, yeah on final rads but really sorry to hear about your husbands job , life just keeps throwing crap doesn't it , what are his prospects for another ? Where did you get your aloe Vera gel from I'll def get some when it's rads time x
QD, good luck with the scan x
oh just got a letter from work saying my sick pay is coming to an end and they have gave me job centre number to ring to claim , I thought I just went down to half pay after 6 months , I'm going to ring them up but just wondered if anyone had the same thing , I don't know how anyone could work with this , no way could I have , love to everyone xxx

[Wendy56]

QD hope scan ok
Hamley wishing you luck with op hope it is going ahead for you
cress thinking of yo on your hols
Lolly you have been set ree from the chemo train well done.
Off shortly for my pre op assessment. Eldest daughter got her BRCA results and she is clear. Not celebrating yet as youngest daughter still waiting for hers and she is away on honeymoon.
Hope everybody else is plodding along nicely we will all soon be there standing on that finish line
Love to all
Wendy

[Border_Collies]

QD - good luck with tomorrow's scan, will be thinking of you. Does "thank you God" mean that you're pleased that your husband will be jobless at the end of May or just the reverse. If the reverse then I'm sorry to hear the news. Why has my text suddenly gone into italics? Damned computers, I think mine's out to get me!!

[QueenDrama]

Afternoon ladies!

Lisalow - feeling better? I hope so.
Cybele- thanks for the blog.
Maire - any news on the closure?
Hamley - how were your bloods? Sorry to hear about your place closing.
Border Collies - well done on finishing the rads and good tip re Aloe Vera !
Lolly - well done on last fec.

I have my scan tomorow - eek! and my husband will be jobless at the end of May. Thank you God

QD

[Border_Collies]

Lolly well done on getting the last FEC in the bag and getting out on parole! Yay to freedom - hope the side effects aren't too depressing and that radiation goes well. I found that a breeze compared to FEC.
I too, out of all Cybele's blog nights, remember The Northern Lights. Clever Cybele - the perfect exit for a desperate person. Certainly made me think - far superior to Dignitas!

[Mindy63]

Well done Lolly. Was just thinking about you today and wondering how long you had to go. What a journey it's been through all that early fear and worry. Good luck with the radiotherapy.
BC-I have a mildly dry mouth. I'm thinking it's the Tamoxifen (10 taken!)

[lolly123]

Hi to you all,
i have had my last FEC today it feels wonderful, go to see surgeon tomorrow and my first RAD appoinment on Thursday for my planner, so it all go still this week but i can now see the light at the end of the VERY long tunnel. I hope my SE are the same as FEC 5 as it was the best one so far. I am feeling a little queasy now so best i start with the tables, for the last time WHOOP! WHOOP!!

Good luck Hamley will be thinking of you tomorrow, hope it all goes well.

Cybele. just want to say a big thank you for doing your Blog i read it every night before i went to bed, the best one for me that i read was about the Northen Lights very inventive, and the sister with her Rats i loved it all but those two stick in my mind.

hope all the rest of you are managing the best you can, sending love & hugs to you all
Lolly
xx

[Wendy56]

Hi Hamley hope all goes well tomorrow for you. Will be thinking of you

lots of love Wendy x x

[Curlytop]

Hi Cybele just want to thank you for taking time to write your blog. It as been brilliant to read it through what seems to be age. It must have been so very difficult for you at times. I have written a personal diary of my journey not only from diagnosis through treatment but the affect the whole episode had on my husband who has alzheimers. Just writing down how I felt seemed to help me.

Well done with the swim keep it up and very best wishes to you and yours xx