Hi Ladies,
I am going to try and reply to people personally today – but will apologise now if I forget anyone. I have read all posts but not replied for a while.
Sandra , Glad you are home safe, but sorry about the delay. It can be incredibly frustrating to have to keep waiting. I will keep my fingers crossed for rapid results and good news. Xx
Gill , Rant away – you have every right. Why don’t you phone your oncologist and find out what is going on and have a good rant at them. Bottom line – they are responsible for your treatment – ask why they have changed and shortened!!
Jo , I too am going to ask to be genetics tested – I have decided if the NHS won’t do it I will pay to do it privately. I would just rather know one way or another. My sister on the other hand doesn’t want to know and even if I prove positive isn’t sure she’ll get tested. She has booked in for a mammogram though and although not of screening age they have considered her more at risk so she’ll have one of those soon. I think I will be OK waiting for the results – but going to get them will be a nervous day. I was going to ask when I picked up my tamoxifen.
I asked about having a tablet break and starting tamoxifen after radiotherapy and was told ‘no’. So I start them in 2-3 weeks time. Funny how we all have different information on that.
BUM INFO
Well it’s been a mixed weekend on the bottom front. I had diarrhoea on Friday night that had me sobbing again. But on Saturday I did a poo that was, although painful, nothing in comparison to previous and I had thoughts about getting better (but don’t want to count my chickens). So I have started using all the arsenal of medication again to hope that it will speed it on its way and get it mended. I was told to give it 3 weeks to get over chemo and 4 weeks to heal. If it was still bad after this time to go back to my GP for more medication. There is one treatment left they haven’t tried which is meant to give you killer headaches – so fingers crossed it gets better. I have to take pain killers at night to be able to sleep so I really would like this to be over.
Had a lovely weekend with friends and went walking around Silchester Roman ruins. The weather was a little unsettled, but nothing to what we thought it would be. It’s the longest we’ve walked the pup and he slept all evening. He’s still a little tired this morning. My OH was a grumpy git – he was worried I was going to overdo it and make myself ill. I feel fine. We had homemade burgers for tea and drank far too much wine.
I hope you all had a good weekend too.
Alison xxx
Ok ladies warning another RANT coming!
went to my second rads on Friday night, appt at 19.10 in Toulouse so left home at 17.30. Traffiamazing react as ycouldn’t imagine being rush hour but the lovely ambulance taxi driver got me there just in time. (Yes in france I get free transport and they wait and bring me home, lucky I know)
started rads and as they scan me each time before hand they had to stop three times and re try until consultant came in, she’s lovely, and said we cannot carry on and she needed to have a chat. Got dressed went and had a chat to be told that she is not happy with my tattoo alignments and I need to be re planned!!! So all appts cancelled new telephone call on Monday with next planning, then wait for new apps and start date. So god knows when I will start!
IFHC I want my life back please!
Rant over - karen xx
That should read traffic terrible as you could imagine being rush hour!
Rant now about predictive text!! 
Hi Vals
Karen W I think you are entitled to have a rant. I wouldn’t be too chuffed to be messed about like that. On the other hand it’s better to have it changed and it be effective than to go with the original plan and it miss half of the area.
Alison lets hope the bottom situation is improving.
Still got a mouth full of razor blades but the steroid tablets & Difflam seem to be keeping it under control. It is definitely nowhere near as painful as last cycle.
Have managed two days of my fast, and while I do get hungry I am going to try and continue as the health benefits do seem to make it worthwhile. For me I find it easier to have three little snacks which total 500 rather than missing a meal completely. I have been using the app ‘My Fitness Pal’ to keep a fairly accurate count but I suppose it would be easy to go over by 50 cals without even realising it. Karen W I know you are doing the same fast as me (500 cals, 5:2), how are you finding it? Alison have you started your’s yet? If so, hows it going?
Love to you all
Dyane
FEC 100, 6/6, day 12, Antrim Area Hospital
Jo, if I’d have decided to have the 25 rads, our hospital has a patient hotel where I could have stayed for the full five weeks (I discussed all this before saying no rads). It’s on the hospital campus so would just have had a couple of minutes walk to radiotherapy department. Well, for most people it would be few mins, for me it would have been half an hour!! 
Karen (Wattie) I also get free transport, but as you may have heard me compleain before, it isn’t very reliable about getting me home. Will be using it again on Wednesday when I go for bone density scan!!
Alison, I do hope your bum starts to get better soon. Your suffering seems to be a bottomless pit 
- sorry!
I feel as though I’m almost back to normal (whatever that was). But occasionally feel a pain in the area just above my scar, the bony part. It feels a bit like a bruise but there isn’t one there. None of the lymphs in my breast area were affected, so don’t think it’s connected. Will mention it to onco on 16th July if it’s not cleared up.
So many of us have been extolling the virtues of our various OHs. So I thought you might like this little poem I wrote a few years back:
_ Shopping List _
_ Bread, potatoes, two slices of ham. _
_ A tin of beans and Strawberry jam. _
_ A pint of milk, a pound of cheese _
_ oh! I’d also like some Cornflakes please _
_ and don’t forget the paper too _
_ and some soft tissue for the loo. _
_ A packet of Bold, a bottle of bleach. _
_ Can you manage all that? _
_ You are a peach. _
Love Kath xxx
Evening ladies,I tried posting long posts twice yesterday evening and lost the lot both times,said redirrecting you to another page aaaaaargh!!! gave up.
I am so excited I could actually feel fuzz on my scalp this morning 
Hubby said he thought it was growing,even rushed downstairs for him to have a look,and the curtains weren’t drawn!!! I never go into the lounge without my hair in case someone walks by and looks in.Only one sister and three friends have seen my head.I just hate being bald,but at least it’s been worth it.ALWAYS LOOK ON THE BRIGHT SIDE OF LIFE 
Kath your poem is so for my hubby.Although he has to have a written list,never been good at remembering things.Bless him
Oh and Kath,the way your nails are going you are going to have trouble picking your nose 
Sandra I hope the painkillers are working now,you poor thing,what a nightmare.xxxxx
Alison your poor bottom,it has been one of the worst things for you to cope with.Hope it’s easing xxxxx
Dyane your sore mouth sounds painful,glad I was lucky not to suffer that,hope it’s getting bit better.Will help you lose weight for sure.xxxx
Karen Wattie,nightmare re tattoos,hope mine will be ok,they took ages measuring and remeasuring.Thought I’d wiped them off when came home and wiped pen off with makeup remover wipe,they are so tiny,one on breastbone right on a freckle.Will probably get you started asap.xxxxx
Well going to keep fingers crossed site doesn’t crash on me
Wishing you all a pain free and sleep easy night Love and Hugs Chris xxxxx<3((()))
Sympathy to all of you who have got appointment issues just now. It’s so frustrating isn’t it? I’m having my Hickman line out on Tuesday and a chest XRay on Wednesday. That’s waorganised by my own GP when I saw him on Friday. He was surprised I haven’t been xrayed continuously through chemo and I’m stressing because I have a constant cough.
Hey ho! Yet more waiting on results. Nobody’s told me when my Tamoxifen is to start. Don’t know if I have to wait 'till after Rads, which will in turn have to wait until next surgery has healed. It worries me that my hormones are leaking out and feeding cancer cells all this time…
Sorry not to make personal mentions but am soooooo tired and have to be up for WORK in the morning!
Big hugs to all
MMM x
Mandy - are you sure you’re fit enough to go back to work? Have you been seen by your onc during treatment, they should have been keeping an eye on your cough as it’s not a normal SE. Have you seen the surgeon about your upcoming op? Hope the cough doesn’t delay it. When I had my WLE back in November I had a really bad head cold and was scared they would cancel the op but they weren’t bothered about it, but they did say it might have been delayed by a cough. Sorry, I don’t want to worry you, you’ve got enough to cope with already. Good luck on Wednesday I’ll keep fingers and toes crossed that your xray is all clear.
X Yvonne
My sympathies to everyone suffering, worrying, waiting and getting frustrated. Fingers crossed you all get matters sorted quickly.
Sandra, we haven’t heard from you since you were released from hospital. How are you doing?
I have nothing to report. This is my good 10 days and I’m making the most of it before it all starts again. Apart from lack of energy and tiredness, this cycle hasn’t been too bad so far. Diarrhoea of course, which wipes me out but is controlled with Imodium, dry mouth and cravings for salt or sugar, and that’s about it really. I guess I have been lucky, but I still have 2 more sessions to go.
Here’s hoping for a good week for us all, lots of love and hugs, Linda xxx
Mandy five years ago I had a cough that lasted 18 months, it was a dry, tickly cough that was only in my throat & never a deep chesty cough. My GP was convinced I was asthmatic despite running half marathans, I was convinced I was not. She never sent me for any x-rays or anything except I had to blow into a computer-type machine at the surgery that said I had the lungs of a teenager and couldn’t possibly be asthmatic. Anyway I stopped seeing my GP as I knew I was wasting my time, and randomly starting taking calcium (& Vit D together) just to strenthen my teeth & bones. Well my cough disappeared within no time, it turned out that I had a rare calcium deficiency. Fingers crossed your cough is something as simple as that, but as Yvonne said get it checked out anyway. Good luck with starting work, let us know how the kids find your ‘au naturel’ look. As regards Tamoxifen, I asked my Onc when I was starting they didn’t bring it up.
Linda my bloods get done on Wed (& hopefully my PICC taken out), so I’m hoping to make the record of 6/6 neutrophenic. Will keep you posted. Its kind of become a running joke now hasn’t it?
Kath I poped into Tesco early and got some baby shampoo too, so maybe tomorrow I’ll wake up like repunzel … or maybe not lol.
Chris I’ve still got painful mouth ulcers but they are starting to go, thank goodness.
I hope everyone else is starting to come round from their chemo and not feeling too bad.
Love to you all
Dyane
FEC 100, day 13, Antrim Area Hospital
Yippee hospital rang this morning and Im off for my rads planning again at 3.15!!!
Will report back later xx
Dyane, good luck on Wednesday. I hope you get rid of the PICC. If you are neutropenic again, you should ask for a certificate and an entry in the record books!
Hello lovely Valentines. I’ve just about calmed down enough to post again without too many expletives… but more of that later.
How are you Sandra? Not heard anything since Friday. Hope you’re feeling loads better and have been able to sleep well over the weekend.
Dyane – you are so brave to start a “healthy eating” diet at this stage. Having grumbled about my 3 or 4 weeks of longish round trips, you have 6 to contend with. Make sure you are eating enough to give you the strength to get through it. Above all have some snacks (healthy or otherwise!) to nibble en route! I hope your blood tests do not show up neutropenia, but you certainly deserve an award if they do. Fingers crossed they do your PICC line too.
Have you managed to get an appointment for your pixie cut yet Louise? I’m sure you’ll look great and feel all the better for it. It’s funny how rads are taking over just as chemo did. I guess it’s just another little chunk of life to write off. I’m certainly not expecting to do much else other than “get through”. Like you, I have greatest admiration for anyone working their way through treatment.
On that note, hope all goes well at work today Mandy. Wasn’t your job “at risk” a while back? … or have I mixed you up with someone else? Apologies if I have. Good luck with your appointments later this week. Hope they both go well.
Well done Jo for booking the genetics test. It’ll be a difficult one for you, but if I’d agree with you that knowing is better than not, particularly for your family. Hope you’re enjoying your hospital free week …. bit of a novelty isn’t it?!
Great to hear you had a good weekend Alison and hope that your bottom is responding well to the arsenal of meds. You really don’t deserve to have this reminder of chemo for much longer. I used to roam the Silchester ruins as a rather badly behaved teenager (had friends in the village). They hadn’t been properly excavated at the time and no-one seemed to care about potential damage etc. They probably found heaps of our fag ends (and worse) when they started some time later. I’m generally much better behaved these days!
Well done for signs of hair growth Chris. I’m sure it’s very exciting. I can understand your hating being bald, but regrowth is something to celebrate!
And Linda … you say you have nothing to report … but still being able to enjoy “good days” is something so important to report. I’m so pleased that you are still able to enjoy some time between cycles!
Glad to hear hospital have called Karen (Wattie)… you’ll be on your way by now, so fingers crossed for perfect alignment this time.
May post again later re. rads dilemma (can’t make up my mind) …. am still waiting for a call back from BCN re. cording etc.
Take care all,
Gill x
Thank you all for your advice and concern re cough. It is worrying me and will be glad to have it investigated. I’m just home from work and am exhausted, although to be fair I’ve hardly done anything! Gill, you’re right, my job was at rist and indeed me and most of my team have been made redundant from September 1st. Hence, my return to work is something of a paper exersise to ensure i get paid up to that date. My team are all looking after me and are very aware it’s for a limited time so to be honest I’m a bit of A spare part for the next 4 weeks. I’ve made myself useful today ana could sleep for the night now!
I got my diet book on Saturday Dyane but have done little more about it other than read some of it last night. I keep blaming my TAX mouth on stuffing food but in truth I know I have to get a grip. Hopefully a more normal routine will help.
Hickman line coming out tomorrow hooooray!
M xx
Glad it went well today Mandy , & as for the diet, it can wait until you feel ready otherwise you won’t be able to stick at it anyway. 500 calls (if that’s the one your doing) is not a lot. I’ve been recording my food on the ’ My fitness Pal’ app which is great. I’m on my third fasting day & I have to say they come round a bit more often than I imagined lol.
Gill keep us posted on the outcome of your rads dilemma.
Dyane
Oh Mandy, so sorry to hear that. Will you start to look for another job after Rads are over, or wait a while to get your strength back. Good luck having you HL removed tomorrow.
Karen (Wattie) good new that your rads planning is back on.
Everyone seems to be moving on with the next stage of their treatment. I’m still waiting for my flippin’ hormone tablets. Meanwhile, nothing is being done about possible cancer developments! Got pain in left shin, slight bruised feeling in breastbone on surgery side (left) tight skin around ankles - oh I could go on!!! But I won’t, or I’ll sound like a hypochondriac 
Planning went ok and now due to start rads again on the 4th July, so have time on my hands to do some nice before getting tied down to the daily drudge back and forth!
Dyane I’m having my next fast day tomorrow, not finding things too bad, I tend to have a very late breakfast/brunch of scrambled egg and smoked salmon and that fills me up and keeps me going till I eat in the evening. Fruit in between so so far so good. I was warned not to lose to much weight whilst having rads because of markers! Can’t win really!!!
Kath I think we all have a bit off hypochondriac in us! I know I certainly do
hope all you gals are getting over side effects and things are settling down.
May the fuzz continue to grow!
karen xx
Hi Vals,
Karen W hope all marked up correctly this time.xxx
Got call from hospital this morn got bone density scan (DEXA) on fri 12th week after rads finish,all being well of course after Watties experience.
Been in garden all day planting and bit digging.Exhausted by teatime,had a nice bath,laid on my bed in the sun and gave my skin some much needed moisture cream,then relaxed whilst hubby downstairs slaving over a hot stove,I do love him <3
Hair on legs beginning to appear now,not so exciting.
Was supposed to be picking up no.1 daughter from southend airport ,now,but she text to say ready to board then technical problem so delayed.Then text later to say just boarding,then turned back again.Am going to wait up til 12:00am then bed,she said if delay til morning will call then,otherwise if middle of night will taxi.She just txt again still playing cards in Malaga 
I kept coughing as a result of throat being dry all the time,not chesty cough.
Poor Kath you are plagued with pain here there and everywhere.Big Hug ((()))
Linda nice you having bit of respite.xxx
Dyane,soon be able to eat normal again.xxx
Mandy my sister redundant from coop travel from sept too,nightmare year for lots of people,double whammy for you xxxxx
Anyway tired now,keep improving girls,Sandra hope pain under control BIG HUG ((()))xxxxx
Love Chris xxxxxxxx<3
Morning Vals
Kath if you can’t vent here then were can you vent. That is what we are all here for, to help each other through & sometimes just being able to get it off your chest makes you feel a million times better. There is nothing more frustrating & worrying when you have complaints & aren’t taken seriously. Now more than ever the slightest wee niggle is going to have us all worried until we learn to deal with what we are going through now.
Karen W I’m glad that rads planning went better second time round. Good luck with todays fast. I’m glad mine is over but before I know it another fast day will be here.
Chris I hope your daughter gets home ASAP.
Mandy good luck with the removal of your Hickman, I’ve my PICC out tomorrow all being well. I hope it goes smoothly but I am a little anxious after hearing the drama that Funki went through.
Anyone for the poisoning this week? Linda are you the only one of us Valentines still having chemo?
I’ve still got a sore mouth but the ulcers are definitely smaller, thank goodness, it looks like they are finally starting to go. This is one SE I never want to see again.
Dyane
FEC100 6/6 day 14, Antrim Area Hospital
Dyane ,
I started the diet 2 weeks ago - but didn’t do it properly last week as it was chemo week so I did have some carbohydrates during the day.
It is the restricted day today and tomorrow - so 1000 calories each day and no carbs. I have lost 2 lb (last week I stayed the same weight as I didn’t do it properly). I am off to a friends today so will probably have some cake (but I am not being too religious about it and will keep the calories down). I do the fast days on Tuesday and Wednesday as these days suit us best. The food is good and I have the cook book too which helps. I generally do fish and veg on one day and cook something nice on the other. So this week I am having smoked mackeral and salad and then marinated lamb the next. Lunch is usually salad with smoked salmon or eggs. It’s pretty easy to follow and I much prefer the larger calorie count. Specially when I start cycling againg (Sunday!!!).
How is you’re going??
Alison xx