Hey cool comments about photo. It was taken in Aug last year - not long after surgery believe it or not. I'd also lost 3.5 stone by then on diet so was looking and feeling good about myself. I think it's prob best photo ever. Perhaps ought to put on what I look like now - fatter, grey and CURLY haired. Yep look like haggered old sheep. Hairdresser has already said ..."oh my god you'll have to dye that you can't possibly live like that!" I thought I could learn to live with the grey but there really is TOO much of it. I might upload recent photo ...just for a laugh..
Go for planning today - appt at Christies at 2pm. Not sure if will be back for after school activities taxi service. Must plan and cook dinner for tonight otherwise it will all end in a mess.
Mal - your hol sounded bliss....I could really do with a week out from my family, in the sun, doing absolutely bl**dy nothing. Proper ME time. In nearly 16 yrs of marriage only ever had 2 consec nights away from my children. Been away 2 x abroad for weekend with Ladies Circle and that's it. It's become even harder now I work term time to go away. OH plans 6-7 nights away each year (sometimes even twice)going cycling...he's off to France again in May. I can't seem to do this and OH says he can't take time off work to look after kids (won't really). So I'm REALLY JEALOUS..esp looking at dull grey rainy skies.
Vicki...will give you a call to arrange cuppa!
Love to all Fiona x
Hi there girls
Gosh a lot has been happening!
Fiona - you had a hectic time with the party & bet it was pretty noisy. You sound much better now. Just your rads to go. When do you start?
And Vicky, sorry you've had to have a line put in but everyone reckons they're brilliant if you have trouble with your veins. I think we're lucky just having 4 IV chemos, I'm sure my veins wouldn't have co-operated much longer. Hope it's much easier for you.
Well we had a wonderful break in Spain. The weather was glorious and we didn't do much - sat in the sun reading, a few strolls along the beach and some lovely meals. It did me the world of good and I feel so much better since we came back and with much more energy. I've increased my hours at work and am back to having the 8 grandkids for tea. Four weeks after finishing and I feel wonderful and improving all the time. AND I've ditched the wig.
Oh Fiona, sounds like you had your hands full!!!
Sorry for not contacting you, I was really scared before the line and really sore afterwards!!! It was not too bad but sort of a constant reminder -like I need one. My daughter can't look at it and I'm already lost without being able to have a soak in the bath - showers only!!! The Christie staff were lovely and its amazing how quick it went in, hope it solves all the problems with the veins. but can't wait for it to go. have to have it flushed out every week so even with the weeks off I will have to have visits to district nurse - roll on May!!!
hows rads planning going - is it this week? sorry chemo brain at the best of times. will have second CMF tomorrow so will try phoning later in week to see if we can organise a meet up - by the way you look fantastic in your photo!!!
Mal, hope you had a fantastic break and are feeling better for it!!
Hi Mal, Vicki and anyone else!
Mal - Been thinking of you this week in sunnier climes (I presume). Hope you have had a lovely time. Getting away from the 'normal' everyday life is good. I know we will be taking caravan south at Easter...it's not quite the same as going abroad on an aeroplane though, as I still do the cooking and cleaning up!
Vicki, tried to call on Friday night to see how you were after the line went in but the phone was engaged. Been unbelievably busy with organising 13yr old bday party plus sleepover, so didn't get back to trying again.
Had 10 'screaming' girls here yest afternoon, back after laser-questing at Trafford Centre for food and games etc.. Think it went well. Glad that I planned some games though. I had spent 2 hours until 1:30am cutting out photos of celebs etc and photos of films from Radio Times to do a guess who it is game. Actually slept from 11:00pm to 5:00am - not bad for a sleepover night. Had mattresses etc in Lounge ( away from us ...ha ha!) I wake up at 4-5 regularly ever since chemo started and want to sleep 8 hours not 4/5 and tack on 3more after having laid awake for 2 hours!! Body clock very odd.
Let me know how you are Vicki.
Love Fiona x
Glad you're out of the black hole now Fiona and back to your more 'normal' self. Bet your daughter's having a great time in France. Has she gone skiing? Hope the cake survived the trip.
And Vicky - hope you've managed some time to yourself and are now feeling more upbeat.
I too have come down with a heavy cold. Typical as we're off to Spain in the morning for a few days. So busy day today catching up with family etc.
Will catch up when I get back next week-end.
Hi ALL - QUICK NOTE - busy evening ahead and been running round like headless chicken as Older Daughter goes to France at 05:00hrs aargghh...tomorrow for a week. Bad enough getting sorted for that but it's also her 13th birthday, so organised a cake and given it to school...plus presents...etc...going to pick her up from school now and get organised with her packing etc on return.
Cold getting better....really hit me..hence on a downer big time. Weekend away helped although over did it and walked too far about 7-8 miles so feet were v sore, ached all over so took me a few days to recover plus hacking up unbelievable green grim stuff from chest(sorry too much detail)...still hcaking stuff up after 2 weeks but it IS getting better! Gotta go will post tomorrow
Hope all okay but will catch up more tomoz.
Sorry you're feeling so down Vicky. I think whoever called it a rollercoaster was spot on. But you're right, you do have to deal with the emotional side of BC and everyone finds a different way of dealing with it. You do need some time for yourself to get your head round things. I had too much 'me' time and that was one reason I went back to work too soon. Are you getting all the help and support you need? If you keep putting on a brave face and saying you're fine then the offers of help don't come rolling in.
I can understand you being upset at being overlooked for the extra hours but don't look too far ahead (to work). You've still got half your chemo left and you need to concentrate on that at the moment.
I'm sure that CMF will be a lot kinder to you and you are half way through the cycles of chemo.
I'm feeling much better now (mentally) although I'm frustrated by my lack of energy still. We're off to Spain on Monday for a few days and I'm really looking forward to it. You'll soon be in the same position. A few months ago I really thought I'd had my last holiday!
Take it easy
PS Really hope you're OK Fiona.
not feeling fantastic - realised today that I have not dealt with the emotional side of my DX, macmillian nurse came to see me and I started to blubb straight away!!! I have tried to organise everything and not to burden anyone that I have not really sat down and thought how I feel. I know everyone asks me how I am but they are not really wanting to hear the awful so I just say i'm fine!!!
4th epi was not too bad - been quick for it to affect me and the sickness has been worse and really tired. I think the worst bit is its 4 down and 8 more to go so don't feel like I have achieved much and seen people who started after me who are going to finish months before me!!! downer I know but feel I need to let it out before I go mad!!! I hope the CMF is better.
I am also upset that I got overlooked at work for the offer of extra working hours, they also stated they have not e-mailed me as "i'd be ill with the chemo" - like thats a given thats why people e-mail so you can read it when you feel better. I have cancer not plague!!!
sorry for ramblings - think I need some me time - when I have no idea. but macmillian nurse told me about a foundation that caters for people 14 to 40 with life threatening illnesses who do special day out so am going to have a look at it - really need something for me.
hope you are ok Mal??? hows your holiday plans going?
Hope you are ok Fiona, not heard from you - hope your cold is getting better and would love to meet up before my next chemo.
Hope you're feeling better today with the sun shining Vicky. How did your epi go? Are you coming out of the fog now?
And Fiona, hope you're out of the black hole now.
Take it easy
thanks for that adejude I will look into it.
Am on a downer today - forgot hospital follow up appointment yesterday and thought had person coming to see me today but not turned up and now don't know if I put it down right??? going mad and fed up!!!
I had 6 months full pay then as I went onto 6 months 1/2 pay I discovered I was entitled to Incapacity Benefit.
This work out at £300 per month so with the 1/2 pay, not much less than my full pay.
You are on a downer, aren't you?
I can sympathise. When the end of chemo is in sight you build up to that and think that you'll be skipping along with loads of energy etc. but that's not the case. I read somewhere that for every month of chemo you need a month of recuperation. I'm sure that's right.
No onc didn't suggest any diet as such just a healthy one! I have reduced the dairy by a long way but if I have choc, it defeats the object. Also, some things have lactose, skimmed milk etc etc, in the ingredients, but haven't cut that out yet.
I'm now 1.5 stone heavier! Although lost 5lb when on Epi ..all the bad eating habits came back, (all the nice clothes I bought at Next etc earlier don't fit comfortably any more), and it's tough getting the biccy's etc out of the cupboard. Shouldn't buy them...but the will power goes, esp when feeling this crummy with debilitating cough, bunged up nose, headache and unbelievable fatigue. Hands just not coming back to normal at all. Thumbs and two fingers (peter pointer and middle finger ha ha )cracked at finger tips. difficult to type or do anything. I really thought that hands would recover but seems not..!
I JUST WANTED TO FEEL WELL AFTER CHEMO...supposed to be going to Ironbridge tomorrow evening for weekend with several other families but I really just want to stay here aand mope and feel sorry for self!! I'm allowed to have downers now and then.
Enough of my moping...sorry
Glad that all the rads etc has finished and not too bad SE's. Helps to know that you can get thru this without too horrendous a problem.
Waiting to hear from Homeopath. One thing def, low on Mg, so stir
-fried kale last night. Munching almonds, bananas and avocados. and trying to get vit c down to help fight this cold.
Have you changed your diet radically?
going to try and have doze b4 chn come in.....not a chance after that
So sorry you've got a chesty cold and are feeling grotty. Tiredness, I think, is par for the course at the moment. I'm just over a week past rads and thought I'd be skipping along by now. Ha ha!! Still having an afternoon nap but will have to try and extend my hours at work soon.
Beechwood sounds really good. I could have done with something like that a few months ago but now I do feel as though I'm moving on. Need to move work higher up my priority list for the next six months, though to be honest, my heart's not in it any more.
No after effects of rads thankfully. Looks a funny colour but feels fine.
I was like you dreading taking the femara tablets 'cos I'd read some real horror stories, but after the first week I was OK. The first week was like being back on chemo and I felt dreadful, but my body soon got used to them. Some SE don't kick in for a few months so I'll have to wait and see. I know three people who are taking tamoxifen (and have been for a few years) and they're all fine on them. Hopefully you'll be the same.
Let me know what the homeopath said. I'm on all kinds of vitamins and supplements now. Still swear by the manuka honey and will carry on with that. Trying to eat healthily too. After losing a stone on epi (couldn't eat due to sore throats, mouth ulcers, nausea and lack of taste)now I make up a bowl of salad and nibble on that (Yuck). Miss my cheese more than anything else. Did your onc tell you to keep to a low dairy or dairy free diet?
Hope your epi went OK Vicky. And no don't apologise for asking questions.
Sorry not been on....gone down with one hell of a cold and cough. Really chesty - it hurts to cough. Typical manage to last out 5 months without too much of a cold and it hits at the end,just when I want to get on and do things. Spent all day in bed...ached like anything
Vicki - how did last epi go..thinking about you. Had call from Sam (Trial nurse at SHH) to see how things were and I asked if you were there so hope she passed on my good wishes to you. Are you at In laws in Bramhall now? Could pop round to see you when got rid of this cold??
BTW, asking questions,I believe is healthy, so don't apologise.
Mal, Beechwood was really good for getting me to relax, or rather teaching me about how to take time for me. Each pm session is a relaxation class learning, or rather practising visualisation. It's a charity run centre. We had a group of 10 all at different stages of Cancer...the programme was about learning to come to terms with diagnosis/mind and body prog. Meeting someone with secondary cancer was hard at first and made me realise just how big a deal this disease is., and yes it did freak me out and I had a hard time., but with the counselling sessions you have (1:1 basis) I have come to terms with it..and perhaps I needed to go through that to come out the otherside with a positive attitude. Beechwood is all about being positive. They do other programmes as well. I'm hoping to go on to the next one..Moving on..sometime in April.
I'm sure you could go too, as in my group, 2 came from Oldham and I think another came from Manchester area.
So Vicki, how did your first day at Beechwood go? Are you having Reiki., reflexology or massage?. I had reflexology for the 7 weeks, but am going back this coming Friday for a Reiki session. (have to pay for these sessions though).
Also, going to see Homeopath this morning...costing heaps (not told hubby yet) as wanting to get my immune system up and running and help prepare me for the radiotherapy.
Had Tamoxifen prescribed for me and will start soon (not sure exactly when but prob in next few weeks) and not really looking forward to it as reading up on SE's and the sure knowledge it tends to put weight on. I've already put 2 stone on through crap*y eating habits, half the time to stop the nauseaus feeling esp when I was on Epi, and then afterwards through lack of will power as now had the taste for biscuits, cake., carbs etc.. Trying really hard not to eat 'naughty' things but wasn't expecting crummy cold and unbelievable lack of energy these last few days.
Anyway, enough of gloom and doom me....going to get yet another cup of tea to keep me going. Been up since 04:30, inhaling etc and time to catch up on here..
Half hour or so before brood starts to wake up for school, so will go and make sandwiches.
Hugs and love to all
sorry for all questions - I'm like that -drives people crazy!!!
sounds like you have a few thing to look forward to - I really want to plan a holiday asap for the same reason - would be nice to have something other than hospital appointments on the calendar!!!
I don't want to rush back to work but 6 months full pay end is april and I can't really afford half pay as nothing to put in place of missing half. We have kept our children in childcare so to keep the place and to give me that break (its only one day a week). I am 30 and its a long time off retirement so need to get a few years under my belt before I can plan that. hope you have a fantastic break though!!!
well have to pack for up sticks and move in with inlaws for a week.
take care and fingers crossed that 4th epi is as easy as can be.
Good luck for your last epi tomorrow and hope it's kind to you. I found the 4th the easiest by miles hopefully you'll be the same.
So many questions!!
I was allocated Arm 4 of the trial and so had the xeloda tablets like Fiona. Wasn't too bad on those, just nausea, and that's when I returned to work. Another thread that I have been posting on since last summer had a girl who went onto CMF and she found it much easier than epi. She was still tired and had taste problems but found that CMF didn't 'mess with your head' like epi.
After rads? I know a lot of people feel lost and struggle and I can understand that. Coming out of Christies on Wednesday I felt lost and empty somehow. They wish you well and say 'check up in 6 weeks'and that's it. After the whirlwind of the past few months I suddenly have no appointments on the calendar and it's weird (but very nice). Mentally I am feeling more positive than I have for months and am planning loads of stuff for this year - a big party/charity fundraiser for the end of March, a few days in Spain middle of February and hols at Easter and summer. I'm 56 and am also planning to take early retirement his summer followed by a BIG holiday. But I can understand people feeling as though the safety net has been whipped from under them, especially if they don't have hormone therapy.
I too work for the local authority and Occ Health were a waste of time. Basically they left it up to me when I returned to work. Don't rush back to work. Take it easy for a while and then ease back in gently. I'm lucky 'cos I only have to work until summer and then a life of leisure!
Son just arrived!
I am only 3 in on epi - have the 4th on monday then on to the CMF!! not sure how I will cope on the two weeks on two weeks off but I have fantastic inlaws who look after us all!!!
I don't know what hormone treatment yet - its the one bit at a time thing!! I don't really know much about CMF really so expect that I will get this next time I go.
I am part time and am requesting to go full time as extra hours have come up and with the current lack of jobs thought would grab them. I have a 2 year old and we had previously thought we would have more but no longer so I want to earn more so we can have more, travel and move to bigger house. I might be mad and don't think if I get the extra hours that it will be straight away, I want to get into it gradually. maybe by xmas I could start to go full time.
Can I ask what happens once radio ends - do you run happy away? I just am in need for information, I hate this drip drip of info. I know the internet is dangerous but just reading others posts really helps.
I am keeping well other than really heavy period, epi is not my friend (is it anyones?) and has caused major sickness and resulted in nutrophiles (SP?) dropping to 0.1!! so ended up in isolation for 4 days which I hated so have the extra jab which seems to help plus they decreased my does by 20% which I as so thankful and made it more bearable!!! I am hoping to get the ball in motion to return to work when I know how I deal with CMF.. what was your second chemo drug?? I am on arm 1 of the trial sods law really. the reason I signed up was hoping for arm 4 and ended up with the longest but in reality its prob best for my family.
As I work for local authority I need to sort out occ health which can take time so poss back to work slowly by april, chemo ends end of may then 4 weeks of radio (how do they decide how long??? as seen some women more than me and others less - I don't expect you to know sorry for all questions but sometimes I have to write them down otherwise they are gone forever with my chemo brain!!).
sorry for rambling on - goodness knows how I will actually do my work when I get back. should be interesting!!!
One of my colleagues at work had her treatment at Stepping Hill. She's 2 years out now and doing fine. I had all my treatment at the Christie and they were marvellous. The worst thing was the parking!
I went back to work part-time at the beginning of September after my last epi. Looking back it was a bit too soon and I often felt really rough but it was the right thing for me as I was climbing the walls at home and it gave me something else to think about other than BC. I'm still working the same hours (about 22 a week in the mornings) but am planning to start increasing my hours in about 3 to 4 weeks. There's no way I could have coped with full-time, I just hit a brick wall at lunchtime and had to go home for my afternoon nap. Now rads are over I'm already feeling as though my energy levels are rising but am still going to take it easy for a while.
Hormone therapy - which are you going to be taking? I started Femara at Christmas and the first week felt awful. It was like being back on chemo and I couldn't see how I could manage for 5 years, but then the SE wore off and now I have none at all.
Where are you up to with your treatment? Hope you're keeping OK through it all.
Hope you're still celebrating Fiona.
we are lucky to have beechwood, I am hoping to get as much out of it as possible!!! I have those days when my bust are really sore and under my scar I can feel hard lump!!
I am under Christies but like Fiona have chemo at my local hospital - stepping hill but will go to The christie for radiotherapy.
how are you coping at work if you don't mind me asking? Are you full time?
I am wanting to go back full time but after reading about the hormone therapy s/e I am not sure how I will cope??
I'm not in the Stockport area but North Manchester. I've not been offered any help like this. I could have done with it a few months ago but now I'm finished treatment and back at work I don't feel as though I need it. Would have been good though when I was having my black moods. I don't think they could help with my paranoia over every little lump and bump!!
Are you under Christies as well?
Beechwood is a cancer care centre and they do sessions and support for anyone who is effected by cancer. I went today and signed up for an 8 week course which has relaxation and support and therapies such reki, aromatherapy too. plus support for families and friends.
I was very impressed on the range of support and the facilities. Its on the Bridgehall estate in stockport. If you live in stockport you can refer yourself. they do courses for when 1st DX and others on after treatment and moving on, returning to work and the likes. they have macmillian info there too which is really good.
Are you in Stockport??
fantastic news Fiona!!! so please for you.
I have my father in law coming with me this week coming. he had cancer 12 years ago and has been fantastic support as knows what chemo's like!!!! I am hoping the CMF is not as bad.
I go to beechwood tomorrow for first session so will see what happens.
speak soon!! hope you enjoyed your choc cake!!
Brilliant news Fiona. It's absolutely nerve racking waiting to see the onc for results, isn't it? Anyway you can forget about it now.
And your last tablet too - yippee - rads next. Have you got a date for the planning session yet? You certainly suffered more than I did on xeloda so I bet you're glad to see the back of them.
I had my last rad yesterday and it was so strange walking out of the hospital. A sort of empty feeling after nine months of hospital appointments and treatments. Go back for a check-up in six weeks. So now I'm going to sleep for a week and then I'll be on a get fit campaign.
Take it easy.
Hi Mal and Vicki...
Typed long reply Monday evening and lost it so was demoralised and went to bed...only to end up in bed most of yesterday with stomach cramps and nausea. Explosive system if you get my meaning. Still not well really. Just like first round of Xeloda but not quite so debilitating. Thank goodness it's over..
Anyway..Monday results - Yippee all clear! Relief!
Thanks SO much for your concern girls. Good day that day - last tablet swallowed and clear scan and then Jess my v nearly 13 yr old txt me saying she had A* in French Course work...chip off the old block Ha Ha..So, whizzed straight to Sainsbury and bought yummy choc cake....Thorntons. Pricey but well worth it to celebrate.
Vicki...Do you have anyone going with you for last Epi?? More than happy to come with you at any point...
Had last day of programme at Beechwood. Been really good for learning how to relax and just cope with dx of BC etc.. Staff are fab. Have booked myself on complimentary treatment next Friday...Might do the Tai Chi on a Tues evening. Apparently good for the body and mind...timeout really for ME!!
Anyway will catch up over next few days, going to bed - pretty tired now 12:30am... Been awake since 4am as slept so much yest it's upset my body clock.
I was also wondering how you got on yesterday - hope you are ok!!?? take care and look forward to meeting up soon.
Good luck for tomorrow Fiona.
Lucky you - no node involvement. As you say it does bode well and also as you know people do develop secondaries without nodes involved and with low grade cancer BUT it is far more unlikely. At my 'party' there will be 3 other BC survivors (hate that word) all doing very nicely with no secondaries. One had a low grade cancer and the other 2 both had nodes involved plus high grade tumours.
Having said that today I was convinced I had a lump on my neck. Freak out! OH said 'there's nothing there'. I find myself looking for things and if you look hard enough you will find something.
I can relate to the feeling of wanting to get healthy again but apart from the lack of energy the weather doesn't exactly encourage outdoor activities. Hopefully when the spring comes we can get out walking etc. Weight-wise, I've actually dropped a size since I was dx (Had been trying for years). All the nausea I think.
Hope you had a really enjoyable day in Liverpool and your kids weren't too bored.
Will be waiting to hear how you've gone tomorrow and fingers crossed for a frozen shoulder.
Hi Mal...get results Monday - was in such a state that Onc told me to come in weeks time and not the two weeks that was already planned. He was / is going to discuss radiotherapyh on 2nd Feb but might do it this week instead not sure.
Diagnosis - from memory Left boob (not from memory ha ) ....Grade 3 tumour. 1.2cm tumour with 5mm clearance (I think surgeon said it was a small lump!) Had sentinal node out and a few others - assume first layer about 3 nodes and they weren't affected. They were very small according to surgeona and he had trouble finding them! I'd tackled the question as to why they didn't use the radiotactive dye when doing snb like they do at Whythenshawe hospital to find the nodes....apparently not done at SHH as yet -still awaiting training and equipment...! Perhaps if SHH had same as NIghtingale Centre then I may not have been so sore.
Her2+ negative but only after additional testing which took forever - about 3 months to get results.
Oestrogen and progesteron receptive - 100% and 85% respectively
I know this is all very positive and bodes well but when I was at Beechwood I met someone who had had similar prognosis etc and 3 yrs later she had secondary cancer in arm bones and now has to live with it... SO when all this pain in arm took hold and went up to shoulder and headaches etc - I was blo*dy freaked....hence scan etc..
So, planning losing weight as gained SO much through bad eating habits whilst on chemo. My fault entirely and now just want to get back on my lighter life diet to lose the weight again and stay healthy. Just got to lose the biscuits, choc, crisps from the house. My children are going to hate me but it will do us all good to get back onto a healthier diet plan..
Must go to bed it's 12:45 and we are up fairly early to go to Liverpool to celebrate my MIL's birthday with my sister in law and her brood of 1 x 3yr 0ld and 2 x 1yr old twins,...oh joy. My too get a litttle bored but the age gapis big...Jess 13 in 2 weeks and Soph 9
speak soon Love and hugs F.
Take it easy Fiona.
I know if I get too tired I have nausea. You need to rest. I just can't go out in the evening otherwise I feel ill. Finish the booster rads next Wednesday (that's it) then I plan to sleep to sleep for a week!
Have you got a date for your rads yet? It's nothing to worry about - really. A bit Star Trek like (I keep telling them that the machine should be in orbit).
When are you back for your results next week? I'm sure the results will be fine. All fingers and toes crossed. The waiting really is the pits. It's no good saying 'don't worry' 'cos it's impossible. Have a couple of drinks to help you sleep. Sod what your onc says. When I got the all clear I did have a few too many that night. Put Mamma Mia on and danced around to the music - glass in hand. That'll be you next week.
What were your path results? Mine was grade 3, 3 out of 24 nodes affected, 3cms lump, Hormone rec + & Her 2 -. I worried myself silly to begin with over the nodes (vascular invasion too) but now I think 'what's the use worrying. Can't change anything.' So take each day as it comes.
Have booked 3 holidays this year so far- make up for last year.
Thinking of you.
thanks for your words of wisdom.. really helps that someone else understands.
I too have hit brick wall re tiredness. Had day 10 of Xeloda...been feeling pretty well no SE's except tiredness but heavens last night...ended up feeing really sick., stomach cramps..really YUK and wokeup again in middle of night with same symtpoms. I'd gone out to dinner with girls from Ladies Circle in Sale and had lovely meal. Took tablets afterwards and started feeling yuk on way home. So assume the build up is building up big time. Been on sofa all day; sleptall morning and yet still have no energy to do anything. Gonna crash before children come home.
How many more rads do you have left...is that it now? Hope the soreness goes quickly as difficult to sleep etc when hurting huh!.
Hope your mum in law gets better soon. Bit of a hike to Keighley from here esp what with the yummy weather we are having.
Good to hear from you. I was worried.
It's natural that you felt that way. We put on this 'I'm fine' face to everyone (including ourselves) but when you have a scare like this, it's impossible. It's good that your onc took the time to talk to you (VIP eh?). Sending you good vibes!!!
When I was first given xeloda I asked the onc if it was OK to have a glass of wine and he said a glass or two was alright as long as I didn't down the whole bottle! So I did and really enjoyed it as I couldn't touch the stuff when on epi.
Mother-in-law still in hospital having tests and OH having to go over to Keighley every night to visit, which is a bit of a trek.
Anyway must go and have a shower before off to Christies for rads no 15. Am getting a bit sore now and the tiredness??? Have hit the brick wall.
Hi Mal...was pretty down and SO worried on Monday.
After scan I ended up in Chemo ward (trying to hold tears back) just to talk to the nurses. As usual, really short staffed as one of the chemo nurses has been ill for 2 weeks. So only 1 chemo nurse on to handle all the cases! Anyway....she did see me about 45 mins later and said I should see onc just for piece of mind, as she could see I was screwed up. (I've been reasonably upbeat and managed to get my head round things but this just threw me) I said not to bother as nobody would know outcome of scan for a while....but they insisted and he came in to see me (didn't even have to go to his clinic...WOW). He sort of reassured me that things looked promising and told me to comeback next week and we'd go through the results. I have to say that the staff have been brilliant and so caring.
Your weekend - well my goodness, not quite what was planned. Is your Mum in law okay? I'm really looking forward to having a glass of wine at some point. Really fancied one over the last few days but as still on xeloda have not touched it as per Onc's advice.
Been at Beechwood today so am relaxed and in better frame of mind......Your scare would have freaked me too. Google is a wonderful tool but not always huh!! SO glad you are ok.
Thanks for info on DDA. Had phone call from my Head today ( I was out) but he's finally getting sorted about contacting Occ Health so will try and talk to him this week.
Must go to bed...eyes drooping and I keep making too many mistakes.. (been corrected but taken ages HA)
Speak soon Fiona
I do hope the bone scan went OK and they're not going to keep you waiting too long for the results. The waiting is the worst. There's loads of things that could account for your problems and the odds are very much in your favour. I don't know whether I told you that I had a scare last summer/autumn. I'd been having problems for a while with my shoulder and the onc sent me for a CT scan. It came back showing tendonitis in my shoulder (I've since had a steroid injection and it's much better), but it also showed up nodules on my liver and adrenal gland. They said they couldn't rule out secondaries but to wait a couple of months and they'd re-scan. That couple of months was horrendous. I'd written myself off! Too much googling! My head was all over the place. When I finally had the re-scan they both proved to be cysts.
Let me know how you got on.
No, I don't work at the school you mentioned but very close. The DDA is the Disablity Discrimination Act and is a law which says that 'reasonable adjustments' must be made in order for you to do your job. Cancer is covered. So for example you could say that because of fatigue you could only work 15 hours a week with a review afterXXXXX weeks.
The week-end in Chester started off great - a bit of shopping, lots of walking, nice meals, a couple of cocktails and then on Saturday night OH couldn't get any reply when he called his mum. Finally got hold of her and she'd had a fall and couldn't get up. Had to phone the ambulance and they carted her off to hospital. So we came home early on Sunday (my OH had too many drinks to drive on Sat night). She suffers with her heart and they think her pace maker needs replacing so she's still in hospital in Keighley.
12 rads down now and just a bit itchy but that's all.
Keep in touch & don't google too much!
I too lost msg so re-typing it again. I always copy the text just in case but this time didn't...typical...it might be because hands are so cold.
I'm radioactive at mo as having bone scan done this afternoon. Have had really bad aching arm for ages - assuming as told that the Epi messes with the veins and had gel to help with the inflammation but the cough has become deep and it hurts around my ribs on my back. Was worried might have pleurisy or start of chest infection so visited doc first thing this morning before hospital visit. Nope not that (was actually hoping it was and would account for the pain in shoulder blades) as chest clear. I mentioned I was going for bone scan later and he said ' that's good as that's what I would have suggested, esp as ribs so sore......so the normally quite strong me who has said I'm okay and will be became a bit of a shed and I do feel quite scared.
The once 'prognosis' of really good is not looking quite so rosy.
I know I need to wait for the results ....no doubt ages away, so what was supposed to be a hey i'm nearly finished and I'm ok 2 weeks is going to be a little sressful.
I'm assuming you work near Morrisons? Am I right? Is the school a building site? If it's the school I think it is, do you know Liz Llewellyn? ( Her daughter went to ballet with mine for a while)
Re the risk assessment...I honestly won't hold my breath when it comes to the Head getting round to things ( he had my sick note in his in tray for a few weeks and then phoned me to say he hadn't received anything.) What's the DDA?
Going to drink the next litre of water as told by 'Nuclear' nurse to do ha ha, and then return to SHH at 2:15 for 40 mins of radiation!!
Speak soon. Love Fiona X
I've just sent you a really long message but lost it! So here's shorter version!
We've got a caravan too. A static in Carnarfon and we've had it 7 years. Love it. Hoping to make more use this year as last year was a write off. It's our bolt-hole away from family.
I'm 56 but was always planning to finish when I was 50 but loved my job too much. Different now. The school is closing this summer and re-opening as an academy so hoping for a redundancy package. We'll see. Going anyway.
I too pretended I was fine and consequently didn't get much help from family (except OH who's been amazing). Don't think we do ourselves any favours by putting on a brave face. Certainly went back to work too soon (only had 9 weeks off), but it did give me something else to think about. I went back mornings in September but was back on full pay. Make sure your line manager/head completes a risk assessment before your return. It outlines what problems you are likely to encounter (fatigue etc etc) and what measures the school is putting in place to support you. It should be reviewed regularly & you are entitled under the DDA.
Off to pack a few things and then away we go. A nice hotel, a few sights, a little retail therapy and a couple of lovely meals.
Have a good week-end.
ps I've had 11 rads now and are just a little pink. Nothing else. You'll soon be done and dusted.
Retirements a long way off for me 46 now. Was just getting MY life back a bit - ie doing some things for me like losing weight,doing a weekly pilates class., generally thinking that I count too...when all this BC hit. Re-assessed a few things here at home and I'm not doing the washing up - leave it ...gets to 3 days and I still do it though!! The ironing pile is now 4 weeks old. My OH hasn't done his since May...and I don't really care.
If I had been really poorly like some of the girls on Chemo then perhaps my family would have helped more but I've looked well and not 'on my knees' (as my girlfriend said to me) . I don't feel guilty anymore for sitting on sofa and doing 'nowt'
Planning to get back to work Summer term. My Head should and I say should be sorting out Occ Health forms so I can gradually get back. 94 yr 1/2 children is a lot to deal with everyday. So half a day to start x no of days building the timeup should be ok. Perhaps from Easter after all the radiotherapy. Still on half pay then and half pay on a TA's pay in Stockport is not great. Not sure how the pay would work if back for a few hours each day. Need to speak to HR.
Hair is really coming back now - black and grey, or rather more grey than black!! My wig looks an odd colour now as had hair coloured for years to keep grey at bay. Black/ v dark brown is my original colour when a schoolgirl (5/6yrs). It's very soft and silky and the children like to stroke it. I'm better than the gerbils at keeping still..ha ha!
Holidays - Easter, Whit and 2 weeks summer booked in caravan. New toy but enjoy it and it's so much warmer than camping.
Have a great time away...a tad jealous as would love to go away from family and be pampered etc., but just not poss as OH no holiday left to look after children when they come in from school...oh well
speak next week.
I too wish I was the kind of person who didn't need to know everything, but I'm not made that way unfortunately (I think it's because I need to feel some level of control over things). I just hope that if BC does return that I haven't wasted the time worrying about it. When the treatment is over I will need to try and put BC in a box and put it in the back of my mind. I do keep things in perspective most of the time but now and again..........
Good grief you did have a good 12 months! I've gone from a medicine cabinet containing a box of plasters and a packet of paracetemol to one that's absolutely bursting at the seams. Stuff I bought 'just in case' and have never used most of it.
How's your hair coming along Fiona? Mine is about one and a half inches long but just won't do anything except lie flat to my head.
I'm the bursar in a large boys secondary school and have been there 28 years. I have decided to take early retirement (BC made me re-assess my priorities) this summer so am planning a couple of really good holidays in the autumn. Have you got any hols planned?
Anyway off to Chester for the week-end, staying in a nice MacDonald hotel (courtesy of my colleagues) and am really looking forward to it.
Thanks Mal...will def think about the charity do. Would be lovely to meet you.
I sometimes wish I wasn't a person that 'needs' to know the reasons why, how, when. I read in another thread to which you posted on that we either need to know or bury our heads in the sand and carry on as if nothing has happened. I am under no illusions now that there is a very real possibility that the C will return at some point. and...yep I appear to get my 'knickers in a twist', but this forum really does help (and sometimes not...scary!) to know what will happen etc...
I've never had so many tests., prods etc as I have had in the last year. I seemed to have gone past my sell by date. Oct 07 Sinus op then March 08 knee op and then the 3rd whammy BC!. I was freaked out with my very first anaesthetic and wondered if I would wake up...In mean how prattish is that! So when the BC came along - the op was a 'breeze' mentally. I think if I know what's happening I can deal with things mentally and emotionally..that's all.
Are you a teacher or TA. I know you work in a school. I'm a TA yr 1 &2 but was told no way could I work while on Chemo. Popped into school so children could see how whacky I looked with my very short hair, to prepare them for hopeful return in the summer term.
anyway....housework and prep for dinner beckons so take care and will no doubt chat soon.
Don't get 'your knickers in a twist' about the shoulder/arm scan. I had one months ago because I was having problems and it just showed tendonitis and I've since had an injection which has helped a lot. Easier said than done I know. You worry yourself sick about all these tests.
The Rads planning session is nothing really. You feel like a piece of meat on the butcher's block- it's very impersonal. And my grandson would love it (looks like something from Doctor Who). But they are brilliant at Christies. I often get there early (cos I allow an hour for traffic) and they usually see you within a few minutes, Yesterday I was talking to a lady and it was her first time. She was scared to death. But it's nothing - honestly. I saw the onc today who said that my skin was 'holding up' and it is. Just feel a little tired. I asked about lungs, heart etc and they really put my mind at rest. The worst part is driving home at rush hour on the M60 round Stockport!
Yep - I had no 9 today so 2 weeks today I finish- yippee. 15 rads + 4 boosters every day except week-ends.
I look forward to getting my energy levels back too. I've always worked full-time (with after school meetings) plus 16 grandchildren and I find that, at the moment, I go to work in the morning, home for a sleep, then go to Christie's and then I'm whacked. I long for the old days. They'll be back soon & so will yours.
Have a think about my 'do/charity do'. It would be good to meet etc.
just you and me huh!
Hospital visit went ok and now on last leg yippee...however., onc believes that pain in arm and shoulder/neck is due to phlebitis (vein inflammation) due to chemo (presume epi as only one iv'd) so have cream to help but after talking to someone at Beechwood who had had almost similar diagnosis and treatment and predicted outcome got bone mets 2-3 yrs later and her arm was sore and the docs just said it was the surgery and or chemo etc., blah blah, I was pretty freaked out and told onc so, so he's letting me have bone scan next week just to make sure. He's pretty sure it's not but I think he's pretty good at helping with the psychology of this crap disease. Fingers crossed though huh.
Am starting to come to terms with the Fatigue now. A bit debilitating at times isn't it. I'm a person who has always been on the go and I wonder whether God has asked me to slow down a bit. Assuming that the last leg will be toughest re weariness, but hey it'sJan.
Bummer to hear that the SE of Radiotherapy is as I had been told big time tiredness. Hope you feel better soon. Are you there every day for 3 weeks?? Someone said that 3weeks ie 15 sessions seems to be average. Are you on 15...how did the planning go and what did they do??? So many q's sorry.
Re the hormone therapy - yep forgone conclusion and told way back... as I was 100% oestrogen and 80% progesterone sensitive. Presume tamoxifen as pre menopausal., but one step at a time. Sometimes I think this will just go on forever...
I hope the hospital have sorted out your arm and shoulder pain as constant pain grinds you down. Last xeloda tablets - that's something to celebrate. At least you know that the long haul is nearly over. It seems such a long road when you first start treatment doesn't it?
As for memory, when I went for my rads planning session with my OH I forgot that the radiographer had given me my appointment card and asked her for it! On the way out my OH said' are you sure you're going out with the same man you came in with?'. I was talking to a colleague who's 2 years post chemo and her son still calls her 'confused.com'. She says her memory still isn't back to what it was.
Tiredness kicked in yesterday, not sleepy tired just weary. No 7 this afternoon. The femara tablets are OK so far though. Are you going on hormone therapy?
The rest of the girls must be at the sales - I hope.
Hi Mal, just thinks it's you and me on this thread at the mo!!
Yep got the cream...Udderly Smooth. Pretty good., and not greasy like some others. Been really good for my feet.
Have quite a collection now.
Best so far has been Lansinoh (pure lanolin) found in baby section and used for cracked skin and nipples. Put that on at night - seriously sticky. Also have Aveeno Hand cream that I keep in handbag. Have also tried E45 hand cream, which wasn't bad but not as good as the others. So I'm 'creamed out!....
However, hands are getting slightly better now that I've remembered to take the B6 3 x daily
I think my hands became worse when after finishing the last bout of Xeloda (3rd), I didn't take the B6 tablets regularly enough and missed a day or two. It's so nice not to have to take the tabs when you get to the end of the 2 weeks, so I just 'forgot'. Also my brain has just not been with it, 'remembering' wise. We now have an in joke that I was bad enough before all this happened but now it's GRIM! It's like having a box of memories and they are all hidden by cotton wool. You know they are there but just can't quite grab it. I wonder if this is how old age will feel like,or people who have Alzheimer's....glad it's only temporary...or that's what I have been told. Banking on it. Will have 90 odd names to learn when get back to school., and that's not counting the names I should still know, but can't remember!
Not had brill night's sleep hence up at 5:30am typing this. Been battling with persistent sinus type headache, painful arm, neck and shoulder. Feels very achy and ended up taking a prescription migraine tablet to try and get rid of headache last night. It's mostly gone but head feels like it is in vice and neck and shoulder pain just unrelenting.
Off to hospital for LAST xeloda at 9:30am. Will ask about aches and pains esp arm. Surprised arm is still painful as last epi iv was on 3rd Oct. I can't even practice my flute any more (started learning last April). Ho hum.
speak soon...need cuppa and the brood will be emerging soon to go to school.
Hope the other girls will come back and chat and assuming no news is good news.
ps thks for the note about Christies.
I'm sorry to hear you've still got a problem with your hands. Did you ever get the cream? What was it called? Udderley (or something like that).
Re rads - there's no saying who's going to have reactions is there? I really thought I would. Rads are a strange experience but needs must I suppose. I was a bit concerned about heart, lungs etc but they give the dose from the sides (glancing blows as it were). Then again I suppose it depends on where you're having treatment and what position the lump was. I'm just having the right breast area done thank goodness.
Parking at Christie's can be a nightmare but they do have a reserved car park for rads patients (across the road and you still have to pay). I've made my appointments for 3 - 4 pm and the car park is half empty then. It costs Â£1.50 but there's usually someone just leaving who will give you their ticket.
How are the rest of you girls?
Thanks Mal....keeping fingers crossed you have no se's at all. Hopefullyas mild as the xeloda was with you.
My hands getting sore again. Having to put them on ice packs to try and get the heat out of them. Feels like sunburn on hands. Prob my skin will be like this for radiotherapy....what's the betting! Ha
BTW what's the parking like at Christies? I've heard it's really hard to get parking place and can be expensive,esp if going every day for x no of weeks.
No side effects at all - nothing! No tiredness, skin's not even pink. I'm going for no 6 this afternoon and then another 13 to go. They said they don't expect SE to kick in until towards the end. I did think I may have problems because I'm so fair (or I was. My hair is coming back really dark) and do burn in the sun. But there's time yet I suppose.
have you had any SE of the radiotherapy....just been on another thread where Lily200 is ahveing really hard time.
Thanks for the invite to yo9ue shin dig. Think I'll be doing the rads about then but will keep you up-to-date.
Goodness ...sorry about spelling mistkaes...getting late going to bed
OK? John Lewis meeting sounds good BUT I'm working mornings and rads inthe afternoon. Sorry - I would have loved to meet up. If anybody is in the Manchester area and fancies my 'end of treatment/cancer research' party on 28 March, let me know. It would be good to meet and there's already 4 BC survivors (I hate that word) going. Two bands are playing (for nothing) and the hotel is letting us have the room for nothing. Should be a good do - let me know. The Bower Hotel, Chadderton (one minute off the M60).
Hope you're all OK. I'm now 4 rads down and feeling fine.