Mal,
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.
Fiona x
Goodness …sorry about spelling mistkaes…getting late going to bed
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.
Take care.
Mal x
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.
speak soon
Fiona x
Hi Fiona
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 £1.50 but there’s usually someone just leaving who will give you their ticket.
How are the rest of you girls?
Take care
Mal x
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.
Fiona x
ps thks for the note about Christies.
Hi Fiona
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.
Mal x
Hi Mal,
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…
speak soon
Fiona x
Hi Fiona
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.
Mal x
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.
fiona.
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.
Take care
Mal x
Hi Mal,
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.
Fiona x
Hi Fiona
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.
Mal x
ps I’ve had 11 rads now and are just a little pink. Nothing else. You’ll soon be done and dusted.
Hi Mal…
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
Hi 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!
Mal x
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
Hi Fiona
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.
Take care
Mal x
Hi Mal,
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.
Speak soon
Fiona.x
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.
Mal x
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.
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.
Mal x