Hope you all have a great weekend. So the first week of 2009 is now done and a lot of us seem to be back at work already.
I’m on a work retreat down in the Peak district this evening… 48 hours, 27 geeks, a dozen presentations, 2 wii consoles and an awful lot of planning for the next election… wahhh keep your fingers crossed for us. Poor Tommy’s fighting a Migraine right now so it’s all looking a bit hairy. That and I felt awful yesterday, had to go back to bed twice and sleep 12 hours overnight. Just felt so achy and sick. Does anyone else occasionally feel like they may have had more treatment than they really need?
So should be back on Monday and then all I have to do is my tax return and move house.
So if you don’t see me here again before Feb you know why.
Hi,
still having fun with the rads burn so bought aloe vera gel this time. An hour later I had a nice fringe of burnt skin hanging off my chest - nice. it mad me peel even more and the skin underneath is so red and not happy to be out in the air. I spoke to the rads hospital again and the sister said day 7 - 10 is the turning point so it should improve from now on. She said it would heal better and scar less if covered by a dressing not it was breaking out, so had to get some special space age gel dressings for radiotherapy damage. they are brilliant and just cling to you to separate the breast and chest skin. It is where they touch that i am red raw now. So fingers crosse it is on the up now. Visit to the surgeon on Monday so will see what he says if not better by then. It is a problem going to another hospital as no rad done in our town so no experts. it is a big unit with 2 rooms for ladies and men seem to go somewhere else, so not sure how many machines there are altogether. Julia hope you are luckier than me. I was fine, just felt a bit hot after week 2 but hardly any red to see. The day after I finished it went mad. Withdrawal symptoms maybe!! Have you started your tablets yet and have they made their decision about herceptin. That is another year of going every 3 weeks I believe, but a very successful drug. Angie have you started your nolvadex yet? How are they going if you have? Hope the geeks didn’t bore you too much and good luck with the packing and house move. Lisa I agree we do too much, except I am not working so maybe I am the exception. Mind you I have had tiny terror all week so feel pretty tired every night. Lorraine I would love to be permanently cheerful and I guess mostly I am but every now and again. Doooooooooooooooown. Hoping time makes it happen less often. How is your back now? And yours Angie? Nicky has you heart settled completely now? Brilliant if you can get rid of some of these worse side effects. You can always do one of your short trips over here some time if you feel like it. We are hoping to go to Brands Hatch again this summer, which track do you go to? Would be great to meet up if anything suitable comes up. We should all post if having a UK holiday over the years as we may all eventually meet. Sorry i am not in a nice seaside spot!
Off to more venues tomorrow. Hubby has done his back in and got stuck on the train, then could not lift his leg up to get on a bus when he got into London so had to walk. I am sorry to say everyone he told, including me chuckled about his story. We said he could have bought a red rover and travelled round on the bus all day like a mascot! He will not see anyone about his back and suffers all the time so we are not as kind as we should be. I have a silly, annoying cough so no doubt will be in trouble for bouncing the bed - steady on!!!
Enjoy the weekend. Anyone got anything medical next week?
Lily x
Hi Lily
What a shame all this redness and soreness has come out after rads. Just when you think you’re ‘done’ there’s something else to sort - the story of all our lives during this episode. Touchwood (ie my head!) my heart has calmed down a lot. I did get a bout of palpitations last weekend, yes, I had been drinking but only a glass or 2 that evening. My ED suggested it was a reaction to such a small amount of alcohol after the huge amount I had on NYE So generally a lot better than I was plus the tummy has settled down although occasionally I get a couple of blips but it also took a long time to settle after chemo/anti-biotics had stopped. However I seem to get headaches a bit more at the moment which is worrying for me where I am with this blooming disease but having said that my A I’s and heart tablets both list it as a fairly common SE. In fact the thread on here about Arimidex has loads of women saying they are on paracetamol for them. I will let you know if we are at any motor events your way. Between the girls and I we bought OH a driving experience at Goodwood for his Christmas present so we will all be going along later this year to see how he enjoys it. Sorry to hear about OH’s back, funnily they never seem to get things looked at as we would. Yet they moan about their continued problems! I’m off to the vampires lair on Friday ready for my treatment next Monday, hopefully straightforward and over with by lunchtime.
Have a good weekend, it’s snowed here overnight so will be out for a walk later - I keep being told by other locals who walk over the Common that I need a dog as I seem to be the only one without one. A nice idea but OH and I are just getting used to the idea of some freedom later this year and don’t want to be tied down with more pets etc.
Nicky x
hi everyone
hope your living it up! having a wonderful weekend? my back pain is still hurting ouch. and i mean really painful, i cant even move to turn around in bed, and have to grip on to the sheets when i get up. and its even uncomfortable when i dont move, i go to see onc next wednesday cant wait, boy have i got some questions for him.
lily 2000
your poor husband , i sympathise , and i can feel the pain when you cough in bed. im praying i can get back to work next week, but its worrying me, because its still pretty bad at times. i just want to get back to normal, my eldest son was so unsympathetic this morning that i ended up crying, not like me, but when youve been in pain for 5 days its enough to make anyone. i hope your body settles after the rads.
Nicky 08
well i never, you just cant wait, dirty weekends on the horizon already? is that maybe why the headaches come on.?
Hi,
well the space age dressings were fantastic and just sorted it all out. I still have peeling patches but it is not bothering me at all. I am sure that keeping the skin of your boob and your chest apart is the way to go to avoid this.Mine like everything else slouch south and lean on the next biggest bulge!! LOL. Sorry, prob put you off yout dinner now.
Went to 2 more wedding venues today and we all fell in love with the same one -luckily! We have the whole place for the day so get a dining room all laid up with cream linen and bows, a disco room and bar, lounge with sofas for quiet moments, outside courtyard garden with seats and another bar, a really gorgeous ceremony room in a separate little building and a huge farmhouse with 8 bedrooms. The immediate family (if bride and groom agree of course) can all stay at the farm house and all have a big cooked breakfast together the next morning. Bride and groom get their own sectioned off part of the house. That was the easy bit, now we have to work out a budget!!! Needless to say I am planning my return to work and full wages pretty smart. The whole setting is a barn so very cosy and exposed wooden beams everywhere, set in the middle of the countryside. I was very close to blubbing looking at the happy brides in the photos they showed us and had to do that ‘think about something else quickly’ move and bit my tongue to add pain to help. The second venue was fab too but we had been to wowed by the first to be compromised. I await the verdict when they have done their figures but don’t think it will be a comfy bill. Hubby was totally incapacitated in bed with his back. Lorraine he sounds just like you. I even had to get him a bottle he could drink from without sitting up. I also bought a heat pad that you plug in to warm the whole back area but not much good till he gets up. He is overdosing on Syndol tablets as they are painkillers and have muscle relaxants in them too. Hope yours improves very soon. I will tell my Victor that you have been like that for 5 days and try to frighten him to see a doc or someone. He hates anything medical so never goes. Sorry you have been upset too, it is so frustrating I know to get through treatment and then get something else. Just this cough is driving me to distraction as it starts every evening and morning. Sound like I smoke 40 a day sometimes!
Nicky I understand your worries completely and think we will always get more anxious than others about pains. Headaches are so common and being side effects too, you have to try to put them in the normal box. Easier said than done I know and I have worried about every little thing, including the cough so I am no good at dishing out advice!! Thanks, the burn is fine now and I don’t even remember I have it mostly. The dressing worked so quickly, it is amazing stuff. Are you back on all foods again now? I am getting fatter by the day due to enjoying the taste of food so much again. Hope the vampires were quick and good luck on Monday. I get my 9 month surgical check up that day too. Looks like I might be going on my own if he is still in bed! I have tiny terror too, so will need a good plan to keep them all in the right place at the right time. Better go and do next round of ‘in bed drinks and food’
Lily x
Oh god, don’t mention food. This work retreat is good but it seems there;s a price for having any fun. in my case it’s spending the evening in the loo talking to white elephants and needing to sleep every 6 hours. The problem is the heat from 27 people all being in the same room without aircon. I used to hate aircon but now I feel so sick if I get hot. I’ve eaten nothing but dry toast for 3 days now… Am just consuming a bowl of museli with home now.
Everyone’s been so sweet, it’s the 1st time I’ve seen most of them since my diagnosis so I really wanted to just be well and this to be behind me but life’s not like that is it
Thank god for Lucozade and Dorset cereals.
Lorrainne. So hope your back is better soon. I know what homeopathics to use there so ask if you want to know. I don’t want to force any info on anyone so won’t do that unless people ask now.
I think we’re all a lot weaker than we think. In comparison to when I was diagnosed a year ago I am so much weaker.
Hi: Haven’t sorted the pills yet, should be seeing Prof on Friday to decide on what. Am concerned about Herceptin as I have bad family history on Ma’s side for heart trouble - Mum’s sister died of heart attack at about 50 - long before I was born, of her six kids three have heart trouble, one died waiting for transplant, one daughter has cholestrol levels of Guiness Book of Records levels and is on continual treatment for that. So am not too happy about doing anything that could affect the ticker. added to which my tachycardia palpitations are worse now than six months ago - probably SE from chemo - and I get breathless with them sometimes so will have to run thru all this with the onc. I think around here they just do six months Herceptin not 12, but all will be revealed on Friday.
hope all the bad backs are getting better - girlfriend has horrific cough and has cracked and rib and torn two muscles with coughing. She was on liquid morphine but was so spaced out has had to give it up.
Hi,
hmmmmm mouth tightly closed and avoiding coughing like the plague after hearing that Julia. It just sits in my throat and is so annoying. The cold weather sets it off too, every time I go out the door or even open it. I had to pick my son up late last night and could hardly drive for coughing, the night air really gets me. Keep us posted how you get on in your Friday appointment. It might be worth looking up all the drugs he could give you to see if there is one that suits you best. How are the rads going? I started to feel it very slightly during the later part of the second week but by the morning any pinknesss had gone again.
Angie sorry to hear you were yuk. Hot cars make me get terribly travel sick, that breathing in warm stuffy air - yuk. Are you feeling better now? I will have a peek at that place later but sounds lovely. I have to say the wedding has really helped me to think and talk about other things now. Just a word of caution, if you were having a civil ceremony at the venue, check when the registrar is free too. You have to pay for them to come to the venue and on certain days there may only be one available. You can hold the date 2 years ahead provisionally, so a lot of dates get tied up early, especially May onwards. We found the popular places are already half full for Summer 2010. If you can marry mid week and take a cancellation, you can get an amazing drop in prices. Lots of luck in finding a place that is just right for you two.
Better go, tiny terror stayed last night and apparently we need to discuss pepper pig!!
Lily x
my younger son(13) as had us up the hospital all day, he went for sleepover at mates and they were running about and he put his hand through a glass door by accident, so he had to have an op. he had severed 2 tendons, we got the call at 5 this morning and only got back at 6 this evening, so not an exciting sunday. and i hated the memories of the theatre that came back when i waited with him to be aneathatised. i hope i never have to have that again, but im worried about my back because its so bad, i think it probable is muscular in my lower back, but it as set it off at the top were i know i have some spots on the bones.
anyway i dont know whats going to happen about work on tuesday, because time is ticking away, and the back is still hurting especially in bed. lily i sympathise with hubby, its no laugh! im going to bed early see if i can get a good night, so all take care x
Hi
Lorraine, what a terrible terrible shock it must have given you to get called. I am so sorry to hear about it and guess it would have been very scary for him with all the blood too. Poor old chap. I have spent more time in hospital with my son after accidents than I care to remember, boys do just rush into things and have no fear. Have they said that the operation was successful? I think I might use looking after him as my reason for having a few more days off as he will need care. It looks better on your work record, you get a bit more rest and he gets some tlc. I am sure you would be worried if he was on his own trying to get lunch, etc.
As if you needed anything else!
Biggest hugs and back rubs with deep heat
Lily x
God we all worr at the drop of a hat dont we, suppose its normal, drive my parents bonkers, feel fine at wor, come home then it hits in.
Lily, venue sounds lovely! Glad red patches gone down - i still have spots on my back that appeared a few days afterwards.
Lorraine - hope your son aint suffering tooo much and your back gets better soon
Angie - venue sounds lovely. I cant cope with getting hot, wanna rip clothes off which wouldnt be a good site
Nicky - try not to worryabout headaches, mine have eased of now but a few weeks after starting arimidex I had awful headaches and was taking paracetomal against my better judgemen, however I must admit over the last week or so they have eased off
Had far tooo much booze in pub with my best mate who I havent seen over xmas as she ha flu so had lovely catch up and still ate healthy - weigh in day tomorrow so fingers crossd loss something
x
Lisa, I know what you mean about feeling fine at work. nearly didn’t want to come home. Finally got some sleep on Sat night and another full day on Sun, managed to eat so asking pertinent questions and grilling people was all fine and so was the attention spam. A 40 min dose in the evening and I was ready for a night of silly card games and wine with friends. Cancer was a distant memory for a while and it was lovely.
I’ve now been put in charge of a project I won’t be able to talk about for a long time (roughly a year) so feel like my life is back and I’m back but certainly have to keep an eye and make sure I don’t overdo it so I doubt I’ll have time to be on here so much now that I have responsibilities again… you can always reach me through facebook or email though.
Am going to collapse into a little heap now and hope you all have a really good week, and I hope everyones aches and pains subside and your son heals well Lorraine.
Loads of love to you all
Angie (in recovery… 27 geeks, 24 hours of meetings in 72 hours of real time… done… and wow what an amazing weekend)
yes it was quite a shock when i got the call from hospital, but i think im getting used to being shocked. my eldest two were bad boys and lots of calls from police and hospital, so this one is an angel so far, and i really hope it stays that way. he didnt want to stay off school cos hes missing the attention off the girls. they have made such a fuss of him. he manage to wrangle a new tracksuit out of me, cos he needed a front opening top and he never had one. oh well, whats money! hope your soreness is easing. are you allowed to put something cool over the soreness. my back is still bad but not as painful as before, mainly its in bed, ive told them at work, they may not be pleased, and im worried but i really cant do anything about it. i will check things out with onc on wed, along with a long list of questions.i hope everything goes ok for you when you go back to work, its hard to judge how much your up to, mentally i feel positive and want to carry on as normal, but the body is not so willing. at least with teenagers (i think thats who you work with) you dont have to get up and down, but then you have to put up with their silliness at times, i dont know how you do that? but then again i think theyre mostly ok if you treat them like
humans and not aliens.
lisaf.
thanks for the kind thoughts hope you doing well.
everyone else take care . live it up a bit, and have fun!
x
Hi,
I think (will know more when i actually go to work again) that being back at work is probably the time we forget thisc…p and feel like we used to. Somewhere between work and home, the old dark thoughts surface and you wonder if you are just fooling yourself. A bit of a battle we all have to have until Bc gets kick boxed into a corner of the brain. Mine keeps coming out and launching attacks like Kato on Inspector Clousseau (spelt that wrong!). Anyway wishing you more peaceful times as we dodge scary appointmnets and things.
Angie, I feel the need to sleep just thinking about that work. Can I also say that I felt you have always been enthusiastic and keen to help others with homeopathic remedies and I am saddened that this has been taken in any other way.
Lorraine, glad to hear the cheeky rascal is well enough to want fuss from girls and negotiate new clothes too!! Hope your back is improving. I have made Oh an appointment with a physio on Wed. She insisted on talking to him personally and he has been told to keep moving and not to just lie in bed. When in bed he has to keep moving legs and have pillows under his knees when lying on his back. When lying on his side he has to have pillows between his knees (like when preggers!). Not sure if any of that will help you. Don’t forget we are covered by the Disability act so our employers have to meet our needs, so don’t worry too much about them. I know you always feel worse if you are new but think how you would feel towards one of the others if they had flu or broke a limb, that is how they are/should be thinking of you. I don’t have much trouble with the older kids as I don’t wind them up but at 11 or 12, some only respond to being told off loudly, which I don’t do very often at all. I get really mad if one bullies another or hurts someone though. Always in the wrong place trying to stop trouble and fights, so have taken a few wallops myself in previous schools! My current school is very middle class so a different atmosphere. Lots and lots of luck on Wednesday with the onc.
My consultant was ill so my appointment was cancelled today. they just left a message on 1571 and hoped I would find it! It is now resceduled for my birthday. Fab! My burn is improving fast although my Gp was wincing looking at it, when I went for more supplies of the dressings. I have now negotiated a back to work day. He kept offering me weeks extra, which was really nice to think I had that support if I needed it. I have my Gov get me back to work interview tomorrow. What a load of rubbish and I am hoping not to get a sweet person, so I can be really bolshy.
Hi everyone else, are you ok?
Lily x
hope you all enjoying the day, or the moment at least.
lily 2000
thanks for your advice, i do sleep with the pillow between my legs sometimes, hope hubby sorts his back out. go to onc tommorow, so see what he says regards work. my youngest as gone to school today, he hates being off, but i think its more about seeing his friends than the school work, (we werent like that, were we?) i think i was actually, i hated school.
sorry your appointment with onc , was cancelled im looking forward to seeing him, it feels like their the only ones with the answers we have to ask. ( although the advice on here is great). what would we do without each other, suffer in silence. probably.
ive done more housework today, so maybe back is getting better, but its still hurts at times. still worrying about losing time off work, why cant nothing be simple.
vertangie
i would love some advice, what can i use. i need a miracle cure!
Hi buddies
What with work and 2 daughter doing college work the computer seems out of bounds! A quick catch up before anyone else wants to use it!
Lorraine - really sorry your back is still playing up but it can take ages to sort itself out. OH had a problem last year and ended up going to an osteopath to get it sorted and even then it took a bit longer. He was given strong painkillers by GP but these didn’t sort it completely so with any luck yours is also a pull or strain and will get sorted. Hope all goes well today with onc and he sends you on your way I do know how frustrating all this can be. I had expected to be working pretty much my normal 3 days a week after chemo ended. Oh no, that didn’t happen! I seemed to spend more time than ever off work and at one medical place or another. I’ve only just got back into my stride now and just waiting for the next little thing to stop me! Take care though and be good to yourself. Hope your son is also recovering - a big shock for you all, I remember my younger brother doing the same thing but not so badly cut.
Angie - a year’s project - well that gives us food for thought! So glad you and the other geeks had a good weekend - not my idea of fun I must admit but someone has to do it! Really pleased it means you also are back into the real world and picking up where you left off. I know you won’t be on here as much but would love your email so I can pester you occasionally if I’ve not heard anything! Also I can visit you if we’re in your lovely neck of the woods. Don’t think this is an idle threat either as I’m good to my word - ask Lily - I’m descending on her next week, ha ha! Good luck with the work the move and the wedding - boy you know how to start a year off!
Lisa - hope you are doing well. Good for you to get out to the pub - that’s what they are there for! I’m all for meeting with friends for a drink (or 2,3,4) and a catch up!
Oops - YD is up and needing the printer will sign off and continue in a min
Nicky x
Right, I’ll continue…
Lisa - I read what you said about it being difficult when you get back home (but it’s on the other page so sorry if I get it wrong). It must be so tough on you dealing with this and all the other things that have gone on in your life like losing your OH and the death of other family members. No wonder it hits you when you’ve got time to thinks about it or are on your own. I hope you can keep yourself and your mind busy (in a positive way!) which can help. This time of the year can be so difficult and fairly gloomy most of the time with the weather not helping either. Hope things pick up soon but I know you’ve also got alot to decide with possible ops etc. Keep using us as a moaning board! Also meant to say if you are looking at cosmetics and stuff one of the things to avoid seems to be parabens which are a preservative used in loads of toiletries etc. There seems to be a link with BC, although not fully proven as with most links, but they are worth avoiding. A lot of more expensive stuff doesn’t have them but look out for natural or paraben free ones in Boots and supermarkets. Tesco do a good affordable range called Be Natural, also health shops will have them but ttend to be more expensive. There have been threads about this before - worth a search.
Julia - hope appt goes well this Friday and you find out what’s next! I’d love to know if any heart problems like you have or I’ve experienced have been linked to after effects of chemo. Maybe your Prof will know? Hope yours settle down and you can find out about Herceptin.
Lily - hope burns are healing nicely. Once the worst is over try putting Vit E oil on the area, it may mean it clears up even quicker and leaves no marks - who knows when you will be baring all? Wedding venue sounds fab - just hope you and OH are sitting down when the bill comes in! Hope the ‘back to work’ interview went well and you get a job LOL! And that you behaved yourself and didn’t tell them where they can stick their forms! Sorry to hear Onc appt was cancelled we seem to get all ready for them one way or another and then have to build ourselves up again if they get changed. I’m coming up to the same time of the year as last when I had my (routine) mammo that showed my recurrence up. I just had a feeing all along that it wouldn’t turn out to be a blip on the screen, however hadn’t quite expected the outcome that eventually happened. Oh well, in some ways I hope to be better off than this time last year as my BC responded to chemo so, like Dr Who, I hope to have gone back in time!
Off to sort the H out today - I really hope something can be done to lighten it as I hate, hate, hate wearing my wig still. If not I may get it shaved off and start again! At least wiggy wouldn’t be so uncomfortable then. I was interested to see wigs are making a come back as a style statement. Brilliant for all of those who don’t have to wear them all the time and have any of the fashion writers ever worn one for more than a photo shoot - I think not!
Take care all and sorry if I’ve missed you out. Bev are you back yet?
Nicky xx
hi nicky glad to see your back on form, enjoy the drink or two, with mates will do you good. im just going to have a nice bath, and get ready for appointment with onc, later. i need to shave down below, why does that area grow so quick compared to the head. im now going around all the time without the wig, just waiting to have it coloured like you, but mine seems ok if i stick the old gel on, in fact it seems wavy then, chemo hair as people say. my sister was supposed to have her chemo today, but her platlets are low, so been put off, shes relieved in one way, but wants to get her op done so is dissapointed as well.
i can imagine you found it frustrating at work having to keep having time off, but was it easier with them knowing about everything before. it just seems terrible with just starting, bet their wishing theyd not employed me. nothing i can do except ask onc today, and try to move about as much as i can. my hubby of course is as sympathetic as ever, but never mind at least i have everyone here to chat with, it does help to let of steam. especially with these hot flushes! take care enjoy the day.
god bless you all.x
So generally a lot better than I was plus the tummy has settled down although occasionally I get a couple of blips but it also took a long time to settle after chemo/anti-biotics had stopped. However I seem to get headaches a bit more at the moment which is worrying for me where I am with this blooming disease but having said that my A I’s and heart tablets both list it as a fairly common SE. In fact the thread on here about Arimidex has loads of women saying they are on paracetamol for them. I will let you know if we are at any motor events your way. Between the girls and I we bought OH a driving experience at Goodwood for his Christmas present so we will all be going along later this year to see how he enjoys it. Sorry to hear about OH’s back, funnily they never seem to get things looked at as we would. Yet they moan about their continued problems! I’m off to the vampires lair on Friday ready for my treatment next Monday, hopefully straightforward and over with by lunchtime.
I do know how frustrating all this can be. I had expected to be working pretty much my normal 3 days a week after chemo ended. Oh no, that didn’t happen! I seemed to spend more time than ever off work and at one medical place or another. I’ve only just got back into my stride now and just waiting for the next little thing to stop me! Take care though and be good to yourself. Hope your son is also recovering - a big shock for you all, I remember my younger brother doing the same thing but not so badly cut.