QD - what a wonderful thing you are doing here and I applaud you for the thought and care that is obviously going into this project. I only wish I could help you but I personally have had no contact with MacMillan . However, the brother in law of a friend of mine had cancer of the throat, was a widower and at the end was put into a Hospice which he hated. In order to make his last days happier the MacMillan organisation brought him back home and arranged for home nursing for him until the end. Hope this helps.
Dear Lisalouw and Shellebelle - i hope you feel better soon.
Girls I need your help.
On Friday week my school is having a Macmillan Coffee Morning and prior to that an assembly. I will speak in assembly about the work of Macmillan . The 6th form will tell of its "End of life" care but I want to uplift the whole shabang. so.........i would like to know how Macmillan have helped any of you in positive and practical ways. Did they arrange a gardener? Did they sort out some paperwork? Did they organise your finances? Did they help anyone you know?
I work in an all girls school and am the 8th member of staff to contract cancer. 6 had bc, I a brain tumour and 1 kidney cancer . Only one of us has died and I need to give a positive message to my pupils.
Thanks in advance
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Lisalouw and Shellebelle - so sorry to hear that you are both having problems. Whilst going through treatment I remember looking ahead and counting off the weeks until it was all over and I could start to get on with my life again. I haver been lucky so far and not had any problems. other than sacroilliac joint pain which I had prior to trteatment. It must be so frustrating for you both that you haven't as yet come out the other end. Thinking of you both and hoping that all will be well soon. Take care.
Lisalouw and Shellebelle-nice to hear from you. Sorry the worry demon has been visiting you. Think we'll be getting our money's worth from the NHS over the next few years. I've just had a hip x ray and I'm off to cardiology tomorrow. Herceptin on hold till heart issues resolved/eliminated from enquiries. Hope your investigations rule out anything sinister.
Thanks for the info, QD - that's cheering news! And that course sounds good - am going to see if I can do it, too.
Well, I got a grip this morning, went to the pool and swam a mile, for the first time since I was diagnosed this time last year. Which feels a bit like starting to get my life back.
No one is going to make me feel better except me, so I've just got to get on with it.
and I have to give Tamoxifen a proper chance, for at least 3 months, so I'm going to stop whining and focus on the positives, namely:
1) feeling sick all the time is really putting me off food, so I am eating less and losing weight - and let's face it, I have plenty of weight to lose...
2) I am sleeping alright and not having lots of hot flushes - so far my side effects are only nausea and aching bones.
It could be a lot worse.
3) not only can I go swimming, but the nausea is much less apparent while I'm swimming.
Also, I have reminded myself that Tamoxifen was not invented by oncologists simply to torture breast cancer patients - it is a powerful anti-cancer drug, which saves lives, and is a Good Thing.
Even if it does make me feel sick 24 hours a day.
hi Cybele - i was very nauseous on tamoxifen for the first month. its not too bad now (will start pack 4 tonight).
saw my onc today. he told me that my anniversary mammo is not the anniversary of my diagnosis (coming up eek!) but the anniversary of my surgery. so he doesnot want to see me for nearly a year!!!!. he said that breast tissue takes a while to settle. breast tissue that has been radiated takes loinger and that ladies have been sent for unnecessary scans and biopsies becasue the radiographers werent sure of what they were seeing.
hes advised me to go on a "Signs and syptoms to look out for of recurrnce and secondaries". its run by Bteast Cancer care - so Ive booked onto the november one. he also said that if I felt anything odd to not bother going to see the GP but to phone and they would see me straightaway.
so the ball is in my court. if i find another lump do i phone the hospital? bearing in mind that i absolutely refuse to do the living death that is chemotherapy? lets hope that is not a decision i have to make!!!!!
love to all
I'm feeling massively stressed about the Tamoxifen.
I've been taking it for 11 days, and suffering from constant low level nausea which is putting me right off food. I've also got aching bones. I hate it.
I was 7/8 for oestrogen, and I think Tamoxifen adds about 8% to my survival probabilities, so I really ought to take it.
But i really, really don't want to. It's not just the side effects, I'm just so sick of having my body messed about with. I'm starting to object to it in a really fundamental way. I just don't want any more treatment, especially not systemic treatment. Hormonal drugs are very powerful, and affect your body in so many ways. I think it's the systemic nature of Tamoxifen that is doing my head in. The chemo was systemic, but it was only for a short time. Five years of blitzing my body with this stuff?
I'm seeing my oncologist on Wednesday - I was meant to have started the Tamoxifen in June, but didn't because of the coughing problem. She's going to be dead unimpressed that I've only been taking it for 2 weeks, and even more unimpressed when I say that I'm seriously considering not taking it at all..
I know the rational thing to do is to keep taking it, but every fibre of my being is shouting 'NO! Stop it NOW!'
This is driving me nuts, and i find it difficult to think about anything else - not least because I'm feeling sick all the time...
I thought we were done with the nausea after chemo. Sigh.
100% agree Bc. Am going to try harder to focus on what I can change and not on worrying about things out of my control.......Well I'll give it a go anyway!
It's very hard not to worry isn't it Maire when worrying has been something you have done all your life. Before bc if things were going smoothly and I had no problems, then I'd worry that things were TOO smoothe and it must surely be the calm before the storm. I just couldn't help myself. If I'm honest I still worry in the same manner about my family and my animals but something changed with bc. My worst fear was realised and there was absolutely nothing I could do about it. Going through treatment kept my mind occupied in just getting through each horrible day until the next poisoning. Then I got through rads and my final appointments and then suddenly I was on my own. The next worry was getting my hair and eyes to look normal so I could go about each day with nobody noticing I looked cancer'ish, bearing in mind that I'd told nobody about my condition. Now I look and feel fine and when I first took up my life again and people would talk about things they were going to do etc. I'd think to myself "yes, that's all right for you but you haven't had bc!" It suddenly dawned on me that my stupid mind was ruining however much life I had left to live. We've always had aches and pains and these get worse with age, so I told myself that any aches and pains that I've experienced before bc could be ignored and got on with. My surgeon and onc and rads onc all told me that I was cancer free so on that basis I've taken up my old life and live each day without thinking about cancer. The only time it crosses my mind is when I have my nightly bath and I check for lumps and nodes. I kinda feel in my mind that if there weren't any there tonight then tomorrow I'm cancer free until I check again in the bath tomorrow night. It seems to be working for me so try it Maire. I promise you that you could not be a worse worrier than me, but there's not a damned thing we can do about preventing a possible recurrence and I refuse to let cancer ruin the rest of my life as it's already damaged me enough. If it returns then the worrying will start big time, until then ..... relax and enjoy!!
Wow BC, you have said what i think and feel but didnt have the courage to say for fear of upsetting anyone. I too do not think about cancer , or wiether it will come back , or where i will be in 1, 2 or 10yrs time. I have aches and pains but i did before and just put it down to life. we have to live the life we have, not ruin it by worrying about what might happen.
I fell off my horse on Friday and lay there thinking "oh that was not too bad" ( i lost confidence riding 18 months ago) then ponio stod on my foot and i thought ** ##*** that hurt. but its not broken ( did go to hospital) though black blue and the size of a rugby ball ..BUT i am still keen to get back on tomorrow and do not feel afraid to do so. This could sum up my cancer voyage...LOVE the life you have ahead of you and ENJOY IT.
humble apologies if i have upset anyone,
Cress - njoy your hol!
Mairie - adopt Cress's mantra. Getting cancer is a lottery, survivng cancer is a lottery. survival rates - theyre just numbers. any statistician can number crunch to show any number of outcomes. live for today and seize the day!
BC - njoy the show
Cybele - hiya!
i really dont like the fact that all the posts disappear when you make a reply. i need to see what people have posted so that i can comment on each one - instead of relying on my poor chemo brain!
tamoxifen - hot flushes, night sweats, feeling cold, tiredness, pudgy tum .
went back to work this week. i taught for the first time in 9 months the 1st 10 minutes were dire and i questioned my ability to teach but after a while my brain 'clicked' and i was ok. by the end of the lesson i felt like i hadnt been away.
BC-you're so right about the worrying. I am a natural born worrier and I think the Tamoxifen exacerbates that. I am at my worst when a new ache appears but will try to live for the now!
I couldn't agree with you more Cress. I too am approaching (about 7/8 weeks) the dreaded mammo and have already started worrying about the result. However like you I don't take Tamoxifen and I actually feel great. Completely normal, just as I was before all this kicked off. I have my old life back.
Most of my aches and pains are connected with my sacroilliac joint problem which I've had for the last 4 years so when my back is even worse than usual I don't connect it with cancer because cancer came after the back problems. I get the odd bout of fatigue but it's over fairly quickly and they are few and far between. I'm away this weekend doing a Sat/Sun dog show in obedience and because I never told anyone that I had cancer I can be completely normal and cancer just doesn't enter my head. Had I told people they would all be asking how I am etc and thus constantly reminding me, which I don't need. My mantra has become to live every day cancer free and thus enjoy my days and nights. If I should have the misfortune for it to return that's when I'll start worrying about it, but I simply refuse to mar every day with the thought of cancer hanging over me. The cold capped hair helps and the regrowth i s now about 4 to 5". Get sprouty bits but if anyone comments I tell 'em I had alopecia. End of conversation.
I have worried about things, especially health, all my life but I have freed myself from the chains that cancer binds. I'm living for the now and letting to morrow take care of itself. So Cress it seems tha t you and I have liberated ourselves
Getting back to the mammo, my original mammo came back clear so I'm not really going to trust a clear mammo result.. I'm going to have to ask my surgeon for a scan as that is when the tumour was discovered. Also a bit reluctant to have my lumpectomy boob squashed in that ruddy machine, don't mind about the other one. For some reason I still streat said boob very carefully although it is absolutely fi ne, and every night in the bath I feel both boobs , clavicles and underarm and neck for nodes while I'm all slippery with shower gel. Never did this before, just when I happened to think about it, but now it become a ritual.
So glad to hear from you Cybele. I thought you'd coughed yourself off the face of the earth and were orbiting the earth in a cloud of Dexy dust. I've even gone to your FaceBook page but no activity there either. Was getting quite concerned. Does sound as if you've turned a corner though, doesn't it.
We I have to be up at 4.30 am to get to my show so must go and get sone shut eye now. Something else to look forward to ..... I'm having a new Blue Merele Border Collie puppy on Friday so I will be in my element getting my puppy breath fix. Gorgeous.
Maire you must tkry and stop worrying. If it's going to happen it will or maybe it won't and you'll have wrecked your health with worry unnecessarily. Good luck and good wishes to all other ladies. There is no doubt Cancer has made me stronger.
mmmm, wonder if they will pass it on to St Evenage? maybe in an evidence bag? worse thing was i has pasta the next day and went looking for it in bag! chemo brain strikes again.....I can keep blaming it on chemo cant I ?
Well said Cress. Will try to live by your mantra. To that end I forced myself to go to the gym and have a swim for the last 2 nights and I do feel better. Enjoy the Lakes!
Off to the lakes today with the prodigal (now Australian) brother. Checked with the BBC weather and it looks like rain for the forseeable. I did tell them that it rains all the time in the Lake District, but they don't listen to me. Better look for my waterproofs and boots. Those lakes don't fill up by themselves.
I don't take any toxifen, but I can confirm that I am absolutly knackered most of the time and I have trouble sleeping and I have hot flushes and my bones and joints hurt. I feel like I have a little bowl of energy, which I have to carefully carry and manage to make sure I don't spill it, waste it, or just use it all up too early in the day. It's not a sleepy tiredness, it's more like a physical exhaustion, with heavy limbs and a need to just sit down. I blame chemo for most of this. Though I am STILL waiting to see the thyroid doc.
I have no news on my mammo. Strangly, I have decided that this is OK and I am not going to chase it. I think I have finally understood that I can't acheive anything by worrying. I have been telling myself (and others) this for a while, but at the moment I actually beleive it. If I get cancer back, I think the worst regret would be if I had wasted the period of time that I was not in treatment on worrying. So, I will assume everything is OK unless I know otherwise. I will probably have a letter waiting for me when I get back. Until I open it, it does not matter what it says and worrying about it will not change it's contents.
Hope you are all bearing up, see you when I get back,
Cybele, so glad to hear you are starting to recover. It is one hell of a bumpy road. I felt really well after chemo and rads but, like you, was very reluctant to take Tamoxifen but have now been taking it for 5 months. My side effects have gradually built up. I have experienced:
flushes- bit clammy and sweaty at time but find it pretty manageable just wear layers and take them off when I get hot. I also get very cold at night and am going to invest in a heavier duvet because I find it hard to warm up in bed.
Sleep disturbances-I used to drop off as soon as I went to bed. Not anymore. It takes a wee while to fall asleep and I wake up during the night and take a while to drop back to sleep again.
Tiredness-Though I'm not ' sleepy' tired I just feel not quite fully alert and a bit fuzzy headed. Don't have my usual energy.
All the above are quite manageable for me and I'm happy to put up with these side effects for the poss benefits.
However the worst side effect for me has been obsessive worrying. Every single ache and pain sends me into a panic about the cancer spreading. I was lucky in that no lymph nodes were involved (but there was spread to a breast node) but I've looked at the statistics and a small number of woman in my position are dead within 5 years so I can't switch the worry off. I now have a really sore hip, chest pains (which I think might be gastric) and had a sudden horrible headache that I convinced myself could be a blood clot. So if I'm not worrying about cancer I'm worrying about bloody Tamoxifen. Oh and my white blood count is low and I'm convinced it's the tamoxifen.
But every day I pop my pill. I am reluctant to take it for 5 years so I'm giving it 2 years to start with and then I'll have another think. However if I continue to go downhill I will stop taking it and take my chances.
I think all we can do is give it a go and take it one week at a time. The onc said the first 6 months are the worst, so I've only got 1 month to go to feel better (aye right!).Good luck.
The crackers party sounded good. If anyone is heading north please look me up as I'd love to put faces to the names.
sorry for long silence - have not been communicating much with the world in general of late, in any format.
I'm fine, just very very tired of it all.
My CAT scan was clear - the cancer has not spread to my lungs, which was a huge relief. My chronic coughing is now being investigated by a specialist at the Royal Brompton Hospital - he thinks it may be cause by a problem with my sinuses, not my lungs, which came as a bit of a surprise. More tests to come in November. He says a lot of people are misdiagnosed as asthmatic when the cause of their cough is something else. This might explain why the inhalers and oral steroids never made any difference...
This bout of coughing finally died down of its own accord a couple of weeks ago, after a really unpleasant 8 weeks, exacerbated by the huge doses of steroids I was taking.
Feeling a bit better now, physically and mentally, and have FINALLY started taking the Tamoxifen, 4 days ago. So far only side effect is mild nausea. And happily I have huge quantities of anti-nausea meds left after chemo to help with that. I'm feeling very tired, but then I was feeling very tired BEFORE I started taking the Tamoxifen.
How have other people found it? Did you have side effects straight away, or did they build up gradually? Is anyone side effect free? I've looked on the hormone therapy thread, but it's confusing..
Like Mandy, I'm just about at the first anniversary of my diagnosis, and feeling a bit weird about it. Mainly that I should be more over it by now. The 2 months of coughing after rads really did me in, so it feels like I'm starting to recover AGAIN now.
Still, I'm back in the swimming pool, and slowly building up my strength.
Was very, very conflicted about taking the tamoxifen - I have so had it with putting drugs in my body. I know it gives me a 6% increase in survival probability, but it still feels like one treatment too many. Just praying that this time I will get off lightly with the side effects. I read somewhere the other day that only 45% of women keep going with the Tamoxifen for the full five years...
Was sorry to miss the now legendary Milton Keynes meet up - Cress sent me a couple of wonderful photographs pf the event - it was lovely to see you all looking so happy! I will do my utmost to atternd the next one.
Hope you're all thriving and getting stronger xxxx
ps this new forum layout SUCKS - I can't believe they have actually m,anaged to make it even less user friendly than the old one - quite an achievement...
pps my post was just rejected 'because invalid HTML was found in the message body'. There wasn't any HTML in the message body..
And the cheese has been handed in at the nearest police station. They said they had the perfect evidence drawer for it.....
Mandy - that's fantastic about the negative gene test. You just slipped it in as a ps, but I was so happy with my negative result. So happy, I cried (of course). Your chance of the 5 years (and more) just REALLY went up. And you don't have to have any (extra) surgery. So much sh*t comes our way - but this is great, xxx
oh i dont know! i think the waitress had a good time - at least we gave her something to talk about!!!!!!
you have to get the cheese Coyotegirl and place it in that drawer!!!!! and we want a video of the consequences!
Why do we need hats when you model them sooo well QD! lol I had a great time and a great laugh and even managed to get to work on time. Mind, nobody else got to eat any cake.......and i hope you have saved my cheese Cress.
Fingers crossed for you Cress. I thouroughly enjoyed myself on Thursday but was totaly knackered on Friday! would definitely do it again. it was such a laugh! however I think everyone should bring the most outrageous hat they possess and we can have a hat show. im sure i could rustle up a red carpet............x
Had such a laugh in MK that I forgot about the Mammo. It was fine. I didn't cry. Stupid woman thought my Mx sight (which still hurts) was a good place to shove her hand in order to move me into position for the squash, but otherwise it was OK. Rationally the result has to be clear, as I had a negative result the first time when I had a 10cm tumour, so I can't see them finding anything this time. So, why would I worry????
Oh, sorry Maire - I was knackered yesterday - not sure what everyone else's excuse is. Anyway, it was lovely to meet with QD, Lolly and Coyote on the beach at Milton Keynes. QD actually brought Xmas decs and crackers, so we had our Christmas party in an Italian restaurant next to a dinosaur crazy golf course. I had thought about buying some crackers, but taken no actual action, so thank gawd we had a teacher with us. We got a few strange looks and one woman asked if we were trying to beat the christmas rush. Her dinner companion,however, was happy to put on a paper hat. He was probably terrified.
Everyone promised to do it again (maybe without the paper hats) so, hopefully you can join us next time.
Hope you all have a great time tomorrow. Wish I could make it but will be slogging away at work.....and it is a slog. Feeling pretty rotten-feel sure it's the tamoxifen. Really fed up with things. And just getting so worried about all the odd pains. So I sympathise Lolly.
I've been worried about Cybele. Hoping her lung problems are resolving.
Anyway enough gloom and doom from me. Have a great catch up and report back here. I'm hoping there will be some wig swapping (pics please) and a bit of mischief.
Good luck with the mammo Cressida. Just imagine the relief you'll feel once it's done!
just typed a load and lost it 😞
Hi to you all,
Cress good luck for tomorrow i know you will be ok you are a strong cookie, i will be thinking of you, have you made any arrangments as to where we are meeting up, and what time you will be there?
I am struggling with work at the moment i get so tired i cant concentrate i get sent home, so i wonder who will be holding who up tomorrow if we all get tired lol
Looking forward to meeting those who can make it, going to bring my camera so practice your best smiles
Morning ladies, nice to see a few people popping in.
Tomorrow is Mammo day. Have done a good job of not thinking about it. Mindfully speaking, there is not much point in thinking/worrying about something at a time when you can't do anything useful about it. That sounds easy....
Went with a friend and her baby to look around Ashridge House yesterday (they only open it on weekdays in August. If it weren't for BC I would have to go to work and would not be able to go and look). Whilst having cream tea on the terrace a lady I used to play badminton with appeared. She told me she had BC 3 years ago. All fine now. Has anyone not had feccin BC???
Anyway, it was lovely. Apart from my thyroid knackeredness I feel like I am really recovering.
So stuff the mammo. Much more important is that, afterwards, I will be meeting some of you lovely ladies. Really looking forward to that.
Sorry you can't make it Maire, as the mummy of the thread you should be there. You organise a Northern meet up girl. I will come.
ps, the pics are too small - I can't really see the hair, but I am sure it is fab.
Well I've finally managed to find my way around this new forum and hopefully this post will appear in the place intended. Haven't been on for a while and have been trying to catch up with any news. Love the hair Maire in the new profile picture. Judging from what I've read most Crackers are still having rubbish days intermingled with the good ones. On the whole I'm basically back to normal but if I get carried away with an energy surge and overdo things then suddenly fatigue hits back and almost knocks my legs from under me. Usually lasts about 36 hours and then I'm ok again. Competed in a dog obedience show on Sunday. Weather was gorgeous, company was great and my dogs worked well for me. Sat in the bath that night and suddenly realised that BC hadn't entered my mind once that day. It was a good feeling. Just about to go into September and niggling at the back of my mind is the fact that end October/early November will be mammogram time and I'm dreading it. Not the procedure but the result, but I suppose this is going to be how it is for all of us for all time now. Depressing thought.
Has anybody heard from Cybele? I can't believe she's been so quiet. Anyway ladies those that are meeting up - have a lovely day and enjoy. Hope everyone is gradually getting back to a new normal.
Well here I am in all my dyed ginger glory! That pic was from last month so a few more millimetres growth since then!
well i managed to move my pic - but it wouldnt let me do it on internet explorer.I had tro use google chrome! I will be back at work a week today Soooo very excited! x
Love to all
Thanks for moving Mandy over.
And hello to Mz, nice to see you again, not many of us left now it seems. Always good to hear an update, xxx
Mandy - you have started your own thread! So sorry you can't come, but I understand.
Energy is definitly a problem. I am having my mammo in the morning, so have no idea how I will stay awake, but I am looking forward to seeing the Crackers that can come.
Moderator - I only saw this by accident - please move it into our December thread, so that the others can see it - thanks