I am gutted to be here with this news, but Queen Drama died on Friday. She got her secondary diagnosis just a couple of months ago and didn't tolerate the chemo very well and died in the hospice after a nasty infection.
I was lucky enough to meet her and get to call her my friend. She was not just cancer, She was a wife and a mum to two teenagers. I won't put their names, as I don't have permission, but she was loved by her large family and many friends. She was an actor and a respected drama teacher at a girls school where she managed to direct a production of Annie between primary treatment and secondary diagnosis. When she want back to school she also took on the role of being responsible for vulnerable pupils, which she loved. I wish we had her longer so I knew more about her, because I want to make her real for anyone not lucky enough to meet her.
We will always remember having Christmas in July in Milton Keynes, where she bought actual crackers and decorated the restaurant around our table. It seems even more cruel for her to go at Christmas.
Please join me in a standing ovation for the unique Queen Drama, never forgotten, xxxx
Good to hear from the old 2012 crackers. I'm still in limbo land wondering why I have so many ailments despite normal bloods and scans. Think doctors are sick of the sight of me and have me down as a neurotic.
Glad to hear you're doing so well depite your secondary diagnosis SPO!
This time 2 years ago we were all contemplating the start of chemo and we got through it. Enjoy the festivities.
I've just popped in & conscious that I was a low key 'straight to secondaries' Dec chemo participant, thought you might be interested to hear how i've got on.
Topline is I'm well and working Like many of you, the side effects of Tamoxifen, Herceptin and now Xolandex are taking their toll. But... I'm alive and well, 2 years later, even with secondaries! I'm just about to go on holiday, travelling around India, covered by Insure Pink. I skied (gently) last March, which gave me an incentive to start exercising. I had a wonderful time at the Edinburgh festival in Aug. I'm having my ovaries removed in Dec (to reduce oestrogen) and am re-aligning my cancer-free breast at the same time.
My point is, although I too, feel like I'm one hundred and three, despite my dire original diagnosis, quality of life is good, future of treatments is optimistic.
I'm not pretending it's not hard. I returned to work full time a year ago and amidst change am in the process of stepping down. I find it very difficult to reconcile the fatality of secondaries with no evidence of tumours at the moment (I responded well and was lucky). I just hope to dispel fears of any other Dec groupees who progress to the next stage.
I have this weird notion that there's an element of my situation that's easier than those post-primary. I'm not fearing it coming back, as I'm forced to accept I have it, as it's in my blood stream, even if tumours are not currently visible on the CT.
In hair news, the 50% I lost from my head has grown back curly, which has made for an interesting 80s perm / farrah fawcett major effect. But the black hairs which grew either side of my nose are long gone and I have reasonable eyebrows!
If anyone pm's me, I think it forwards to my email.
Wishing you all well... Sarah Parris
Hi Maire and Shellebelle,
Like you I lurke a bit and pop in on the odd occasion. Most of the time I'm trying to forget any of it ever happened but like you I'm now two years from diagnosis and will have my second check up early January. As the time draws nearer my anxiety increases and I tend to draw closer to the group for comfort.
I too am full of aches and pains mostly in my muscles due to taking statins for several years. I've come off them but the pains go on! I'm not on any other meds and apart from muscle ache I'm doing ok. So glad to hear from you ladies that you, too, are getting there so to speak. Two years ago I thought the end of the world had come - doomed in fact, but I'm still here and life is pretty good. Just wish I could push the worry of the check up out of my mind. No good worrying, can't change the outcome whatever it is, but somehow I can't seem to stop. Are we all the same or is it just me?
Good to hear from you.
I still pop in. Mostly to see how people are doing on Tamoxifen. Still struggling a bit post treatment.
Hope all are well and moving forward.
I don't know whether anyone from the thread still drops by, as I don't really check in myself that much anymore, but as it's been 2 years since my diagnosis I feel drawn back, just to say hi. I'm still here, alive and kicking and hoping that all who shared a good 6 or more months of their lives with me through chemo, are all still doing well and enjoying life, as I am.
Lots of love
Hello everyone! Louise - I have sent you a message - it should show at the top right of your screen. If anyone wants to contact me - send me a PM and then I will get an email alert. I don't check in here very often, but I love to hear from people, xxx
hope you all have a fab easter. i would normally say dont eat too many eggs but dyu know what? go for it! life is just too short!
Hello ladies! Have just popped in because I met with Lolly and Coyote on Friday night and I wanted to let you know that we are all still here and doing OK. And then I saw a couple of new posts. Hello Maire and Mandy.
After 2 years of this cancer sh*t I am going back to work tomorrow. Eeeeek.
Love to everyone, don't forget to message me your email address if you want to keep in touch,
Hi Mandy-glad you're on the road to recovery. I feel I've turned a corner recently. I still have aches and pains but some things have resolved-like my twitching eyes-6 months of twitching has now gone. Must've been the Herceptin. I feel 100% better in terms of tiredness etc. Still got weird things going on (latest is tingling on tip of nose) but generally beginning to feel back to normal. I just wish they would be more truthful about side effects of some of the treatment. It would have saved me months of wasted worry.
Hope all the occasional crackers are beginning to have a skip in their step!
Sorry about the lymphoedema, QD - fingers crossed they'll be able to sort it.
Good luck with the final oncology appointment, Maire - and I agree with you about the ultrasound idea. That would be very reassuring.
There isn't really any follow-up, I don't think, apart from the annual mammogram. I've got another oncology appointment in May, but only because I took part in the Fast Forward radiotherapy trial (although I was in the control group, so still had to do the normal 3 weeks of rads). Otherwise, my next appointment would have been in 2 years' time, when I am due to change from Tamoxifen to one of the AIs.
I'm OK with that, actually, I have developed a huge aversion to doctors and hospitals in general. Don't want to go there or think about cancer anymore. The chemo is now starting to feel like a particularly bad dream. But of course it's impossible not to think about it entirely - like everyone else, every time there's an odd ache or pain, i start thinking 'what if it's back?' But on the whole, have got to the stage where cancer is no longer at the forefront of my mind.
Went to the dentist for a check-up the other day, which reminded me that at this time last year I was having chemo AND root canal treatment - ah, happy days..
The dinner party went really well, thanks, and felt very symbolic of getting my life back. I must recommend Nigella's lemon almond polenta cake - it was fabulous, like lemon drizzle cake, only better. I'm going to experiment with making a sour cherry version.
Oh QD, that's pants! (As my kids would say).
Good they've caught the lyphodema early.
I'm off for my final (?) Onc. appt today-I have a list of niggles to moan about :sore side, sore hip, niggly headache, eyelid twitch. The worry just never ends.
I don't know what sort of monitoring we get after all this. Wish they would give regular 'womb/overy' ultrasounds to us Tamox ladies if only to put our minds at rest and help us with the psychological hurdle of popping those pills daily.
Hope the meal went well Cybele. Good to get normal life back on track.
hope you enjoyed your food Cybele.
well its rant time for me.
I went to hospital today - driven by pain in my arm and side.I have:
1 Mild lymphedema (damn damn damn!) so am being referred to lymphedema clinic. Hopefully thay can "catch it early " before it develops any more.
2 Pulled muscles - am being referred to physio!
3 Following my surgery I am now asymetric! (This is probably the cause of 2 above).I was offered surgery to reduce the other side but can't face any more so tomorrow I get to meet the lingerie nurse who will fit me with a special bra - which has a pocket in which i can store a "chicken fillet". Oh the joys the joys!!!!
today I'm giving a dinner party for the first time since I got ill. I've made Nigella's lemon almonda polenta cake (one of the guests is coeliac and can't eat gluten), and at the moment I'm happily making dinky little canapes: parma ham spread with goat's cheese and rolled up with a bit of rocket and watercress inside, similar thing with smoked salmon, cream cheese and asparagus spears, and hard boiled quails' eggs, to eat dipped into celery salt.
My dilemma is this: I used to go to a restaurant years ago where they served quails' eggs like this, unpeeled - you had to peel your own. But all the recipes I've looked at suggest you peel them before serving.
I think they look pretty with the shells on, but they are quite fiddly to peel. So. anyone got a view on whether to serve them with the shells on or off? #firstworldproblem.
Isn't it nice to be able to be preoccupied with something other than cancer?
Life goes on... :))
Hi everyone. congrats Maire!
ive not been on for a while because i directed the school production - "Annie" . it was fab and my students did a fab job. At the weekend i slept for 14 hours!!!! i mustve needed it. like most people here im sufferning from tamoxifen sleep loss!
stay positive and enjoy tyhe snow!
Maire and Shellebelle if it's any consolation at all I too have awful sleep problems. Aways tired, fall into bed then can't get off to sleep for hours, then sleep spasmodically for a couple of hours then lay awake till it's time to get up - still tired. The point being that I've been like this for the last five years and I'm not taking any medication for BC I put it down to the menopause. The doctors are sympathetic but don't do anything to help. I've been so desperate for sleep at times that I've bought sleeping pills from internet pharmacies.
Also know what you mean about the odd aches and pains becoming secondaries in your over active mind. I have chronic back problems but have had these for years so they don't really worry me but for the last 9 months I've had an ache/pain in my neck, shoulder and arm on the side that the SNB was done plus the lumpectomy. This has really worried me but I now realise it's repetitive strain injury from where I sit in my armchair with my laptop and use the mouse on the arm of the chair. Also one's posture is probably not good when bending toward the screen. It wasn't until my husband decided it was too cold in the computer room and dusted off his own laptop and sat in an armchair using it, then began to complain about a pain/ache from his neck to his forearm on the right side, that the penny dropped. What a blessed relief - do understand where you are coming from though. It's so good to talk about these things to others who understand. It makes me feel less of a hypochondriac.
It's rubbish Shellebelle. I mentioned the short sleep cycles to my doctor at the breast clinic recently and she confirmed it was a side effect of the Tamoxifen.
I think It will be a very, very long time before I lose the fear. I have just so many inexplicable aches and tender areas that I can't shake the notion some evil seed is lurking somewhere. And it's so difficult to keep taking tamoxifen when it could be causing some of the problems. I am fed up turning up in distress at my GP's surgery. Add to all this the fact I can no longer sleep for more than 2 hours at a time-def. the Tamoxifen to blame for that one.
I do hope the worry fades with time.
So glad you've reached another milestone Maire and hope the mammo result is good. As for feeling fearful - well I think each and every one of us will live with the shadow of fear hovering in the background, probably for the rest of our lives. When I had my mammo and ultrasound and was given the all clear I felt wonderful. I didn't even check myself that night in the bath because of the result. However, just a week later each time I check I wonder if something has started to grow again. Most of the time my life is just as it was before and I don't think of BC (don't even like typing the C word) but every so often something reminds me and one of Cybele's Anxiety Demons pays me a visit. I think you have to have gone through what we have to understand how our minds work. I'm sure my husband and family are oblivious to my inner thoughts and are convinced I'm "cured". I'm afraid I'll never be that confident.
Love to all.
The end of treatment is very strange - I was emotionally all over the place for a couple of weeks after finishing chemo. You need time to come to terms with it..
Well, that's another milestone reached: had final herceptin yesterday and first post surgery mammogram last week. Don't feel the rush of joy I experienced on finishing chemo. Felt quite emotional and in all honesty a bit fearful!
Through it all I have received outstanding care, patience and support from the wonderful staff at the Western and Beatson in Glasgow.
Now for the next 4+ years of Tamoxifen!!!
Hi everyone. Had my first mammogram and ultrasound scan today since treatment finished and also had a consultation with my surgeon. Couldn't sleep last night for fear of what they would find but the angels were with me and both mammo and scan were clear and my lovely lady surgeon couldn't find any problems either. The feeling of relief is enormous and I don't have to go back for another year. However if I should be worried about anything I just telephone my surgeon's secretary for an appointment and don't have to bother with my own doctor. This time last year I was having my third chemo and couldn't even envisage this day.
I so hope that you are all doing well and like Lisalouw I want to thank everyone for their support during the whole ordeal. It was such a comfort to be able to talk to someone who knew exactly what I was going through. You ladies on this Forum are just wonderful.
Thinking of you Teej although you are nearly cooked by now aren't you. I'm sure they'll deal with the little blighters this time and thinking also of Suzie64 (hope I've got the correct lady - it's so annoying not being able to scroll back whilst posting on this new forum and my memory is not what it used to be). Keep strong ladies. Love and hugs to all.
So relieved for you. Think these scares are going to be part of our new selves for quite some time. But for now it's worth a celebration!
More good news - my lump was scar tissue, no cancer cells found.
Oh God, the relief... I knew it overwhelmingly likely that it wasn't a recurrence, but I was so, so scared.
Shellebelle, thrilled to hear you are also ok, and thanks to everyone for their support, especially Cressida, who talked me down the day I found the lump and was on the verge of losing it entirely xxx
And a new, very short, very happy blog post:
'Bullet dodged…': today's post on http://chemonights.blogspot.co.uk/
Good news Shellebelle-delighted for you. Hope the pain and inflamation are resolved soon and MRI shows nothing sinister, xxx
Happy New Year to everybody - may it be not only happy but healthy and fear free. Special thoughts to Shellebelle and Cybele, hoping all will be well, and to Teej on the October thread who has had a recurrence and is now nearly finished her second lot of chemo. There for the Grace of God ..........
Two years ago today I found the lump that changed everything.
So I won't do the "next year must be better" thing, cos I know it doesn't work that way, but I want to wish you all a Happy and Healthy New Year and thank you to all of you have supported me throughout 2013,
'Holding my breath, fingers crossed…':
today's post on http://chemonights.blogspot.co.uk/
Shellebelle - thank you for your wise words - I very much agree.
Maire, thanks for your comment on the blog xxx
Everyone - sorry I haven't posted for so long, it's been a weird few months and I kind of stopped wanting to communicate with the world..
Hope you're all doing well and coping better than I have been xxx
Cybele, I can fully empathise with you. I too have found another lump, although mine is in my remaining right breast. I have an appointment at the breast clinic next Thursday and am trying my best not to think too much about it. I came to the conclusion that worrying is a pointless waste of energy. It serves no useful purpose and does not change the outcome of a situation. Of course it's easier said than done, but I remind myself that I shouldn't miss out on enjoying the right here and now by wasting time worring about the past that has gone and cannot be changed nor the future that I cannot see because it hasn't been written yet!
A wise man once said.......you can carry s**t around with you if you wish, but the longer you carry it, the heavier the load feels and the more your arms will ache!
'Why Jennifer Saunders is wrong about breast cancer':
today's post on http://chemonights.blogspot.co.uk/
Fab poem Cressida.
Can't believe a year has passed. What a tough year it has been. Still having good days and bloody awful days.
Hope everyone has a great Christmas and that 2014 full of health and happiness.