This is particularly for you Debs. I too live with a partner (after spending most of my life living alone) but I echo your thoughts on dying alone.
A long time ago I read these words by Barbara Rosenblum: "If you think standing by yourself waiting for someone ot talk to you is lonely, if you think holidays alone are lonely, if you think that not having a relationship for a long time is lonely, if you think that the long frightening nights after a divorce are lonely....you cannot know the aloneness of one who faces death, looking it squarely in the eye."
From Cancer in Two Voices by Brabara Rosenblum and Sandra Butler. Quoted in the magnificent book by Christina Middlebrook Seeing the Crab, a Memoir of Dying before I do.
Meanwhile get shopping!
Of course you're welcome to join in! You're so right about the disease making us all feel alone and separate from even those closest to us. It's really hard to admit truly what you're feeling _ I guess I got so used to putting on a positive front I almost fell for it myself! You worry about not burdening your loved ones with your fears - they worry about not burdening or upsetting you - it's all so difficult. This site has helped me so much as I felt such a feeling of failure when my marriage suddenly ended and it felt like I couldn't help to try and put it back together as needed all my strength to cope with the chemo etc. This site has helped me to realise I'm not alone and although I don't want others to go through any pain at least we can help each other through it - moan together, laugh together and cry together!
Couldn't believe your bad taxol bag. That's awful - glad they were on the case before it was administered! How are today? Hope you're doing ok and looking forward to having the "winking eye" out next week. You do make me laugh with your descriptions!
hope you don't mind me joining in. As you all know I am very happily married and have been since we got the secondary diagnoses before that we had lived together. It was the shock that gave us the push to make it legal! Ian is quiet I am loud we are total opposites but it works and for that I am very grateful. Alone, well if there is one thing that this disease does it makes us all feel alone. We will all die alone and we all lie in bed with our minds whirling all over the place alone, even though I may be able to hear Ian breathing and feel the heat from his body trust me girls, I am at that moment just as alone as you are.
Love and cyber hugs to you all whenever you need them.
p.s my first husband was a useless piece of poo when I left him alone was very good.
Jayne, Jackie and Peggy,
I resonate with all of your comments. I'm gradually realising that in actual fact I was very lonely in my marriage and often felt more alone whilst married than I feel now if that makes any sense! I guess it was because me and my husband weren't really communicating properly and were dealing with my illness separately. At least now I know I'm alone and can reach out for support which I didn't feel able to when married as my husband was supposed to support me emotionally.
I know just what you mean Peggy about not haviing to deal with your partner's emotions as well as your own. But at the same time it is so hard not having someone to give you a hug when you need one.
I've just started going to Argentine Tango and a pottery class and started back going to social things organised for Welsh learners and speakers but some days it feels such an effort to just put one foot in front of the other! I can feel positive while I'm out doing things and even forget about my problems for a while but then can have days when I have no energy at all and just dissolve into tears. We can't feel positive all the time - it's just not human. I feel I'm being a lot truer to myself since my husband left and feel I can be more honest with the people who support meand just cry if I need to which I had to hold back from while married as my husband hated me crying.
I do crave on the bad days for someone just to come and make me a cuppa and cook me a meal and to just listen to my fears but I didn't have that when I was married so I'm no worse off!!
Hope your family meetup isn't as bad as you're expecting Jayne and I hope you feel better soon Peggy.
Have a good rest of weekend all.
Love Anne xx
Peggy, I know what you mean. Sometimes I'm just glad to be on my own with my emotions and sometimes I long for a hug. It's a mixed bag of emotions. Hope your family help cheer you up.
Jayne, it's so true, some peoples' company is worse than none at all!
been hesitating if I would post or not. I can imagine how hard it must be going through a relationship breaking down on top of everything else. When I was first diagnosed and during the first 2 chemos I missed having my partner with me (he can't get a visa to join us). After more than a year though I find myself relieved because I don't have to deal with his emotions as well as my own. I have a very supportive family, but a lot of the time I am glad to be by myself, because then I don't have to be "brave", optimistic, beat up. If hubby had been with me I wouldn't have this opportunity to cry, shout, rage at the unfairness of it all. That said, there are times when I desperately need somebody to hold me. Guess I'm just a bit depressed today, so I'll go and have a rant and rave before the family arrives!
love Peggy x
Hi Everyone on this thread - thought I would join in.
It must be so hard to go through cancer and a relationship breakdown - think you are having to be so strong to deal with the emotional side of BC and that
My situation is different - I have been on my own for many years- parner left after I had babvy ( who is now 24!!!!) In the early days I had a one or two attempts at a relationship but didn't work out - well, have been fulfilled as a single person - daughter , work , friends , interests and this was OK through oringinal diagnosis ( huge amouts of support etc) but I think its all changed now i have secondaries ( Lymph, bones and liver )
I was on the live chat tuesday and Cathy said its different being well and single to ill and single - and that really rang bells for me - I feel very lonely rather than alone - and sad - but it all spins around in my head! also I find many ( not all) family and friends are backing off and keeping distance - this could be a bit about me , too because 'm not sure I am " doing" people very well at the moment - anyway coping alone probably covers lots of situations and i am sure people inpartnerships also feel alone at times ....or are in unhappy ones ....sorry if I have entered a bit of a depressing note here!
Have " dreaded family re-union today" - a huge get together which I DONT want to go to - for reasons above - and the few who support me I can see whenever I like -but must cos i've worked out not going will cause me more aggro than going! hey ho .....hope you are all having .. or will have a good day....jaynex
Just wanted to say I remember the counselling being really really hard - I spent just about every session in tears and ended up with headache, but it was cleansing at the same time and it is worth it in the end so please stick with it if you can. I was finished with mine but then went back after my mets dx - but am not going back again as I feel so sorted about everything - am actually 'happy' and 'at peace' which feels really weird given my dx - BUT I can either spend however long I have left being miserable and worrying OR I can spend it doing fun things with my family and friends - which is what I intend to do and am doing.
You take care
Soz your ex is still being a pain.
Thinking of you
Glad you're enjoying a social whirl Jackie! You've had a tough time and deserve to enjoy yourself.
I'm glad your ex is being more reasonable now. Mine barely looks at me when he collects the dog to have him to stay and only speaks if he has to and is pretty monosyllabic then! I suspect he's now trying to be deliberately difficult and not take the dog for me to go away but am waiting for a reply to my most recent email trying to clarify things and make a regular arrangement for the dog. It's our joint responsibility and my ex was saying in the summer that he should be able to see him whenever he wants but has never asked to but had been having him once a month for my week off chemo. My ex doesn't ask anything about my health at all now.
I agree very much with what you say about wanting to grieve for what we've lost on one hand but not having the time to waste with sadness. I wish that I didn't have to go to court but he's dragging me there for the finances and yet it's been him all along not wanting to give disclosure! Friends say I should do this and that to get at him but I really don't want to use my precious time in this way. I want to move on and create a new, exciting life for myself for however long I've got left.
It's just not a great time in our lives to have to start again though is it - that's the difficulty but I'm enjoying my new Argentine tango class and started a pottery class this week which was great fun.
Having a restful day today as I'm exhausted with having such a busy week - started counselling this week too which was helpful but hard when those difficult feelings bubble up.
Take care all
Hi all, have been absent for the past few days due to my"never turn down an invitation" policy ! I expect that those of you who have been alone for longer have learnt to say no occasionally but I haven't. As a result I have eaten out 7 times in the last week and I feel like a beached whale! Anne you asked about my divorce. It's nearly through, I got a letter from the solicitor yesterday saying he is ready to apply for the Decree Absolute, so not long now. I will be distraught when it comes through.27 years of happy marriage destroyed by Friends Reunited.Neil was really horrible to me for a while after we split, even though he had caused the split. It seems like some men can't cope with guilt so they take it out on the person they have hurt. Things are much better now and he even got me some shopping when I was ill in bed before Christmas.I hope things get better for you in that way Anne.I think we are in a strange position. We want to grieve in the normal way for the lost relationship yet because of our illness we feel we haven't got time to waste. I had to throw myself into everything I did and blot out my feelings because it was a waste of precious time to do otherwise.Sometimes the feelings break through, it's inevitable I suppose.
just want to wish you all the best for tomorrow. Hope you get some hopeful news and at least can be more reassured and confident in the medical opinion.
Take care Peggy,
Love and a hug,
Just seen your other post and I'm so sorry to hear your news.I can't understand why they are making you wait six weeks when it sounds like you need treatment immediately?
I found I couldnt put 20 wishes down - hope you enjoy it when it comes.
I did think about taking dance classes like salsa or something - just for fun - but I'm not the most co-ordinated or rhythmic person. Think I will stick to my walking and hopefully get back into my hillwalking.
Good that you listened to your body and came home in the afternoon - think thats what we need to do. Chemo brain def affects me too - lol - thats my excuse!!
Millie is fabulous - think she is younger than 2 as seems to need a lot of playing etc - she also seems to need reassurance which is no surprise given that she was a stray. I decided to try her off the lead this afternoon and she was really good - didnt venture too far away and when she did she came back when I whistled and called. I am really lucky in that I have woods right out the back of my house, which then lead onto a unused road - then just have to put her on the lead to cross a main road and 5 mins up a path we are onto moors - so now I know I can let her off lead she will expend more energy running around. Cant wait to take her down the beach and see how she is with the water - whether she goes in or not.
My daughter going out with boyfriend tongiht so am home alone again - nothing new there!!
You have a nice weekend
And everyone else in our club
Have just ordered Twenty Wishes - sounds good.
I enjoyed my first Argentine Tango and there seemed an even number of people in couples and going on their own. The couple who take the class seem very good and get everyone to change partners all the time so I didn't feel on my own which was good and there didn't seem to be any sleazy-seeming blokes either. Hope to go next week.
I returned to a Welsh learning day school today - I used to go loads but not been for over a year and people were very friendly. I decided to come back after lunch as was really shattered and feeling a bit shaky. Glad I went though - felt a bit nervous around so many people - I feel like I've lost a bit of confidence and find it hard to concentrate with lots of chatter going on - chemo brain I guess!!
How are you all? Hope you're all having nice weekends. How's the dog sparkler?
Love to you all,
Anne - you will love that book - I cried!!
Good to hear that you enjoyed odyssey so much - am not outdoorsey either but willing to give anything a go now!! I may even try to change the date and bring it forward to July as weather might be nicer then. I had left it to september as I was spose to be having preventative mast on non cancer side and bilateral recon at same time in April - had a date and everything - then recurrence and mets reared their ugly heads literally weeks after I got date in - grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr. I have done the 'bargaining' thinking - as in denial, anger, grief etc - all the emotions we go through - and thought I would live my life boobless if it meant I could live a long life!! Sad when I think about it but no point in being sad, angry etc as it will just spoil what I have left!
Anyway, enjoy your book. Have you or any of the others read Twenty Wishes???? If anyone has not then they should - its fan-blinkin-tastic and was very inspiring to me.
Love to All
JennyG, I realised today that I've got the book you mentioned and have just started it today.
Sparkler, you mentioned you'd booked on an Odyssey course in September. I went on one Sep 07 and it was absolutely fab. I'm not an outdoorsy person either normally but thoroughly enjoyed it and really surprised myself. I'm still in touch with most of the ladies I met on it and we've seen each other since a few times. It was life-changing for me and gave me loads of confidence.
Jackie24 how are you coping with your divorce? Is it going or gone through yet and how are relations with your ex now? I just find it all so hard to believe. When he left our relationship itself seemed fine and yet now he's behaving as if he's fighting a sworn enemy and I keep thinking "it's just little old me and I'm already fighting for my life - I don't want another fight with anyone"
Anyway, I hope you all have a good weekend.
Thank you. I still cant believe I've got her. She has been soooooooooooooooooo good so far - hoping I will still be saying that tomorrow and she does not howl all night!!
I know she will give me a purpose for getting up and OUT each day. My daughter still spends half the week with her dad like she did when I was working - her routine and life should not change just because of my mets dx. So Millie will be company for me when Suzie is not here. Its good to hear you talking about your dog the way you do and know that he has given you that purpose - I truly believe she will help me in the same way.
Hi Sparkler and all,
That's great about your new dog. I'm sure she'll be a wonderful support in her own way. I feel a very special bond with my dog as we got him just 3 days after I finished my chemo after my primary diagnosis 6 nearly 6 years ago and he gave me a purpose to go forward with my life. I wouldn't be without him at all and would rather be tied down with him than without him. Not sure how I'd have got through the past 7 months without the dog to have to look after and get up for and it's helped me cope with knowing for sure I won't have children now. Not the same but dogs sure give unconditional love. Have fun with Millie and I hope she settles in quickly with you.
Love Anne x
Hi Anne and All
Soz your ex is being a pain about the dog. I went out and got a dog from the cat and dog home today. Have been thinking about it for a while (always wanted one but was not fair when I worked 12 hour shifts). She is about 2 years old and is a cross black lab/collie and we have named her Millie. So when my daughter is at her dads, and even on my most horrible days, I will have a reason to go out and about. There will be plenty volunteers who will take her after I die too - but hopefully that wont be for a good long while
Love to All
I'm on my 5th Xeloda at the moment and all is well.I was on 5000mg a day and felt nauseous occasionally and had sore feet.I had a two week break from it over Xmas to let my feet recover and it has now been reduced to 4000mg.
It has worked for me because all my tumours have reduced in size and breast tumour has disappeared altogether.Fingers crossed it stays that way.
I'm certainly very cronky on my feet at the moment with stiff joints so I may find it too tricky but certainly worth a try! How do you find xeloda? My oncologist mentioned it yesterday as a possible option should I need chemo again.
A bit down today as got all excited about planning holiday for Feb and weekend break in March and ex emailed to say he's not available totake the dog on any of the dates I suggested. I suspect he's trying to be deliberately difficult particularly as he said he's very sorry and he's shown no sign of being sorry since he left and he knows that the dog won't go to anyone else - I tried him overnight in kennels and he wouldn't let any of the staff anywhere near him and so didn't eat or do his business for 24 hours and they wouldn't charge me!!
I've now asked my husband to suggest any dates he might be able to have the dog in Feb and March but suspect he's trying to make trouble. I can't book anything until I know the dog is taken care of and I desperately want to go abroad Feb half-term as I teach during termtime and I have a scan in Feb and could be back on chemo for all I know by March.
I may take the dog and go and visit my mum and friends up North but the weather could be dodgy. I feel cross as the dog is our joint responsibility and he's letting him down too.
Glad you had a good long lunch sparkler! Sounded fun!!
Take care all,
I would love to learn the Argentine tango but my feet get too sore on the Xeloda at the moment.I had to stop going to salsa dancing because of it.
Let us know how it goes.
I have read that book - altho I cried I thought it was amazing!!!!!!!!!!!
Others..............welcome to the club
Anne - enjoy the argentine tango class - go girl!!!!!!!!!!!!!!!
Hugs to all
Just home from 'lunch' at 12md 🙂
Theres one thing....................alcohol aint gonna kill me!!!!!!!!!!!!!!!! - (soz for black humour)
Hi all and welcome to jennyg and jackie24,
Peggy, I know what you mean about just feeling better again when off chemo and the thought of feeling rubbish again is awful and yet I know that we want to do what we can to stay well. My neighbour was saying to me yesterday "well,if that's the way you can stay alive then you can put up with it" - easy to say when they've never had to go through chemo!!
I went to see my onc. today expecting to go back on the taxol/avastin again next week as he'd said I would before Christmas when I begged for a break over the festive period. I felt tearful in the car and whilst waiting at the hospital with the thought of feeling poorly again. I was surprised that he actually said that I might as well continue just on the Arimidex and monthly Zoladex as the last PET scan at the end of November was clear. I have my next PET scan in London in Feb and we'll just have to keep everything crossed that things remain clear for a while. He started telling me what other chemo options I'd have if it came back but I didn't really want to think about that yet as I was so shocked that'll I'll finally be off chemo after being on it since last March!! I feel very pleased but quite numb as I wasn't expecting it and it feels weird being here alone when I feel I should be celebrating! Been planning some possible breaks away though and definitely want to go away in Feb half-term as I teach during term-time - although only very few hours now.
I've found the divorce very hard to cope with Jackie, but everything seems to have happened at once and as I was on the chemo every week and had so much to deal with I haven't had much time to reflect which is probably a good thing!! I've been a total mess many times but so difficult to know how much is due to the emotional strain of the divorce, chemo, secondaries etc.!! Have been on anti-depressants since October which definitely help to keep me on the straight and narrow!!! I definitely think the steroids and chemo affected my brain and ability to think clearly as I feel so much better since being off them since November.
It's all been so quick - this time last year (08!)I was having a fantastic week in Florence with my husband and all seemed perfect - a month later I got diagnosed with the secondaries and life started falling apart!!
I do have a feeling in my bones that things will be better this year and really hope I can keep feeling optimistic but it's not easy!! We have to go to court next month to sort out the finances and I'm desperate to stay in my house so am just trying to keep strong and positive. I'm feeling stronger on my own but the betrayal of trust from someone I thought was with me forever is very hard to accept. I certainly don't like the person he seems to have become but I still don't believe that's the real him and he just seems to have cut himself off from feelings for me at all.
Anyway am feeling stronger today Ladies. anyone else on Arimidex? I was fine on it for quite a while but am really like an old lady in the mornings at the mo- I have to do a very odd-looking dance when I get out of bed unable to stand upright or unsupported until I get downstairs! My fingers have been very painful as if I've beeen holding a book open all night!!
Anyway enough of my moaning for today!
Peggy, I know what you mean about wanting to be positive despite knowing things aren't looking good. I'm convinced that positive thinking can help a great deal. It must be hard if your onc. doesn't give you much info. I always ask for a copy of my scans and reports now - I didn't in the past. My onc. is funny as he says one thing and then changes what he says - he definitely told me in Dec. he wanted me to start back on the regime and complete the whole year of it and yet he said today that's not necessarily what he said!! I think I'd remember!!
Am going to try an Argentine tango class tomorrow ladies! i'll let you know how it goes!
Love Anne x
I hope to start my 5th chemo. Had FEC, Taxotere, Xeloda and Navelbine.
I live in Zelzate, not far from Gent. Small town, very quiet.
Welcome to the club 😉
So sorry to hear you are about to start your 3rd chemo.
Where about in Belgium do you live?My maternal Grandmother was Flemish from Mechelin.She was a refugee during the war and was sent to North Wales where she met and married my Grandfather.I have cousins who live in Arteselaar.
Can I join the club?
I am 38 , single and have an 8 year old daughter. I too envy the ladies who have the support of a loving man - someone there to snuggle up to at night when you wake up in a panic etc.
I spend time worrying about what will happen to my beautifull daughter if.... something should happen to me. We dont have contact with 'dad' as he was a little blip in my life!! and he bailed out when I was pregnant.
Have been torturing myself by reading a chic-lit book called ' things I want my daughters to know' a real weepie...!!
Despite having no hunk in my bed at night, I have a great network of friends and this site is amazing for support. Its so nice to know we are not alone in this
Anne, how are you coping with the divorce ? My husband left about the same time as yours so you are presumably (like me) dealing with all the issues involved with the rejection by your loved one and also the issues involved with your secondary diagnosis. It is a heck of a lot to deal with, I know only too well.Do you have plenty of support from family and friends?
had the bloodtest yesterday and now have to wait until the 12th to find out if I can start the Taxol/Gemcatibine. I feel totally mixed up because I do want to keep on trying to stop this c....y disease so I have more time with my kids, but I have felt so well while not having chemo this last month that I don't want to go back to feeling tired, grumpy and ill. And my little boy keeps stroking my hair (what little there is of it) and saying "you won't cut it again, will you mama?" It breaks my heart because once they start the chemo it WILL go again (for the 3rd time) To think I started with waist long hair when I was diagnosed and now I'm worried about losing an inch or 2.
Welcome to everybody who joined this club!
Anne, I am Belgian, then I lived in UK (Birkenshaw near Bradford) for 5 years and from there I moved to Gambia, where I lived for 14 years. The healthcare here is very good. The hospital where I go for treatment is the best around, they get loads of "foreigners" coming there for treatment. Once I met Lou Reed, that American singer, there. His wife was getting treatment. But I am not happy with my oncologist. She is always so negative. I know I'm in a bad situation, but I do think that a positive outlook on things helps me a lot more than just giving up. My Dad says she has to tell me the worst scenario, well maybe, but then she should also give me the best scenario which she doesn't. I end up coming away feeling depressed and it takes me ages to bounce back if I've seen her. And she is from the old school which means she doesn't give me any info at all. I don't know what my tumour markers are, have never seen a scan etc. As for symptoms...I don't have any. I know that won't last, but so far I've only been ill, tired etc when on chemo.
love Peggy x
Beach walk did not materialise - started raining!! I am in north east scotland (the granite city)
Let me know how you got on with onc
Hi Mel and Alli,
Welcome to the club! I knew there must be others out there coping alone and it helps just to know you're not alone and that others can understand how you feel at times.
Alli I like your attitude and calmness. I am getting to like being on my own in that I can make my own decisions without worrying about protecting someone else all the time but it can be overwhelming at times too.
Mel, you sure have had a tough time and really hope you can find a regime that works for you. Do you have symptoms from the actual disease? What chemo are going on to?
Am seeing my oncologist tomorrow to find out what he wants to do with my regime and how long he wants me to be on it. Am hoping I'll be off it March time - I will have been on the chemo for a year then - it sure is a long time to feel rubbish to be polite!!
Nice to see the sun shining today despite the cold!!
Hope you had a nice walk on the beach Sparkler. Whereabouts in the country are you?
Hope you're ok Peggy.
Take care all,
Just wanted to say welcome to our little club.
Soz to hear the chemo you have had so far have not worked for you. Will keep my fingers crossed for the next one
I,too was diagnosed Jan 08 and I have mets in lymphs(underarm+neck),liver,lung and spine.I've not had any surgery though as stage 4 from the start.
I'm on Herceptin/Xeloda and Zometa.I was on Taxotere,which didn't work for me.The Xeloda is great and has shrunk all of my tumours.
What chemos are you/have been on?
I am on my own as well was devoiced before BC showed its ugly head.I do have a very good friend that tells me as well that I should except all help that people offer and am to independent.The thing is that I am to used to doing thing for my self and find it very difficult to except all the help offered. Yes admittedly I do struggle with it all some times.
Was Diagnosed with BC in jan 08,had lump out then had 2 others taken out. was having rads then chemo and thought all was going well until a scan and biopsy reviled that I had secondarys in the liver. so back on chemo that didn't work so they then tried another combination.Was then having trouble with my lungs and yes you have guessed it I have i in the lungs as well!!!! Anyway am due to start different chemo on the 15th Jan so am hoping that this will work as the prognosis is not very good at the moment
Welcome to the club
I am sure we spoke when I was first dx?
So sorry to read all your stories. Maroke - hope they give you more chemo. I am dreading the time when the chemos stop working - that will be a HUGE thing to accept, but I think we all know that time will come sometime - and it may become a case of weighing up quality over quantity.
Anne - I have always been completely honest with my daughter - she knows exactly whats going on. At one point she said to me that I could still be alive in 10 years time - it was so difficult, but I said I doubted that very much, due to the aggressiveness of the disease so far. I may be wrong but I doubt it. I have always said I would be honest with her and she is happy with that.
Think am gonna go for lovely walk along beachfront - wrapped up all cosy tho!!
I'm on my own too.My partner(of 14 years)left me a year before I was diagnosed on Jan 2nd last year.I feel I've managed much better on my own because I don't think I could have coped with breast cancer and all of his s--t as well!
I've got a great family and a fantastic group of friends who support and help me.
My mind is free from stress,I feel calm and I try to enjoy every day I have left.
Hi again Peggy,
Sorry to hear your story. I hope the next regime will make some progress for you. It's horrible isn't it waiting for things to happen or not happen. I'm desperate for a proper chemo break which I'm hoping to have in March but at the same time I know it'll be a tricky time not knowing how long before the disease rears its head again without the chemo doing its bit. So difficult to get the balance between doing all you can to beat the disease but at the same time wanting to at least to try and have some decent quality of life as well.
Your children sound lovely. The creative things sound lovelytoo. I went to a cardmaking club today and am very proud of my card I made and enjoyed doing it and find it relaxing.
How long have you been in Belgium and how is the medical care there. Do you have any symptoms form the disease? I haven't yet as was picked up by scan but lots of side effects from chemo,arimidex etc. Have piled on the weight recently with the extra steroids I was having to help with chemo side effects and have been eating loads over Christmas. Got to have some comfort!!
Trying to be more healthy now we're into the New Year!!
Love Anne xx
I'm not on any treatment yet, went for a bloodtest today to see if my body can handle yet another chemo. If it's ok I should be starting Taxol/Gemcatibine sometime next week.
I noticed a lump when I was breastfeeding my son and went to see a gyneacologist in Gambia, he delivered my son 16 motnhs earlier. He said it was an infected milkduct and gave me a course of antibiotics. They didn't work so he gave me a stronger course. When these didn't work I decided I would go back to Belgium for a check up. The gyneacologist here took one look and said...oh dear that doesn't look good. Anyway, the plan was for me to start chemo right away and after that have a mastectomy, but when further tests showed I had secondaries in my liver I had the mastectomy first and started with chemo a month later. This was June 2007. The first chemo was FEC and I had very good results with that. The tunours all shrank considerably. I was then started on hormone tablets called Nolvadex. But a CT scan 3 months later showed that things were progressing again. Since then I have had Taxotere, Xeloda and Navelbine, all with no results. I have been on a chemo break since beginning of December, but really hope they will start me on the tax/gem soon. At least I have the feeling I'm trying something then rather than just wait for things to happen.
This week I'll be doing lots of fun projects with the kids. They are nearly 5 and 3 now, just the age to love "making" things with mama. Maroke loves making her own beads with Fimo clay so we'll be doing that. And Bakary loves baking cookies, so will be doing that with him. We made loads of decorations for Xmas. It's a shame it's over really. But Bakary wants to make a Valentine card for his teacher, so that's another project and think we'll make a start on getting their carnival costumes, which is in February. But I think I'll be taking it easy most of the time as the Xmas/New Year period was very busy.
Welcome to the club. Sorry to hear you're on your own too and so awful about the visa situation. What treatment are you on at the moment?
Thanks sparkler for your lovely email. You've been through the mill too in a short space of time. It's so hard to get your head round it all at the best of times and even harder on your own. It must be hard for you to know how much to tell your daughter too. I lost my father to prostate cancer when I was 15 and know what it's like from that angle too. My parents protected me from a lot and life was pretty normal for me up until his death but I found that very hard to deal with as it was a shock to me as I felt I'd been protected from how ill he was. It's so hard to know the right way to be though - my parents only did what they thought best at the time.
My story is that I was diagnosed with primary BC in Dec 2002 at the age of 32 after finding a lump. I was diagnosed the day we moved from London to Wales - I'd given up a lucrative self-employed business to move nearer my husband's family in South Wales. I'd also very hoped we'd finally be able to start a family as we were going to improve our quality of life and could afford a better life in Wales. However, breast cancer put a stop to that.
I found myself in a new place knowing practically no-one except my mother-in-law and facing surgery. I had a lumpectomy and full node clearance - one node was cancerous. I then had to go back in and have a full mastectomy Feb 03 as they'd found extensive DCIS in addition to the 1.4cm tumour. I had nasty infections with both operations and had to have blood transfusions following the mastectomy. I then did 6 FEC chemo March-July 03 then was on tamoxifen from Sep 03-05.
I started piano teaching again and built up a successful practice from scratch. I was allowed to come off tamoxifen after 2 years as we were keen to try for a baby as I was in my 30s and anxious not to miss out. I'll never know if that was the wrong decision to make but don't believe in having regrets. We started trying for a baby in 06 with no luck.
I then found a tiny lump on my scar in March 2007. I then had a month of rads in London June 2007 - as by this time we had BUPA through my husband's company scheme and there was a delay in Wales so we went, at our expense to live in London at a hotel for a month and had a really lovely time together going to lots of concerts,shows etc and catching up with old friends in London. I then went back to work in Sep 07 and things seemed fine. We had a fantastic week's holiday in Italy in Jan 08 and then I had a routine check-up in Feb and asked to be referred to a fertility clinic. My onc. agreed and suggested I have a routine CT scan (not had one before)and unfortunately this and a further PET scan diagnosed mets in my lungs and lymphatic system.
I started taxol and avastin last March and have had 22 weeks of this so far and will restart next week and hopefully finish this regime in March. I've had 3 further PET scans since last Feb and each one has been better and is currently clear which is great.
I have actually found my marriage break-up harder to cope with than the thought of my premature death. My husband coudln't cope witht he thought of losing me and yet now he's left he's now behaving as if there's nothing wrong with me and says I should get a full-time job!! I'm only doing 6 hours a week teaching in term-time and have been finding that hard enough to cope with on weekly chemo and luckily haven't had a cold yet this winter which I worry about catching from the children.
Anyway - sorry about my waffling!!!
What are you up to this week Peggy and Sparkler?
Take care and keep in touch xx
Welcome to the club - your more than welcome 🙂
Nightmare about your husband - you would think under exceptional circumstances etc.................................... I dont bloody know!
Maybe am not at the stage of asking for help - but if its offered - I can now say yes 😉
Hi Anne and Sparkler,
I am on ym own too. Well I have 2 small kids, but my hubby is Gambian and although we've applied many times for a visa for him they keep refusing it. So I haven't seen him since June 2007. It meant I had to start over again all by myself, because my home is in Gambia. I do have a wonderful family to support me, but I find that I am protecting them from the bad news. They just get so upset.
Glad to see you can ask for help now Sparkler 😉 I have to admit that was one thing which was very hard for me to do at one time. My best friend calls me little miss independant! I am 43 btw. Anyway...can I join this club too?
We seem soooooooooooo alike - I too am not good at asking for help - or wastn't but am much better now - if people want to help and do something then I let them - but I dont mean run after me - that soooooooooooooo wont happen - lol
I am triple neg so no hormone drugs or anything else for me - its chemo or die!! (I have developed a very black sense of humour in the past month!). I was thrust into menopause for a year after initial chemo - but about 6 weeks ago I started bleeding - HEAVILY - it lasted over 2 weeks and I had to get a drug to stop me bleeding!! Saying that, am startting to get flushes again already, but have started bleeding a little bit again.
I was originally dx July 07 - had chemo, maste with partial node clearance (all clear), then rads which finished March 08. IN sept 08 I found lump under arm - had full node clearance and 2 nodes with cancer. They said no further treatment. Then Nov I noticed lump just beside armpit on upper chest wall - recurrence of cancer then ct scan showed mets in lung and I have questionable other nodes and nodules elsewhere - altho they have not said they are or are not cancer. So thats my story - all very quick and aggressive - scary stuff. I am hoping against hope that this chemo shrinks things down or makes them disappear for a while - I feel the tumour on my chest and do wander if it has shrunk slightly - but dont want to get hopes up.
I too am doing loads of different things. I have booked to go on an odyssey break in september - again will be a bunch of strangers and outdoor living - so not me but so looking forward to trying different things. Good on you for greece and your new year break.
Did you say how old you are?
Do you have kids?
As for plans - my funeral is next on my list. Gonna have that organised by end of this month!! It does feel good to be in control and at least I know it will be what I want. My daughter does not like it when I talk about it tho - not that shes in denial but she would rather not talk about that yet which is fine.
Glad you are managing to get on with your new life, it couldnt have been easy for you.
Onwards and upwards
Women power - lol
Thankyou for your lovely post Sparkler! Welcome to the club!!
Where are your mets? It is hard to get the balance right with all the emotions and feelings. My mets in lungs and lymph around upper clavicle area were diagnosed last Feb but after 8 weeks of weekly taxol and avastin the 4 affected lymph nodes had completely gone. By late November with my 3rd post-diagnosis scan everything including the lungs were clear so I really hope you can see progress too. I still am aware that things can change at any time. I was always so positive and strong when my husband was still here but feel so much more vulnerable on my own. I don't have any family close by but neighbours and friends are very supportive but I have to ask for help which doesn't come easily!
It came as a total shock my husband leaving. He'd seemed like a rock until then - it was the 3rd time in 6 years I'd had breast cancer and he just seemed unable to cope with the terminal diagnosis even though I'd decided I wasn't going anywhere for a long time! He seemed to be having a breakdown and it was really sad but since he's left he's made life so difficult for me petitioning a divorce on my unreasonable behaviour. Very unreasonable of me to get cancer!! I was so hurt as we seemed to be so much in love and physically everything was great and we'd had a wonderful holiday in Italy in January of last year and yet by November we were divorced!! It just seemed impossible.
However, lots of positives have come from it and on the whole I think I'm better off as he just was so negative about my diagnosis and just couldn't live for the moment which made me feel guilty if I was feeling positive. He was over-protective and made me feel like I was more fragile than I was and feel guilty if I looked the slightest bit tired. I feel bad as I'm sure he was and probably still is suffering from depression and not getting the right help but I have to focus on me now and keeping positive.
It's made me do things on my own I never would have done before and given me more confidence in a lot of ways. I managed to get myself to a remote Greek Island in August for 2 weeks on a holistic holiday which was the best thing I could have done at the time - lots of tears but lots of laughter and fun too.
Just come back from a New Year break from the same organisation in the Isle of Wight - spending New Year with 21 complete strangers but making incredible new friends and having the most fun I've had for a long time. I only got back on Friday and I think that's why I'm down today as when I'm with people and away from the situation I can really relax and "forget" for a while but it feels back to reality now!! Onwards and upwards though and it means so much just not to feel alone so hope others join "our" club too.
I too feel more in control if I plan things - I sorted out my will and have been through all my papers and stuff and sorted lots out which I'd been putting off for months. I've even semi-p[lanned my funeral too which doesn't feel sad but feels like I'm semi in control!
Good luck with your next treatment. Are you on any hormone drugs? Am on Arimidex and have monthly Zoladex injections. Have been thrust into the menopause which probably also explains the tears!!
Thanks for cheering me up!
Keep in touch
I will be in your club!!!!!!!!!!!
Bit different from you in that I have been away from hubby for 10 years. But I am on my own (I have a 15 year old daughter 1/2 the week) and was dx with my mets just in Decemember. I too enjoyed myself better than I thought I would xmas and new year - spent time with my daughter and went to my best friends parents for both - BUT, when I got home on 1st, and went to bed at night - I had a major wobbly - I just sobbed and sobbed very loudly - just not knowing if 2009 will be my last.
I had my first Taxotere on 28th to try to hold things at bay. I swing from thinking - yes this will work to thinking I aint gonna have long!!!!!!! We have no way of knowing do we? They will be scanning me after 3rd chemo which will be end March - so I am petrified of that scan.
On the whole I feel I am coping really quite well. I have made loads of plans, sorted my finances and will and am looking into all the options re work etc as to whether its possible to retire on ill health ground (altho am only 40).
Were you shocked when your hubby left or expecting it?? Not that it makes it easier but if you are happier on your own? Dont answer that if you dont want to!! I am sorry you have the stress of court case etc and do hope you can stay in the home if thats what you want.
Do you have support of family and friends. I have my dad but would not burden him with worries etc but I do have a lot of good friends (2 very very close ones). I hope you have this too as it does help me.
I have also been busy doing memory boxes, journals etc for my daughter and my friends - and in an odd way have had fun doing them (would rather not be doing it tho) - but it has made me smile recollecting fun times.
Sorry to waffle
Hopefully we will have others to join us.
I do envy women in loving relationships who have that support - but not in a bad way.
Love to You
Hi Anne - Happy New Year. Do you really have to have more chemo? I can't imagine what that is doing to you. Is there no way your onc. can really reduce the dose or persuade your insurance company to change their mind. It must be really tough to be on your own perhaps once the divorce and finacial stuff is over you'll feel better?
Just wondering who else is in my position and coping alone with secondaries. My husband left suddenly last May just under 3 months since I was diagnosed with secondaries in my lungs and lymphatic system.
Have felt I have coped well on the whole but it does still completely overwhelm me at times especially now at the start of a new year. There's been so much to cope with with him pushing me straight into divorce and now the court case to settle the finances is looming in a month and I have to start chemo again next week after a break over Christmas. Had 22 lots of taxol/avastin last year and I'm just feeling overwhelmed by it all again after having a much nicer Christmas period than I'd anticipated. Just wondered if there's anyone else in a similar position who would like to be in this thread and keep each other going.
I had such a lovely New Year break with a group of strangers in the Isle of Wight and was able to relax and enjoy myself. Now I'm back home and alone again it feels a scary place to be. People think I'm so strong but I feel like a complete wimp at times especially as I don't know yet whether I'll be able to stay in my home. I just feel like passing on all my responsibilities I feel onto someone else and just hiding under the duvet sometimes!!
Take care all and best wishes for 2009.