Hi all,
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.
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?
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.
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!!
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
S
xxxx
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?
Hi Peggy,
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.
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.
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!!
Hi Girls,
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.
Alli x
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!!
Hi
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
Hi Mel,
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?
Alli x
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?
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.
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?
love Jackiexxx
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
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?