A light has gone out in the breast cancer world. Yet another amazing inspiring woman has died from this awful disease. She has given such support and wisdom to fellow sufferers despite being on practically consecutive chemos for over 3 years. She was only 46 and leaves a husband and 3 young children who have lived through her suffering these past 4 years. I "knew" her mainly as a cyber friend on the Breast cancer care site but was lucky enough to meet her just once in February. Although we all knew how poorly she was she had pulled through so many times before right back from the brink I think we all thought she was invincible. She was still offering support to people on the site just days before her death whilst in her hospice. A truly giving and sincere woman who kept the most amazingly honest and upfront blog throughout her illness. She had published her dying wishes way back last summer when she thought the end was near and yet made it through last Christmas and defied the medics repeatedly even managing to take her children to EuroDisney in January. She is sadly the second lady on the site to have died in the past week and the sadness and shock of the forum is palpable.
Last year she recorded a podcast for Breastcancer care talking about how it really is to live day to day with secondary breast cancer. She doesn't pull any punches about the lack of support we receive from the hospital and gps. The BCC site is a godsend to so many of us. Sharing information,side effects,fears,hopes with people actually going through it is invaluable and you often pick up important medical information not told by your medical team! Sadly we all know that there is no happy ending for someone living with secondary breast cancer - people are living longer with it but I do get the impression that the end seems to be swifter for the younger ones as the cancer tends to grow faster but I hope I can prove this wrong. I've been meeting a few women with secondaries now since Feb but up till then which was a year since my secondary diagnosis I'd not met any. I always tend to be the youngest.
I can only begin to imagine how hard it is for the families left behind leaving children without mothers whilst I constantly grieve that I will never have children,grandchildren etc.
I have been philosophising recently about whether I really matter in the world with no partner or children and not being anything really significant but Kate, the lady who died proved that you can somehow be extraordinary by being ordinary. She really did make a difference to so many women and I know in turn that she felt the site and blog was her lifeline as well. It's so strange that in facing such a disease you get to know so much about people - even their bodily functions and inner thoughts and fears that they may not even discuss with loved ones and yet I didn't even know her surname until yesterday!
I hope the you are finally at peace Kate. You are sorely missed and will be remembered.
My challenges for Tenovus Cancer Charity!
Tuesday 28 April 2009
Sunday 12 April 2009
Life after divorce!
Have been wondering for a while how to proceed with my blog now things have calmed down in my world after such a horrendously difficult past year.
I finally had some good news in February with the settlement at long last of finances with my now ex-husband and I am now the proud sole owner of the former marital home as it became referred to. I will never know what prompted my ex to do a massive u-turn just prior to the first hearing but am so relieved he did even though he struck me a huge body blow by trying to ask for full custody of our beloved dog who has remained with me in return for a good deal. Luckily in the eyes of the law the dog is not worth anything but to me he's priceless and it would have torn me apart to part with him as I'm sure my ex knows. I have been keen throughout for my ex to see the dog regularly and had arranged for him to have him once a month since he left but once I refused to part with the dog and never see him again as my ex wished, my ex then said he wanted nothing to do with the dog. This is very sad but his decision. I have always been mindful that it is likely the dog will outlive me, although I dearly hope this will not happen, and would have wanted the dog to go to my ex and his mother but now have to find a new home for him eventually. My latest challenge is to get the dog to settle with people he doesn't know as he's rather nervous and didn't settle at all when I tried him overnight in kennels last year. I've had a dog listener lady in and have had my dog castrated in the hope of calming him down and he does seem a lot better with people so I'm hoping I will eventually be able to leave him to able to go away.
The second bit of good news in February came with my latest scan since coming off chemo last November. It was scary waiting for the results as although the chemo had really worked while I was on it but this was the crucial scan 3 months with no chemo and it was showing that things are still stable and nothing active at the moment which is fantastic news. I know it is likely that the cancer will progress again at some point but trying to make the most of remaining off chemo for the time-being.
I expected to be euphoric and relieved after months of worry,fear and feeling awful but it's not quite so simple! I think I had a bit of delayed shock and was feeling very exhausted,tearful and depressed for a few weeks in March. I've been feeling gradually brighter and more energetic over the last fortnight so hopefully I'm on the way up again.
My life has just completely transformed over the last 12 months. This time last year I thought I was still happily married and was battling through chemo. Now I hardly recognise myself - literally - I'm over 2 stone heavier for a start - after years of being underweight and hardly putting on any it's all been piling on since last November - result of steroids and being thrust straight into the menopause courtesy of my hormone treatments. I guess when the divorce stufff was suddenly and dramatically settled in my favour and the news I'd remain off chemo I felt quite set adrift and unsure what my life was after so many months of battling for my life and stability!! My solicitor talked of a "fairytale ending" - well not from where I'm standing - I may have been surprised to get the house in its entirity and a small lump-sum to reduce the mortgage but I'm still unexpectedly single and have been totally let-down and betrayed and treated incredibly cruelly by people I completely loved and trusted and am still living with an illness which is likely to eventually kill me so forgive me if I don't agree to it being a fairytale!!!
I am working on creating a new life for myself. I've started going to a pottery class which I enjoy and have just joined a social, activity group which is exciting and I hope will improve my social life and help me to regain self-confidence.
I've joined a local support group too and have recently befriended severaly women also living with secondary breast cancer. Eight of us "cyber-friends" met up in Bristol in Feb and hope to do so again in May. They are amazing women and very positive despite poor health.
One of them phoned me last week and encouraged me to re-start my blog in the hope I might be able to help someone else going through advanced cancer. I never thought I'd be in this position of coping alone but I am and somehow I'm still here and feeling more positive by the day.
It's true that some days I feel like I'm 90! Every morning I wake up with intensely painful fingers and have to do a strange dance to plant my feet firmly on the floor and am bent double until I get downstairs and get moving! I'm stiff and awkward when I get up from a sitting or lying down and I wince when I have to put pressure on my right knee. This is due to the complete lack of oestrogen in my body due to the medication and as oestrogen feeds my cancer it is to deprive it of that and so hoping we can keep the cancer at bay for as long as possible so these side effects are a small price to pay!!
Am having a new kitchen seeing as going round the world is on hold! I'm taking the dog for a few days to the beautiful Pembrokeshire coast on Wednesday and a friend will be staying nearby and joining us whilst the kitchen is being fitted by my good builder friend Dave who has been a tower of strength. I've stayed in the same cottage a few times with my ex so it will be hard but I'm hoping to see it all with new eyes. It's very hard to come to terms with everything that's happened. I really don't know why I've been treated like I have - there was no call for it at all but I guess it can only make me stronger and more determined. I think fear can change people but it really felt like I was being kicked when I was at my very lowest and after my years of love a devotion it was unecessary and totally bewildering.
I don't want to dwell on the past and must try and forge ahead and just try and make the most of my good health at the moment.
I spent today,Easter Day, at a health spa in Cardiff with 3 strangers from the new social group I've joined but it was very relaxing and very nice. I managed to persuade the therapist at the spa that is was ok to give me the Indian Head Massage I'd booked despite having cancer. It's really hard explaining it to people - she said - "so you're on the way to recovery then?" - no apparently I'll never be "better" but hard to explain that I'm certainly not dying at the moment (as far as I know!). Had the same problem last week when I joined a ladies only gym with short workouts which seems just right for me and when I explained that I'd been having treatment for cancer the girl said "but you've had the all-clear now though" - no never will - also hard when you're tied into things for a few months - so hard for me to plan and could be back on chemo at any time but somehow life does go on and take shape.
Anyway - will try and post more now that I'm feeling a bit more positive! Onwards and upwards I hope!!
I finally had some good news in February with the settlement at long last of finances with my now ex-husband and I am now the proud sole owner of the former marital home as it became referred to. I will never know what prompted my ex to do a massive u-turn just prior to the first hearing but am so relieved he did even though he struck me a huge body blow by trying to ask for full custody of our beloved dog who has remained with me in return for a good deal. Luckily in the eyes of the law the dog is not worth anything but to me he's priceless and it would have torn me apart to part with him as I'm sure my ex knows. I have been keen throughout for my ex to see the dog regularly and had arranged for him to have him once a month since he left but once I refused to part with the dog and never see him again as my ex wished, my ex then said he wanted nothing to do with the dog. This is very sad but his decision. I have always been mindful that it is likely the dog will outlive me, although I dearly hope this will not happen, and would have wanted the dog to go to my ex and his mother but now have to find a new home for him eventually. My latest challenge is to get the dog to settle with people he doesn't know as he's rather nervous and didn't settle at all when I tried him overnight in kennels last year. I've had a dog listener lady in and have had my dog castrated in the hope of calming him down and he does seem a lot better with people so I'm hoping I will eventually be able to leave him to able to go away.
The second bit of good news in February came with my latest scan since coming off chemo last November. It was scary waiting for the results as although the chemo had really worked while I was on it but this was the crucial scan 3 months with no chemo and it was showing that things are still stable and nothing active at the moment which is fantastic news. I know it is likely that the cancer will progress again at some point but trying to make the most of remaining off chemo for the time-being.
I expected to be euphoric and relieved after months of worry,fear and feeling awful but it's not quite so simple! I think I had a bit of delayed shock and was feeling very exhausted,tearful and depressed for a few weeks in March. I've been feeling gradually brighter and more energetic over the last fortnight so hopefully I'm on the way up again.
My life has just completely transformed over the last 12 months. This time last year I thought I was still happily married and was battling through chemo. Now I hardly recognise myself - literally - I'm over 2 stone heavier for a start - after years of being underweight and hardly putting on any it's all been piling on since last November - result of steroids and being thrust straight into the menopause courtesy of my hormone treatments. I guess when the divorce stufff was suddenly and dramatically settled in my favour and the news I'd remain off chemo I felt quite set adrift and unsure what my life was after so many months of battling for my life and stability!! My solicitor talked of a "fairytale ending" - well not from where I'm standing - I may have been surprised to get the house in its entirity and a small lump-sum to reduce the mortgage but I'm still unexpectedly single and have been totally let-down and betrayed and treated incredibly cruelly by people I completely loved and trusted and am still living with an illness which is likely to eventually kill me so forgive me if I don't agree to it being a fairytale!!!
I am working on creating a new life for myself. I've started going to a pottery class which I enjoy and have just joined a social, activity group which is exciting and I hope will improve my social life and help me to regain self-confidence.
I've joined a local support group too and have recently befriended severaly women also living with secondary breast cancer. Eight of us "cyber-friends" met up in Bristol in Feb and hope to do so again in May. They are amazing women and very positive despite poor health.
One of them phoned me last week and encouraged me to re-start my blog in the hope I might be able to help someone else going through advanced cancer. I never thought I'd be in this position of coping alone but I am and somehow I'm still here and feeling more positive by the day.
It's true that some days I feel like I'm 90! Every morning I wake up with intensely painful fingers and have to do a strange dance to plant my feet firmly on the floor and am bent double until I get downstairs and get moving! I'm stiff and awkward when I get up from a sitting or lying down and I wince when I have to put pressure on my right knee. This is due to the complete lack of oestrogen in my body due to the medication and as oestrogen feeds my cancer it is to deprive it of that and so hoping we can keep the cancer at bay for as long as possible so these side effects are a small price to pay!!
Am having a new kitchen seeing as going round the world is on hold! I'm taking the dog for a few days to the beautiful Pembrokeshire coast on Wednesday and a friend will be staying nearby and joining us whilst the kitchen is being fitted by my good builder friend Dave who has been a tower of strength. I've stayed in the same cottage a few times with my ex so it will be hard but I'm hoping to see it all with new eyes. It's very hard to come to terms with everything that's happened. I really don't know why I've been treated like I have - there was no call for it at all but I guess it can only make me stronger and more determined. I think fear can change people but it really felt like I was being kicked when I was at my very lowest and after my years of love a devotion it was unecessary and totally bewildering.
I don't want to dwell on the past and must try and forge ahead and just try and make the most of my good health at the moment.
I spent today,Easter Day, at a health spa in Cardiff with 3 strangers from the new social group I've joined but it was very relaxing and very nice. I managed to persuade the therapist at the spa that is was ok to give me the Indian Head Massage I'd booked despite having cancer. It's really hard explaining it to people - she said - "so you're on the way to recovery then?" - no apparently I'll never be "better" but hard to explain that I'm certainly not dying at the moment (as far as I know!). Had the same problem last week when I joined a ladies only gym with short workouts which seems just right for me and when I explained that I'd been having treatment for cancer the girl said "but you've had the all-clear now though" - no never will - also hard when you're tied into things for a few months - so hard for me to plan and could be back on chemo at any time but somehow life does go on and take shape.
Anyway - will try and post more now that I'm feeling a bit more positive! Onwards and upwards I hope!!
Saturday 17 January 2009
A New year - a new me!
Well, I guess 2009 cannot be worse than my "annus horribilis" of 2008! I'm so thankful to be still here - in one piece - just about!
Being diagnosed in Feb 08 with breast cancer for the 3rd time, this time stage 4 terminal advanced breast cancer in the lungs and lymphatic system, facing the finality of not being able to have children due to the prognosis and treatment is difficult enough at the age of 38 but then my beloved husband with whom I'd been in a relationship with for 11 years suddenly spiralling out of control and leaving me within 3 months of the diagnosis has been much harder to come to terms with. Finding myself by the end of 2007 divorced and having undergone 22 lots of gruelling chemotherapy and biological agent treatment was just unbelievable. I've had to undergo many months of chemotherapy,scans,etc since my husband left that I can hardly believe I'm now into a New Year.
It's going to be a new start for me now and I want to look ahead with positivity. The financial affairs are due to be sorted out in court soon so I won't go into any detail and still somehow feel a loyalty to my ex-husband despite what he's put me through and still putting me through but while I still risk having to move from my home and lack of stability is hanging over my head it is difficult to be able to fully move on and plan exciting things to do.
I have come to know myself much more since all this happened and to come to like and respect myself for my inner strength. I have also been able to be much truer to myself and cry and let things out far more than I ever felt able to when married.
I have had tremendous support from friends,family and neighbours and feel very much part of the community here which is nice as we only arrived as "incomers" 6 years ago and I have no family here.
I have met many amazing new people, have travelled and done lots of nice things on the few days I've felt well enough which is not easy on weekly chemo with one week off in every 4.
I am trying new hobbies and trying to have as many new experiences as possible as I am very mindful of how precious my time is now.
The hardest thing of all to cope over the last year has not been the cancer and my impending death - although I hope not for a good while yet - but the betrayal of people who meant the world to me and whom I trusted and loved unconditionally. I can understand fear - I really can and admitting to fear takes a lot but that is one thing but to actually try to deliberately make things as difficult as you possibly can for someone already having to bear so much is very difficult to accept.
I guess people have their own reasons and we are all responsible for ourselves and as much as it's all been really heart-breaking for me I do not have the time or want to waste my precious time with regret, guilt or hurt. Not easy though just to move on and not a great time for me to have to construct a new life for myself at a time in my life when I desperately need some stability as my life feels in free-fall.
I do not have a religious faith but I believe in goodness and honesty despite what has been shown towards me. I believe in offering the best of myself and just hoping I get the same in return. I believe that if you radiate positivity and warmth outwards you'll get it back and if not you move on and offer it somewhere where it's welcomed. I'd rather wear my heart on my sleeve and be true to myself and give my all while on this earth - where-else am I going to do this - maybe there is another world somewhere but I'm not going to know that for sure until the end of this life so I'd rather go for it in the present one!
Enough for now - but this bionic woman is back and still bionic - in spirit if not in mind and body!!
Being diagnosed in Feb 08 with breast cancer for the 3rd time, this time stage 4 terminal advanced breast cancer in the lungs and lymphatic system, facing the finality of not being able to have children due to the prognosis and treatment is difficult enough at the age of 38 but then my beloved husband with whom I'd been in a relationship with for 11 years suddenly spiralling out of control and leaving me within 3 months of the diagnosis has been much harder to come to terms with. Finding myself by the end of 2007 divorced and having undergone 22 lots of gruelling chemotherapy and biological agent treatment was just unbelievable. I've had to undergo many months of chemotherapy,scans,etc since my husband left that I can hardly believe I'm now into a New Year.
It's going to be a new start for me now and I want to look ahead with positivity. The financial affairs are due to be sorted out in court soon so I won't go into any detail and still somehow feel a loyalty to my ex-husband despite what he's put me through and still putting me through but while I still risk having to move from my home and lack of stability is hanging over my head it is difficult to be able to fully move on and plan exciting things to do.
I have come to know myself much more since all this happened and to come to like and respect myself for my inner strength. I have also been able to be much truer to myself and cry and let things out far more than I ever felt able to when married.
I have had tremendous support from friends,family and neighbours and feel very much part of the community here which is nice as we only arrived as "incomers" 6 years ago and I have no family here.
I have met many amazing new people, have travelled and done lots of nice things on the few days I've felt well enough which is not easy on weekly chemo with one week off in every 4.
I am trying new hobbies and trying to have as many new experiences as possible as I am very mindful of how precious my time is now.
The hardest thing of all to cope over the last year has not been the cancer and my impending death - although I hope not for a good while yet - but the betrayal of people who meant the world to me and whom I trusted and loved unconditionally. I can understand fear - I really can and admitting to fear takes a lot but that is one thing but to actually try to deliberately make things as difficult as you possibly can for someone already having to bear so much is very difficult to accept.
I guess people have their own reasons and we are all responsible for ourselves and as much as it's all been really heart-breaking for me I do not have the time or want to waste my precious time with regret, guilt or hurt. Not easy though just to move on and not a great time for me to have to construct a new life for myself at a time in my life when I desperately need some stability as my life feels in free-fall.
I do not have a religious faith but I believe in goodness and honesty despite what has been shown towards me. I believe in offering the best of myself and just hoping I get the same in return. I believe that if you radiate positivity and warmth outwards you'll get it back and if not you move on and offer it somewhere where it's welcomed. I'd rather wear my heart on my sleeve and be true to myself and give my all while on this earth - where-else am I going to do this - maybe there is another world somewhere but I'm not going to know that for sure until the end of this life so I'd rather go for it in the present one!
Enough for now - but this bionic woman is back and still bionic - in spirit if not in mind and body!!
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