Beautifully written Jane-you have very eloquently said what many of us struggle to put into words.I wish you well.
I was dx in Feb 06 and I don’t mind admitting that I’m sh*t scared…every day.
Anyone who says that it’s the ‘best thing that ever happened to them’ must have had pretty crap lives before being dx, and I tell you what…I had more than my fair share of sh*t before BC devastated my life and it is the worst thing that has happened to me.
Sheana x
I would just like to thank everyone for your honest and open replies, because I, like everyone else is absolutely scared s*******that my cancer will never go away. I am just starting out on the journey having just had 5 courses of chemo and I know I shouldn’t, but I just keep thinking to myself “when will I get it again” “how will it come back”! I’m sorry that seems so negative, but who can honestly say that it won’t return, develop into secondaries etc.
I am having chemo before surgery, so the cancer is still inside me, I’m also having radiotherapy after surgery and am having herceptin already alongside the chemo. I think I am being given the best shot possible at zapping this horrible disease, but I expect so did everyone else who has been in remission for a long time and then ended up with a recurrence.
How/why do some cancers develop into secondaries? Are they there already and get missed or do our bodies allow them to develop,if so why? is there anything to be done to prevent this? There is no one in my family that I know who has had cancer, so why me? What about the future for my daughters, and son?
I know no one can answer these questions because as Karen says, it is all so uncertain and whilst we have to get on with life in the best way we can, do we ever get over the concern. My own circumstances are much less traumatic than some of you ladies who have secondaries, so I feel very sorry that I am wingeing, I’ve got it easy compared to some.
It doesn’t stop my worrying though.
PS sorry for whittling on - I am still battling a breast infection which has been with me now for several weeks and looks like its flaring up again, depite having a neulasta injection.
I can only agree with you all, and jane your honesty is so refreshing I always look for your posts to see what your opinion is as you say things as they are and I know it comes from the heart and with honesty.Living with breast cancer is very frightening and not a day goes by when I dont think of it ,if only there was a cure after 5 years but sadly I know of many women like myself who have had reoccurences after a long period of time and its living with the uncertainty that is so soul destroying, sometimes I just want someone to put their arms around me and hold me, I dont want anyone to tell me its going to be alright cos no one knows that, and I prefer janes approach, I can deal with that.At least we have each other for support and we can be honest among ourselves about how we are feeling, best wishes to everyone love suzan x
Thanks to all who have posted on this thread. It’s great to have somewhere where we can be completely open and honest about how we are feeling, without feeling guilty about it, or receiving judgement for being negative. Somewhere we can drop the “brave face” we wear most of the time.My best friend is annoying me by saying" just two more weeks of rads" then you’re finished, won’t you be glad?". For me, I’m thinking ahead to my first consultation, and all the questions I still have,and I’ve been blunt with a couple of others who’ve assumed I am cured.
After my surgery I felt fairly “positive” about my cancer being found and treated, and that I would be “alright” after that. Now, half way thru’ rads I am feeling very unsure about my future life span.
I am angry that not enough seems to be being done to uncover why we have such a high rate of breast cancer in this country,and in the USA and Europe.
I wish less money would be spent on what I see as trivial, hedonistic activities, and war, and more on cancer research.
That’s all I can say at the moment, as my daughter wants to use her laptop!
best wishes to all on here,
Ann G
Jane - that was powerful.
Just a PS really to thank you for your responses.
I suddenly had an aha moment last night (which coincided with a 12 hour unexpected downturn on the chemotheapy side effects) that actually what I fear really is not dying…not a lot I can do there…but declining health and chronic illness, more treatment side effects and all that horrible stuff which accomapnies end stage cancer.
Something else not talked about much.
I’m so pleased if anything I have written gives others a space to feel OK about their own similar (or not) thoughts and feelings.
Jane
jane once again you have set me thinking, I also fear not that we will die as you said there is nothing you can do about that but its the will I keep my dignity, will I have to rely on other people, all those treatments and side effects to give us a bit extra time. I know this is a depressing subject but perhaps by admitting it to ourselves and others its just another thing we can discuss and help each other with. love suzan x
I am also afraid of end of life stage…I watched my friend go through this 2 yrs ago…she tried to retain as much dignity as possible…and died in an hospice…where fortunately she was able to regain some dignity.
However seeing the suffering she went through…the bloatedness, the loss of understanding and comprehension, the loss of mobility, the loss of speach, the pain, etc., has made me seriously consider writing a ‘living will’…[I think thats what their called…think Jane knows alot about these]…my concern is though even if I write one will it be adhered to?
Karen
karen so glad you started this thread, such a relief to voice your fears out loud and not be afraid of other peoples reactions. best wishes suzan
suzan…Thank you…it is very refreshing to be able to voice of all of these things…and to get such wonderfully honest replies…and also to know I’m not the only one who feels like this.
Karen x
I find that now 2 1/2 years after my diagnosis and poor prognosis, I’m supposed to be ‘over it’ and back to ‘normal’…my cancer is now yesterdays news and somehow even those who sat with me when I was told that I was at high risk of developing secondaries and should live each day etc etc seem to have forgotten…
What I would like is for the people around me to acknowledge how difficult it is to move on and not to worry. I hate living in fear, wondering if and when it’s going to come back and how long I’ll get if it does. Breast cancer doesn’t just leave your life when treatment finishes, it hangs around…sometimes I feel strong and able to cope, other times I don’t do so well but always I put on a ‘brave face’ for everyone…why???
It’s hard living life with fear and uncertainty.
You have just summed up how I feel Skimum. I am the same length of time from dx as you and face the same problems…god it’s tough. For some reason I’m going through a really bad time at the moment, everything is black.
Sheana x
On the subject of living wills…
these are now known as advance directives and coincidentally I spent an hour this afternoon talking about mine with a palliative care consultant. I’ll post more about this when I’ve sorted out excatly what I’m going to say. The consultant said that since the new Mental Capacity Act 2007 and a new NHS strategy on end of life care more people are looking at these. It was a really good meeting…I’m impressed by everything I’ve seen of my local hospice care services so far.
Jane
Just wrote an essay but have deleted it. Even though I had to face really bad news at my diagnosis and looked at the end of my life, I don’t know what it must be like to have treatment but to know that there is a high chance of the cancer returning.
the only thing I’d say is to try not to waste what precious life we have left in fear- the world is still a beautiful place. Hang on to hope - it doesn’t matter what you’re hoping for but let yourselves believe there is something to hope for, no matter how small it is.
Look forward to that post Jane.
Skimum…can completely relate to how you feel and I’m 4 1/2 years from dx…I have had ‘brief’ intervals of complacency…they don’t last long as I soon remember this disease is unpredictable…especially with my friends death, my other friends secondary dx, and the fact my aunt has bone secondaries… she is suffering severe unexplained weight loss to.
Karen x
Btw, I’m obviously having a good day today! on a bad one, I’m a lot more grumpy and unpleasant!!!
My most recent scared patch was a few weeks ago and I just cried on and off for three days, I didn’t think I could trust myself to go anywhere or talk to anyone without bursting into tears- sometimes it’s so confusing and hopeless. But thankfully, not today.
The Cancer Reform Strategy has a lot about palliative care in it and the Gold Standards Framework has been in existence for a while now which gives people the opportunity to decide where they wish to be at the end of their life (where possible).
Also, there is something called the Liverpool Care Pathway which kicks in once you are at the end of life.
There’s still a long way to go but I am involved in quite a few palliative care meetings that are happening in our Trust and also at our Centre of Excellence (went to one yesterday). The really interesting thing yesterday was that out of the 36 people present (I was the only patient) they all saw palliative care as the patient being on the ward right from the start and hadn’t thought of the fact that a lot of us with advanced cancer (especially breast cancer) don’t always start as an in-patient at the beginning of palliative care and are seen within an out-patient environment and they hadn’t considered that!
They are looking at trying to engage patients at the beginning of palliative care about some of the really difficult issues although that also throws up some other ones as was highlighted yesterday - what about those patients who have dementia - they are never going to have that talk with them so it probably then falls to talking to the family (if there is one).
They also felt that it’s a culture thing. One of the consultants there was a Sikh and she said in her culture dying and dealing with someone who is dying isn’t a taboo subject.
AnneTh,
I did catch your original post…you most certainly have been and still are going through the most of awful of times…to be diagnosed with cancer in so many places right at the very beginning of diagnosis must of been horrendous and very frightening.
The fact that you have still managed to find the world a beautiful place after all you’ve been through is very admirable and I take my hat off to you to be able to do so.
I know you said on your original thread that thought you were ‘probably going to anger some of us by your post’…please don’t think that…you have as much right to voice your thoughts on dealing with this disease as any of us.
I hope you are still having a ‘‘good day’’ and hope you have many more too.
Take care
Karen x
Whenever I feel alone with my despondancy along comes JaneRA to really say it as it is and how very very real the threat of premature death is to this disease.
Jane again I salute you my darling for saying how it really is, I have lost two close friends lately to this disease some who had “better” prognosis than me at initial diagnosis, the whys and wheres of this illness never fail to scare the living sh*t out of me even though I am now 5 years post diagnosis and supposed to be “cured”.
I had a crap prognosis (multi node yada yada) and was told I would probably be six foot under by now but Im still here hopefully NED but still worried sh*tless, the fear creeps up at weird moments sometimes, like if I am shopping in the Supermarket and I see mums with thier children I want to cry into the frozen peas…I still say “why me?” and “its not fair” because in all honesty its bloody not!!..the thing thats grates on me the most though is the fact I see some 90 year old b walking about who were quite horrible in thier time yet don’t have a damn thing wrong with them, I am in no way religous but when I get up there (be it sooner or later) I shall have words with that God bloke, we are all sent this as a “test” and to show us a better meaning of life? what a load of crud…I was happy before cancer came barging into my life, I needed no tests or eye openers to see how my life was going, I always saw the good in people and tried to live a good virtous life…so have I passed the test? why did my close buddy just die aged 36 with two little children? did she fail?
I am not in your shoes (yet) Jane but I am always aware that maybe not now but 2 years or 10 years down the line I will be the next on the conveyor belt of metastatic disease, all I suppose we can hope for is better treatments to come along which can prolong our lives more, but by being prolonged I dont mean with endless sufffering and indignities as some cancer treatments can induce.
I am so fed up of my husband and all my family saying “oooh 5 years now your cured”…please tell that to the many brave ladies who battled before us and are now dead, the “laymen” don’t want to see it that way, they want the pink pom poms and ra ra ra…cancer never goes away once it gets you, be it physically or mentally I just wish more people would understand that and more doctors would work on finding ways for us cancer limboists to get back our bubble sometimes…
Thanks Jane your a true honest person who says it exactly how it is
Love Nikki xxx