How do I know?

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1

Hiya,

I need some advice please.

I’ve had two different types of breast cancer, both in the same breast. With the first one I had a lumpectomy, with several lymph nodes removed, and 30 episodes of radiotherapy.

With the second I had a mastectomy and reconstruction. Doctors decided as I’d had lymph nodes removed with my first cancer there was no chancce of the cancer having spread so I didn’t need chemotherapy. Wrong decision!!

From 2007 through to 2011 I had various chemotherapies trying to deal with secondaries in my lungs, liver and spine. Nothing seemed to work. In June 2011 I had an MRI scan which showed that I now had a 2cm tumour in my brain. Having had full-brain radiotherapy as part of trials earlier in my journey I wasn’t able to have it when I needed it most. Instead, I had 10 sessions of targetted radiotherapy on the tumour. It must have worked to an extent as I was no longer taking dizzy turns.

Howeve, despite having had just one session of Taxol, my oncologist said that my body wouldn’t cope with anymore chemotherapy.
I was sent to my local hospice where I recovered from the effects of the radiotherapy.

In August 2011, I had a meeting with my oncologist where I was told that there was no more he could do for me. When pushed for a time line he told me that the everage life expectation for people with my secondaries was 4 -6 months.

I’m a stubborn kind of girl and I not only passed the 6 month mark but hubby & I celebrated with a bottle of champagne.

I have just passsed the 8 month mark and now find myself wondering if things are moving on. I’m quite tired most days and can’t walk as much as I used to.

I attend the day unit of our local hospice but I know if I asked there I would only be told “that everyone is different”

Most of the posts I’ve read so far seem to be from people who have lost a loved one but is there anyone who can tell me how I will know when the end is near?

Thanks

Tiny

2

Hello Tiny Person,
So sorry to that you even have to think about this, but at the same time, congratulations on defeating the odds.

I’m not sure I can answer your question satisfactorily, as it is inevitably ‘second hand’ and mostly from a ‘professional’ perspective (I’m a minister if you didn’t guess from my handle). Some people do seem to know when the end is drawing near, often growing increasingly tired (weary) and frail. Some people experience clear physical changes (weight loss and/or bloating), others do not. As those of us who post on here know, sometimes people’s lives reach a conclusion very quickly, even unexpectedly, whilst others come back seemingly from the brink to enjoy another period of comparative health. Like everything else, there isn’t a ‘one size fits all’ answer.

There is a lady on here called Clare, or Potmaid, who last December was told to put her affairs in order. Four months on, she is reasonably well and enjoying life - you can find her thread here: share.breastcancercare.org.uk/forum/viewtopic.php?f=10&t=35381&p=669808&hilit=surreal+place#p669808 It is a long thread, but you can follow her journey and see how she has faced some similar questions.

Many of us are still reeling from the sudden death of a lovely lady on here called Tina/Gingerbud. She was young, with everything to live for, and right to the end kept planning the next dream for her family. I think she got something very right there.

All I can say, and I appreciate it’s easy for me to say, is that as long as you feel well enough, continue to live life as fully as you can, make short term plans that relate to any dreams you still have, and when you’ve ticked all those off, think up a few new ones. They don’t have to be massive, just things that will give you pleasure.

Stay true to who you are, and you will not just get by, but live life fully, I am sure. As for when the end will come - no-one can answer that, but when it does, you will be fine, I am confident of that much.

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Tiny Person
I found your post really moving and can only say that i wish you well and send you my thoughts.

Revcat
That was such a lovely reply, i only wish i could find words like that for Tiny Person.

Louisa xxx

4

Hi Tiny Person… I echo what RevCat says… I think the challenge for each of us is to live each day as if it were our last (wouldn’t the world be a different place if we did?!) The other thing to say, as someone who sits with many dying people, is that people often turn inwards, and start to separate from what and who is around. Some people who have had “near death” experiences and come back, talk about a bright light, and a warmth and love drawing them onwards… Most haven’t wanted to come back (to start with!) Bless you, be enfolded in love… life is fragile… Jane

5

Hi Tinyperson

Sorry you are having to deal with all of this but wow, you are dealing with it so well. As Revcat has already so eloquently said, there really isn’t a one size fits all.

I have multiple mets and know that one day I will perhaps be thinking the same as you. I think the best we can do it to live life one day at a time, enjoying the positive things and the love of our friends and family.

I hope you can continue to do that and that your journey is comfortable and pain free.

Laurie x

6

Dear Tiny
Thank you for your openness and questioning. And thankyou to the other posters for their wisdom. You have opened a topic that is so important and I’m just posting to say that I am with you on this and will post again soon. In the meantime just sending thoughts for Tiny and all of you. Be kind to yourselves.
Love from
Tara xx

7

Hello Tiny,

My name is Clare (who REVCAT talked about) I have had similar thoughts and seem to be all over the place, healthwise, I am trying to be ‘positive’ I know ladies don’t like that expression but I can use no other. I plan in advance, maybe a month ahead but really no more. My daughter is keen to go to an exhibition that we have been going to for a few years now, its on the 26th May. Its the logistics that I need to plan now as going to buy the tickets this week. Traveling is the main problem and energy. Luckily I have a dear friend who lives about 4 miles away from the venue who has offered to push me in a chair round all day and to rest afterwards before I drive home too.

I am going to see my oncologist and try to pin her down as to why she assisted me with the rest of my will before christmas, without me asking her too but she knew I was worried about this problem. then she said, go and try and enjoy christmas as much as you can as you mayb wont make new year. I spent all christmas feeling rubbish at my mums with hospice nurses popping in to take bloods etc…needless to say everyone was watching me lol. I really felt that the end was near but it was a very calming feeling, surrounded by those I love and having seem most of the people I loved the prievious week. I had expected a little histeria but I didn’t, just calm as I had completed the endless tasks I had set myself and felt peaceful.

Please feel free to PM me anytime if you think I can be of help to you

Best wishes

Clare xxx

8

Hello again
Clare your description of your experience at Christmas was very helpful. It seems to ring true with Jane’s comment about turning inwards. I don’t know if it helps, Tiny, but I have thought about this a great deal and realised that we can take the fearfulness out of the situation by being in some way prepared. I’m not talking about the practical things, more the acceptance bit. I talk openly about this regularly with my Mac nurse and she is great at being quite unruffled about the conversation (after all it is her job!). The truth is that noone knows when the time will come for them. I find that spending some quiet times alone just being calm and thinking about things and people that have been and are important to me and even about those I know who have died in recent years is somehow comforting and helps me feel prepared. It stops me avoiding the subject, which is tempting, but not really helpful.
Dear Tiny I salute you for your openess and thank you again.
Hugs and love to you all
Tara xxx

9

Thanks for your posts everybody. I’ll try and work my way through Clare’s thread.
This week has been a bad week for me and up until this morning I really felt the end was near. I have problems breathing, pain in my back and a general fatigue in my upper leg when I wakes. Some days this clears up, other days I spend most of the day sleeping or feeling sorry for myself.
On a good day I can see me going on for months, on a bad day I can’t see me lasting till the end of the month. I’ll need to learn to check in here more often to get the support of so many people
Thanks again
Tiny

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Hello again Tiny
Sorry you have had a bad week. How are you today? Thinking of you and hoping you have the support you need around you. Love and hugs
Tara xxx

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Hi TInyPerson… I think you sound like a BIG person inside… have a gentle hug, and be enfolded in love… Sometimes at the hospital, I just sit with people and hold their hands… no need for words… please allow me to hold your hand now… love Jane

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Hey Tiny. Still thinking of you. Hugs.
Tara xxx

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Hello Tiny Person
As Jane has said, you may be Tiny on the outside, but you do sound like you are BIG on the inside.
Please be assured that we are here sitting with you, offering gentle hugs or hand-holds if that is what you desire.
Be kind to yourself, take pleasure in the tiny things that delight you and shout whenever you need to . You do not have to endure pain, there is no honour in suffering beyond what you can bear.
No clever words to offer. Just the alongsideness (if such a word exists)
&lt;&lt;<hug> </hug>

14

Sorry to be a pest folks. I’'ve tried to access potmaid/Claire’s link but I’m not getting it. I don’t know if it’s as a result of the new website or if I’m just useless with technology. I’ve tried asking one of my sons to help but he’s just getting the same results - a page with a listing of latest posts.
Sorry
Tiny

15

Hi Tiny,
I think this new format is still troubled by its new teeth… I am using google to find threads if I can recall their names, as it’s quicker and easier! Anyway it is here: Breast Cancer Forum - support for you - Breast Cancer Now if you follow this link it should take you to the first page of Clare’s thread - the pagination has changed on this new forum… on the old one it passed one hindred pages a while back, so don’t be thrown by the references to passing 100 pages!
Happy reading.

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Thanks RevCat. This got me into PotMaid’s thread ok and I’ve bookmaarked it so I can read it a bit at a time.

Hope everyone who has responded to me here is keeping well - at least as well as can be expected.

Tiny

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Hi Tiny
Wondering how you are. Have been away last week so just catching up. Tara xx

18

Hiya,

I’ve been quite tired this week and the effort of getting my laptop out has seemed too much. Last Sunday some of the family did a parachute jump on behalf of the Maggies’ Centre and we had to be up at 6.00 to get to the airfield on time. it was a long day and up here in Scotland, very very warm and that hasn’t helped.

Still, I have to be grateful for the fact that I’m still breathing every morning. Now I’m going to spend some more time working my way through Clare’s thread. I was only on Page 20 the last time I looked at it. - very good and it covers a lot of things I wanted to know.
Thanks for caring.
Tiny (Hazel)

19

Hi Tiny Person/Hazel
Just back from my hols and catching up. Well done you and yours for the parachute jump. I’d be petrified!!!
Hope you are doing alright. Take it steady with Clare’s thread… it will have you laughing and crying, but you need to care for yourself, especially as you near the latest few pages.

20

Hiya,
After a few really tired days, I’ve finally got back to my computer. Still working my way through Clare’s thread - and now I’ve found Benchland.
Guess I’m going to force myself to get the computer out more often.
Tiny