Topic: Mum - 74 yrs old given 6 months last July 05

I am grateful for any site that offers some insite to what we as a family are going through.

My mum has been ill with pains for over 4 years now, and after numerous tests they finally decided that it was gall bladder pain.  I was in no doubt of this as 4 years ago I, at the age of 22, had to have mine removed after going through a year of pain - so I understand exactly what the pain is like.

Once they operated last July, they found cancer all over the gall bladder.  We have since found out that it is also in the liver, surrounding lymph nodes, also spotting in the lungs.  They estimated an average of 6 months life span.  I know this is always vague and happy to say my mum is still doing well.

She has lost some weight over the last month and her appetite has gone a little also, she occasionally feels sickly (but not often).  My mum has decided not to have chemo as she feels there would be no great benefit from this for her and is worried that she wants to feel as well as she can, for as long as she can.

I am very proud of my mum for her bravery, I never realised what a strong women she is.  Through her bravery she has provided us with just the same sort of attitude. 

I do get very scared at times, I really worry about the time when things will get worse and this has been praying on my mind more and more now.  She is getting a little slower in walking and I notice that her hands shake a lot as well. 

I work, and I really am battling with myself on whether I should be taking time out to be with her.  The place where I work have been really good with me and I can take time out whenever I want.  Because they are so good I feel really guilty in letting them down, but then again I know I only have 1 mum.

I don't know how long we have and would be grateful for anyone who has been in this situation to advise how things progress.

Many thanks for this website.

Re: Mum - 74 yrs old given 6 months last July 05

Hello Susan

My dad has cholangiocarcinoma cancer of the bile ducts and has been diagnosed since february 2005 . He has had chemo for 7 months last year but in november they said tumor is progressing and stopped chemo.

He is not getting better and like you I am thinking about taking time of from work to be with my parents. Here in denmark I can even get my normal salary during but it requires the accept of my father and I feel it is the same as saying that he is soon leaving us so that might take away all spark of life in him, the little that is left.

Just wanted to let you know that you are not alone

Kind regards Randi

Re: Mum - 74 yrs old given 6 months last July 05

Hi Randi

Thank you for reading my post and replying back.

I know exactly what you mean, you try and go day to day as normal.

However, if you take time out to be with them you are sort of saying they haven't got long left and this could upset their spirit.

My brother always say's what ever decisions we make now it will be the right one.

Good luck to you and your family Randi,

Regards, Susan

Re: Mum - 74 yrs old given 6 months last July 05

You are in my prayers as with everyone else here.

5 (edited by susani Fri, 03 Mar 2006 19:21:05)

Re: Mum - 74 yrs old given 6 months last July 05

I lost my husband in November of 2005.  He had been diagnosed about 15 months before.  I was not working and am soooo thankful I had time with him.  Take off work and spend time with your loved ones.  You will never get the time back and you will never regret it.  I would imagine your loved ones know what is happening to them.  It is hard to talk about it but they probably know deep down that they don't have a lot of time.  I am very comforted by the fact that my husband and I spent a year hoping for the best but also talking about the what-ifs.  He kept fighting to the very end but  he was also prepared.  He did not give up or lose his spirit even though he knew it was getting bad.  The end happened very quickly for my husband and it was very peaceful.  There are some signs you can watch for, losing weight, not eating, getting disoriented, etc.  There are some good books on hospice and end of life issues which may help you recognize what's happening.  The doctors and, especially the nurses, can also help you.  Don't be afraid to ask how long they have or find out what is happening.  I wish you all the best.

Re: Mum - 74 yrs old given 6 months last July 05

Thank you Susani for your post, it is so helpful to know there are others out there that are going, or gone, through the same experiences.

I took the big step and am taking time off work at the moment.  Mums appetite has gone, but she does still try to eat a little.  I know I will never get this time back again, and that is what I think when I feel guilty about letting the people at work down.  Hopefully, they understand and would do the same in my position.

My mum seems really strong, mentally, she has such a positive attitude.  Although she seems to get days when she feels sickly and tired, just 1 day a week at the moment.  I think this is probably the type of cancer she has that causes the sickness.

I am sorry you lost your husband, I hope you have lots of happy memories.

Thanks, Susan

Re: Mum - 74 yrs old given 6 months last July 05

Dear Susan-

I am glad to hear that you took some time off to spend with your mother.  I have cc and I don't know how long I have.  I had my liver resected last November, and already the suckers are growing back.  My next step is to get into a clinical trial for sorafenib and should find out next week if I will be accepted.

I actually have two friends coming to town this weekend to see me.  One of them would probably be coming anyway as she is coming to cross-country ski.  But another one is coming out of her way, and I know it's because we both realize that I may not have that much time left.  It is a little upsetting to admit this, but I have to be realistic about what may lie ahead.  So, I am contacting lots of friends and relatives so I can get some last visits in while I'm in good health.  I'm sure your mother will want to spend as much time as she can with you.  I don't want any of my loved ones to jeopardize their work situation, finances, or health for me (my sisters each have offered to donate part of their livers to me), but I'm sure it is invaluable to your mum to see you as much as she can.

Long before cancer became an issue for me, I had two older friends that lived in the Dallas area that had cancer, so I flew down to see each of them over a weekend.  I had just started a new job with a strict boss and had no time off, and as luck would have it, my flight got cancelled out of Dallas.  I had to miss a day of work, but I stayed late several nights and made it up and my boss got over it.  She later left and asked me to apply for her job, so apparently, it didn't affect her opinion of me in the long run.  As both of my friends died within the year, I was so glad I made the trip to see them.  Each one was almost like a second parent to me.

Very best of luck to you and your Mum.  Seeing you will do her good I'm sure.  I don't have my own children, but each time I see my sisters or stepson, it feels so good.

-Caroline

Re: Mum - 74 yrs old given 6 months last July 05

Thank you Caroline for your post and I am sorry to hear yet another personal story about cancer.

I am at the stage now where I don't care what they think, my mum is everything to me and so precious.

I can see the progression in her, her personality has changed slightly also.

Some good may come out of all this awful situation.  I too am re-evaluating my life and planning on attending a part time 10 week counselling course.  I really would like to do some good with my time here, rather than pushing paper round all day.  It has got to be more satisfying.

You take care and have quality time with people you care about, isn't that what life is all about.

Good luck, Susan x

Re: Mum - 74 yrs old given 6 months last July 05

Susan-

You go, girl!

Both of my parents have passed away.  When my father died, I went through a major mid-life crisis.  I ultimately left my husband in an amicable divorce after examining what I really wanted in life.  My mid-life crisis was one of the best things that ever happened to me!   My ex and I are both remarried to people to whom we are much better suited.   My ex seemed to have more respect for me after I left him than when we were married.  He said he admired my strength to address our issues and get on with life, and I think he was relieved that I spoke (and he didn't have to be the one to do so.)

My mother died in 2000 after a long decline in health, and she went in a peaceful fashion.  Again, I re-evaluated my life and left my job as City Treasurer here which was quite stressful.  It was a great experience, but I have no regrets for leaving.  I took another job in government accouting which was way worse, but then an opportunity to buy the local bookstore fell out of heaven into our laps, and it all worked out.  You don't get rich selling books, but it is a lot more fun than governmental accounting.

So I think it's great that you are spending more time with your mother and considering your options.  I hope your mother is doing as well as can be expected.  I suspect you'll come to really cherish this time you are spending with her.

I'm so sorry we all have to go through this, but communicating on this website is a great help to me, so thank you for listening.

My thoughts are with you and your Mum,
-Caroline

Re: Mum - 74 yrs old given 6 months last July 05

Hi Everyone

I thought I would let you know how my mum is, she is sleeping more and feeling really down about it also.  I take her out but we have to make sure we have a wheelchair, and it usually isn't for too long.

My mum still enjoys shopping, so I am grateful for that but I know it does tire her out.

She is more sickly so all the signs aren't good.

I mentioned in my previous email that I am off work sick at the moment,  I was told last week that I my not have a job to go back to, they are going to make me redundant.

Everything seems to happen at once, and I must admit I am really worried about mum now, my thoughts for mum are 24/7.  I wasn't well this weekend and I think that was due to the worry.

This is so awful to go through....

Re: Mum - 74 yrs old given 6 months last July 05

You must take very good care of yourself. Two very stressful life events - your mother's illness and the redundancy may affect your immune system and make you vulnerable. So please take a little time out for yourself to keep yourself well.
meditation and relaxation is very good for keeping your body strong.
Do you have anyone who can share the care with you?
My thoughts are with you
Patricia

Re: Mum - 74 yrs old given 6 months last July 05

Thanks Patricia, you are right I know I have to be careful for my own health as well.  I have a very good husband who is there for me, but I feel I can't let it all out yet, I have to be strong for mum.  I do try and spend time for me, just reading a magazine or watching TV makes me relax. 

I keep going, and try and put a smile on each day, as I know it is precious.

Re: Mum - 74 yrs old given 6 months last July 05

Susan-

Just a note to say that I'm thinking about you and your Mum.

Caretakers, such as yourself, have to have care as well, so be sure to do good things for yourself.

-Caroline

Re: Mum - 74 yrs old given 6 months last July 05

Thank you Caroline.

Just returned from the hospital as my mum collapsed this morning.  They think it is an infection and are doing tests to see if the infection is coming from the gall bladder.

She will be put on antibiotics via IV and have a few tests done.  Hopefully her temperature will come down and everything will settle back.

Just another little set back, we hope that is all it is, mum is doing so well at the moment but this disease is taking over her I know.

Thank you for reading this and my prayers are with everyone, Susan

Re: Mum - 74 yrs old given 6 months last July 05

Susan-

I am so sorry to hear that your mother had to go to the hospital, but maybe they can get rid of the infection and she can feel better again, at least for a while.

I have been getting so tired at night.  This started before I got on the clinical trial medication.  We're making an effort to come home after work, relax, and go to bed early.

We leave today for a short trip over to Utah.  My husband loves to go rockhounding.  We're meeting up with another friend and we will look for geodes and petrified wood.  I will mostly stay in the truck and read, crochet, or nap, but hopefully, I'll make a few "finds" myself.  Just glad I have the energy to go with my husband.

I will think of you while we're over in the Utah desert,
Caroline

Re: Mum - 74 yrs old given 6 months last July 05

Hi Caroline

It is Mother's Day in England today, so will go to the hospital to see how mum is.  She wasn't well last night, and had a fever again in the night.  She isn't eating too much and looks really tired.

I hope you have a good trip and enjoy every minute of it.

Take care everyone, Susan

Re: Mum - 74 yrs old given 6 months last July 05

Mum is still in hospital, not quite sure why.  She is eating well and drinking.  I don't doubt that the time is getting nearer, it is very scary.  I can see mum is weaker, her stomach is swollen and her ankles slightly swollen also.

I watched a programme in England "how to have a good death" it was very good.  A gentleman on that programme was dying, he'd had prostate cancer which had spread to his lungs.  It was frightening to see his progress, one minute healthy and the next not.

They showed how the patient goes on a seemingly healthy path for a while and then it takes a very rapid down turn.  I wish someone would tell us if we are on that down turn.  I will try asking someone at the hospital either today or Monday.  No one likes to commit themselve to a timeline, I understand why but desperate to know.

The programme also showed how we all should talk more about the end of life and what we want.  I am glad to say that we have done this with our mum and know her wishes, hopefully we will get it right for her.

Hope you are all keeping sane and surviving this horrible experience.  Susan

Re: Mum - 74 yrs old given 6 months last July 05

Susan-

I wish we had more TV shows in America like the one you described instead of our "reality TV shows", many of which seem more staged than real - sort of like these wrestling shows.  I think they should do a reality show called "Cancer" which would help educate people about cancer.

I hope you can get one of your mother's doctors to tell you where they think she's at.  My oncologist is pretty good about warning me that I may not have that much longer.  There are days though, when I use my "override" button and just tell myself that I'm not leaving this world until I'm damn good and ready, cancer or no cancer.

I have a post on the clinical trial section about how that's going for me.  Some good and bad.  I have a really bad rash, but on upside I've got way more energy.  They tell me that the rash is a sign that the drug is working.

Thinking of you and your Mum,
Caroline

Re: Mum - 74 yrs old given 6 months last July 05

Hi Caroline

Always nice to see a reply from you, glad to see you are still fighting, I absolutely believe this is all about how you are mentally as well.

Mum is a fighter like you and it shows when we visit, this makes this awful experience a positive on for both her and the family.

You are right, there should be more documentary's like the one we just had.  People think I am strange talking about end of life so openly.  They don't tell be but I know by the way they react.  May be in the future things will change, I can only say it will be for the better.

We organise a pram and cot for a new born, but don't think about the end of life for ourselves or our loved one's.

You know half of me wants to ask how long now and the other half doesn't, not a bit like me I usually like to be in control. 

We have April rain showers in England, but the daffodils are blooming so looking forward to the spring weather.

I watched Oprah today, the one where she had Heather Small on singing "what have you done today to make you feel proud".  I love that song and yet another guide to live each day by.


Keep smiling and take care, Susan

Re: Mum - 74 yrs old given 6 months last July 05

Mum has been out of hospital now for quite a few weeks.  She came out very very weak and has lost a lot of weight. 

Mum had a terrible chest infection which she has only just been given antibiotics for she is also now on steroids.  Mum was very low, I haven't seen her that low before, she is so fed up and wants to know when she will feel like her old self again.  Mum has been on the steroids for 3 days, seems a little better and eating more.

She is so weak though, can just about get downstairs, she tried a shower yesterday but ended up really tired and was sick afterwards. 

Small steps every day, hopefully mum will return to feeling a little better soon, it will take time.  You can tell her muscles aren't strong and I don't know if this can be built up or not.

Everyday is precious, more than ever now, it was a shock at first to see how much mum had changed but we are getting there.

This is really a roller coaster of emotions, at one point I thought my mum was near the end of her life, now I hope we are on the right side of this set back.

Who know's, I pray every night for her, I am not particularly religious and doubted at first if there was anything out there, but I still hope.


My daughter moves into her new house today, and I am hoping at some point mum will be fit enough to see her new home, I know that means a lot to my daughter.

Take care everyone, Susan

Re: Mum - 74 yrs old given 6 months last July 05

Hi Everyone

Well the steroids have done the trick.  Mum is eating well again, not as much as a person without this but doing really well. 

I washed mum's hair yesterday and styled it for her, she looked like her old self again. She is walking much better, still a little unsteady but there is a difference.

What a change, we are pleased for every good day we have, hopefully she will feel confident enough to visit my daughters new house, I know it will mean so much to my daughter for her granny to see it.

Mum's attitude to this has been the key for her, in her mind she dismisses this horrible cancer and tries to get on with life.

I think she realises now that she will have to use wheelchair when she goes out, but hey she is going OUT.

Hopefully back to the day hospice next Monday, I know she enjoys going and hasn't been for a few weeks.

Life's good at the moment, I will take that for today, hope everyone is OK, back on my rollercoaster ride!

Take care all, Susan

Re: Mum - 74 yrs old given 6 months last July 05

Hello Susan,
I see that you haven't posted for a while, but I"m new to this forum and I've been looking over the postings and I see your mother's situation is similar to mine. I understand if you don't want to talk about it, but how is your mother - has she passed? I'm in the "waiting and watching" phase with my mother, wondering how long she has, looking for specific symptoms, worrying and worrying. She was just diagnosed two months ago, but she is in Stage 4, with her entire liver covered in tumors and some on her lungs. I'm just looking for any information about end-of-life care and what I should look for.

I'm so sorry if your mother has passed - and if she hasn't, I'm sure we would love to hear the happy news.

All the best-
Joyce