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

Hi Caroline

Yep steroids have done the trick for mum at the moment, washed her hair today and she feels much better.

Nice to hear from you, hang on in there yourself.

Us carers are a hardy bunch you know, take care, Susan

Hello Jules and Patricia

I too can sympathise, I seem to be going through the same as you Patricia.

Mum has been given steriods in the last 5 days and seems to be picking up on the eating side.

However, she is still extremely weak, I am hoping that with food everything will build back up again.  It is good to feel optimistic again,  however, she seems not to want to go anywhere, she seems to feel too safe at home.

I agree with the NHS, mum went downhill very quickly because she didn't like the food, so next time we will try to get her in and out as quickly as we can.

Take care everyone, Susan

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

Hi Patricia

This story sounds similar to my mums, they have now but a butterfly in so the anti nauseau drug can go straight into her body.

She doesn't feel like eating at all, and has lost a lot of weight in the past 3 weeks, she also is very weak.

She sips water, but because I am not with her 24/7 I am not quite sure how much.  She say's she is getting lots of water, her urine output isn't a lot now.

She is fed up now and I understand how frightening it is to see how thin your loved ones go.

Hi Caroline

If it isn't one thing it is another, it is a something though, I too have always yo-yo'd with diets so I can understand where you are coming from - keep smiling you are doing so well.

take care, Susan

My mum is the same, weight loss and stomach swollen, she is in hospital at the moment due to an infection.  However, they don't know where that infection has come from and trying to find out.

Sorry I don't have the answer for you but just to say we are in the same situation.

I am sure I have read that sometimes even though they are eating the body isn't using the food the right way.  I may be wrong on this and I am sure someone will post if I am.

Take care, you aren't alone, Susan

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

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

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

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

Hi Mike

My thoughts are with you, I am sorry for your loss, Susan

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.

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....

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

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


(3 replies, posted in General Discussion)

Hi Kelly

I am so sorry to hear about your grandfather and my thoughts are with you at this time.

I do wonder how they can predict just how long, I know there are signs but I wish they would explain the process.  1-2 weeks, is just unbelievable, don't apologise for ranting, I am sure we all want to do that to someone.

Keep strong, Susan x

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

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.