New member

[kim]

Hi All,

A quick review of where I am now.

My Mum, 68, was diagnosed mid March 2007 with a 'blockage' in the bile duct, we later found out it was a 5cm by 7cm tumor in the head of the pancreas. Non operable, with chemo as an only otion to shrink the mass and maybe followed by radio treatment to keep it under control. She was suffering badly from the effects of jaundice. She had a stent put in and then followed 3 weeks of Gemcitabine, which worked wonders, she regained her appetite and was more like the old feisty self we knew her to be.

Then the stent blocked and sepsis set in with an ambulance trip to A&E she was suffering with sepsis, hypertension and tachycardia. Two days in ICU and about a week in a ward where she suffered terrible ICU psychosis ( why does no-one warn you about this!) I thought my bloody minded and stubbornly independant Mum had finally gone, when she began to slowly improve and was sent home.

Three or four days later the stent bolcked again, the chemo suite said they would admit her in a couple of days time to replace the stent. I went round to her house every couple of hours or so to check on her blood pressure and temp etc in case of a repeat of the previous episode, but the stent was replaced by a metal stent with a plastic lining.

Today we went for cycle 2A of chemo, she is still very weak and for the first time needed to go in a wheelchair from the carpark, this is a big deal for both her and me who are probably trying to not accept what is happening.

I find it hard that no-one is willing to tell us exactly what the prognosis is, Ive read in other posts that people have been told that they have weeks or months but all we have be have been told is that no-one can possibly tell.

I have read other posts and am amazed at how well people cope with these situations. Im not looking for an answer to a question but just looking for ways to cope with what has happened and is to come.

Kim

[angelinamacc]

Hi Kim,

I thought I would reply to you as I don't think anyone has yet. I too have a mum with PC she was operable and in 2005 she had a major operation which they called a modified whipples as her tumour was in the tail and was 5cms.

The operation was a success and she recovered eventually after a long haul.

All her subsequent scans have been clear but she has now developed an awful pain at the site of the surgery and we have an appointment at the chronic pain clinic.

My worry is that the cancer has returned and I am trying to get her scan brought forward without alarming her.

All this is not answering your questions! Have you got a McMillan Nurse or a Nurse practitioner you could ask for help? Or what about contacting Cancer Backup.uk

I think very often, you know, that the doctors are only guessing when they give prognosis of how a disease will progress and very few seem to get it right. I know what you mean when you say that lots of people seem to know exactly what is going on and what to expect and sometimes one can feel like there is only you struggleing to come to terms with things but you aren't alone, I am Nurse and even so don't understand all the oncology nor does it make it any easier when it's your mum who is ill. Sorry I can't be more help, keep in touch and let me know how it's going/

Angie X

[Tara]

Hi Kim.

It is so freustrating not to know, i do understand. I was never told re: my mum and i still feel angry about it now.

I just wanted you to know i am thinking of you and wish you and your mum all the very best in a very difficult situation.

Take care,

Tara.x

[rosieh]

Kim

I am sorry to hear about your mum, she has had a rough time of it, hasn't she?

When my dad was diagnosed with PC we were told no more than he had "months" left. Well that could mean anything, couldn't it?!

I did some online research and came to the conclusion that Angie has posted - everybody is different and Doctors can't put an accurate time line on it. They can usually see when a patient is getting very close to the end (last week or so) though.

We just did our best to make the most of the time we had with our Dad, and I coped by just taking things day to day/week to week. Just the daily and weekly routines of getting things done kept me sane! We also had some very good times with Dad in his final months - we laughed a lot and worked with him to sort out a lot of things which was important to him. Tough to do, but we got used to it.

Angie

I hope you get your mum's appointment sorted out quickly and that you get the best possible results.

[angelinamacc]

Hi All

A quick update, I havn't done anything about bringing mum's scan date forward as I have had a word with one of our lovley Anaesthetists at work, who gives mum acupuncture for pain, and she has written her up for some different pain relief which she thinks she may tolerate called Celebrex and also some cream called Capaisium to apply to the painful area. She is so much better taking these that she was able to come out shopping with my friend and her mum yesterday and we had such fun.

Also Jo { the anaesthetist} counselled me about what would be gained if we brought the scan forward and the news wasn't good, would it change the treatment, probably not, as mum isn't suitable for chemo. It's such a fine line knowing what to interfere in and what not to.

I am still really hoping that the pain is neuropathic and not a recurrence so praying for that.

Angie

[kim]

Thanks for your replies, this really is a great place to air worries with people who understand!

Mum went for cycle 2C yesterday and has been able to walk into the chemo unit this time. Shes really improved in the last 2 weeks or so and is feeling a lot stronger although she is still low in potassium and iron. She is still losing weight though even though her appetite has improved if not returned fully, she now weighs just over 8 stone from a rather cuddly 13stone she was before.

She is coming over for dinner tonight as she loves to see the grandchildren (my 4 children) which is the first time shes felt fit enoughto for a couple of months.

I feel alot more positive now too and I am not focusing on how long anymore but just filling the time we have left with lots to do!

Thank you all again Kim

[angelinamacc]

Hi Kim

Glad to hear you sounding a lot better, your mum seems to have more energy if she feels able to come to you for dinner.

It's odd isn't it one day you can all be in the depth of despair and then the next day things don't seem so bad and it's all about how your mum is feeling and the sypmtoms she is getting.

I tend to lavish gifts on mum when she feels ill, as if that will make her better!

The one thing you can do is try to make some smashing memories and you obviously have come to the same conclusion as us, to make the most of every day and not dwell too much on the time.

Let us know how things go.

Love

Angie

[kim]

After being really well for about a week, Mum's stent has blocked again and we were rushed into hospital on saturday with her blood pressure about 68/40 and a pulse rate of 140+, her temp was high and she was having trouble breathing. She was on the medical emergency ward for about a day as they said she was too unstable to move onto a normal ward.

They wanted to call myself and my brother into hospital during saturday night/sunday morning as she was so ill, but being Mum, she said they were not to wake us up!!

On Sunday morning we were told that they did not think intensive care was an option any longer and that they were just going to keep her comfortable. For how long they couldn't say but said if people wanted to visit we didn't have to worry about the visiting times.

I called all her friends and took my children up to see her.

That was on Sunday morning, by Sunday afternoon her blood pressure had come up slightly and they decided to move her to a lovely quiet ward. Over the past few days shes battled and improved, shes off the oxygen, heart monitors etc and has even got out of bed to go to the toilet.

She has had blood cultures done and after battling for about 2 days to find SOMEONE who can give me results have been told shes got 2 bacteria, strep and e.coli, shes still on 2 lots of intravenous antibiotics for this.

What I am finding difficult is that after the nurse told us on sunday morning that things were looking pretty grim, no-one has spoke to us about whats going on since. Every time I ask a nurse a question they say mums nurse isn't there at the moment but they will find out only never to return. I want to know if the improvements shes made are what they were expecting? can we expect that if she carries on this way will she come home? is she now out of immediate danger?

Everyone is always so busy the only response I get when I ask about mum is 'shes stable'.

Did anyone else have these experiences? I dont want to be the dreaded bulshy visitor, but I do want to know and AM ABLE TO UNDERSTAND what is going on with my mum. Is this too much to ask?

Sorry for the rant but I'm sure you all understand.

kim

[angelinamacc]

Hi Kim

Sorry your mum is in hospital again but she sounds as though she is improving a little. As for not being able to get any information from anywhere it is so frustrating, I know.

As you can see from my profile I am a nurse, but don't work on the wards as I am a Theatre Sister, however if anything lets us down it is communication. The Doctors are so busy and the nurses are, in my experience , too frightened of saying the wrong thing so say nothing which is totally unacceptable.

Another reason for the silence is that they just don't know what the outcome of a particular bout of illness or infection will be so won't say.

The word 'stable' should be banned from all hospitals as it means nothing really and is only good for press releases and not a fit thing to say to peoples loved ones! The only thing I would say is get bolshy and stroppy and tell them the level of communication is unacceptable. I have been really pushy since mum was ill as what do I care what people think of me as long as mum gets what she needs.

I have rung doctors in the middle of the night, phoned the chronic pain clinic constantly to get the appointment brought forward and all manner of bad behaviour! You can insist that you have an appointment to see your mum's doctors and discuss her care.

If we were in the States we wouldn't put up with this, so why should we in Britain.

Sorry to be ranting but got all fired up! I hope your mum continues to improve and get rid of the infections.

Thinking of you.

Angie

[kim]

Hello all,

About 2 weeks on shes improved immeasurably, it will be her 69th birthday on thursday (23rd) this week and they have said that if she is not discharged that they will allow me to 'kidnap' her for a few hours on Thursday as there are about 20 family and friends who want to see her on this day. The sister was most adamant that this would not be allowed on the ward, but we were planning on taking mum to the park in the hospital where we would of set up balloons etc and have all her friends waiting to wish her a happy birthday.

She has finally agreed to come to me, she lives alone and even she has had to admit it's too much now for her to cope on her own. I am really scared that I will not be up to the job of looking after her and coping with the day to day life of my 4 children and husband etc. We are about to redesign the house to cope with what she may need. I love her to bits and do not want to let her down. Being a carer is really scary!

Will keep you all posted on developments.

Kim, X

[kim]

Very sadly, on 19th September, Mum died.

She died at home with my brother and his wife and little boy, myself, my husband and our 4 children all with her.

Her stent had blocked again 2 weeks before but the cancer had spread into her stomach and she was suffering from liver failur also. They were unable to replace the stent this time. She was also suffering from repeated sepsis.

We got her home on Wednesday at around 4pm and she died at 9.40pm that evening.

Her funeral was 29th September.

I don't think it has quite sunk in yet. I can't believe it was less than 6 months ago that she was diagnosed. It was so quick and I wasn't ready for it to be this quick.

I gave up my job to care for her at my home, wanting to spend some quality time with her and all we got were 10 days, 9 of which were in hospital.

Thanks to you all who have written with encouragement and support over the past few months, it has meant alot to me.

Kim

[angelinamacc]

Dear Kim

So sorry to hear about the sad loss of your mum, I will pray that you all find the strength to cope. You should feel that you did your best and that every one she loved was with her at the end as we all would want for ourselves.

She is at peace now, no more pain and suffering, and I believe she will be watching over you all.

Love

Angie

[peter d]

Dear Kim,

Sorry to hear of your sad loss. I'm so glad you could all be there with her.

It is now 3 weeks & 5 days since I lost Mum, it is hard i know, but it sounds like you have family around you, comfort each other & remember the good times you have spent with your Mum.

There are always times we can look back on that make us laugh, those are the things we try & cling to.

Your discription of the passing of your Mum sounds so similar to my story it makes me ralise i am not alone in the way i am feeling now.

Kindest Regards Peter.

[sharmayo]

So sorry to hear about the passing of your mum.

I lost my dad 2 months ago so I know how you must be feeling.

look after yourself and your family and think of the good times you had with your mum,that at the moment is the only thing that keeps me going.

Take care.

Sharon

[jihiy]

I would like to offer my sympathy to you and your family. My sister is about two years younger than your Mum and she hasnt started any treatment yet except for a stent being put in. Thank you for sharing your story.