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Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Lost in a nightmare

Postby Slewis7313 » Sun Mar 09, 2014 9:11 am

Hi Amanda, whilst your treatment at the regional Hospital was good, it is no wonder that you feel the need to 'vent' as the lack of coordination coupled with misdiagnosis is certainly making your difficult situation even worse. My understanding of 'spots' is that they are picked up on scans and MAY be the beginnings of other tumours. This obviously does not help you as they have effectively stated they were seen on an earlier scan, but not specifically targeted for urgent treatment. I really hope Phil has some positives soon as he has had such a difficult journey to date. Keep phoning and pestering for the appointment as this does sometimes make a difference.

Good luck!

Steve
X

Charney22
Posts: 21
Joined: Tue Dec 31, 2013 6:47 pm

Re: Lost in a nightmare

Postby Charney22 » Sun Mar 09, 2014 10:10 am

Amanda I am so sorry phil is having problems at the moment. This is such
A roller coaster ride my thoughts are with you. I can so understand your anger
Having gone through similar myself, after Steve was told nothing else could be done
And was basically being sent home to die, his oncologist visited on discharge, all smiles
Saying to me "I bet your excited to have him home " how I didn't hit him I will
Never know. Keep strong , love and big hugs cheryl
Xxxx

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Lost in a nightmare

Postby Cathy » Sun Mar 09, 2014 7:58 pm

Hi Amanda,

I can't offer any great advice I'm afraid but wanted to post something to you in support. I'm sorry Phil is struggling so much. I don't know much about "spots" but these should be monitored by your oncologist by CT scans and how Phil is feeling.

It would be good to get an idea of when chemo is due to restart so chase up the appointment if you don't hear anything soon. If an appointment has been set then the secretary ought to be able to let you know when it is if you ring back.

Very best of luck

Cathy xx

PCUK Nurse Dianne
Posts: 285
Joined: Tue Aug 14, 2012 3:29 pm

Re: Lost in a nightmare

Postby PCUK Nurse Dianne » Tue Mar 11, 2014 2:33 pm

Hi Amanda,

Sorry to hear you and Phil are struggling at present. I wanted to suggest a way forward here, and also just to make one comment about the GP. He is not incorrect in a way, as steroids can have an effect on patients mobility, and this is often something that the GP will see in everyday practice. The symptoms may vary with the steroids, and I guess in defence of the GP he may not have been aware of the full outcome of Phil's CT - ie the spots on the spine.

I am being very honest here, so please bear with me. Often on a CT scan, there may be 'spots' that are visible, that are often too small to confirm that they are signs of tumour or tumour spread. If a patient is about to undertake a course of chemotherapy and these are early signs of tumour, as your Oncologist said, you would hope that these would be 'mopped up' by the chemotherapy. However, it should be explained in plain English that these may be early signs of tumour and that they should be reviewed at the next scan. Of course it also helps if you are given advice about signs and symptoms of what to expect too.

Amanda, do you have a nurse that you regularly see at the Oncology centre, or another regular contact that can help you to access an appointment with the Oncologist. It may be worth trying the Oncologist's secretary again, maybe she will be more helpful this time around. Were you given any other contact numbers for times like this when Phil started his chemo?

Feel free to be in touch if we can help at all.

Dianne
Support Team

amanda45
Posts: 14
Joined: Mon Dec 09, 2013 5:39 pm

Re: Lost in a nightmare

Postby amanda45 » Tue Mar 11, 2014 4:57 pm

Hi Diane

I realise that steroids can have this type of side effect but to discuss this ongoing deterioration for 3weeks and not forward him for any further investigation is in my opinion unacceptable. Surely as phils GP shouldn't he be aware and upto date with Phils condition? We have had an ongoing issue with this practice as it took 4 months to get phil a diagnosis in 2013 and only then after I made a scene in the surgery after no tests of any kind were done for the first 3 months.
I have spoken to the hospice doctors team and they will now see Phil weekly on an outpatient basis when he comes home to ensure this situation does not happen again. (this is my opinion is an abuse of a non NHS funded body using it as a diagnositic tool for terminal patients that the NHS seem to have no time for). The nurses at our local chemo unit are run off their feet and I can't see that they would have the time to chase the oncologist around as they seems to think that not having seen Phil personally for over 6 weeks is acceptable although we have seem his brand new registrar once. I think a lot of our problems seem to stem from our geographic location and if we lived in a large urban area this would be much improved - the good old postcode lottery again!

Cheers
Amanda

amanda45
Posts: 14
Joined: Mon Dec 09, 2013 5:39 pm

Re: Lost in a nightmare

Postby amanda45 » Sat Mar 15, 2014 11:12 pm

Latest update, Phil has now been diagnosed in the hospice with morphine saturation as he was becoming very sleepy and confused, his zomorph has been reduced to 70mg from 100 twice a day and this has improved the situation. He is now booked in for a ct scan next wed and is seeing the oncologist the day after so we will see what he has to say going forward. Phil is now hardly eating anything as he feels very sick when he eats and even a couple of tsp has him gipping and it takes all his concerntration to keep anything down. The hospice team have tried 3 different types of anti nausea meds but they are having no difference. Syringe drivers are being discussed as even swallowing the tablets is very problematic. His weight and strength continue to diminish and with his lack of mobility due to the radio therapy on his spine he is now virtually bed bound. He hates this and know that there is a possibility that the chemo that was suspended may now be stopped. He is starting to be very down and the only thing that he enjoys are ice lollies. I worry that he will not recover from this latest set back and sleep for me is now proving increasingly elusive. My friends tell me that I need to access counselling before I end up in a mental hospital but I haven't got time for this or have any idea how to access it. We continue to drag ourselves through each day waiting for medical professionals to make decisions that just make things worse and I dread what they have to say as time progresses.
Amanda

Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: Lost in a nightmare

Postby Carole McGregor » Sun Mar 16, 2014 12:46 am

Oh Amanda, this is just awful. You and Phil have had so little decent quality time since his diagnosis. It's been one crisis after another. Hang on in there girl. You will find the strength from somewhere. Sending lots of virtual hugs.

Carole xxx

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Lost in a nightmare

Postby jay » Sun Mar 16, 2014 7:39 am

sending you a massive hug Amanda,
love Jayne
x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Lost in a nightmare

Postby nikkis » Sun Mar 16, 2014 10:26 am

Dear Amanda,
So sorry to hear this. I would push for a syringe driver, as they can put pain killers and anti sickness medication in this, which will hopefully work much better than taking anything by mouth. Paul had had one since new year, and the district nurses come and change it every morning and can increase and decrease his dose according to his needs. Hopefully he will be off it soon, don't feel that if Phil has one it is a step backwards, it is just a way of getting things under control.

Have you asked at the hospice about counselling? I see someone at ours while Paul had alternative therapy. Not sure If it helps, but it is probably good to let it all out to someone who is not emotionally involved.

It is so very hard seeing someone you love suffer, and the not knowing what the future holds can be unbearable, I know too well how you feel. Make sure the professionals know how desperate you feel, so they give you all the support you need,

Take care,
Nikki

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Lost in a nightmare

Postby sandraW » Sun Mar 16, 2014 3:43 pm

Dear Amanda,
I can only echo what the others have said. I feel so sorry for both of you, you
are having a terrible time,sending you virtual ((hugs)) and hope as Nikki says you can access some counselling, I must admit that most of our healthcare professionals ask how I am coping immediately after asking Trevor how he is. take care sandrax

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Lost in a nightmare

Postby J_T » Sun Mar 16, 2014 3:55 pm

So sorry to hear of Phil's problems and the dietary side sounds much like Ray was. He ate nothing for the last 5 weeks and took only flavoured crushed ice cubes and that eventually ceased too.

I do hope that things can improve for you both. Take care.

Julia

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Lost in a nightmare

Postby Cathy » Sun Mar 16, 2014 5:15 pm

Hi Amanda

So sorry to hear about Phil's struggles (and yours).

Your palliative care nurse or GP ought to be able to get you counselling if it is something you think you might benefit from. You might need to join a waiting list so it would be good to get a referral at least.

Very best of luck

Cathy xx

amanda45
Posts: 14
Joined: Mon Dec 09, 2013 5:39 pm

Re: Lost in a nightmare

Postby amanda45 » Sat Mar 22, 2014 12:32 am

Many thanks for all the supportive words but it seems our journey with this awful disease maybe coming to an end. Phil attended the local hospital for a ct scan on Wednesday and we knew there was something wrong when afterwards we were asked to wait to speak to the radiology consultant before returning to the hospice. After a lot of hanging around and a lot of the staff whispering around corners the consultant appeared and informed us that he had a very large blood clot spreading across both lungs and they were completely baffled why he was not very breathless and distressed. The actual words they used were 'its tremendous that your still alive' This obviously was a terrible shock. Once back at the hospice the team there explained to us that this was a very dangerous situation and that is would also very likely be a chemo stopper. His fragmin was increased to 18,000 units and this morning we returned to the hospital to have an umbrella stent fitted around his vena cava to try and stop any more clots heading up to the lungs from the legs. We also saw the oncologist yesterday and he informed us that the chemo had not worked and that the pancreatic and liver turmour had progressed. This and the clot meant that no more chemo would be given and he has now been released into the full time care of the hospice. Although he is pleased that he will no longer have to attend the local hospital as he is terribly nervous every time he sets foot in the place he is in shock and we know that time is now short. His eating has started to improve ironically and the team think that this problem was very probably caused by the radiotherapy irritating the oesophagus. Friends and family have now all been informed and continue to visit. The funeral director and solicitor are coming to see him in the next couple of days to finalise the will and funeral arrangements as he is fretting about getting this done. The hospice have assured him that the bed is there for him and that they will do everything in their power to keep him comfortable. What an amazing place it is and all the staff who work there are very special people.
We know that time is short now and so what ever is left will be concerntrated in giving him what ever he wants with the health limitations he has. We have been able to access a counsellor who hopefully will be able to help him find so acceptance in this terrible situation. I know he is frightened of what is to come and he feels very cheated that at 48 this is it, this is tearing me and the rest of the family and friends to pieces to witness this but some how we will stay positive for him until the time comes. We now live on a knife edge wondering whether it will be the cancer load or the clot that will take him.
Amanda

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Lost in a nightmare

Postby Bee » Sat Mar 22, 2014 1:25 am

Hi Amanda,

I haven't posted on your thread before but I have been following it. My heart goes out to you and I know exactly how hard this Is for you, Phil and your family.
I can offer no magic wand. But I am thinking of you, I lost my husband in December (age 43) after a very sudden deterioration and it is so hard to do what you are doing. Hospices are wonderful places and are there to support you all in this awful time. Cherish every moment , and say all the things you want to say, but most of all take it hour by hour.

Take care

Bee xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Lost in a nightmare

Postby nikkis » Sat Mar 22, 2014 7:57 am

Dear Amanda,
I don't know what to say, I am so very sorry to hear your news, it is all so terribly unfair. Keep using that support you have built around you,
Love,
Nikkii