Feeling Low and Wondering What Next

[janem]

Hi

I've been reading other peoples posts but only asked one question before. I thought the people on here would understand how I feel.

3 months ago everything seemed so normal and straight forward. My dad was diagnosed with pc at the end of October and life has been a complete nightmare since.

Dad had pains and then got jaundiced, they tried to put a stent in but it wasn't long enough so the second attempt 2 days later worked and he improved but was back in 2 weeks later with jaundice again, the stent was blocked and replaced by a metal one. We have been told that it is inoperable but that if chemo shrinks it they will review it and see if they can then operate.

In the meantime my mum was not coping and was put on anti depressants and later when she said that we were conspiring to get her into hospital so we could sell the house and dad could have the money I went with her to get her assessed and she was put on medication to deal the paranoia thoughts. The last few weeks she has been saying she can't look after dad and he isn't putting on weight but no matter what we say that it is the illness and she is doing everything she can we could not convince her.

This last week mum had been complaining of constipation and abdominal pains. Tues we call 111 for her but the ambulance crew said the pain wasn't that bad and to see the doctor. Wed am dad got taken in as they diagnosed diabetes (blood sugar 36!) and got taken to amu, pm the same ambulance crew took mum in and after an x-ray said constipation and sent home, at the hospital we were taking it in turns to walk from a&e to amu to keep dad updated. Thurs am got ambulance for mum and she was in cardiac arrest for 25 mins but they got her back and took her to hospital. We spent the day in a side room learning now to do dads insulin and blood sugar test and his oncology appointment then they let us see mum in icu. Dad came home that night but we got called in to mum the next morning, they said she must have had a diseased artery to the digestive system and likened it to a heart attack of the digestive system and there was nothing they could do and she died on Friday. We think it was all the stress and worry that she put on herself.

I'm sorry for the ramble put you all seem so kind I thought this would be a good place to try to make some sense of what is happening at the moment

[Cathy]

Hi there,

My goodness what a terrible time your family have been having. I am so so sorry to hear the news about your Mum. That must have been a terrible shock for you all, especially as you were already aware of your Dad's diagnosis and having to cope with the fall out from that.

I'm not sure I can help you make sense of what has happened as sometimes thing just don't make sense and seem so shocking or unfair. What I would say though is you might want to keep a diary of your Mum's treatment as you may feel you want some questions answered as to why she wasn't diagnosed sooner.. You might not feel up to pursuing that at present as I am sure there are other pressing things you need to do but perhaps over the next few days and weeks things might seem clearer. You could talk to PALs at the hospital she was admitted to for advice on how to take forward a complaint if you wanted to.

I hope your Dad is doing ok now. My partner also got diabetes and was on insulin injections for a while. I assume your Dad isn't on treatment yet so I hope when it starts it zaps it!

It's a horrible time of year to lose anyone, let alone coping with a poorly Dad too so my thoughts are with you.

Take care

Cathy xx

[Jwilson]

Janem hi. You are living through a nightmare just now. Half way through reading your post my mind was telling me that your poor mum was not ill but diverting attention from your dad! Then when I got to the end I felt terrible for thinking that! Get as many people on board as you can as this is not going to be easy for you. Get the GP to sort out a Marie Curie or a hospice nurse to be involved in your dad's case. They are just brilliant with pain control and just generally taking charge of things. Fingers crossed that all goes well over the couple of days holiday,

June

[janem]

Thanks to both of you replying. We are already talking about a complaint about one of the paramedics on wed as she was saying there was nothing wrong with my mum and she had just had one to many the night before and people like her block beds! As for my dad he needs to build himself up more before he can have chemo. He has a ct scan on 31st dec to see if there is change then the oncologist on 6th jan to see if he is up to chemo or if the cancer has grown review the options but he has said there is no point going on without mum to my sister.

[cestrian]

Dear Janem

What an absolute senseless nightmare for you and you don't mention any other family who may give you and your Dad some support at this really difficult time for you both. He, of course, has lost his partner of many years and you, in very difficult circumstances your much loved mother. Both of these are major losses that will hurt enormously but you do have each other and although it will not be easy for you it will be down to you to comfort him and show him that he still has you and your deep love as his daughter.

We all have our own mechanisms for coping with major trauma be that our faith or spiritual beliefs so I do pray that whatever your own system is can support you both.

On more practical notes get all the local help you can as there are fabulously experienced and knowledgeable people whose job is to guide you through the course of your illness but can also help put you in touch with bereavement counsellors. You made no mention of medication but if he's not been prescribed Creons or other enzyme capsules make sure he gets onto them as they will help him digest his food, particularly fats, which will help with weight gain. Some people also benefit from steroids if appetite is a problem. If he's in pain then McMillan are great at organising his relief and it may also be worth asking about a nerve separation procedure if he is well enough to undergo this and it is available locally. If nothing else dealing with all this will keep you occupied though I'm sure you'll have plenty else to do that.

Hope I've made sense and not rambled too much - you'll get lots of help on here and do I use Jenni and Dianne the Forum medical professionals and a mine of information and advice. The rest of us, like me, are just patients or carers but they are the real deal!

Love and Peace

Mike x

[cestrian]

cestrian wrote:

> Dear Janem

>

> What an absolute senseless nightmare for you and you don't mention any

> other family who may give you and your Dad some support at this really

> difficult time for you both. He, of course, has lost his partner of many

> years and you, in very difficult circumstances your much loved mother. Both

> of these are major losses that will hurt enormously but you do have each

> other and although it will not be easy for you it will be down to you to

> comfort him and show him that he still has you and your deep love as his

> daughter.

>

> We all have our own mechanisms for coping with major trauma be that our

> faith or spiritual beliefs so I do pray that whatever your own system is

> can support you both.

>

> On more practical notes get all the local help you can as there are

> fabulously experienced and knowledgeable people whose job is to guide you

> through the course of your Dad's illness but can also help put you in touch with

> bereavement counsellors. You made no mention of medication but if he's not

> been prescribed Creons or other enzyme capsules make sure he gets onto them

> as they will help him digest his food, particularly fats, which will help

> with weight gain. Some people also benefit from steroids if appetite is a

> problem. If he's in pain then McMillan are great at organising his relief

> and it may also be worth asking about a nerve separation procedure if he is

> well enough to undergo this and it is available locally. If nothing else

> dealing with all this will keep you occupied though I'm sure you'll have

> plenty else to do that.

>

> Hope I've made sense and not rambled too much - you'll get lots of help on

> here and do I use Jenni and Dianne the Forum medical professionals and a

> mine of information and advice. The rest of us, like me, are just patients

> or carers but they are the real deal!

>

> Love and Peace

>

> Mike x

[EmmaR]

Oh my dear girl and I thought I was having the Christmas from hell having lost my hubby and my kids their dad and the grandkids their Grampa to this awful disease in November , but you must be feeling you are living a nightmare but be strong for your dad Everyone on this forum will be here for you so ask what ever questions you want and ramble away and we will listen take great care of yourself .

And may all our forum members have a Christmas as happy as they can and a peaceful one and think about all the wonderful members we have lost in the last few months and weeks .

Love EmmaR x

[jules 2015]

Hi janem

Can't imagine how you must be feeling right now. I lost my dad to pc last month and an still finding that difficult, especially as its Christmas. Post or rant on the forum as much as you need to, everyone on here are really nice and have a vast amount of experience of this terrible disease. What happened to your Mum seems so wrong, your dad will need all your help to fight this disease.

Sending you lots of strength to help you get through the next few days

Julie x

[janem]

I thought I would let you know how things are now that some time has passed.

Mum's funeral was Monday and it went well if that would be the right phrase. Dad had been staying at my sister's since the day before mum died but came home on Wednesday and has 'meals on wheels' delivered. Dad had a more up to date ct scan done on new years eve and we have the oncologist appointment on the 29th. They said before that if it has not grown since the previous scan then if he is strong enough he will have gemcap to try to shrink the tumour and then they might be able to operate but if it has grown then they will have to evaluate the treatment so fingers crossed. The biggest worry is Dad still isn't eating much and has said that he keeps forgetting to take his creon. As Dad wrote on Mum's flowers 'until we are together again hopefully sooner rather than later' we wonder if it is accidental. Still Tuesday we have the day planned so I will keep him busy, first the local hospice nurse is coming out to see him but then we are going to get Mum's will and start to sort out her affairs which I am not looking forward to.

On a brighter note my daughter should be able to go back to her bungalow on Tuesday after 29 days of her, her partner and 3 boys (5,3 & 4months) crashing at my house!

[littlesister]

So tied up with my own problematic diagnosis problems, not thought to look at anyone elses post, now read yours makes my problems pale into insignificance. I really feel for you - what a nightmare. I hope you can now find time to look after yourself before having to tackle all the fall-out that is inevitable.

Good luck and good wishes

Judi