Mum - Just Diagnosed

[princesspentium]

Hi all.

Mum remains the same sounding remarkably cheerful at the moment.

FIL is still in hospital, but now on main ward. He has a brain infection which is affecting his speech and motor control. They have him on a glucose drip and are trying antibiotics to treat the infection. If that isn't successful they are talking about the possibility if a lumbar puncture!

Who knows what's going to happen? I suspect a nursing home nay be the next move as MIL is 87 and not in a position to care for him.

So we're just soldiering on day to day.

Ruth

[marie souter]

Hi Ruth,

So pleased your mom is soldiering on, from what you told us all originally though she sounds like a fighter and although she also sounding accepting of whats happening the fact that shes soldiering on shows how strong she is ....

What an awful thing to happen to your father in law I do hope the treatment works and he can avoid the nursing home...

A terrible time that you and your husband are having .... both sides with massive causes for concern ... when I was little I always thought my parents would be there forever ... to be able to have mine to the age of your mom and your father in law I would have been so happy .. my poor dad lost his fight to a terminal illness when he was 63 and my mom to pancreatic cancer at 65 .... all my family passes away young ... so am nagging my kids now about smoking and keeping fit and eating healthily ... all the stuff I didn't do ....

I truly wish your family all the best Ruth please keep us informed of how everythings going for you xx

Love and hugz

Marie

xx

[princesspentium]

Just wanted to bring you up to date with Mum's situation.

Mum saw her GP last week as he had called to ask if she wanted to see him to talk about anything related to her diagnosis. She wasn't going to go at first but then decided there were a few things she needed to sort out.

She has been having problems with keeping her morphine patches to stay on for 3 days so now the gp has changed them for something better. She has also told him that she doesn't want to go into hospital when the time comes - but that's for the future & remains to be seen, depending on how her condition develops.

She also saw the palliative care nurse again, who helped mum fill in the forms for claiming Assistance Allowance. As they are 20 miles from Norwich it's costing a lot in petrol to do a 40 mile round trip every time they have to go.

Mum saw the nutritionist last week and she has been given a food list & told to eat more fat! She is still losing weight and has little interest in food or much of an appetite.This so sad as she has always loved food, eating in good restaurants and cooking, all her life.She's also been given some high nutrition drinks in different flavours to take regularly. The nutrionist has said to try to sip some every so often even if she can't manage to drink a whole drink at one go.

From wanting to clear out the house and 'sort' all the clutter she now says it's all too much for her and she just hasn't got the energy to tackle it!

Mum has found this Christmas difficult - she hasn't known what to write in Christmas cards or in the annual letters that accompany many of the cards she sends. Even telling people she knows in the village has been uncomfortable - how do you just drop into the conversation 'By the way I've been diagnosed with inoperable pancreatic cancer and given a year to live'!

My brother and his partner are going to stay for a few days from tomorrow which will ch eer her up. We came away to Derbyshire for the week as planned and have had a quiet week.

We have no plans for New Year's Eve as neither of us are looking forward to this year.

My FIL is still in hospital, he's been there for 3 weeks now. He had a full body scan last week but they couldn't see anything untoward, his main organs are all fine. However his speech and gross motor control are still being affected by the brain infection which has only partially responded to antibiotics.

Not a lot more to say - I'm surviving by pushing the thoughts about mum and what the future holds, to the back of my mind. But every so often it hits me and I get very down and weepy. My husband is also feeling down about his dad's situation given that his mum at 87 won't be able to look after dad when he finally comes out of hospital.

Ruth

[marie souter]

Dear Ruth,

What a terrible time you and your husband are having, you must be out of your minds with worry.

Is assistance allowance the same as DLA? Did the nurse fill this is under the special rules? It puts your mom on top rate of care and mobility and works out at quite a substantial amount of money I think moms was over £200 a week...We got a doctors letter and posted it in, this advises that your mom is terminally ill and negates the need for any further info being requited from docs/hospital.

There is nothing I can say that will make things any better other than you will find the strength to deal with all thats in front of you, I don;t know where it comes from but you do find it, the horrible thing about this damned disease is how abslutely exhausted your mom is going to feel and all her get up and go and got up and gone..

I'm sure tho with your brother and his partner going that should go a long way in giving your mom some good company something else to focus on.

mY thoughts are with you

love and hugz

marie

xx

[princesspentium]

Well things are much the same with mum, I talked to her last Sunday & she's still experiencing some pain although the new patches seem to be helping.

We actually got on to the subject of funerals and she said she definitely didn't want a Christian service but would prefer a Humanist. She's also like a 'green' burial she thinks although she admitted when she was younger she was always worried about being buried alive and the same with a cremation, being burnt alive! Things feel like they are in limbo at the moment - it seems you never know with this disease whether things will change quickly or slowly.

My 93 year old FIL is being discharged after a month in hospital. They are arranging to deliver a hospital bed & hoist this week and a team of 2 carers, 4 times a day to help my 88 year old MIL look after him. My husband is very depressed about the whole situation about his dad and my mum and neither of us had a 'good' Christmas. We don't feel we have anything to celebrate tonight as we know the New Year will be a tough one for us both.

Will probably have an early night - we never really celebrate at NY Eve - I've given up alcohol too since last Sunday - am doing a Dryathlon to raise money for cancer research - no alcohol for January!

Just wanted to say many thanks for your kind words and advice since Mum was diagnosed and I expect I will be on here much more next year as things change.

May the New Year bring you everything you hope for.

Ruth

[marie souter]

Hi Ruth,

I'm pleased your mom's pain level has decreased ... I was interested in teh green burial u mentioned I didnt even know these existed ... I used to be the same as your mom.. but having seen death several times now I dont have that worry ... I just figure when its my turn just cremate me as I have this whole overcrowding thing .. but each to their own I guess..its so nice your mom can talk to you about these things....it is an unpredicatable disease and there is no way of determining how things will go..some people take a steady decline..some people go the rollercoaster (my mom)...and I remember the limbo feeling very well...but I would try to shake it away and remember my mom is here now and I would just hold onto that ... I knew there would be a time I would be without her and my time for grieving would be then .. whilst she was alive I would be the height and sole of fun for her...so many people gave her the sad eyes and she hated it ... she would be cross with me if I told a stranger she was terminally ill as people looked at her differently...so I would just try to make her enviroment as cancer free as possible and would only talk about it when she wanted to broach the subject...I remember the first few mths after her diagnosis 'cancer' was the only topic of conversation from guests and it thoroughly depressed her as she was just trying to put it out of her mind and just get on with life, when people would talk to me about timescales and how much they would miss her .. I would say .. she's still here jsut come see her more .. she'll go when its her time ...

I am so pleased yuor MIL is getting all the help from carers she sounds like shes going to need it ... I can;t imagine any of your christmas's or new year was good .. mine was horrible .. choking down my dinner looking up at my sis sitting where my mom should be .. You are right you have a tough year ahead of you ... please dont let it swallow you up though .. you sound like you are made of strong stuff (and I have a feeling you egt that from your mom, she sounds like a tough cookie too)...you will be able to deal with things as and when they come..you do find the strength..I hope your husband is bearing up though ...

2012 I spent some time in ICU and almost died and was ill for 8 mths of that year .. my new years msg to bringing in 2013 was about spending 8 mths of 2012 ill and 2013 'had to be' better ... who knew I would spend 8 mths of 2013 nursing my mom with pancreatic cancer through to the end ... when I looked back on my facebook review for the year I was stunned at what I had put that for that New years msg ... so I decided this year no new years msg .. just gonna take each day as it comes like i did with mom

I do hope the new year brings you strength and courage and I wish you well on your run for charity (is there a link to sponsor you?)

love and hugz

Marie

xx

[Vance_7]

Thank for sharing information.

[princesspentium]

Just wanted to share that my 93 year old father in law has died this afternoon. He had just spent a month in hospital with a brain infection and came home last Friday. However he has been unable to eat and has been 'out of it' for the last few days. He died in his sleep & in his own home, so that's a blessing.

Unfortunately, my mum, is not at all well. She has had to start taking liquid morphine, to try to cope with the pain but it seems it's not helping very much. She actually said when I told her about FIL, 'I envy him' I'm feeling so helpless at the moment.

Ruth

[J_T]

Ruth, so sorry to hear about your FIL, my condolences.

It must be so hard to hear your mum say things like that but I know my husband felt like that too. I think its so hard for them to articulate just how ill they are feeling and of course we, the carers have no idea. I'm hoping you can get your mum's pain under control and she can start to feel a bit better and more comfortable. Just be there for her and support her, its all you can do and I know you will.

Much love

Julia x

[belgrade]

Hi Ruth,

So sorry to hear about your FiL and hoping your Mum's pain can be better managed. Thinking of you all.

Hilary x

[princesspentium]

Spoke to mum yesterday and she's going through a tough time. Now on double morphine patches and liquid morphine but this has caused impacted faeces.

She is taking a stool loosening medication but things got so bad that she spoke to a locum at her gp practice who agreed he would prescribe a suppository. Unfortunately she also has haemorrhoids and when she used the suppository she was in agony - she described it as feeling as though she had had acid inserted into her rear!

She was seeing the palliative care nurse so maybe there's a better answer to this agonising problem.

She is very low and gloomy at the moment and said 'If there was some hope it would be bearable, but to know there's none makes it so hard!' I didn't know what to say, I just feel impotent. My husband and I have booked a cottage not far from Mum's and are going up to stay for a week from Feb 7th, so we can be with her, that's all I can do.

Ruth

[princesspentium]

On going situation - Mum is struggling to eat. I rang her on Sunday morning at 10am and she was in bed. She got up and tried to eat a piece of toast but described the feeling as 'my stomach felt all trembly and shaky' She had to go back to bed. The same thing had happened the night before when she tried to eat some supper. She isn't interested in food at all as trying to eat it makes her feel so ill. I believe she has some nutrient drinks which she is supposed to drink - although when she got them they were all one flavour - strawberry, which she says tastes awful and artificial!

My stepfather has suggested going back to the gp but mum says that 'they said there's nothing to be done, so what's the point?'

I'm at a loss to know what to suggest. As mum doesn't like the palliative care nurse - who apparently talks about 'acceptance' & is very 'twee' talking in hushed tones etc - I don't know where we go from here. Going up to Norfolk on Friday this week so will try to get mum to bring her oncologist appointment forward (it's Feb 29th) if she can.

Any advice welcome

Ruth

[cestrian]

Hi Ruth

With your Mum's pain probably preventing proper sleep and her lack of appetite it will be far too easy for her to suffer from depression. I know that before my pain relief op and chemo I just did not feel like eating and was losing weight at an alarming rate. Luckily I had a stone or two to spare!! Not sure about your Mum's physique but if she was already slightly built then it is more vital to stop any weight loss. I know how she feels about the drinks, I had a cupboard full of gruesome chocolate flavoured ones that I just couldn't face though I did force myself to drink them slowly during the day. Couldn't stand the fruit flavoured ones though!! I did find Complan (other brands available) to be both nutritious and quite easy to consume so that may be an idea. It will be so difficult for your step-father to cope with the demands of feeding up someone who doesn't want to eat and he really does need all the support that can be mustered. Jenni and Dianne are a mine of assistance but getting local help is also important and I don't think it's sensible to give up on her GP as they are the gatekeepers to so many services. If one lynch pin to her care can be established that will make things so much easier though I know this varies enormously across the country.

I hope your own visit may encourage your Mum and cheer up her spirits. As a patient without many problems just yet I'm probably not qualified to comment on "acceptance". I did accept my diagnosis and prognosis but have just carried on as best as I can. As I've said on the forum many times it seems far harder for carers than for patients in many ways as you see a loved one in despair and often in pain and discomfort and can do little to help. Believe me your love and support means everything!

Love and Peace

Mike

[PCUK Nurse Jeni]

Hi Ruth,

So sorry to hear about this story with your mum. However, in fact, there are things which can be done. For example, she can have appetite stimulants such as steroids (unless she is daibetic), which will make her hungry. She can also have several types of tasteless powders which can be added to food to increase calories. Is she on anything to protect her stomach, such as omeprazole or lansoprazole? If not, then she can have these also to settle her tummy, and also, maybe some anti-sickness if she is not taking any. There are bound to be some changes which can be made to allow her to eat and enjoy eating. Is she taking pancreatic enzymes? If not, then she should be also.

It does sound like a very good idea to get the oncology appointment brought forward. Try and do this as soon as possible. In terms of the palliative nurse, apart from talking about "acceptance", is she also addressing these symptoms, as if not, then this would be part of her remit, and perhaps this needs addressing? Do email us at support@pancreaticcancer.org.uk should you need further information.

Kind regards,

Jeni, Support Team.

[J_T]

princesspentium wrote:

>

> I'm at a loss to know what to suggest. As mum doesn't like the palliative

> care nurse - who apparently talks about 'acceptance' & is very 'twee'

> talking in hushed tones etc - I don't know where we go from here. Going up

> to Norfolk on Friday this week so will try to get mum to bring her

> oncologist appointment forward (it's Feb 29th) if she can.

>

> Any advice welcome

>

> Ruth

Our Mac nurse was brilliant but she was not exactly twee, but spoke in quite reverent tones which isn't us at all, but we put that to one side because she was so caring and good to Ray. We got her opposite number one day because she was off and whilst she was more down to earth, she didn't listen when Ray said he wanted to talk about stuff once the district nurses had left, on and on she went. Not what you'd expect from a Mac nurse. Anyway what I'm saying in a long winded way is there may be another Mac nurse on the team that your mum would get on better with. Why not ask and see how you go?

Julia x

Edited February 4, 2014 by J_T

[nikkis]

Hi Ruth,

Yep that "twee nurse" gets round the country and has visited us to! Paul tends to ask her every time he sees her what she actually does. I think where he finds her difficult to talk to, he wants her to do something practical instead, and in fairness she has sorted out a few things for us such as a disabled parking badge, so might be worth your Mum finding out what she can offer! Talking about acceptance is telling your Mum how she should feel, and no one has the right to do that.

I have found our local pharmacist was very good at suggesting supplements and organising for the GP to prescribe the flavours we wanted, so might be worth a try.

I am sure she will feel better for seeing you at the weekend,

Nikki

[EmmaR]

Hi Ruth ,

I can

identify with every thing you are saying , my Jon just could not eat anything towards the end even though he would say there was nothing he would like more than a good meal , protein drinks they some how prescribe them by the shed load !! In the end I would say why not just prescribe them in small amounts say two of each flavour but no it was a boxes of 12 no wonder the NHS is in dire straits Jon only liked the vanilla or neutral flavours after he passed away we tried to return them along with all the other unused meditation and boy was there a lot while they were trying to adjust his doses they said they couldn't reuse them only dispose of them them what a waste !! And yes they do talk in hushed tones when asking where would you like to be at the end won't tell you what Jon said , but I know they mean well , I must admit our GP just told him eat whatever you fell you can and like , and one lovely consultant who was treating him when he went in with a PE told me it was one of the meanest cancer,s and that weekend there was a big Rugby match on and he said why not have a few beers brought in if you feel like them but no Jon didn't but just wished he could ,but I did think well the Doc is human after all but he also new there was not much else he could do for Jon ..oh Ruth I am rambling hope I have not upset you but I think you just have to support you mum and love her and know you are doing your best for her which I am sure she knows even if you she cannot please you by eating something .

Take care

EmmaR x

[PCUK Nurse Jeni]

I am curious - what is "twee"?

Not a word I am familiar with!

Jeni.

[nikkis]

Ah Jeni.

You will have worked with "twee nurse" before! A bit nicey, nicey. Probably a bit patronising, and says a lot of "ahhhs", whilst making overly sympathetic faces. Just looked up a definition which said "sweet , almost to the point of being sickeningly so".

[EmmaR]

Nikkis

That's a spot on description, my mother would often say of a woman she's a bit to twee for my liking !

[PCUK Nurse Jeni]

Aah thanks guys!

Nikki - don't think I have actually!!! Which is good!

I don't think any adult needs to be patronised, let alone those suffering horribly from PC.

Jeni.

[princesspentium]

Hi everyone sorry I haven't responded for a while but I am very grateful for everyone's replies especially regarding Mum's difficulty in eating. I'm going to cut & paste your suggestions and email them to my stepfather.

Unfortunately we had some more bad news a couple of weeks ago, this time about my brother's partner Gill, who has been having tests due to severe anaemia. She was diagnosed with kidney cancer and although this is devastating; the saving grace is that it's only in one kidney. She is going in to hospital to have it removed next week and they will then do a biopsy and make a further prognosis.

So we're not having a very good New Year so far.

It was lovely seeing Mum when we went up to Norfolk and she cooked us a lovely meal & even managed to eat some! We also went to a Roman exhibition at Norwich Castle. We had some lunch in the Rotunda café and Mum managed some of her liquid meal from a carton! However she gets very tired these days and left after lunch.

She is using a wheelchair as she has problems with her knees, both of which have been replaced but, it seems she has written to the consultant and told him to take her off the list for an operation now as she says there's no point.

I spoke to her this morning and she saw the oncologist last Friday (she didn't change the appointment.) She had a very rough week last week, suffering acute pain from constipation again and although she was taking a stool softener, she said she still cried with the pain of it.

The oncologist (a different chap from the first visit) said that he would write to Mum's GP about the matter as he was sure there was something else they could prescribe. Mum had managed to get to the GP, but felt ill whilst waiting there and the GP has now told her she's too weak to go to the surgery and to call him out if she needs to.

Mum didn't talk much about what else the oncologist said apart from saying 'Oh yes & we talked about where I'm going to die!' She told him she will not go into hospital and would rather be at home until the end (although she doesn't want to have a bed downstairs, she experienced that when she had a knee replacement 15 years ago.)

He said it was good to know what she wanted as it would make it easier when planning her nursing care.

Mum hasn't ruled out going into a hospice (as her sister did - who had stomach cancer & died at 62)but as I said to her this morning it's going to depend how she's feeling in the future. She is being very stoic and soldiering on. I didn't tell her that I sent for the Humanist book about funerals without God, which I'm going to send to my stepdad so that when the time is right they can discuss what she wants.

Sorry for rambling but my thoughts are all over the place - I'm not sleeping well and the only good thing is at least I don't have to get up for work in the mornings!

We've also had to be supportive to a friend who's relationship has broken down over the weekend, when her partner told her to leave, after she came in drunk & late again - it was once too often! My husband has been very good taking her & her things to another friend's house to stay but was very firm but kind, when he said that she couldn't stay with us!

Ruth

[Didge]

Well sometimes it never rains but it pours! I do hope your brother's partner gets good news about the kidney. If it's contained within it there is a very high hope of cure so focus on that. Well done to your husband for being firm with the friend too. Am thinking of you in all of this!

Didge x

[princesspentium]

Haven't posted for a while as we've been in China for 2.5 weeks.

Spoke to mum on Sunday and she's very depressed. Still suffering agonising constipation even though she's taking a variety of medication to help with it. She described having to wear surgical gloves and manually remove faeces from herself. This was agony as she has inflamed piles to contend with! She had a nurse come to give her an enema but she screamed with pain and they had to stop.

She's gone down to 7st 10lbs (she was 10st) as she has no interest in food and has to force herself to eat even half a banana& is a struggle to get down. She is very depressed. She keeps saying she just wishes she could go to sleep and not wake up again. She's finding it increasingly difficult to motivate herself to get up in the morning too.

Apparently whilst we were away she called the doctor out as she was in so much pain (she is still on morphine patches and liquid morphine) he said there's no more he can do apart from up the morphine dose - which she doesn't want to do as she doesn't want to lose her cognitive abilities. So we're at stalemate.

Mum knows the pain would be easier if she increased the morphine but she's choosing to stay alert and suffer!

We're going up to Norfolk again next Tuesday for a few days and will see her then. She doesn't want any visitors except family; as she says 'who would want to see this skinny wrinkled white haired old woman anyway?!'

I've tried to talk to her about funerals and what she wants & she alternates between saying 'I've decided I'm not going to die - I'm not ready - so there's no point in talking about it!' to I don't want to be cremated or buried - I've always worried about being burnt or buried alive!' She also said she doesn't want any kind of 'wake' after the funeral ( if she has one) I said - being slightly belligerent - well you wouldn't know what we did - you wouldn't be here! And anyway the funeral isn't for you, it's for the grieving relatives and friends! So we just go round and round and don't make any decisions.

As usual I feel totally impotent. Can't make any plans for the future - holidays etc as we just don't know when things are going to deteriorate. We have one holiday in South Africa booked for September 1st and are selfishly hoping that we can go but if things are bad well..... we will have to cancel it.

Ruth

[Didge]

Hi Ruth

I'm sorry your mum is suffering so much. I suppose the opiates don't help the constipation. I don't think you need to make any funeral decisions which are binding. As you have said, it will be up to you relatives in the end and how you want to remember her. I would just take note if she does give any preferences but don't worry too much about it. I think the 'wake' is very important as it give a chance for relatives to meet and do the actual remembering! I also know how hard it is with planning. I have not booked any leave at all as my man has constantly been hospitalised with infections but we are going to try to book some time away soon - and have to cancel if we have to. That's all you can do really!

Didge x