coming to terms with it all

[Higgsy71]

Hi

My dad passed away a week today. He was diagnosed with Ca Pancreas 3 weeks ago and we were actually sat with the Oncologist on the Friday before.

Dad had not been right for about 9 months - nothing specific - feeling full, upper abdominal pain, etc. Back and forth to the GP. 8 weeks ago he went tothe GP and GP had done blood tests - all normal - but I noticed his abdomen was distended (I'm a nurse in A&E) I spoke to Dr's I work with and they saw him and admitted him. He was constipated - given enemas - didn't work - had CT scan which showed 'something' on the pancreas, although they never told us. Communication has been so poor. 3 Weeks ago a Dr saw my dad and said to him ' with the type of pancreatic cancer that you've got' - my dad was gobsmacked - he was on his own in a 6 bedder and every other patient heard. The Dr denied it. As you can imagine our world was turned upside down. They also told him that there was nothing they could do. The past 3 weeks have probably been the hardest. Dad died on 8th August and we were with him - it has all been so quick. In one way I'm glad for him because he just wanted to go, he didn't want to suffer but for us 36hrs after talking to an Oncologist with him asking to go home has been hard. It's been telling people because he was such a popular guy - people can't believe it, especially when most only saw him a few weeks ago. The thing is he wasn't jaundiced, not even pale yellow. So apart from completely general symptoms we had no clue what lay ahead. I know I've rambled but I feel so strongly that we need to highlight this type of cancer and get GP's to sit up and take notice. My dad was a fit guy, he never went to the GP for anything other than his asthma, or his knees. Surely GP should have thought something.

[Nardobd]

So sorry to hear about your Dad.

It is possible to have jaundice without going yellow - my hubby's was only picked up on blood tests. Like your Dad, my hubby had very general symptoms and it is only because we have a fantastic GP that investigations were even contemplated.

My condolences on your loss and do let us know how you're getting on from time to time.

Nicki x

[wendyh]

I agree with Higgsy71. My husband repeatedly visited the GP who just treated him for diabetes. He was only 50 and fit and otherwise healthy. Not overweight - so not life style caused diabetes. Whenever Barry went in to complain of backpain, diarrhoea and loss of weight, he was just sent away wih different tablets for the diabetes or told to percevere with the treatment. One day when he broke down because he felt so ill the GP said he was depressed and offered anti-depressants. It was only when he saw a locum that it was suggested he came off the diabetes medication and see what happens. He only had a blood test because the practice nurse thought he looked a bit yellow. On the result of the bloodtest the GP receptionist rang and said the original GP wanted to see Barry in 10 days time, to which we said no, we will need to see someone today and saw a different locum. She admited him straight to hospital. The outcome most probably wouldn't have changed but perhaps if the GP had been more aware of pancreatic cancer he may have at least physically examined Barry and he may have had the chance of surgery and a little longer with us all. The locum could feel the tumour. Why didn't the GP examine him. I can only hope that he will have this case in his mind in the future.

It does seem to be pot luck that you get a GP that makes futher investigations rather then stick to that they know. Luckily for me the locum has now joined the practice, so I now have a GP I can trust.

It has been 14 weeks since I lost Barry after just 4 months battling. I have returned to work today but the future still seems very bleak and murky. Everyone tells me it is just time that will help. At the moment I can only hope that is true.

I suppose I can only pass that advice on - take one day at a time. My thoughts are with you and you family.

Wendy x

[lynbo]

Hi Wendy

I totally agree with you, I lost my husband on 23rd Aug, he was only diagnosed 7 weeks prior to him passing away, BUT he was going to the GP and A&E with pain in his tummy, bloatedness, feeling sick etc for 10 WEEKS!!

Not one of the 3 different GP examined him, and A&E gave him temazapam to sleep and tramadol for pain?

39, fit and healthy, never at the doctors, continually persisting pain and getting worse?

I have ALL the notes from GP, and on the 3 reports from A&E it clearly says, pain score 4/5 bloated, nausea, constipated, abdo pain in upper quadrant???

Even when they done an ultrasound and found "lesions on the liver" the GP said he had to have a CT scan and "not to worry" ???????

I am SO MAD.

Like you say about Barry, earlier diagnosis can mean longer with us, better pain relief, and only what they rightfully deserve.

sorry to rant

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[wendyh]

Hi Lynn

It does make you so mad. But I have to say I do get special treatment at my GPs now. I only have to say my name and I get an appointment the same day! Pity they couldn't have treated Barry like that. So many people have told me not to blame anyone and I suppose I don't really, it is just ignorance.

I am a couple of months on from you Lynn, I lost Barry on 26th June. How are you coping, are you getting any support? I know that I was still only just coming to terms with diagnosis when he passed. He said he couldn't come to terms with it until I did. So I tried.

People keep telling me it is early days and "you're strong" or "you're a coper". How do they know that when I don't. I have to carry on for the children, I have to get up every morning and "get on". There is so much paper work!! I just didn't realise.

Let me know how you are going. You can say anything to me. I am still suffering with the anger and the self-pity, which I hate the most.

Take care. X

[gemma]

My husband was quite well up until April of this year, then he started being sick he could not keep even a cup of tea down. This carried on for a few days, me thinking he just had a tummy bug, but I sent for the doctor and because he was a diabetic. he sent him to hospital they x-rayed him, then came back and said they would like to do a ct scan, and then a camera down the throat the third day they sat us down and told us the bad news the tumour had already spread to the liver and there was nothing they could do, they fitted a stent the second week, he came home as he did'nt want to stay in hospital. The fourth week I had a consultation with the surgeon and I ask how long my husband had, he replied straight away two weeks. my husband lived just over and died june 5th. He had no pain but died so bravely.

I still cannot believe our quick this cancer can kill and not know you have it. Even the diabetic check ups with blood tests he use to have did not show it up.

There must be some way to make people aware of this illness.

[Nardobd]

Hi Gemma and my sincere condolences on the loss of your husband.

One of the major research initiatives at the moment is into earlier diagnosis - it's sorely needed! The difficulty is that many of the early symptoms of pancreatic cancer are so vague and emulate many different minor diseases that they are almost impossible to pin down. The only blood test (that I know of) measures a protein in the blood but that protein isn't cancer-specific and general inflamation in the area of the pancreas can cause it to rise.

The only way to improve both diagnosis and survival rates is to carry out research. Attracting researchers to this difficult area of work relies on (a) money and (b) publicity, which is the reason for the Pancreatic Cancer Awareness Week which starts 22 November. If you'd like to tell your story and help to increase publicity please do read the Awareness Week section on the forum which gives contact details for PCUK who can help to arrange interviews etc.

Of course, after such a profound and sudden loss you may not feel up to that which would be completely understandable. Please take care of yourself and let us know how you're doing from time to time.

My thoughts are with you.

Nicki xx

[lynbo]

Hi Wendy,

I am still coming to terms with it all, I had to ask the doctor what happened on the day he passed, as that was the worst thing ever, and I beat myselof up about it daily.

It would have been our 2nd wedding anniversary yesterday 25th Oct. I miss him so much, we have no children and I am the only child, so I am very lonely.

Our story was in CHAT magazine on 21st Oct page 34, still in shops till this thurs i think?

I still cannot believe that he was fit and healthy, never at the docs, then kept going and going with this pain, and they gave him tramadol, and buscapan (for IBS) ???

Some days I am not mad, just terribly sad, other days I am so angry.

I worry, did I do enough, did I do the right thing, is he ok now? all questions unanswered.

I have bereavement counselling through the church, as Teesside Hospice is 10 week wait, and Cruse bereavement 12 weeks??? I also have to see a professional about my panic attacks, and anxiety, which I have never had before now.

Paperwork - I agree with you there, its all I do, the postman is a nice man, we are on first name terms now!

Keep in touch xxxxxxxxxxxxxxx

[wendyh]

Hi Lynn

It is a very lonely time. I have my two sons but their live continues as normal, which I obviously want. But at least I do have them to get up for the morning.

I have just tonight been to a bereavement meeting at the local Hospice. I have to say that it really helped to talk to other women going through the same pain. For each of the others the illness was short and shocking. Sometimes you feel like you are the only one but it helps to know you are not.

I know all about beating yourself up. I do literally snack myself on the forehead to stopy the thoughts about the last few weeks and days. Did I do the right thing by him. He had an infection in the bile duct where he had a stent fitted in February, We knew that if the doctors couldn't unblock it then it was only a matter of time. After he woke from the procedure he asked me if it had been successful and I just tried to bluff it and change the subject. But he persisted and asked me to tell the truth and then asked how long he had. I hate knowing that he knew he only had a few hours left. I keep asking myself it I should have lied to him and let him go off to sleep thinking he would wake up. Instead we had to have him sedated as he was so worked up. He said he wanted to write something - but never did. What would that had been? I wish I knew. But at the time I thought it best he was asleep and not aware of the suffering - not only his but of those around him. But i cant't keep on asking the same questions again and again. Cant I?

[wendyh]

Oops - Posted before i had finished my pitiful rant!

Publicity is what we need. Did they contact you direct or did you get through to them?

Purple week is coming up later this month and I am going to try to get the local newspaper to run something on this terrible desease.

I am just getting to the end of the paper work I think. There is an ever increasing pile on my desk and I have the best intentions of sorting it into folders to put away but just don't get around to it. I also have to write lists of what I need to do still - silly things like clean the fish tank (was Barry's job). The toilet handle came off last week - I went out and bought a new one with full intention of proving I could do it myself. Alas the handle is still broken - but I have a plumber friend of a friend coming at the weekend! Lucky we have two loos. Just little things that Barry would have got straight onto and sorted out - they all seem to be big insurmountable problems.

I have learnt to take any company I am offered lately. When I spend days on my own I do just get deeper and deeper into depression and end up spending whole days in bed. I have a friend who insists on coming round once a week even if I try to make excuses - because there are times when you just don't want to see anyone or speak to anyone. then there are days when you crave company but feel too stupid, guilty or needy to ask for it.

I have just one brother who lives in germany - and his wife is currently ill with bone cancer - so I can't ask too much of him. There is Barry's Dad but at 84 he needs more support than me - he has lost his baby hasn't he. I haven't seen or heard from Barry's brother since the funeral. He just can't cope with it and doesn't know what to say to me. The problem is, the longer he leaves it the worse it will feel for him. I have to try to understand how others are feeling - but that is not easy.

I hope you get some counselling soon Lynn. You just have to take one day at a time and not worry about what other people think. You are the only one that knows what you are feeling and how you are going to live with this. I had one family member saying I should be careful I don't turn the living room into a shrine (I have a few photos around) and it made me feel uncomfortable. I asked my sons and they said I should do what I wanted and not listen anyone else. I just don't know how I am supposed to behave.

Well I think that is enough venting for now.

I am thinking of you Lynn. Take care. xx

[lynbo]

Hi There

Thanks for the reply Wendy, I have all Andy's notes here and last night me and his niece went through them, it was terrible, basically for the whole 10 weeks he was going to the docs and A&E its there in black and white "previously fir and healthy" " severe abdo pain, bloating unable to eat, waking in the night" and STILL they didnt do a thing.

This went on from May till June when I got him blue lighted into hospital.

Also I have read now that after the stent, which I was told went well? it wasnt in far enough to do any good? but as he was discharged with no scan, how were they meant to know?

So, I torment myself thinking about all this.

After 15 happy years together I am finding it hard to remember his ways, voice, habits, as all I can think of is the 7 weeks he was poorly for?

PURPLE WEEK

I have got Starbucks involved - they are donating some coffee and a hamper, and me and my niece are going to do a few coffee mornings at the local newspaper, this way there will be publicity for pancreatic cancer and all money raised will go to PCUK.

We need to raise awareness.

Its just so tragic.

My husbands mam hasnt rang, called, sent flowers anything, she has just gone on about herself, and the whole family have lost all patience with her.

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[Nardobd]

Hi Lyn and I hope I'm not "butting in" but I've been reading your posts and just wanted to let you know that you and Wendy are both in my thoughts.

In time the memory of the last seven weeks of Andy's life will become less painful and you'll be able to think of the good times again - I know that seems difficult to believe right now but it's all part of the grieving process.

I think it's great that you're doing something for 'purple week' and raising awareness, particularly when you're going through all this.

Love

Nicki x

[lynbo]

Hi Nikki

You are not butting in, I welcome any help from anyone on here.

I have had a terrible night, I finally gave in and decided to start the anti depressants the doc prescribed 4 weeks ago, they are called venlafaxine, 75mg.

OMG - I had 1, and had heart palpitations, fidgity, just generally feeling rubbish, I coulsnt sleep, and felt my jaw was going to lock.

I was pacing the floor at 3am, then I had a temazapam, as I couldnt bare it anymore.

Today I feel like ive been up drinking all night - tired, sluggish, and sickly, with jaw ache still?

I am so fed up

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[wendyh]

I do feel for you Lyn. I started on anti-depressants during Barry's illness - for my anxiety. I saw the Dr yesterday who said she didn't want me to reduce the dosage until after the new year. Luckily I have got on OK with them. Perhaps you should ask for something different if they don't help. But they do take a while to get into the system - can be as long as 2 weeks before you feel any benefit. Can you speak to your dr by telephone tomorrow for some advice?

I have a note book and write to Barry every night about my day. It usually ends up with a lot of dribble with me in tears, and my writing is terrible - but then it is usually after I have taken my sleeping tablet. I think it helps to get it out of my system and I can write all things I can't say to anyone else. I know he would understand my thoughts. Some nights I can't write much more that his name, over and over. I miss saying his name. I know what you mean about his voice, etc. I spend ages just thinking about him. His hands, the shape of his nose, etc. Silly things I know but I need to remember. I do keep thinking what he would say at things that are happening. I certainly know what he would say about his brother.

I know what you mean about his Mam. My Father-in-law has been very wrapped up in himself. That is why I took him to the bereavement meeting so he could hear other peoples stories and get an understanding that everyone is different. He lost his Wife 15 years ago and keeps comparing that to my loss. But the difference is they were married for almost 50 years, their children were settled and they had grandchildred. i am not saying my loss is more than his - just different. Everyone's loss is different - no-one can understand exactly what each of us have to face on a daily basis.

Just know you are not alone Lyn. Take care x

[lynbo]

Hi there

Just read your post and I can totally relate to it. My friend lost her dad a few weeks after I lost Andy, and I know her pain is terrible, and she is in a bad way, but she has 2 kids and a husband, where we had no kids, and I am the only child, Andy and I spent all our time together, so even just been in the house is so heartbreaking.

Like you say, everyone's loss is different.

I too have a diary that I write in on a night - and like you, usually after my sleeping tablet, so its all a bit scruffy and mumble jumble, but Andy knows what I mean and feel.

How old was Barry?

I have rang docs, she is phoning me tomorrow, so I will explain then, feel a bit daft as I was given the tablets 4 weeks ago, didnt take them, then didnt tell her, so Saturday was my first tablet, and what a horrible experience.

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[Nardobd]

Hi Wendy and Lyn

Hopefully, Lyn, you're feeling a little less fed up and the doctor has spoken to you and changed the tablets to something that suits you better. With these types of medications it's a case of trial and error in my experience but once you find the right thing for you it really does help.

Wendy is so right, everyone grieves in their own way. Its such a difficult process and no one can tell how long you will need to find a new 'normal' - no one ever gets back to the 'normal' prior to the illness.

My thoughts and prayers are with you and if there's anything we can do on the board please don't hesitate to ask.

Love

Nicki xx

[wendyh]

Hi Lyn. I hope you have been able to speak to the doctor and either been reassured or changed your medication to something that suits you better. Don't feel daft. This is all new to us and as Nicki had said life will never be the same again. I seem to be forever saying sorry to people for the way I am. I have been told that I have to start a new life now but I just don't want to. I want my old life back. I want Barry back. I know it can't happen but that doesn't stop me wishing.

Barry was 51 in February this year. I know what you mean about spending lots of time with your Andy. Barry gave up work 5 years ago to write a novel, with my support. It was his dream. It was only supposed to be a year but we were just managing on my money so that was OK. Although I think others thought it a bit wierd. He did most of the housework so that I could work more hours. I worked from home too so we were together 24/7. And it worked. We had our little tiffs, of course, and sometimes we needed a few hours apart but on the whole it was great. I didn't realise how great it was until now. How lucky we were. I never said no to Barry about anything and I am so glad.

I really miss the fact that no-one knows what I am doing or where I am. Like if I go shopping, or go and have a lie down, nobody knows or cares. ( I seem to spend a lot of time in my bed now - at all hours of the day) My work office is based in the New Forest and I always had to ring Barry to let him know I was on my way home. Now there is no-one to ring. A friend offered to me to text her to let her know what I am doing or where I am but that just feels a bit too needy. I have to get used to this.

Barry was an avid collector and his stuff is everywhere in the house. Sometimes I find that comforting and other times heartbreaking. It all depends on the day. His family have offered to come and help clear his stuff but I don't want anything to go - not yet. I only unpacked his hospital bag last weekend, I lost him in June. I couldn't change the sheets on the bed for about 10 weeks. His coats are still hanging on the pegs and still smell of him. That breaks my heart too, but I always stop for a sniff. Oh dear I am getting a bit down now. Best stop or I will be starting you off too. Let me know how you are. I will be thinking of you.

Nicki, that you for your thoughts. Hope all is going as well as it can be with you.

Wendy x

[PCUK Nurse Jeni]

Hi Lynn,

I have been reading your posts. So sorry to hear about all that you are going through.

I was concerned when you said about what happened when you took the venlafaxine. I have had a look in my trusty drug book ( I am a nurse), and have found all of the side effects you were experiencing listed as side effects -insomnia, palpitations, agitation, anxiety and hypertonia (also called muscle spasm, which can include the jaw locking feeling).

Did you manage to speak to your GP? I think you will find that alot of people who get tablets such as this, often take a while before they will actually take them. I wouldn't think it is unusual for a GP to hear these stories time after time.

I hope you manage to settle down, and feel back to yourself soon. It does take time, and that is the luxury you can give yourself.

Best wishes,

Jeni.