Hit by a double whammy and struggling

[john27]

Hi all,

I really need to get this out as I think I'm going mad. My family has been hit by cancer twice recently. My younger sister Jo was diagnosed with breast cancer just around Christmas time and has since had a mastectomy and reconstruction, she is now into a pretty heavy chemo course but bearing up well so far and the prognosis is hopeful. As if that wasn't enough now Mum has been diagnosed with PC. She is so important to us I can't imagine life without her there, when I do, I burst into tears and my heart really hurts..

It all started with a suspected gallstone, if only, I dont live near my mum so the first I heard was a phone call from Jo saying Mum was in and had a stone removed. Ok I thought 'not too bad, not really serious' but immediately set off to see her. However Jo phoned again, in tears, saying that a registrar had been round to tell Mum they had found a tumour in her pancreas. That has to be the hardest drive of my life, Mum was discharged on the thursday (day before the royal wedding) and told to come back the following tuesday for a biopsy (which I now know to be absolute rubbish as the hospital doesn't perform them and she hadn't had a MDT meeting. So we went in on the tuesday after days of pure torture to be told that a biopsy wasn't going to happen by a junior registrar (oncologist still on holiday) at this point Mum got panicky and wanted to leave so Jo took her outside but I had to get more information. I was told that Mum had a 4.8 x 2.4 x 2 tumour in her pancreas that was irresectable but from the scan there were no indications anywhere else. I still had hope. We had to wait for all the bank holidays to be over so people would come back to work and the MDT meeting where my Mum would be discussed. Two days after this we had a consultation with the surgeon involved, as we went in Mum kind of freaked out and said she didn't want to know so the lovely Upper GI nurse took her outside. The surgeon then really laid it on the line to my sister and me, that it was almost definately adenocarcinoma, had spread to the bowel and blood vessels and that chemo might suppress it for 6-12 months. He also informed us that Mum had never had a gallstone and that in fact he had put a stent in her bile duct. We were (are) devastated by this and angry at the shabby communications. Walking out of there and keeping it together in front of Mum was incredibly hard.

So now we are waiting for the biopsy (Name removed -moderator) but the strain is tearing my sis and me in two. We decided to not let on how bad it was, as it felt like it would be putting a very dark and scary cloud over her head. But the biopsy is the only hope we have, or straw to clutch at, as it may come back as some rare type that will respond to treatment and the surgeon got it wrong....Please please let it be...someone has to be in the 5% right?

My sister is being very brave as she has some effects from her chemo, but I am struggling to come to terms with this. I cannot sleep, when I close my eyes it feels like death is coming and I have to put the light on, get up, make tea anything. Is this a mild panic attack? never suffered before......random crying like waves come over me..God what an awful time this is...

If he is up there (and I'm having serious doubts now) Please Bless Us All

John

[Nardobd]

Hi John

Just a short response to say that you are not alone in the shock and hurt you are feeling. You'll find lots of similar stories on this forum and much help and guidance. I'm at work right now and can't give you the full reply I would like but will do so later on.

Sending thoughts of strength and calm your way.

Nicki

[Nardobd]

Hi John

That's better, I can take my time to respond now. My husband Ted was in a very similar position to your Mum, even down to first being told it was probably gallstones!

You can read a potted history of Ted's journey here on the board on another thread http://www.pancreaticcancer.org.uk/discussion/viewtopic.php?f=4&t=497&p=3036#p3036 (just click the link and scroll down until the longest messagae - that's me!)

Adenocarcinoma is the most common form of pancreatic cancer. It can be aggressive but that's what Ted was diagnosed with over 2 years ago. He, too, was given 6 to 9 months. He's still here and has a reasonable quality of life, although that has deterioriated a little over the past few months - not necessarily cancer-related because he has other problems too.

I'm afraid that in the NHS communication is often incredibly poor. One department don't seem to understand how another works. Even now, Ted and I are caught out by it sometimes - like this week when he was told to turn up for a scan only to be told by a secretary that it wasn't going to happen! i make no secret of the fact that I shout loudly and often - including tearing into the Head of the Oncology Pharmacy in front of a whole roomful of patients and again in front of her staff. I've made formal complaints and had PALS (Patient Advice and Liaison Service) and my local MP involved before now and I've theatened the hospital with going to the press. I'm blunt, forceful and assertive (just don't cross the line and become aggressive because that will get you removed from the premises). It seems to work!

Your reaction, and especially not being able to sleep says to me that you need to go and see your own GP - none of us on here are able to diagnose but I think that your GP might be able to give you something which will help you to cope during this crisis period - even if it's just until you know what's going on.

You'll find your own way of coping - I know that seems impossible right now, but it happens.

My very best wishes to your Mum, your sister and you - keep writing, keep asking questions and most of all, keep being the loving Son and Brother that you are.

Nicki

[john27]

Hi Nicki,

Thank you so much for replying, I have read your posts and have to say that you and Ted are amazing. When I read about other peoples experience of this nasty disease, the waves of tears come over me, it's hard to believe life can be so cruel. But I can't fall apart for Mum's sake and my little sis needs me too.

But when I'm on my own, it still feels pretty dark, hopefully this will ease. Been busy looking into papaya and a herbal tea called Flor essence, when Ted started chemo were there any conflicts with the supplements? Mum is having some problems with pain after eating so we have been making lots of salads and switched to soya milk wholegrain breads anything unprocessed, got her some green tea but she didn't like it. Is there anything you think we should avoid? With the papaya..what form does Ted have? fresh fruit or do I need to visit Holland&Barrett?

Thank you again, it really is appreciated. Sending you and Ted my best hopes and wishes, and anyone else going through this.

John

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[DRAD3]

Hi John

So sorry to hear about your Mum and the inexcusable miscommunications and delays - as if things weren't hard enough!

My husband has a similar story - admitted to hospital in January with jaundice - doctor suspected gallstones initially but he had a stent fitted in his bile duct as it was blocked. We were not told at this point what the underlying cause of the blocked bile duct was. The doctor did mention to my husband that they were wanted to rule out cancer but nothing was ever said formally (or to me) and I only found out about PC because it was written on his discharge paperwork at the hospital when he was sent home after the stent was fitted. We only found out about PC a week later, when we saw the Upper GI consultant - he said very little to us (which worried me) but referred us to a Liver Surgeon at another hospital. We waited another 2 weeks before being told that it was PC and inoperable because it had invaded blood vessels. We were told that day and he had 4-6 months but chemo would buy him some time and he had known people survive 2 years. We were absolutely devastated, much like you and your family are and we cried and cried for days. Gary is now on cycle three of chemotherapy. He opted to take part in one of the clinical trials which involves two lots of chemotherapy - one drip-fed (once a week) and daily tablets. He CT scan is due to take place next week to see whether the chemo has had any effect (if there is a God...) If the tumour has shrunk to the extent the trial wants/expects, he will have another cycle of chemo then begin radiotherapy (every day for five & half weeks). So much has happened since January - his birthday was the beginning of May and we didn't think he'd have made it, based on what we were told back then, so you just never know. Don't give up - it all seems very bleak now and death does seem to be tapping on your shoulder but shrug it off, be positive.

Gary had a lot of discomfort after eating - he eats little and often now and takes a Lansoprazole capsule in the morning which reduces the acid produced in the stomach - that has helped. Just let the consultant/GP know all the problems - there are often remedies which can help.

Wishing you and your family well.

Deb

[Nardobd]

Hi John and Deb

I understand that the researcher who is looking into this makes tea from the leaves of the papaya tree and, in accordance with local custom, doesn't allow metal to touch it but Ted just eats the papaya fruit from the supermarket - he enjoys it and a bit of fresh fruit is good for him anyway. It depends on how far you want to go but this is one thing that I can do for him which I know won't cause him any harm. The supplements haven't affected him but, as you have probably realised everyone is different.

There are a few foods which Ted just can't eat now - he really misses his bacon sandwich at the weekend! Generally, though his digestion isn't too bad. Like Gary, Ted takesz a protective medication for his stomach, his is omneprazole but I would guess it's much the same thing. Additionally is your Mum on Creon ? It's a digestive enzyme replacement. If not, speak to her doctors to see whether they would recommend it.

Wishing good luck to Gary for his CT too. Let us know how you get on Deb.

Kind regards

Nicki

[laura]

HI THERE, i read this forum a lot but do not post very often, but really feel for you x my husband was diagnosed feb 2010 operated on unsuccessfully in april, tumour same as your mums but wrapped round superior mesenteric vein. we are just about to start our 12th 4wk cycle of gemcap though we still have cancer, life is very good we have had ups and downs with my hubbys health and still odd things happen but cancer makes you so aware of your body and anything a bit differant makes you very wary. my husbands food intake varies, sometimes difficult to fancy anything othertimes he will eat most things, we have found ensure plus very good as meal substitute, available on script, also depend highly on creon 25oooo capsuls which help digest the food.

everybody is so different theres no one way to deal with pc, i have to say the oncology team , our doctors and our macmillan nurse are fantastic every one is upfront with us and answer all our questions. my hubby has had 4 scans at twelve wk intervals, 1st two showed a reduction in size the last two have shown stability i realize how lucky we are to some sufferers! BUT YOULEARN TO LIVE WITH IT HONEST.but we really do try to get the most from our days, my hubby is 62 and im 71. my very best wishes to you and yours, keep talking to the people involved in mums care, also best wishes to your sister, we live quite a way down in west country and i really can not fault the care we get. hope you get good care take care xx

[millyjo]

Dear John,

So sorry to here about your mum.

It's unbelievable when you here such news, and it is only naturtal to react as you have done . . .crying etc., you are after all only human, and your mum is so precious to you. I too went through the same, still struggle now, and looking back I wish I had gone to the doctors at the time as I suffered with my health after I lost mum. You need to look after yourself as well, dealing with this is a battle

Your sister bless her is coping in her own way, and I'm sure if you were a fly on the wall you would see her breakdown.

You are both being strong for your mum.

My mum as with yours, found it difficult and over whelming to sit in with specialist etc., she was in denial. But eventually she had to know what was wrong and the severity of it. Neverthless we as a family did sheild her from some of the worst.

Everyone is different.

I send you, your sister and most importantly your dear mum my love and thoughts.

Take care

Millyjoxx

[john27]

Hi Everyone,

Thank you all so much for taking the time to share your experiences and feelings, it feels abit overwhelming as I keep getting the tears everytime I read something. But it really has helped as I don't feel quite so bad now and seem to have got onto the proactive positive road quickly. From your advice have talked to Mum about things she might like and thanks to Nicki the Papaya (fresh) is a definite goer as she loves fruit, and we are going to be guzzling blueberry tea like it's going out of style. I am going to talk to our Mac nurse tomorrow about ensure plus and also Creon, have to say she has been so great without any prompting, not just for Mum but Jo aswell-so far superstar...

I wrote out quite a long reply last night to each of you that has written but near the end my broadband went haywire and lost it so going to keep this shorter because if it happens again it will make me cry as typing isn't a strong point...

Nicki...My heartfelt thanks to you, best regards to Ted xx

Deb...really got everything crossed for Gary, I hope the results are good..no not good--amazing! please keep us informed xx

Laura...jealous of you, we originated in Newquay...Mum's favourite place..little holiday planned this summer hopefully xx

Millyjo...thankyou, Jo does breakdown but only when we're alone, all I can do is hold her and let her let it out, bad day today...some hair fell out..really trying to keep her chin up...

Some good news today was Mum has an appointment to see the surgeon performing the biopsy on tuesday...just to discuss....no actual date for the biopsy yet...

Kindest regards

John

[john27]

Hi all,

I hope you are doing ok. Mum's appointment has been changed to next week and I'm in a right state as Mum doesn't know how bad this is and I feel awful knowing but she says she doesnt want to know anything horrible, this is impossible, how do I protect her from the inevitable..but I've been told the surgeon will be honest with her....really don't know what to do......my sis has flipped her lid...she can't handle it on top of her chemo....god almighty I wish 2011 had never happened...my positive streak isnt doing so good WHY????? has this happened, y'know I used to believe in Karma but Karma is bullshit because we don't deserve this.....sorry bad day..struggling with Mum's pain control....she's on morphine solution now but the pain doesn't go away and she has headaches aswell...the only kind of good thing is the Mac nurse ..gotta go

john

[lynbo]

Dear john

I read your post and had to respond, the consultant cannot tell your mam how long she has or anything like it, they can ask if she wants to know the outcome, they did with my Andy, but we said we didn't want to know, and that was that.

The first words out of my husbands mouth were, will I die? How long have I got? And can you cure it?

All a knee jerk reaction, and we didn't get answers to any, as I said - we stay positive and fight this all the way.

You have to be positive, each person is different, look at Nikki and Ted?

So stay calm and just do what you have to.

Even if our loved ones realise, I think they are sometimes stronger than us? Wanting to shield us from the pain?

Stay strong

Love

Lynne xx

[clair2305]

Dear John

I just wanted to give you some more information on papaya, but I don't want to regurgitate it here so here are the links to my posts

http://www.pancreaticcancer.org.uk/discussion/viewtopic.php?f=3&t=294&p=1783&hilit=papaya#p1783

http://www.pancreaticcancer.org.uk/discussion/viewtopic.php?f=2&t=304&p=2988&hilit=papaya#p1906

When my hubby Blue was diagnosed the mac nurse told us not to have echinneaca and zinc as these can interfere with the tumour marker (ca19-9) tests. These are blood tests that are normally done on the first week of chemo, you will find lots of information on PCUK forum bout these.

The other useful advice I can give, which a nurse on the ward told me, is to get a notebook. I bought both a diary and a notebook and it was invaluable. You can write questions down as you think of them and ask them when you see the consultant and make notes from conversations. The hospital Blue was under were very good and knew the diary and red book would come out and answered my questions. I also kept notes of BLue's weight and blood test results, CT scans and other procedures he had. This is still valuable to me as before Blue passed away we started a medical complaint about out ex-GP (who basically did nothing) and I am continuing with this.

Pancreatic cancer is awful. I have no complaint about the hospital Blue was under, once diagnosed and under their care they did all they could and I know we, our love, Blue's courage, strength and his realistic attitude had an impact on the staff there.

As for remaining positive, it is hard I know only too well, I tried my best and I think if I'd have accepted Blue's diagnosis in a realistic way, I wouldn't have been any help to him because I would not have wanted to do the things we did when he was feeling well (going horseracing, holidays etc).

You can see my posts here on PCUK (we are the Clair and Blue threads).

Another piece of advice which may work is does your mum like honey? If so, get manuka honey (the higher the UMF the better), Blue had it on toast during chemo and I do think it helped him tolerate it. Also pineapple chunks - good for the mouth and ideal when appetite is low, as well as other snacking items (small pots of custard, jelly, biscuits whatever), we had a stash cupboard for Blue and a shelf in the freezer and fridge that was solely his.

Take care

Clair

[john27]

Hi Everybody

I hope you all are doing ok....Finally today Mum had the biopsy...it went well..good samples?? taken and Mum was cool about the whole thing. Have to say the nurses and the surgeon were really lovely and put us both at ease...(have been worrying all week about it).....So now we wait for results and then Chemo...still have hope in my heart that something miracleous is gonna happen..sorry can't help it....anyway just wanted to share this...

Really do hope you all are ok too especially those that have been so good to give advice and support over the last few weeks....

Kind regards

John

[Nardobd]

Never give up hope John - ever since his diagnosis I've told Ted that all I need him to do is to keep fighting until one of the scientists makes that marvellous breakthough and finds a cure!

Take care

Nicki x

[john27]

Hi Nicki

Thanks...I'll never give up-not a natural thing to do! How is Ted? Did you get anywhere with some treatment for the leg? I hope so.....

Mum is abit sore today but is ok and asleep on the sofa so figure it's the best thing for her at the mo...kinda dreading the results of the biopsy as they have virtually said what it will be but you never know and I think if they knew 100% then the biopsy would be a total waste of time..

I had an email saying they are going to send out the Papaya leaf extract Monday......I think I may ask Mum to bathe in it!!

Best regards to you and Ted

John

[john27]

Hi all

I hope you are all ok..Today we got results from the biopsy, not great as it is adenocarcinoma as expected. Chemotherapy starts next wednesday so at least things are moving along now but it feels so real again now and it's scary (again), not that it really ever went away but I guess when you are dealing with doing things it takes your mind away from the seriousness of this. Mum slept alot over the weekend after the biopsy as she had abit of pain so has been taking more Oromorph but has been quite perky today and has the fighting spirit which I'm really happy about, as I believe mental attitude can help alot..

Anyway..to share as this forum really helps.....

Best wishes to you all

John

[john27]

Hi everyone

Mum has been in hospital for ten days with infections and dehydration,things arent good for us at the moment.Her tummy is very swollen with infected fluid, has anyone had experience of this as I am very worried cos our Mac nurse said it's a sympton that its near the end, I am distraught as thought we had some time to fight this thing, it cant be over we haven't started..cant write much had no sleep for days and its getting harder to keep it together

John

[laura]

dear john, so sorry that your mum is not so well at the moment, i understand how panicky it makes you feel, we are doing quite good but when bri gets an off day or has a new pain , i start worrying all over again , i cant offer you any advice , im sorry, but read your post and thought i would reply,try to spend nice moments with you mum, hang on in there, you can do it,honest, take care of you as well. thoughts and hugs laura x

[lynbo]

Hi John

Keep strong, it's hard I know, but try not to think too much, just be there for your mam

Xxxxx

[Nardobd]

Hi John and I'm sorry to hear your news.

Ascites (the medical term for fluid in the abdominal cavity) is not always a sign of end-stage cancer. It can be drained or, if it keeps recurring a shunt can be inserted.

I know that you value the time with your Mum greatly and I hope she's back home with you soon. You've got to get some sleep so that you can look after her.

Sending you thoughts of strength

Nicki xx

[john27]

Thankyou ladies

Feel better today knowing it isn't always 'the end' They started draining today 1.2 litres as I left tonight and quite abit to go I reckon. When someone says something to you that you don't want to hear, it's hard to see the brightside and I've let it all do my head in. Really upset with our GP too at the mo as I don't know what would have happened to Mum if I'd gone along with her advice instead of taking her in.

I guess I haven't really got to grips with Mum dying, everything says it's going to happen but there's that bit that won't believe it. I love her so much and it's totally selfish of me but it's very hard to imagine life without her being there...keep telling myself it comes to us all, it's the one thing we all have in common that we all die so it's ok but it still hurts. Having someone you love leave you is painful and that's why I called it totally selfish so if you really love someone the important thing is that they are happy and pain free when they go. And to know they are loved.......

Love to you all

John

[john27]

Hi all

I'm ever so sorry I didn't ask how you are doing, sometimes it feels like your in your own bubble and forget that you are not alone.

Nicki how is your Ted? Did they find a solution for his leg? We got the papaya extract but have hardly had chance to get Mum taking it when it all when pear shaped nearly 2 weeks ago...alot of my hope was pinned on that stuff..stupid really but need some hope..not human to have no hope is it....

Did you get some too?

Laura how is Brian? Don't know much about your journey really but know it can't be easy...I hope the weather is good down your way, so miss cornwall..really want Mum to get well enough so can take her back for hols....

Bit of a gloomy day today, Mum had diahorrea 4 times this morning which knocked the stuffing out of her and upset her greatly, she has alot of pride and dignity. The doctor that has been looking after her and the drain is concerned it's her condition that is causing all of this so she is going for a CT scan in the morning to see how far the cancer has spread. So worried I can't tell you, the black cloud never lets up. You never know it might not be that bad so keep ya posted...

Goodnight all

[john27]

Today is a bad day. Got results of Mum's CT scan and the cancer has spread to lungs and liver. Doctor is talking weeks now as liver is failing.

thought i'd done some tears but this feels like my head will explode, time is so short and my mind is chaos........

[laura]

john so sorry to hear your news , it must be devastating for your mum and you, somethings john we cant change, now you have a prognosis, do try and refocus on "now" and do,say, go to places etc that you want to, ask mum if theres anything she would like, is a trip to cornwall out of the question?

some people never have the opportunity to make the last months of a loved ones life special, try and get something positive from this news, i know its so easy for me to say, but its what i try to do all the time now, dont always succeed cause everyday life gets in the way. my love and thoughts are with you be strong xx

[Nardobd]

Oh John. I'm so very sorry to hear your news. I'd love to be able to give you a great big hug

Whether or not you manage to take a short trip, as Laura suggests, the time you have left with your Mum is special. She's obviously a wonderful person and you're her beloved son. Whatever you enjoy doing together, do it. I don't care if it's just a tipple down at your local, a walk in the park, playing a game...whatever.

I know it's so very hard to be strong - when Ted was diagnosed I was crying in HIS arms - but you know that you've done everything you can so far and I know you'll continue to do everything you can for Mum. Get what comfort you can from that. I know it's nothing to the enormity of the news you've had but your Mum is so lucky to have you.

Much love, my friend.

Nicki x