Mum - Just Diagnosed

[princesspentium]

I needed to join this forum as myself and the rest of the family have just received the devasting news that my 85 year old Mum has been diagnosed with inoperable pancreatic cancer and the prognosis is about a year.

As many of you will know; we are all feeling shellshocked at the moment and it makes it more difficult, that I, the oldest of 2 children (I'm 61) live in London with my husband, my brother (57) lives in Gloucester whilst Mum and my stepfather(67) live in Norfolk near Gt Yarmouth.

Mum is a lively 85 who paints, does yoga and has an enquiring intelligent mind. She has been suffering severe abdominal pain since April,& the GP has been treating her for gastric problems ie excluding different types of food like wheat etc to see if the pain was caused by an intolerance.

It was my nagging her to go back to the GP because the pain was worsening and she had lost over 1.5st in a few months (both symptoms ringing cancer alarm bells for me)that promted the GP to fast track her for cancer screening & finally after a barrage of blood tests, ultrasound and scans, she was called to see the consultant on Wednesday last week and given the diagnosis. I believe they have given her a 'pack' of information and she is to see the oncologist in a 'couple' of weeks to discuss how to move forward ie chemo etc.

Mum has taken a stoical approach - saying to me on the phone ' Well we all have to go sometime!'Her worry seems to be more about my stepfather who is 18 years younger than her, & what he is going to do when she 'is gone'.She says he won't want to go on living in the house on his own!

She is also adamant that she wants a Humanist funeral when the time comes and has admitted to me that her and my stepfather had already talked about this before the diagnosis. I think deep in her heart she knew that the news would be bad. Her father, my grandad, died of a malignant skin tumour which spread to his throat/lungs when he was 77 and Mum's sister died of stomach cancer aged 62. Mum herself has had some benign skin cancers which were sucessfully removed.

Sorry if I have rambled but I know that as a family we are beginning a journey which none of us want to be on and I'm hoping that I can gain strength and support from those of you who have gone or who are going through a similiar journey.

Ruth

[Cathy]

Hi Ruth

Welcome to the forum, you will find a lot of support and advice on here, from other users and also from the nurses. You can either email or ring them (contact details http://www.pancreaticcancer.org.uk/about-us/contact-us) for very comprehensive advice during the week.

I'm sorry to hear of your Mum's diagnosis - she sounds like a real character, very strong.

I know there are at least a couple of forum friends who post on here who live in your Mum's area but everyone here is very helpful and friendly and we have all, or our loved ones have, been on the journey you and your family are about to start. For my part it is my partner was was diagnosed with inoperable PC December 2012.

I am sure you will get many more replies.

I hope your Mum gets her date for the oncologist soon and gets a plan of treatment. It would be good if someone goes with her for the appointment (can be a friend or family member) - there is a lot to take in. I go with a little notebook for each of our appointments.

Good luck with going forwards.

Cathy xx

[J_T]

Hello Ruth and welcome to the forum. This is the best place to come when either you, or someone you love has had the devastating diagnosis of pc.

Sounds like your mum will get good care in Norfolk, to be given an information pack at diagnosis, well, I'm not saying its a rarity, but I've never heard of it before, so hats off to your local centre!

From what you say, your mum does sound very philosophical and its good that sshe seems to be mentally strong, and physically from what you say. Good luck with any treatments she's offered and takes up and remember we are always here to listen.

Regards

Julia x

[cestrian]

Welcome to the Forum Ruth

You will find this a great place for support and information and also a place where you can vent, rant or whatever without any fear of criticism as we all know only too well what each of us is going through. Your Mum sounds a positive, lovely lady and I do hope that she is offered the right treatment in a timely fashion - keep pushing if necessary!

Jeni and Dianne, particularly, are such valuable sources of information and are always happy to go into more detail by email on more personal areas of advice that you need.

Do make sure that you avail yourself of all the resources that are available locally, McMillan, Marie Curie etc. Sadly these can be patchy depending on where you live so stick at it if they are not offered immediately. At her age I am not sure if your Mum would want to undergo any nerve separation surgery but it can be a godsend in avoiding over reliance on pain killers. Creons may help to allay weight loss and are not always offered so do ask!!

Love and Peace

Mike

[princesspentium]

Thank you so much for your replies, it means a lot to me.

I spoke to Mum yesterday and she seems quite upbeat at the moment. She's been given low dosage morphine patches which have dulled the pain and enabled her to get a few nights sleep.

She has an appointment at hospital tomorrow to have an endoscopists ultrasound and possibly a biopsy. She also has the oncologist's appointment on Nov 28th.

She knows that the future is uncertain but seems resigned to stay strong and focused on enjoying the rest of her life however long that is. She's already talking about taking their caravan away somewhere.

I'm feeling better since we spoke.

Ruth

[princesspentium]

Just an update re Mum. Last week she went in to have an endoscopic ultrasound procedure where they hoped to take a biopsy too. Unfortunately the surgeon was unable to take the biopsy - his reason being 'I'm sorry you were just too small inside' Not sure I understand this, other than he couldn't get near the site of the cancer to take the biopsy.

This is very worrying as Mum sees the oncologist this Friday Nov 29th and without the biopsy result they will have less information to help them decide on treatment.

I'm assuming chemo will be suggested.

Has anyone had any experience of unsuccessful biopsy/ultrasound?

Ruth

[Slewis7313]

Hi Ruth, sorry your Mum went through this procedure without getting a result. I had a similar outcome when first diagnosed in December 2012. They managed to get a good quality biopsy, but found no cancerous cells at all. This is not that unusual and they decided a subsequent biopsy would probably give the same result. The Multi Disciplinary Team looked at all other factors and decided the tumour was acting in a cancerous manner and started treatment accordingly. The treatment worked and my condition started to improve after around one month. We are all different and may respond differently, but the lack of a good biopsy did not delay my treatment.

Hope this is of use

Take care

Steve

X

[princesspentium]

Thanks Steve for your reply.

Update - Mum didn't see the oncologist last week - her appointment clashed with one for another CT scan - to see if the cancer has spread, so they did the CT & have rescheduled the oncologist for this Friday Dec 6th.

She was going to have a visit from a nurse with the palliative care team this week and I haven't heard how that went yet. She's having some relief from the pain with the morphine patches but says she feels 'headachey' and 'shakey' inside. I told her to use the contact number she was given from the hospital to ask whether this was normal.

Mum is in a bit of a frenzy at the moment - determined to clear all the accumulated junk out of her house! Has anyone else experience of this?

She spent half of our phone call on Sunday telling me about old letters & cards she'd found and bits of other 'nostalgia' information. I suppose it's only to be expected that she'd want to revisit her past.

Ruth

[jules 2015]

Hi Ruth

Firstly sorry to hear about your mum's diagnosis, it seems to be the norm that it takes everyone so long to get the dreaded diagnosis of pc and then it seems like ages having tests until chemo/ treatment can commence.

It sounds like your mum is a very positive lady, she should definitely call the ontology team about her side effects to the patches, there are lots of different types which can be prescribed.

My dad also got into a frenzy and had lots of things he needed to do when he was first diagnosed, I have read on here of others loved ones being in a type of zone where they need to get certain things done, for my dad it was his stamp collection that needed finishing and I'm pleased to say he did get this done.

Good luck with your journey and post on here whenever you need support, everyone's journey is different but your new forum family will also have some good advise for you

Julie x

[J_T]

Hi Ruth, hope all goes well with the onc appointment on Friday and your mum's pain gets sorted properly. She sounds a strong lady.

Wishing you all well.

Julia x

[InfoForMum]

Hi Ruth,

Wanted to add my sympaties for the diagnosis, but also offer any help/advice I can as we are local (Norfolk too) and I have a good knowledge of what the referral path and likely treatment options might be. Not Gt Yarmouth specifically, but we're within the catchment for the same specialist PC centre. My Mum is 68 and was diagnosed early August this year and I spent most of the next 3 months researching her options. Different to your Mum's as she's classed as borderline for eventual surgery, but we didn't know that at the start. All we saw was the average brutal prognosis that goes with this thing.

Please ask the moderators for my email if you want to chat offline.

More generally I back up the first post by Cathy. Do have a chat to the nurses. They are a mine of knowledge and can reassure you that all that can be done is being offered or done. A important, easy first step is asking for CREON or other pancreatic enzyme supplements. I'm sure someone else has mentionned this, but didn't read all replies in detail.

Whatever her treatment options or choices, that should help deal with fat absorption issues (a major cause of weight loss with this disease) and prescription should not wait until positive diagnosis as they are not toxic and can be tried without ill effects from day 1. Again the nurses will have the info on that you might need.

I really feel for you being so far away and I hope you, your Mum, her husband and the rest of the family find the path that's right for you all and I wish you all strength for the journey. This immediate post diagnosis time can be brutal, so visit and use us as much as you need if it helps.

Sarah

XXX

[marie souter]

Hi There,

am so sorry about your dear moms diagnosis and I truly feel for you living so far away, my mom recently passed away from this awful cancer and my brother lives in New Zealand so I truly understand how awful this is for you.

Please advise your mom to rely heavily on the support team that will be available to her as they proved invaluable to me, no question is too silly if its causing her concern. If you're unsure of anything as others have also said to you please feel free to ask the moderator for my email address too, I've been through this journey from start to finish as my moms sole carer 24/7 for 9 mths in total so I bin there and bought most of the t-shirts. (Although I am not a healthcare professional I can only advise what has worked for my mom as everyone is different and this particular cancer effects people in loads of different ways.)

The advice my other lovely friends here have given you about Creon is invaluable (know that you cannot overdose on this) however there cam b a bit of trial and error on how much she may need to take to balance the weight loss out.

Also remember if painkillers are giving you side effects there are a lot of others to choose from which your Macmillan nurse will advise your family on. You will find your moms Oncology Team and Macmillan team are way more use that your GP who will always refer to your personal Macmillan Nurse anyway

Wishing you lots of strength in the journey that lies ahead for you, your mom and your family..

Love n Hugz

Marie

xx

[marie souter]

Also Ruth,

I suspect your mom was letting you know about the old letters etc for your benefit, my mom did this, she wanted to find particular items to make sure we would find them easily ...

They're thoughtful so and so's our moms lol..

Also my mom did not do well on morphine patches ... there are a few others such as oxycodone and fentanyl patches .. I would see how she gets on as they are strong and headachy and shakiness may actually wear off as some side effects are just initial first week or so and then as the body gets used to them the side effects can go, if shes finding them too bothersome though she can either change the strength to a lower patch or ask for something else instead .. has she been allocated a macmillan nurse yet? It took my mom a couple of mths to get hers sorted. If she hasn't I would push for this not only for the obvious medication advice whilst shes waiting to see the oncology team but for the emotional support she may need from them.

Fingers crossed for Friday

Will be thinking of your lovely mom and will pop on to see how it went xxx

Hugz Marie x

[marie souter]

My mom had an unsucessful biopsy ... through an endoscopy ... she was just in too much pain for the consultant to continue .. however they did try at a later date and succeeded .. I would perhaps speak to the oncology team again about this issue as this is key to her prognosis and her treatment, surely they must have teams who are used to this problem and are more practiced at getting past this problem?

Good luck

Marie

(again) lol

next time am gona read the whole thread instead of just answering one post at a time lol

[princesspentium]

Thank you so much to all of you who have replied with advice & support.

I spoke to Mum last night (mainly because I was worried about the storm surge!)She told me she didn't want to go to the appointment this morning as it just makes everything so much more real! She also admitted she hadn't read the pack of info she was given by the consultant she saw when she was diagnosed 3 weeks ago! But my stepfather has thank goodness.

Another concern was that her morphine patches aren't managing the pain as well as they did initially and she is worried that any stronger medication will impair her cognitive function!

I asked her if she would ring me tonight to tell me what the oncologist said or if I should ring her - but she said 'No it can wait till Sunday!' which is when I usually call! Not sure now whether to wait or ring tonight as I want to know what the prognosis is.

Mum also told me last night, that she has already been told that she is not a candidate for chemo, as at 85 her body would not tolerate the treatment well.

Re Macmillan nurse - I believe she has had a visit from a nurse on the Palliative Care team, on Tuesday this week. The nurse is going to come back with forms for Mum to apply for Assistance Allowance? I'm not sure Mum is taking it all in at the moment as she was very vague about what the nurse said.

Must admit I'm feeling sick with tension and apprehension today.

Ruth

[marie souter]

Oh Ruth,

I really feel for you, your mom sounds like shes doing exactly what my mom did, she wouldnt go back to see her oncologist she refused chemo and just decided what would be would be, however she did outdo everyones ideas with regards to outliving expectations and from disgnosis she went on a further 8mths and not all of it bad either she had several bad episodes where she went on a syringe driver and it took them a week to get the right balance in pain/sickness medication then a further week to keep things steady then shed come back off the driver and would be back to life as normal.

I'm not saying this was easy, finding the right painkiller is key...with my mom there were only certain levels of morphine she could take before she had absorption issues which caused confusion/lack of appeitite/hallucinations to the point of not being able to sit up by herself or hold a cup ... BUT this is where YOU can change things .. there are so many other drugs out there..it does take a bit of tweaking but my mom went from that to being perfectly normal the following week with a new drug change ... she ended up on Fentanyl patches which were great ... fentanyl and oxycodone are much cleaner drugs with less side effects .. the thing is if the patches aren't controlling her pain and she is worried about her cognitive function 'please please' reiterate what I have said .. this by no means is the end of it ... but at the very least she should be pain free and that is what the macmillan team will be aiming to do for her but it will take some trial and error as they can't just hit that magic drug amount straight away, your mom has to be willing to try different strengths and different drugs, the difference to her quality of life in the long run will be so much better if she is willing to try new things ... I can honestly say in the 8 mths I had my mom from diagnosis she actually had more good times than bad .. if you read my thread 'tired' you will see it wasn't easy by any means BUT to see her one week not able to hold a conversation then me stamp my feet to shake things up again, then the following week have mom pain free and out shopping as normal AMAZING ... I understand what your mom is doing, she sounds like a strong lady but she should not have to be feeling the pain she is feeling bless her .. I feel for you too as prognosis of course without chemo .... well ... your mom may not have asked that question and may not want to know ... you will find that the internet can be a good and a bad thing ... sites like these are the good .. looking for PC prognosis statistics ... well they arent that helpful .. your mom isnt a statistic .. everyone EVERYONE is different .. the best advice I can give is .. take each day as it comes ... tomorrow is going to take care of itself regardless .. don;t count the days .... rather .. make the days count ... please contact the moderator should you want any further advice on what 'may' come via my email address to speak offline ... this uncertainty and feeling of sickness you have I remember it so well ... the guys on here helped me so much coming to terms with a lot of what I was dealing with .. its a good place to vent please feel free to do so anytime ... my heart goes out to you and your family Ruth..

Love and Hugz

Marie

xx

[PCUK Nurse Dianne]

Hi Ruth,

I just wanted to touch base with you, it sounds like you are having a bit of a struggle at present. I would be happy to discuss some of these issues with you, so may email you independently of the forum if that is ok.

For general knowledge, people can ask to have another opinion if they feel that they are not being given treatment, ie Ruth has mentioned that her mother has been told that the chemotherapy may be too strong for her. There are many different chemotherapy options and they also have beneficial effects in helping to control pain, so it is always worth discussing.

If anyone does have any queries please feel free to call the support line and Jeni and I would always be happy to talk through this with you.

Dianne

Support Team

[princesspentium]

Thank you Marie for your in depth advice I really appreciate it.

Just spoken to my stepdad re mum's oncology appointment this morning.

No major concerns atm. The cancer is seated at the tail end of the pancreas which apparently is good as it's an area which usually causes the least problems. They can't operate as it's close to major blood vessels

Mum is going to continue with the morphine patches (she's on the lowest dose at the moment) these can be increased if needs be. She's seeing the palliative care nurse again next week. She's got another appointment with the oncologist at the end of February in 12 weeks time but obviously can go back if there are problems before then. So it's a case of wait and see atm. They may do palliative radiotherapy at some point in the future but no one really knows how it's going to develop.

Thanks for advice re different pain management drugs.

I have recommended to my stepdad that he joins the forum and also sends for some of the information booklets.

Talk about never rains but it pours - just heard that my 92 year old FIL has been taken into hospital this afternoon! In laws live 10 minutes away and my BIL got taken into hospital when he wouldn't get up this morning! this is not a pc problem - lots of ill health mainly age related I'm afraid and having spent too many years talking those dreadful statins which have wasted his muscles.

Ruth

[Cathy]

Hi there Ruth

That's good that you seem to have a plan. It does help put your mind at rest a little. Sorry to hear your Mum has been struggling a bit. My own partner has also been struggling with pain that his palliative care team are trying to get on top of. At the moment he is on Oxycotin but they are looking at other ways as well (coincidentlly morphine patches was one of them).

Marie - thank you for such a detailed email about pain control.

He is also back on chemotherapy (just had his 2nd cycle) - it hasn't yet improved the pain noticibly but does seem to have helped a little with him going to the loo. Also, coincidentally his tumour was also in the body and tail and you are right that this can cause fewer symptoms - hopefully no jaundice for a start!

Hope the rest of your family recover quickly -you're right that these things always seem to happen together!

Take care

Cathy xx

[marie souter]

Hi Cathy n Ruth,

This happened to me so many older family members being ill at the same time...and I don;t know if anyone else agrees but for me it always seems to be this time of the year.

Dianne gives very sage advice on Chemo, emailing the moderators with very real worrys and concerns is a must (and I am sure, cos I know she did for me, that Dianne has probably already emailed you )

I get so mad sometimes thinking of my own mom refusing chemo, especially when you read on here stories of people who have actually had tumors shrunk. There are a lot of different options out there with regards to chemo but my mom wouldnt even let me pursue that avenue for her.

BTW mom was great on Morphine for quite a while before she had any absorption problems, but by no means are the nurses happy with people who are having severe problems with it and are always and very much so NEED family input as no-one knows your mom better than you and your step dad .. the district nurses and out of hrs team always used to take any advice or concerns I had as real and always respected my opinion and infact 99% of the time they acted on it.

I always had a pact with my mom as I was her sole carer...you can lie to everyone else (and she did regularly) but you can't to me because that could cost you your life, and we kept to that promisen I truly hope you take Diannes advice and advise your mom not to give up on chemo/radiotherapy etc sometimes you just have to push and prod a little ...

good luck all

hugz n love

Marie xx (wheezing with bad asthma AND I gave up smoking weeks ago how does that work?)

week 2 .. cold turkey am finding it easy and very proud of myself

[Cathy]

Hi Marie

I agree re Christmas.. I lost my sister nearly 5 years ago on NY Eve and last Christmas Jonathan was diagnosed and this, here we are struggling again. I feel resigned to it really. As Julia (J_T) on here once wrote "it's the bank holiday so things are bound to go tits up". That really made me smile...

Well done on stopping smoking.. Just from my own personal experience, I've given up twice (last time 14 yrs ago for good - still a non smoker), both times I got full of cold about a week or so after. I was told it was the toxins coming out.. Not sure if that is true or not but stopping can only ultimately be a very good thing. Will stop now before I get boring

Cathy (trying not to be boring) xxxx

[marie souter]

Lol Cathy, no one could call you boring xx

OOh maybe you're right, maybe that's why my asthmas playing up...feel a little better today.

This is the third time I have quit .. first time for almost 4 years then I got dads terminal diagnosis of COPD (caused by hospital negligence)...the day he died I started smoking again. I quit again July 2012 when I got pneumonia x 3 relapses and an ICU stay. When mom got given the news she was terminally ill I was with her, went outside and started smoking again. Stupid when someone you love has just been told they are dying because of smoking BUT stress makes you do stupid things.

I promised mom I would quit as soon as her funeral was over...and I did. I'm finding it easier than any other time. I will never smoke again, I never want to put my children through what I had to see. I can't change what I did with smoking in the past but I will effect my future as best I can from now on.

Julia is totally right BTW everytime mom had a bad episode it was either on a weekend (Noooooooooo) or a bank holiday....no macmillan nurses .. having GAT DOCS to deal with...urgh .... I had a lovely consultant who came out to see mom and he wrote a letter for the GAT DOCS at the front of the nurses folder with his number on for weekend advice....saved us no end of hassle ....

SEE CATHY ... who's boring now eh hehehe

hugz n kisses

Marie

[Cathy]

LOL Marie

What a super consultant (don't get me started on trying to get home visits - I WILL be boring).

When I stopped smoking the last time I went out with a friend a couple of days later and told him... He is a very dour born cynic (but also lovely)... Anyhow, he said to me that he didn't believe I'd stopped and ended up betting me £100 I wouldn't stop for 10 years. I was outraged!! So outraged I thought "Right! I'll show you, you b*****!" And I did. Exactly 10 years later (which just happened to be NY Eve) he was with me and a group of other friends at a little party and I asked everyone to gather round and made a speach about stopping ending with telling him he owed me £100. Fair play to him he paid up (tho he didn't pay interest which I also demanded ). So, my advice to anyone trying to stop was always "Get someone to REALLY wind you up". I missed a trick.. I should have patented the idea and be rich like Alan Carr was!

Well done tho, it sounds like you have it cracked.

Cathy xx

[marie souter]

AMG CATHY......NO INFLATION?????? What about inflation?

And, why didn't I think of that....'looks around for a rich friend'.....'all poor'.....

YOUTUBE?????? Hmmmmmm ......OOOOOOh sponsors?

Now sponsorship would be good tho?

Shoulda went down that route DAMMIT!!!!

Too many people winding me up full stop for anyone to cause that kinda outrageous indignation that would make me to go 'y u lil, I'll show u!'

Bah still quite tho...

HUgz n Love u Nutta hehe

Marie

xx

[marie souter]

Hey Ruth,

How's things going with you and your mom?

And your FIL?

Been a coupla days, was just wondering how you are all doing.

Hugz n love

Marie

xx