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princesspentium
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Mum - Just Diagnosed

Postby princesspentium » Sat Nov 16, 2013 2:37 pm

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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Mum - Just Diagnosed

Postby Cathy » Sat Nov 16, 2013 3:00 pm

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
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Mum - Just Diagnosed

Postby J_T » Sat Nov 16, 2013 3:06 pm

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
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Mum - Just Diagnosed

Postby cestrian » Sat Nov 16, 2013 8:01 pm

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
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum - Just Diagnosed

Postby princesspentium » Mon Nov 18, 2013 8:40 pm

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
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum - Just Diagnosed

Postby princesspentium » Tue Nov 26, 2013 10:32 am

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
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Mum - Just Diagnosed

Postby Slewis7313 » Tue Nov 26, 2013 10:41 am

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
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum - Just Diagnosed

Postby princesspentium » Tue Dec 03, 2013 10:44 pm

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
Posts: 55
Joined: Mon Sep 23, 2013 10:20 pm

Re: Mum - Just Diagnosed

Postby jules 2015 » Wed Dec 04, 2013 12:46 am

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
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Mum - Just Diagnosed

Postby J_T » Wed Dec 04, 2013 1:45 pm

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
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Mum - Just Diagnosed

Postby InfoForMum » Wed Dec 04, 2013 9:35 pm

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
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Mum - Just Diagnosed

Postby marie souter » Wed Dec 04, 2013 9:49 pm

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 :D

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
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Mum - Just Diagnosed

Postby marie souter » Wed Dec 04, 2013 9:56 pm

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
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Mum - Just Diagnosed

Postby marie souter » Wed Dec 04, 2013 10:00 pm

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
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum - Just Diagnosed

Postby princesspentium » Fri Dec 06, 2013 9:02 am

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