Mum's diagnosis

My mum has been diagnosed with this awful cancer on 20th May. She is/was a fit and healthy 76 year old playing golf, tennis and walking! Just before Christmas she thought she had digestive problems and visited the dr a total of 4 times. Each time she was prescribed tablets that did nothing. On the bank holiday weekend she had stomach pains so booked a private scan at the hospital. They said they could see something and would fax her doctor. When she went to the dr's they hadn't faxed the results. My mum took herself to A and E and 2 weeks later they diagnosed pancreatic cancer! They have said it is inoperable! On Tuesday she is going in for a stent and then will see an oncologist to start chemo.

I am an only child and very close to my mum. I am so scared I just don't know what is going to happen. My mum has lost weight and isn't eating very much. She won't go out and is very low in herself!

I am so glad I have found this forum. Any advice would be appreciated.

Sue

Hello Sue

Sorry to learn of your mum's diagnosis. Just wanted to send you a hug and to say hello. I hope your mum will feel better once she has her stent and treatment begins..

The nurses on here are lovely and you've probably seen they can be contacted by 'phone or e.mail...this forum is also very helpful and everyone friendly ...

Take care xxx

Thank you for your reply. I am really hoping this forum helps as I feel so scared for my mum. I am reeling from the news but so glad there is support out there. X

Hi Sue,

Welcome to the forum, my 83 year old active dad was diagnosed in January with PC.

I am glad your mum is having a stent as that seemed to help although it took over a month for his bilirubin levels to be low enough to start chemo.

Ask the oncologist for Creon (pancreatic enzymes which help get nutrients from food) although dad doesn't find the large ones very easy to swallow and he needed lots of encouragement to take sufficient his weight has now stabilised. (The nurses from here gave me all the facts about Creon).

If your area is covered by the McMillan nurses get your GP to refer you they have helped my dad with all sorts finances, blue badge and helping us discuss as a family with dad his end of life care preferences.

My Dad who had been very sociable attending my clubs and activities but since his diagnosis he doesn't really go out at first it was because he didn't want to explain his illness and then on Chemo his immunity has suffered. He will go out for drives in the countryside or to the beach.

I am not sure which part of the country you live and but in my parents area their are support groups for carers of cancer sufferers and see if their is a 'Maggies' near you.

Don't feel alone

All the best

Jane

Thank you for your reply Jane. My mum has already been given creons but she doesn't like them she says they upset her and make her really windy. She was given the diagnosis and then sent home as she is quiet well in herself at the moment. I am not sure what she has been told as she talks about next year saying she will get back to playing golf and feel better again!

It is all so confusing as in my head I think maybe she is right and everything will be ok but then I read the stories on here and it fills me with fear!

I don't really know what to think. They have to go in through her liver to fit the stent as they tried with an endoscopy but couldn't do it. We haven't had an oncologist appointment yet.

In my mind I keep thinking maybe she will get better! I know his won't be the case. I am sure nobody has spoken to her about how serious it is unless she is not saying!

It is all so confusing and terrifying.

Sue x

Sorry to hear of your mums diagnosis. The GPs couldn't diagnose my dad either, and it wasn't until he admitted himself, that they did something.

This is lovely forum, and there will be people here that have experienced some, of not all of what you are facing.

xx

I wonder if anyone can advise me. I am really struggling today my mum is so down! She was diagnosed on the 20th and since then has spoken to no one about this. She has just been waiting for her appointment which has come through for Tuesday. She won't take the creon as she says they make her feel worse. She has lost about 1.5 stone in last couple of weeks! She won't go out and she hardly eats anything!

I am thinking I should phone her Dr on Monday and maybe contact the McMillan nurses. I can't just let her fade away in front of my eyes.

Has anyone else been through this where you have just been left writing after diagnosis. It is almost like she thinks she has just been forgotten about!

Any advice would be warmly welcomed

Thank you Sue x

Hi Sue and so sorry to hear about your Mum's current situation. It does in fact remind me of when I was diagnosed in December 2012, also inoperable. I (along with my family) felt totally lost and alone, thinking I only had a short time left. That however changed on the day I met my Oncologist for the first time and finally understood what was wrong with me and what my options were (chemo). I too had lost a lot of weight in a short time, but the weight loss was stopped by the use of Creon. Whilst I know some people struggle more with them than I may have done, they certainly made a big difference to me though the digestive system was doing strange things with very pungent wind. It really is worth persevering with them! My own situation has not really changed and I am now on my second round of chemo after a 10 month break.

It is good to see you have an appointment on Tuesday (I assume with the Oncologist) and it is really important to push at the meeting for the treatment plan and to discuss the Creon issue.

I hope this has helped, but recall from personal experience how scary it was in the early days to be dropped into the world that is Pancreatic Cancer.

Take care and good luck on Tuesday

Steve

X

Thank you Steve the appointment on Tuesday is to have a stent! They have to go through the liver and the oncology appointment hasn't arrived yet.

Thank you for replying.

Sue

Hi Sue

I think experimenting with creon might help.. She night need to take more? Also, if her appetite is poor then the GP can prescribe high calorie drinks which might help. In the absence of those then adding cream to food might help too... like cream in coffee, cream if she has cereal, soup and so on....

Best of luck

Cathy xxxx

Thank you Cathy I am going to see her this morning. Sue

Hi Sue from my experience every thing takes 2 weeks, 2 weeks in hospital wondering what it is 2 weeks then waiting for diagnosis, 2 weeks then for oncologist appointment, 2 weeks for us to decide what we wanted to do, 2 weeks to put things in place, then 2 weeks wait as we had jaundice, now on 2 weeks wait building him back up . Things will be happening in the back ground iam sure.

Had a good chat with mum this morning...lots of tears. She is going to ring her GP tomorrow and ask for a prescription of high calorie drinks and a referral to McMillan. I can't believe no one has contacted her in 2 weeks.

I told her to go for a drive this afternoon for a change of scenery...she hadn't been out for a month... This was unsuccessful as she said she got a few minutes down the road and felt sick!

She is not the same person and I feel I'm losing her already. It is like she has no fight! I can't let her fade away in front of my eyes but I don't know what to do.

Has anyone else witnessed such a rapid decline?

I feel totally useless.

Sue x

Hi Sue,

It is such a horrible disease and rapid weight loss is very debilitating. I know what you mean about feeling useless but I think just coming on here and asking for advice or talking makes a difference. I would advise talk to the nurses on this site re her intolerance to creons. They will have dealt with this situation before quite possibly and have some good advice. Email Support@pancreaticcancer.org or give them a ring (no on website)

You haven't said when chemo is due to start?. This could really help with some of her symptoms.

All the very best

Cathy xxx

This forum is really helpful and I thank you all for your replies.

Mum is going in for her stent procedure today so I am really hoping she picks up after this. Still haven't had an oncology appointment.

Wrote to my Dr's surgery yesterday and at last they rang and chatted to her! Really bad just leaving her for the last 2 weeks! I think they have prescribed anti sickness tablets but they are looking into the tablets to combat wind! They wouldn't prescribe any high calorie drinks as the dr said they are full of sugar!

I hope the hospital help her today and refer her to the McMillan nurses.

I will let you all know how it goes. Sue

I hope all goes well today Sue and this will be a bridge to build on moving forward with your Mother's treatment. It is so frustrating with the drinks and would seem to show a fundamental lack of understanding of certain aspects of Pancreatic Cancer. When I was losing weight in the early days, my Oncologist and Dietician were very clear that I should eat whatever it took to assist with the weight, including lots of sugary foods. Hopefully this week will see some improvements for your Mum.

Steve

X

Hi there

I wonder if the concerns are over diabetes - a common side effect of PC.

I ask as Jonathan's GP raised this with us when I went to collect a prescription for them. He was diabetic but we got them in the end without too much bother.

Sue, suggest emailing the nurses on here as there is a range of high calorie suppliments that she could ask for.

Good luck

Cathy xx

Mum's op went well the procedure was done through her side as they couldn't do it the other way. She actually seemed brighter tonight as if it was a relief that they had managed to insert the stent.

I just want my mum back to how she was and I want to see a smile on her face!

Thank you to everyone on this supportive forum . sue x

Really pleased it has gone well. I can understand it must have been such a worry for your Mum (and you of course).

Steve

X

Hi Sue

Glad to read that your mum seemed brighter and that the stent op went well. Fingers crossed for you both that things improve now..X

I thought I would feel so happy today after my mum seemed brighter! They kept her in hospital as she was sick yesterday . Went to pick her up today and she was so quiet and low. She said she was sore , but it seemed more than that! She wouldn't even come to my house and sat in the back of the car as she said the roads are too bumpy and she can't stand being jolted!

The pancreatic specialist nurse said she would visit her and didn't and now the hospital have told her to chase the nurse and oncology up! Surely that is not right.

I can't believe the change in her since diagnosis on the 20th May. Has anyone else seen this? It is as if her generation hear the word cancer and automatically give up!

What can I do?

Sue x

Pleased it went well for her. I know from experience that depending on how the patient feels, depends on how we feel. I am sure that when your mum is low, you feel it for her and I know how hard those feelings are.

I agree, these people SHOULDN't have to be chased, but they do. It is so exhausting to get people to care.

Has been a few days since you posted, really hope things have improved a little for you both.

xx

Sue

Just wondering how things are? How is your mum and how are you?

Thinking of you

X

Thankyou so much for asking I really appreciate it. I am so scared for her. She is a completely different person. Still not eating, won't go out, said she doesn't feel like visitors (she has lots of friends) not even ringing me up any more. I went round today and she was so quiet, yesterday she took herself to bed for a few hours!

Is this normal?

Her oncology appointment has come through for 10a.m on Thursday. To be honest I am dreading it!

The support on this forum is fantastic and I thank you all for that .

sue x

Hi Sue, She is so lucky to have you as her help and support at this nightmare time--anyone diagnosed with any sort of cancer goes through the nightmare and so does their family so you have all my sympathy--I know several people looking after their parents who have logged on to my site http://www.cansurviving.com and have found help for body, mind and spirit...there are no guarantees here but we are all in this together- This can help as it empowers you and her as well- all very best to you all, Regards, Judith