Feeling Alone

[mogs]

She also saw a pain relief doctor today. They've now increased her MST and changed her sickness tablets which is great x

[RLF]

I know the feeling of wanting to ask lots of questions but not knowing if you are allowed to. Ask your mum if she minds you asking questions or if she would rather not know things and if she says she doesn't want to know then you have to accept it and just help her as she needs. The nurses on here will be able to answer a lot of your questions in a broad way, nobody is the same and they won't have every piece of info in front of them but they'll be honest.

The Folforinox chemo seems to be again different for each person, so hopefully she'll be one of those who don't suffer too much. It seems to work quite well for people though, but sadly isn't a cure. You're never alone though, any time you feel it just think there are lots of us out there feeling the same way. People are willing to help in their own ways, and the Macmillan centers are great to drop in at and have a chat (or spontaneous cry if you are me) when you need them. There are lots of things to help if you want to use them

Hope things move forward more smoothly for you,

Rob

x

[mogs]

Thank you Rob. That's so kind and helpful. I wanted to change the title of my post to 'feeling calmer' but don't know how to!! I honestly think she doesn't want to know and I have to respect that. It's so hard accepting that there's nothing we can do. I thought I was coping well until I had to return a parcel in a store at the weekend and found myself crying in the changing room as everyone seemed to be out shopping with their mums! They must have thought I was mad!! I can't believe the strength of the people on his site and the continued support that you give whilst we are all going through a horrendous time. It really does teach you to appreciate the little and important things in life x

[Cathy]

Hi Cara

I know you feel that you can't do anything and ultimately with the diagnosis you may not be able to but your advocating for your Mum as you are will make a huge difference to her. I have often said that I wonder how people manage to navigate their way with this disease without loved ones fighting for the very best for them so keep on keeping on!

Cathy xx

[PCUK Nurse Jeni]

Hi Cara,

Sorry to hear of the roller-coaster you are going through.

Just a few things to clear up - Mark is right about not always being able to do a biopsy. When a person is known to be operable, then you don't have to have a biopsy, but go straight to surgery. However, it is NOT possible to tell what type of tumour a person has by doing a scan. This can only be told by taking some tissue,and examining it under a microscope, and by staining it with different things to check what reacts. They also slice the tumour down into very microscopic pieces to examine on slides, and only then can they say 100% what TYPE it is. However, 90% of pancreatic tumours are mainly of one type - adenocarcinomas. You can possibly crudely determine if it is a different type by the persons symptoms, and by doing blood tests. But, tissue must be examined for a histological diagnosis.

Chemo - I would doubt that your mum would be able for Folfirinox chemotherapy. Chemo is given based on a performance status scale, and the person needs to be very fit to have this triple combination. But, that's not to say that other forms of chemo are not effective - Gemcitabine has been the only drug around for many years - it is only in the past 2-2.5 years that Folfirinox came into clinical practice in the UK. And chemo can work well, especially on the symptoms of the disease, so don't lose hope at all. Chemo is usually given for 6 months, with a scan half way to determine if it is working. If it is, they carry onto 6, if not, they may well give another drug.

I hope this helps?

Jeni, Support Team.

[mogs]

Thank you Cathy. That's so kind. I love that phrase and will keep on keeping on.

Jeni- thank you so much for taking the time to reply an explain all that to me. It really is appreciated. I spoke to mums oncologist today who answered some questions that I couldn't ask in front of her. It's so hard accepting that we can't do anything for them but I will support and fight this all the way with her. Already I can feel how much this has brought us closer and I will treasure the time we have left. Thank you again for all the support. I am so relieved to have come across this site and you have already helped in so many ways

Cara x

[welshgirl]

Hello Cara

I've just been reading your posts and they are just like reading my own story last year. My mother was diagnosed with inoperable PC back in October 2012, she too was a healthy lady until she started to complain of pains in her side and radiating to her back. I was totally devastated at the diagnosis!!! Sadly mum lost her battle last October, she lived a year and a week from diagnosis but was brave from day one!!!

She was 75 but a young 75 and not only did I loose my mother but I lost my bestest friend in the whole world!!! I miss her SO much!!!

I feel for you with the journey you are going on. My advice to you would be to stay strong, cry when you are alone but stay strong in front of your mother. Most of all I would tell you to cherish each second you have with her, being there for her now will give you the strength to carry on. Your mother will live on in you!!!

Best of wishes

Nia x

[mogs]

Oh NIa thank you for posting that- especially after losing your mum in a similar way. You are so right. We are very alike and she too is my best friend. We do everything together which is why this is going to be so hard. Goodness knows how often we text each other in a day! I'm trying to stay strong but its the speed of his disease which frightens me. I just can't imagine her not being there. She's well at the moment- her pain relief has improved so going to make the most of being able to do things with her. She actually looks the best she has in months (which is crazy knowing what we now know). Thank you again for your message.I hope that you are still staying strong and cherish the wonderful memories left behind.

With love cara x

[welshgirl]

Dear Cara

Mum was very well for 10months, she had good quality of life even though she was having chemo, she tolerated it well but both her and I knew right from the start that he battle would come to an end one day!!! She used to be a nurse so knew full well what the outcome would be. I also knew it but never actually thought or didnt want to think that the day would actually come!!!

Most of the time I was a realist and because of that I made sure that mum and I made the most of every second we had together. As we live in a seaside town I would take her down to the harbour in my car and we would just sit there chatting away or sometimes just sit quietly BUT enjoying each other's company. Mum and I were the closest and because of that I dont think I'll ever get over loosing her. With time I guess I have to come to terms and move on but mum will always live on with me and in me!!!!

Remember to take plenty of photos Cara, videos and whatever else you can just to look back and cherish what you had with her, they will be so precious to you. I am now thankful that I had the best mother in the world and that I was lucky enough to have her until she was 75, some are not that lucky!!!

Pancreatic Cancer is a fast mover but I took the decision to look after her in my home until the end. I know this decision is not for everyone BUT its one I took and now can look back and be thankful that I did my very best for her, she deserved the best!

I dont know what your circumstance are Cara but I was lucky enough to have a supportive husband and GP (I work for her). You have to be realistic about what going to happen and wherever possible just talk to you mum about what she wants, its so much easier for you to know what she wants and doesnt want.

I will be keeping an eye out for you Cara, I really do feel for you as I have been through exactly what you are going through, my heart goes out to you. If I can be of any help to you or if you would like to ask me anything, please feel free to do so ok, I'll be here.

All the best

Nia x

[mogs]

Dear Nia,

Your message has touched me so much. I cannot believe that you have taken so much time to respond. Thank you. She starts her chemo on Wednesday so we're taking it from there really. See how she responds to it and how much she is able to do. We're a very small, close family and my 2 sons adore her-as she them. My husband is very supportive and is saying'do whatever you feel you need to-i'll be there' which I am so grateful for.

We actually spend a lot of time in West Wales(her chemo will be based in Cardiff)and like you will be grateful for the peacefulness and time that we can spend together there.

I lost my brother 12 years ago (leaving me an only child) so i can understand how difficult it is to move on when you've lost someone so close. You sound as though you're a strong woman and your mother would have been so proud of everything that you did for her.It takes a long time to heal but they do live on in and through you. My niece only has to say certain things or give a certain look and immediately, its like he is back in the room with us! I will keep talking to mum and follow her wishes but i too want to look after her as much as i possibly can. It's almost like the last big thing i can do for her. Does that make sense?? Again, thank you so much for offering your advice and support.I very much appreciate it.

with love and strength

Cara x

[Cathy]

Hi Cara

Very best of luck for Wednesday and the chemo starting.

Nia, lovely to hear from you again. I hope you are managing ok.

Cathy xxx

[mogs]

Thank you Cathy. Will let you know how it goes.

[Guest]

Cara,

How is the chemo going? I think you are doing so well. You standing your mums corner and that is what she needs. How are the hospital staff, are they keeping you informed? Are they telling you everything you feel you want to know? If not, call, call and call, until you have your answers.

Hope your mum is coping with the chemo and doesn't have too many bad side effects.

xx

[Jwilson]

Hi Cara/mogs. So sorry to hear and read about your mum. With this illness for some people pain is not the biggest symptom they experience. As far as my husband was concerned pain was our number one concern. There were nights when he was screaming in agony. Get the out of hours doctor if it gets really bad. You just have to to get relief. There are morphine based drugs. Slow release...OxyContin taken night and morning and the dosage can go up and up and up so don't worry about the numbers you are hearing. At one stage Bills dosage stepped up every day for about a week until we got it under control. Also we had oxynorm for breakthrough pain plus two paracetamol every four hours. Ask the GP to get you a hospice nurse to help. They know all there is to know about pain relief and our nurse was simply amazing. Take all the help you can get. Ask for the drugs that you hear or read about as you should not have to watch your poor mum unable to sleep and in pain. If the pain runs to the back it's travelling along a nerve and there is another drug for that. I'm afraid I forget its name. Maybe your mum could have a nerve block treatment to relieve the pain? It's done by endoscope. Ask them about it anyway. What's the chemo? Gem/cap? If so it just makes you tired generally, not sick. I hope you are coping ok and that your mum is getting better care now

June