A forum for people to support each other after the loss of a loved one

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sophva
Posts: 1
Joined: Fri Mar 10, 2017 2:46 pm

Magical mum

Postby sophva » Fri Apr 21, 2017 3:48 am

Hi Everyone,

After a 4 month battle with Pancreatic cancer, we lost our mum this week. She was diagnosed on 29th December after complaining of bloating/feeling full for about a month (that we're aware of, she often kept these things to herself) and following about 10 days of testing we were told she had stage 4 Pancreatic cancer which had spread to her peritoneum. She went through one round of chemo and then had a bowl bypass (we still wonder if this was necessary) and the surgeon said she was riddled with cancer. They also said she wasn't responding to chemo, so they wanted to just get her comfortable as mum was in severe pain right from the beginning until the end.

One thing that I can't help focusing on was that Mum was never prescribed creon and it eats me up inside that I didn't follow up with them on this. It seems to be a basic element of treatment in the UK and I wonder if there were other things like that she would have received in the UK that she didn't here and therefore, we lost out on time with her and she lost out on comfort during her final months. To explain, we are based in the Middle East, and have been for 20 years, so this is home and the medical care generally is very good so we struggled for a while as to what was best for mum (including her in this decision of course) before finally decided on being here as moving back would involve an incredibly grueling trip for mum and also registering with the NHS again, more testing, delays etc. I'm sure it's something I will think about for years to come.

I also don't think the loss has fully hit me yet. As others have mentioned before me, we have been grieving throughout this process knowing that it was a when and not an if and I almost feel like I lost my mum the day she was diagnosed if that makes sense? There is a part of me that is scared that after the funeral in the UK next week, when I come back to the Middle East and all has settled and is still, I will then truly feel it. As of now, it's just sometimes in those quiet moments e.g. just before I sleep at night, that I truly feel the depth of my loss, just for a moment before I control the feeling. Any thoughts and advise on this are beyond welcome.

I just want to end this note by saying my mum was a wonderful person. Smart, beautiful and loving and I just wish we'd had more time with her.

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Magical mum

Postby Veema » Fri Apr 21, 2017 8:44 am

So very sorry for your loss. It's often the case when we love someone who was so very important to us that we look for things we could have done different or should have done. The benefit of hindsight is a wonderful, but cruel thing. Creon is only an enzyme replacement and would have done nothing to fight the cancer...it just replaces the digestive enzyme that the pancreas naturally produces and in the case of pancreatic cancer, it can't produce it properly or at all. It might have made her more comfortable in general, but many people struggle to get on with creon and although it's a necessity, getting the right balance is tricky.

You will learn how to cope with your feelings. It's 7 months since my husband died and I'm only just starting to realise that he actually has gone. In the main, I'm okay, but something will happen, or I'll hear a piece of music, or see something on TV and I'm floored. It's perfectly normal and it's really important not to try and block those feelings...if you feel like having a cry, have a cry...if you feel you want to shout and scream, shout and scream...just go with your feelings. People say time is a healer...I don't know...I seem to feel worse as time goes on, but maybe that's a normal phase of grieving, I suppose it's still early days.

Much love and strength.

Vx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Magical mum

Postby Veebee » Fri Apr 21, 2017 12:40 pm

Hello Sophva....you're having a normal reaction to having lost your lovely Mum. All the what ifs that you feel are usual when we lose someone we love. My mum died over 40 years ago and she comes into my mind every day at some point and occasionally I feel guilty because she was ill for such a short time before she died and I think we should have spotted something sooner but in reality, it wouldn't have altered the outcome. I have these what ifs about my husband who is suffering with this terrible disease.

Veema is right about the creon... It wouldn't have made the slightest difference to the outcome because it's not a medicine but an enzyme replacement. She has also described the grieving process that you will face and that others on the forum are going through. It's sad to read but it is normal, truly.

You will find peace one day but in the meantime you will grieve for your mother because if you hadn't had that love from her you wouldn't be grieving. I hope this makes sense to you, Sophva, and I wish you strength for the future.

Love Vee xxx

Marmalade

Re: Magical mum

Postby Marmalade » Fri Apr 21, 2017 6:14 pm

Hi Magical Mum,

We all feel for you as doubts and recriminations are an inevitable part of grieving. Whatever the circumstances of the death we always feel we could have, or should have done more. It doesn't seem to matter that we do our best with the knowledge we have, it happens anyway. I am sure you did everything you could and like every parent your Mum was proud of you.

It would depend on what part of the pancreas and what other organs were compromised as to whether Creon would be appropriate.

There is one very important fact that everyone should be aware of. The enzyme in Creon is extracted from pigs therefore certain groups cannot or will not accept it for ethical or religious reasons and sadly there is no synthetic alternative.

I wish you well on your bereavement journey which will take as long as it takes. I know I would not like my child to remember me as a sick and weak woman so I hope you have happy memories of a fit and vigorous Mum.

Much love

Marmalade