Mum

[nickjw]

I haven't contributed to these forums before, although I have looked through over the past few months and contacted PCorg directly and have found both the messages in the forums and the information from the organization supportive and inspiring.

Mum was diagnosed, at the age of 63, with pancreatic cancer last July following about a year of bowel trouble which she finally insisted be checked out by a scan rather than taking different IBS medication after every GP visit. She immediately began a course of chemotherapy which lasted until November, which at first seemed positive - the chemical trail that they look for in assessing the tumor's activity had dropped faster than they though it would and there was no spread into any other major organs; however she was told following a scan after the therapy ended that it had not been successful enough to justify the damage that chemo puts the body through to continue.

During November she was hospitalised twice, first because she was not taking enough food and then for bowel problems. The second time, although we thought she would be out in a few days, she remained in hospital until just before New Year. At that point we were told that her time left should now be counted in weeks.

Mum and the rest of us were adamant that she be moved home for the remainder of her time which was duly done, and she passed away in the early hours of the 18th.

That's all the technical stuff and dates. I still feel like I have to separate the timeline from the emotions involved - over the past six months there has been so much to absorb and then to explain to other people, to try and remain positive about but remain realistic at the same time. Also to take on the strange way that people around you react - from avoidance to premature grief to some of the most amazingly inappropriate things (eg. 'well, it's better then them going in a car crash - at least you get to say goodbye'!)

I remember the moment that it came crashing in - Mum and Dad had been down to Cornwall for a weekend away during a break in her treatment and she told me about how they had to make sure there was a hospital nearby, how to get there in a hurry and the card for her to carry stating she was under chemo and had to be seen immediately in A&E. Up until then, because she still looked healthy and was still the same person in herself, it never hit home that the rest of her time would be like this - in fact, this was probably the most minor inconvenience she would be subject to. The amazing thing was that I think she was the strongest one out of all of us in dealing with it, she made her own service arrangements and everything and was always worrying that my sister and I were taking too much time away from our own kids to be with her. Up until her last hospital visit she kept her sense of humour and concern, but from that time she started to drift away under the weakness from the cancer and the various drugs she had been given. At one point she needed a stent put into her stomach and she was given a course of steroids to held it - this set her slipping in and out of consciousness and making little sense when awake. But happily I managed to tell her many times that I loved her, that we would never let our kids forget their Nana even though my youngest daughter and my niece had had so little time to know her (one of the biggest tragedies - Mum had looked forward for years to being a Nana), and that we would look after Dad. She also managed to be alert enough to sit up and cuddle her grandchildren one last time when they came over after Christmas to see her at home.

My memories of Mum are very confused at the moment, years and years of memories clouded a lot by the past few months, and I have trouble reaching past the recent events to the times before. I know I can do this by looking through letters and photos but can't do this yet. The support of friends and family has been absolutely amazing - you really get to know who your friends are and come to appreciate them so much more in adversity.

I know this post is very confused and muddled, sorry if I have been rambling. I don't know what support it can be to anyone. All the advice I can give for anyone who might be going through this would be:

- Don't be afraid of asking questions. Although the medical professionals know what they're doing they rarely have the time to explain many things fully, but they are there to help you.

- Do as much as you can to create as many happy memories as you can early on, before incapacity and weakness encroaches. You will have time to be there for the helping, visiting, lifting, feeding etc. but don't waste a moment of the time you have left with them.

- Quantify the guilt; after spending a week with Mum and Dad at their home I was due to leave that evening, and the doctor (at his best estimate) said he would be very surprised if anything were to happen that night. I went home for a much needed cuddle from my wife and girls, and Mum passed away at 6am the next morning. For a few days I was angry at the GP and myself, before realising that I could not have done anything were I there, and that Mum would certainly not have wanted me away from my daughters a moment longer than I had been. So although it was really unfortunate and I feel guilty, I know it was the right decision at the time.

- Know when it is time for treatment to stop. I am forever grateful that Mum spent her last few weeks at home, in a bed set up by the back windows looking out on the garden that she loved and the pheasant that came to visit the garden every day rather than in a hospital room.

- And finally, as mentioned above, always remember that the strange way that people act and the odd things they can say come from concern to you!

I can't give any advice as to coping with grief I'm afraid as I don't think I have reached that stage myself yet - but I would strongly recommend reading through the other contributors on this and other forums on the site as there is a wealth of experience and support here which is a valuable thing to have during the difficult times.

I wish anyone who is going through or has gone through this all the strength and best wishes I can.

Nick

[Nardobd]

Thanks for telling us about your Mum, Nick. She sounds like a wonderful person. Please feel free to post more if you think it might help you.

Wishing you strength.

Nicki

[louiepc]

Hi Nick

Thank you for posting, there are so many similarities to what has happened to your Mum as to what happened with mine, I am on the verge of tears reading your post, I cannot believe in this day and age that so many people can have this horrendous disease, and it gets misdiagnosed time and time again.

My Mum's funeral is on Thursday, my emotions are all over the place, maybe because it's been a long time to wait, but I feel like I was just before and after mum died. Feeling sick with worry, crying a lot this week etc etc. I think I have been in a state of denial too, I have been so wrapped up in organising Mum's day, and looking after my Dad, plus my own family too, that it's felt like Mum has been on a really long visit to hospital or somewhere like that and I have "forgotten" to visit her. But this week I have to face up to the fact that mum isn't here anymore, I have to say goodbye to her, and acknowledge the fact that I will never see her again.

I hope that you find some help and comfort from the forum, keep posting.

louie x