Both Carer and cared for.My Story.

[richiebirch]

Greetings All

In December 2000,our wonderful Mum was diagnosed with PC.She had a "whipple" in January 2001,but unfortunately passed away in the September of that year.She left 4 children of which i am the oldest,and a devastated husband.Throughout this painfull journey Mum displayed incredible courage and continued to support us untill the end of her life.Knowing that time was limited, I took time off work to be with her as i had moved away from home some 20 years prior to another part of the country.This proved to be one of the best decisions of my life,as the time spent with Mum, and brother and sisters,although incredibly emotional has stayed with me to this day.By the end of her life,nothing had been left unsaid,and we promised her that we would remain close and support each other. Now i know some of this may sound a bit "gushy" and everbodys circumstances are different.I am not an OTT type of person,but firmly believe that the time we spent helped us as part of the healing process. We didnt ignor the "medical framework" in which we were living,but we didnt burden ourselves with the neverending search for answers/cures.If Mum wanted a few gin and tonics then why not.She passed away very peacefully in the local Hospice on Sept 10th 2001.Mum told me that she was never affraid of dying,but "heartbroken" that we couldnt have longer together.We made every minute count.

My story would have finished here, and i would have concluded that we have remained very close as a family and Mum is never far from our thoughts,however I became unwell in 2009,put it down to turning 50!. I had been off work for 5 weeks,blood levels everywhere, nausea, and itching, GP sent me for ultrasound. Mentioned Mum, but everyone sort of indicated it would be a one in a million chance. Started back to work,still not feeling right.Watching the Rugby on the Saturday night,suddenly expierienced extreme abdominal pain which lasted untill the Sunday night.To cut it short-went to Hospital and diagnosed with pc (ampullary).Required futher tests/scans to confirm and as i live in North Wales was refered to xx.Tumor removed succesfully Sept last year (whipples) followed by 6 months of chemo. Not the most pleasant of journeys,but 12 months on I feel well and tests negative.Traumatic time for family again and difficult to believe. I lost 4 stone, but have thankfully regained 2 of them. I can eat what i want with the aid of Creon.I have a wonderfull partner,and was fortunate enough to be able to retire from 30 years in the NHS. I am not as fit/active as i should be!!,still occasionally drink too much !! but feel blessed to be alive and recognise just how wonderfull people can be.

I have a long way to go,and ive known about PCUK for a long time but been to frightened(if it makes sense!) to tune in.

I am so glad i did. I have read so many of your stories and feel humbled by some of the pain and suffering expeirienced by you or your loved ones.Everone is different,I have elected not to seek information other than what i need to know in order to suvive. This has worked for me,but know many others will seek different ways. God bless all of you. Live for every day

Regards Richie

[Nardobd]

Thank you for your post and sharing your story Richie. I hope you continue to stay well.

Best wishes

Nicki xx

[lynbo]

That story is an inspiration, I hope you continue with a great attitude and zest for life.

It shows that early detection is the key. xxx

[Ellie]

Hi Richie

What a shock that must have been for you, after all your went through with your Mum, to find you had PC, too. So pleased to read that you are doing well and have such a good attitude towards everything.

I hope you continue to do well and enjoy your retirement to the full. Thanks for telling us your story and hope you will let us know how you get on in the future.

Keep strong and positive!

Best wishes

Ellie

[Margey]

I have been a lurker on here for a while but never known quite what to post when people are going though such a torrid time with this awful cancer. There have been so many sad situations and as a four year survivor I haven’t felt that I had the words for you special people.

Then I read Richie’s post and could not believe what I was reading. It was a mirror one to my own. My Mum was taken ill in May 2000 and diagnosed with pancreatic cancer with no hope of treatment. I took time off teaching and went home (200 miles away) to look after her. As Richie said those times were very precious and I would not have changed a thing. My daughter was doing A levels at the time and after she had finished Mum expressed the wish to come to the Midlands to be in my home. Dad could not understand why he needed to bring a suit but Mum knew he would need it for her funeral. What a journey that was but Mum was here for three weeks before gently slipping away exactly three months after she was taken ill. She was 82 but we had hoped for more time with her but she is forever in our hearts and the knowledge that we had all been there for every inch of the way did help to ease our grief. We had great support from macmillan nurses and our district nurses.

In the early summer 2006 I had occasional gutache and at times did just not feel right.initially I thought I has eaten a dodgy chicken casserole! My dad came up to stay for two weeks at the end of June and said that he really did not want to go home. We always said. that he had a home with us so in the school holidays I took him to Kent to pack up his home and began being violently sick and my urine changed colour. Thgen there was another awful journey up the motorway. Things moved very quickly thanks to my GP and after initial tests I was diagnosed with a tumour in my duodenum and was seen by the Liver Unit in xx. It was when the surgeon began talking about pancreatic cancer and the odds in surgery that I panicked and saw my life disappearing in front of me. But I had a whipples, was sent home eight days later (very scary) and then had 6 months chemotherapy. My husband was a star looking after me and my 91 year old Dad. I tried to return to school a year later (just after my dad died ) but only lasted 10 weeks. It was all too much- such tiredness. So here I am a four year survivor of ampullary cancer. It has been a roller coaster ride with some very scary bits. I still get weary and take creon but hey I’m here and three months ago became a grandmother. Every day is an absolute blessing and I try to treat it as such. My family and friends have been wonderful along with the local medics and the staff at the liver unit.

Thankyou Richie for giving me the way in to posting. My love goes to all you special people who are dealing with the harsh realities of pc.

Margey

"If but one person hath breathed easier because you have lived!

[richiebirch]

Nardobd wrote :

> Thank you for your post and sharing your story Richie. I hope you continue

> to stay well.

>

> Best wishes

> Nicki xx

Thankyou Nicki xx

[richiebirch]

Hello Margey-Like you,i,m taken back with the simalarities in our journeys,and how wonderfull to have reached 4 years and undoubtedly many many more to come!!.This time last year i was about to start the chemo.I had lost and continued to lose alot of weight,my wound had opened at both ends,and i had developed extremely painful "piles"!!. My goal at that time was to make it out of the winter into spring and summer.Like you its a rollercoaster of a journey and its not always easy to remain so positive. Ihad a phone call from a friend on Wednesday,I know him through his wife,who I worked with for many years.He had "whipples" to remove tumour seven months before me.Both him and his wife have been and remain a wonderfull line of support for me. Unfortunatley,he told me that after his last scan/bloods there was evidence of new activity which they would not be able to operate on.Im so very very sad,and cannot find the words to say how sorry i am. We had sort of been through this together and have been able to laugh along the way.

Your post has lifted me and thankyou so much for getting in touch.It would be lovely to here from you again,hopefully we'll be at this in 20 years time!!

Regards and LOL

Richie

xxx

[Margey]

Hi Richie

Thanks so much for getting back.I can empathise with short term goals such as getting from winter into spring. For a long time I could only look a little way ahead because anything too far ahead made me question if I would still be here for it. This was the case when my eldest daughter set a date for her wedding 9 months ahead. That was a very special occasion to still be here for ! By the time she was pregnant I had moved on and found that I could think more positively and look forward without the “ if I’m here” thoughts. It has been a case of taking baby steps all the time. Having said that I have always tried to think that someone is the lucky survivor of pc so why couldn’t it be me? It can however be a lonely road – no cancer is good but at least with breast cancer for instance there are lot of support groups.

I have also become quite good at putting me first. I still do a lot for others but I try very hard to pace my days and if I am too tired to do something I don’t - true friends understand. ! I still do the important things even though I know sometimes I will need time after for some r and r. In the last three weeks I went to Dorset for a week with my husband, then went to visit a friend in Glasgow (it was her half term) and then this week it has had to be a very quiet one!

Like you I have generally found it easier dealing with only the medical information I need to know about. In February my consultant said that he would not see me for a year which was a bit like having one of my props kicked away, even though I know I can ring if I’m concerned about anything at all. So I did ask him about survival odds and he told me that they were finding them much better in ampullary cancer. That was good news but one maybe they could have shared earlier!

Now for the more difficult bit- your friend. That is so very, very sad and I can understand how difficult it is for you both because of not wanting that news for him and with your pc as well. Hugs can say mountains and hopefully once you have spoken to him it will be easier and you will still be able to laugh again with him. He is probably finding it really hard knowing how it will affect you too. My thoughts are with you both.

It will be very good to keep in touch. I like the idea of still doing it in 20 years time!!

Love and hugs

Margey

[PCUK Nurse Jeni]

Hi Richie and Margey,

Both of your stories are so inspirational.

Long may it be so!

We are looking forward to the first study for survival launch this week.

best wishes,

Jeni.