My Amazing Mam, Advanced, Devastated. (1)

[Ella50]

Im new on here, I thought Id tell our story about my wonderful mam, who is 62yrs young. It started in Nov 2011 where she noticed a dragging pain in her stomach. By Jan 2012 the pain worsened and was now in her back, she also noticed a 'butterfly' sensation in her stomach. She was back and fo to the doctors for the next three months with these symptoms..also telling them that shes not sleeping, losing weight and off her food. Didnt realise how much pain she must have been in, as she couldnt concentrate to read for mnths and never slept for long in bed.. Doctors couldnt find any problem, they put her on a waiting list for the magic eye- 6mnths waiting list??. The pain got so bad that she went private.. so in April, she had an ultrasound scan which showed a tumor on her pancreas and they could not operate!! Devestated doesnt cover how we felt, if anything my mam thought at least she may have some sort of operation... that could have given us some hope.. That 10 mins in the hospital with them, i will never forget.. it will stay with me forever, like slow motion..seeing my dad breaking his heart and my mam in tears. I knew our lives had changed forever.

Not long after that she developed dvt in her leg. So distressing watching her trying to walk around on top of everything else..

Now under nhs..she had her cat scan results May 2012.. the tumor, which they said was 3 cm, has now spread to her liver.. and was given months!!! How can this be!!?? It still feels so surreal, i'm mostly in a world of my own...fine one minute, in bits the next.. My dad is lost, eventhough my mam is the boss lol, she has done everything for my dad. Its heartbreaking. You wouldnt wish to meet a more kind and caring person, my dad too, they are the most amazing parents, and nothing has ever been too much trouble for them.. They've doted on me and my younger sister. I also have a daughter 24yrs and my nephew is 6yrs, their two eyes. We have been their world. And if I havn't seen my mam, which is mostly everyday, I have spoken to her on the phone.

What seems like a few months ago she was so lively, out and about in the car, doing the normal things and now shes so fragile, gone so tiny, its just so heartbreaking to see..

She is now tired alot and sleeping alot more, but doing her best to eat as much as her condition allows her. She has very little energy, and is very tired just walking up the stairs to bed, even washing her hair now my dad has to help her ..it is just so frightening, it breaks my heart.

Shes on morphine tablets and paracetemol now which is helping with pain, so have helped her eat a little, tho her tastes have changed and she is craving some odd things lol- food and drinks that she would never have looked for before, is this normal....

Her pain seems to be worse in the morning for the first couple of hours..

Nurses have been out to see her and we have contact tel numbers we can ring.. A nurse also comes out to inject my mam in her stomach for her dvt, every morning.

We hope to know more about treatment at her First Oncologist meeting next week 15th June.. Wondering if they try chemo with everyone? or what treatment she may have if she doesnt have it..... fingers crossed they can help!!

My mam is def keeping us all going- ordering new this & that, wanting her flower baskets up as normal.. Can you beleive she keeps saying that we wont get rid of her that easy, and for us to keep positive !! - Even now she is still helping us all !! Her mental strength is amazing, better than ours!!

This is an absolute nightmare. Im in bits.

Thankyou for listening, this seems like such a lovely and supportive site.

Will let you know how our oncologist meeting goes.. Love to you all.. My heart goes out to everyone effected by this terrible terrible disease xxx

Edited August 15, 2012 by Ella50

[ali]

Hi Ella

Sounds similar story all the time--very vague symptoms and on going.

Actually one year tonight since my mum died from PC .

She was fit 79 year old-- golfing ,driving and watching youngest grandchildren--baking etc.( Feb last year )

Then felt unwell last March/April

Just try and get the best care you can and ask for info/updates all the time.

And spend precious time.

This is the most horrific disease, I do think my mum passed away very quickly and avoided a lot of the awful symptoms that I have read about on here

Helen

Xx

[rachelqt]

Hi Ella,

Im so sorry to read about your Mum. I totally understand how your feeling and sadly life does seem to change forever.

I think it really helps if you feel positive and especially our loved ones with PC.

To me it seems quite positive that your mum has a meeting with an oncologist, the consultant might think that it could be of benefit for her and referred her. I have read some stories were people are not given any treatment options, so hopfully your mum will get offered Chemo. If you look back on my posts I have one on First Meeting with an Oncologist, you might get an idea of what to expect.

My dad (61) was diagnosed 10 months ago with advanced inoperable PC, given a prognosis of 6/12 months, he was so ill and weak we thought he was never going to cope with chemo but after 4 months of it he is doing very well, we can hardly believe it!! My view is that they always give you a prognosis based on statistics and usually worse case scenario, so i always like to think that my dad will go above the statistics and hopefully your mam too!

This is a great forum for advise or just a chat if your feeling low..Please let us know how your mam get on. Wishing you all the very best of luck for the 15th.

Takecare Rachel xxx

[Ella50]

Hi Helen.. Thanks so much for your reply.. Im so sorry to hear about your mum.. Its good to know you can always find comfort and support on here..

You can take comfort in your mum didnt suffer too much thats all we can hope for our loved ones with this disease..

While Im not ready to give up hope, it does prepare for how fast things can happen.

Your so right, and will try to make every day matter and spend as much precious time I can with my mam..

My heart goes out to you.. Ella xx

[ali]

Hi Ella

You are welcome and thank you too for your thoughts.

I have just noticed the numbers have gone up from 825 to 830 from this morning for new members,I am sure when I joined end of June 2011 they were around 620---really frightening increase.

Helen

X

[Ella50]

Hi Rachel.. Thanks for your reply..

Hearing from people that are going through the same thing really helps

I have just been reading about your first oncologist meeting & it has helped alot ! I am much more positive now that my mam has even been referred.

I guess they really do give you the worse case and even when they give you statistics, everyone is so different..just reading your fab story is the best example of that..

Like your dad was- my mam is very weak and just now we cant imagine how she would cope with chemo.. but reading about your dads progress has made my day, you must be so thrilled and I am so happy for you!!!

I keep looking for any positivity and your dads story gives just that! .. may he continue to improve!!!!

My mams mental strength is unbelievable, I just hope that this is half her battle and she is already half way there treatment wise..

I just wish things could have moved faster & were now moving a bit quicker in regards to starting any kind of treatment that I hope they'll be able to offer..... will keep you posted.

I'm just doing anything I can to help out right now..

Even now Im on pins waiting to see my mam again..

I rush up to see her a couple of times a day, and want to be with her all the time.. and when I come home I just want to rush back up again.. I see her as often as I can..

Fingers crossed for 15th ..Thankyou so much for your support!.. Ella xx

.

[spongle15]

Hi Ella,

I am so glad that you have found this amazing site... I discovered it almost exactly a year ago when my Dad was diagnosed, and I found amazing comfort in it at the time, everyone is so truly lovely and supportive.

I know that feeling of trying to find a glimmer of hope in others' experiences, and the fact is that there are examples such as Rachel's out there. It is so important to believe and have faith; keeping positive helps everyone involved.

Devastatingly my Dad died last November, 6 months after he was diagnosed. But...in many ways it was the most amazing 6 months I could ever imagine, and although I have been left in bits by his death, I spent so much incredibly precious time with him in those last 6 months, I just feel incredibly lucky that I had that...

Dad spent the last few weeks of his life in our local Hospice - they were absolutely amazing, and despite the pain he was in, he smiled and was truly happy right until the end, and as family we were able to be by his side loving him, and spending quality time with him... rather than worrying about the practicalities of 'caring'...I miss him so much.

My brothers and I have organised a sponsored walk this summer in memory of Dad, and are taking his ashes with us, at the end of it we will scatter them at sea - Dad loved sailing... check out my post from last night for more details.

I send you much love at this time, look after yourself as well as those around you.

Emma xxx

[Ella50]

Hi Emma..

Im so sorry to hear about the loss of your dad..

Thankyou so much for your kind message.. Its reassuring to know that you can still find comfort in this wonderful site.. Im so glad I found it, if only a few weeks ago, I think now that I'd be lost without it.

I am always as positive as I can be with my mam, and will never lose faith, no matter how much this awful disease does test you at times.. The most positive is my mam, bless, she is keeping us all going with her strength... her strength is amazing and she is always ready and willing to try everything that is asked of her and keep as up beat as

she can, always smiling- like your dad, no matter how weak or how much pain she is in, always with a smile.. T

I am still trying to find as many positives out there that I can...

Still hoping.

Its so lovely to hear just how amazing those 6months were with your dad..

Thankyou for giving me hope that your dad was always smiling to the end.. and you were still able to make amazing memories.

He had amazing care and on the few occassions we've met with the nurses and doctors from our local hospice, they seem so wonderful so far..

I have posted on your previous post about your walk xx

And regarding my mams first oncology meeting, am posting that later..

My heart goes out to you, with lots of love & best wishes

Ella xx

[Ella50]

Hi all..

Well my mam has just had her first oncology meeting and was told that due to her liver damage she cannot have chemotherapy at this time, as it will make her very ill and cause her to over dose with the build up of toxins.

The Oncologist seemed surprised that she doesnt spend any time in bed during the day, and still manages to potter, if only to the kitchen a couple of times.. bless her xx

She's been prescribed steroids for 2 weeks.. and then must go back to see him July 2nd 2012..

I dont know what to make of this - good or bad .. a few questions are going around in my head as to what the aim of the steroids are for...

..to help the liver, or for pain or appetite, or to help towards chemo! anyone understand this please?

Thankyou for listening..

Love to all

Ella xx

[PCUK Nurse Jeni]

Hi Ella,

Have sent you an email direct.

Kind regards,

Jeni.

[NICOLA]

Hi Ella, hope your ok. My mam's chemo didnt work, in fact her cancer spread to liver/lungs, we were told that the chemo only has a 15/20% chance of working, so she went throught the five weeks of chemo for nothing. She's now at home and has had 2 weeks of steriods too, it has increased her appetite a little.

Hope you and your mam get lots of happy time together.

xx

[ali]

Hi Nicola

glad you have your mum at home

Take care

Thinking of you

Helen

Xx

[Ella50]

Jeni..

Your reply has helped so much, explained alot

Thankyou!

Ella xx

[Ella50]

Hi Nicola..

Hope your doing ok, same similar stories.. whereas your mam tried chemo, we're not sure if my mam is able to yet.. so sorry it didnt help.. your mam was able to give it a go and tried her best, thats all we can ask for, thats what I know my mam would do.. we already know its spread to my mams liver (sigh) what a nightmare this is.

Its good to hear about your mams appetite, Im hoping for that too & hopefully will make them stronger and have more energy

keep strong & enjoying precious time

Ella xx