A Mother in a Million

[welshgirl]

Hello,

My mother was diagnosed with Pancreatic Cancer back in October of last year, they diagnosed here from only the ct scan and an elevated CA19-9 marker. All the biopsies they've taken have all shown up as negative and a biopsy taken of a suspected tumour in the bile duct showed only benign mucosa when she had a stent inserted. Up until then she was in a lot of pain but taking Tramadol, Paracetamol and Pregabalin, a great combination and eased the pain.

My mother is 75 on Tuesday and I just feel that unfortunately with the poor prognosis of PC, that this will be her last birthday!!!! She commenced chemotherapy on the 3rd January, Gemcitamine, and has done really well on it. She has three weekly courses then a week off but has only been able to tolerate two out or the three sessions. Apart from feeling a little tired for a couple of days she has had no other symptoms and her scan shows that the tumour has been stable for the last four months and is due for another scan in approx two weeks, I'm dreading the results!!!

Up until October of last year my mother was an extremely healthy lady, had never smoked or even drunk any alcohol so the diagnosis came as devastating news to us all. Because of the poor prognosis of PC I didnt think she would have seen Easter let alone another birthday but we are now into the 9th month after diagnosis and she is looking fantastic, eating well and keeping her weight. Apart from the fact that she is on chemo and has lost some of her hair, nobody would know that she is an ill woman.

I think my mother is doing really really well, both physically and mentally but I know the time will come when she will deteriorate, I'm absolutely dreading what's to come but try not to think about it too much!!! She is due to have a scan next Thursday and see the Oncologist on the following Monday!!!!

If you take the time to read this then thank you very much, its good to know that other people are going through the same thing.

Nia

[Slewis7313]

Hi again Nia. I am travelling back from a holiday in Spain tomorrow, but will chat more on my return. In the meantime you will find my history under the inoperable section of true life stories. Things have moved on and my radiotherapy is now finished. I expect to have a CT scan appointment around the beginning of August.

Speak soon

Steve.

[LindaH]

Hi Nia,

Welcome to PCUK to you and your mum.

I was taken into hospital with Jaundice and Diabetes in December last year PHEW!! I could cope with that, then my body had other ideas. I'd been poorly for some time with tummy problems, but didn't know what on earth it was. Cutting a long story short I had a CT scan and there it was ..... a 6cm tumour in my Pancreas....Merry Christmas Linda !!

The doctor who was looking after me in hospital (I'll call him doctor M) ....well... he more or less told me that was it, I probably had about 4 months to live. I'm 59 years old, with a loving hubby of 29 years and a beautiful daughter who is 21 and at university. I started to plan for my funeral and I knew I would not see my daughter graduate or never hold a grand child in my arms....we were all devastated.

Thankfully another doctor in the group of doctors (I'll call him doctor B) said to me "Well, we will start you on Chemotherapy". I was stunned, but the other doctor said I could have Chemo, 'if' I thought it was worth it. The look on Dr B's face was one that said it all "Of course you want Chemo".

I started Chemo March 1st. The delay was because the type of cancer I have in my Pancreas is a rare one. I started on Gemcitabine - like your mum - combined with Cisplatin. Yes at first I was poorly, but determine to carry on and I'm so glad I did as now - just like your mum - to look at me, you wouldn't think there was anything wrong. My appetite is excellent, I feel fit and well and the tumour has reduced in size quite significantly.

December last year, all I could see was that I had a past, but no future, today I am determine to make my daughter's graduation and maybe, just maybe I may live long enough to see a grand child.

New trials are coming to the fore all the time, I'll put my name down for all of them....

I wouldn't even think about your mum deteriorating, live life now and enjoy the time with your mum. It's easy for me to say 'Try not to worry' about what's to come. My Oncologist tells me to keep as fit and healthy as I can and that will carry me further down the road.

I will cross my fingers in the hope that your mum's scan will yield good results, but Nia, look forward and don't even think about tomorrow. As long as your mum is feeling well long may she continue.

Like Steve, my story is also on the 'True Life Stories' page.

Take care and ((Hugs)) to your mum.

Linda xx

[Cathy]

Hi Nia

Like Steve I too am on holiday so not online much at all but wated to say hi and welcome to the forum. You will find some lovely wonderful supportitive people on here and the nurses are fantastic. You've probably realised that already of course.

Your Mum sounds like she is doing just great and my own advice would be to try not dwell on what may or may not happen in future or when. The fact she is doing so well now and can enjoy life is very positive and is a time to cherish. Long may it continue! When my partner Jonathan (a strapping fit fella) was diagnosed just before Christmas with advanced PC I would never have dreamt that we'd be here, in July, sunning, swimming and drinking more Mythos than you can shake a stick at (ahem).

Jonathan is a big John Lennon fan and a friend of his texted him post diagnosis in those very dark days and it just read "Give hope a chance" which I thought was wonderful. A message for us all I think.

Take care and post whenever you feel like it.

Cathy xx

[J_T]

Hello Nia and welcome. Sorry your mum got this diagnosis but glad to hear she is doing okay now. Long may it continue. As Whoopi Goldberg said about Patrick Swayze, noone has a sell by date stamped on their backside so enjoy every day as it comes. Long may your mum continue to do well.

Julia x

Cathy, hope you're having a fab time, sounds like it! x

[Cathy]

Hi Julia

Thank you! Super!! Just about to waddle off into town for the day (lol). Jonathan did a few laps of the pool yesterday. He's been slowly building up confidence in the picc line protector. It's so great to see him swimming, relaxing and enjoying himself.

Hope Ray is still doing great

Xx

[Bee]

Hi Nia,

Welcome and I can only echo what everyone else has said, live for the moment!! What will be will be, don't waste today worrying about tomorrow. Like everyone else I have had to learn the hard way, six months ago my husband was diagnosed and my world was thrown in every direction. We deal only in definites and the present, for our family it works. We have just booked a holiday and I never thought that would be possible six months ago. This forum is fantastic and has been a huge help to me, take care

Bee

Cathy, glad the holiday is going well xx

[welshgirl]

Hi Everyone,

Thanks to everyone for their replies, I've been coming to this website for a few months now but was a bit nervous about joining but I am so glad that I did, everyone seems so friendly.

I'm very interested in hearing other people's stories and what all of you are going through, at the beginning you just feel that you are the only family going through this. I've often asked myself why "my mother" but my mother keeps saying "why not me". It just seems so unfair that she has to go through all of this. She is the kindest, lovlies and just the most beautiful person in the world but I just feel so so helpless in helping her.

I am lucky enough to be living just a ten minute drive from my mother which helps me a great deal to know that I am always there for her. I myself work as a Phlebotomist in a GP surgery and one of the GP's in the practice specialises in Palliative Care and is well in with the local hospital. I can be reassured that everything is being done for my mother and she is in good hands.

I think I will need this site and this forum more than I realise during the months to come. I'm positive for most of the time, especially in front of my mother, but I have moments where I cry so much when I'm on my own!!!

Steve - I have read your story and your story sounds so much like my mother's story, I'm glad you are well enough to be on holiday, I'm sure its done you a world of good. Have a safe journey home tomorrow and I do hope that you will get in touch on your return.

Linda - I'm so glad you took the time to share your story with me, it has given me much needed hope. I know every person is different but I was reassured to hear your story, thank you.

To everyone - thank you once again for taking time to read my story, your support and kind words, my thoughts are with all of you.

Nia x

[Slewis7313]

Hi again Nia, I have now swapped the Spanish for the South Wales Riviera. Not sure what specifics you wish to know, but please feel free to ask away. I have returned to find nothing yet from the Hospital regarding my next scan which is fine as I know I will need to wait a few more weeks for my body to have fully reovered from the Radiotherapy.

I'll update my own thread as and when things change, but am happy to help (or point you in the right direction) if you have any queries.

Take care

Steve

[welshgirl]

Hi Steve

Glad you arrived back safely and back to such fantastic weather, hope it lasts!

I've read a lot of different stories on here but yours stands out to me because it is so so similar to my mother's situation, she was diagnosed slightly earlier than you back in October but her tumour has encased some vital arteries like yourself. She has been on chemo since the 3rd January but I am now interested to read that you have had radiotherapy. This was one of the options discussed at the beginning of my mother's treatment, somewhere down the line after chemotherapy. I will be very interested to see the outcome of your next scan Steve, I will keep an eye out for your post on that.

My mother is due for a scan this coming Thursday and then seeing the oncologist on Monday for the result, I'm actually dreading it!!!! I will mention radiotherapy to him and what he thinks about this for my mother, its certainly something to think about anyway!

I was just wondering how high your marker went up to and how much has it come down??? My mother's was quite high at the beginning but has come down to approx 530 and then went back to 1200 and has now come back to 1100. I know its only a guide but I was upset to know that it had started to climb back up.

Its her birthday today so we are going to spend the day together and have a girly day shopping so I'm really looking forward to spending the day with her, I now appreciate each single moment with her!

If you have anything to offer Steve, in the way of any advice or anything, it would be greatly appreciated, I am just so aware that we are now into our 9th month after diagnosis and time is of the essence with PC!!!

I hope the holiday helped with your recovery Steve.

Take care

Nia x

[welshgirl]

My mother had her scan last Thursday and we went up to see the oncologist today for the result but when we got there we were told that the ct scan had not been reported on so he decided to continue with the chemo as my mother had got on so well on it. Because she was complaining of lethargy they did a blood test on her so I was to ring up this afternoon for the result.

I rang them up earlier to find out if she needed a blood transfusion or not and yes she does but also asked the chemo nurse if the scan result was ready. I know the nurse very well and she knows that I work in the local surgery so she told me the devastating news that my mother's cancer has now gone to her liver!!!!!! I AM TOTALLY DEVASTATED!!!!!!!

I rang my mother after I had stopped crying and told her that she needed blood but could not bring myself to tell her that I knew the result of her scan. How could I bring myself to tell her, my poor poor mother, I wanted her to have a few more days of not knowing. She will be told on Thursday when I take her up for her blood transfusion and chemo. I'm dreading how she will take it, I think she will give up after being given the news.

She has been expecting this, so have I actually, but now its here its knocked me for six!!!! She is still well, looking great, has put weight, apart from feeling tired she's surprisingly well.

I went to see my boss today, she is a GP at the surgery where I work, I've worked for her for the last 26 yrs, she specialises in palliative care. I know my mother will have the best care and attention at the end and that gives me a lot of reassurance that she will leave this world with dignity.

I'm not sure if she will ask how long she has left but I know its not going to be terribly long. Has anyone had similar experiences please and could you tell me how long the patients were after it had spread to the liver. I know each patient is different but at the moment I am in a massive cloud and I feel as if I'm about to suffocate!!!!!

If anyone has anything to say that can help me through this then please reply, it will be greatly appreciated.

Thanks.

[Cathy]

Hi Nia

I'm so sorry to hear that your Mum's cancer has spread to her liver. That would have been a terrible thing to have been told but hopefully as long as she is feeling well there will be other options there for her oncologist to look at.

I can't really answer your specific questions about how long suffice to say my partner was diagnosed with advanced PC just before Christmas 2012 and that it had already advanced to his liver at that stage. He's had 8 cycles of FOLFIRONOX since which seems to have stabilised the disease (its still on his liver) and is doing really well in as much as we have just returned from 2 weeks in Greece where we were able to enjoy the holiday as much as if he had not been diagnosed, ie swimming, walking, drinking and eating. The only reason anyone might have guessed he was poorly was the rubber sleeve he wore when swimming to keep his Picc line dry. We try not look too far ahead but have still had discussions about going back.

So I think the short answer is that i don't think you can really say but i think the important thing is that your Mum is still feeling well now.

Sorry I couldn't be more specific but I hope this post gives you some hope.

Cathy xx

[welshgirl]

Thank you Cathy for taking the time to reply to my post its given me some hope that at least its something that she may be able to live with for a little while anyway. My mother has been on Gemcitabine since January but its different from your husband's chemo, I will mention this to the oncologist on Thursday and see what options we have.

I've had a really bad day today, I've been terribly emotional, crying at the slightest little thing but then spent the day with my mother and my son. I'm always very strong in front of her, I have to be but I was looking at her today and just thinking that one day she wont be with us. It totally breaks my heart. She has been the best mother that anyone could ever have had and I'm not just saying that, its so so true.

We took some great pictures today of the three of us, something that we can cherish in time to come. My son is 16 and he is so mature about all of this, he is my rock at the moment, just giving me hugs when I don't even ask for one.

My mother will live on in me and I will follow in her footsteps. I'm just so so glad that I can be here for her at her hour of need.

My thoughts are with you Cathy, your husband sounds as if he's doing ok, please keep in touch, I'd like to know more about how he gets on and how you are coping with it all, I've found writing my thoughts down on here a big help, I don't even care if no one reads my posts, at least its a way for me to release some emotions.

All the best to you both,

Nia x

[PCUK Nurse Jeni]

Hi All,

Nia, I am sorry to hear about your mum. I do hope that she is able to have some further treatment.

We are all aware that there are very strict policies around the Breaking of Bad News within the NHS. Many of these policies are specific to each trust, and have been written on the back of the NICE "Improving Supportive and Palliative Care for Adults with Cancer 2004" guidelines. We do hear of cases where Bad News is not given according to these guidelines, and would encourage all members of the forum to ask about this if needed.

Support Team.

[Cathy]

Hi Nia

Thank you! I'll keep posting. Our next appointment with the oncologist is Monday. At the moment Jonathan is being monitored and we will be chatting about what happens next. In himself he seems super healthy, he's eating well, post holiday tan, glossy coat and wet nose (those last 2 are jokes!).

Plans for today include gardening and a good walk later to a nice pub. I try live for the moment, not think too far ahead or dwell on things as much as it's possible to. And try to stay positive.

How did the appointment on Thursday go??

Xx

[LindaH]

Hi Nia,

I also have spots on my liver, but my consultant said the Chemo should see them off and he's just told me to keep as fit and healthy as I possibly can and he feels my prognosis is good. Okay I may not live to a great old age, but as many years as I can get through would be fantastic to me, plus, never say never ......anything can happen the cure could be just around the corner.

((hugs)) to you, your son and most of all your mum.

Linda xx

[Slewis7313]

Apologies if i seem to have gone a bit quiet Nia, but am using my break in treatment to catch up on all sorts of things and have been in Germany the last week on business (and a little pleasure). The news regarding the spread is obviously upsetting, but this road is not a clear one and who knows what lays around the corner. I too would be interested to hear how you got on at the Thursday appointment.

I now have a date form CT scan on 8th August, so fingers crossed!

You will have seen that I live in Swansea and my family have had amazing support from the local Maggies Centre... If you have one anywhere near(ish) I can thoroughly recommend a visit.

I too am a major advocate of hugging...... It does more for me than any other form of support.

Back home in the South Wales Riviera on Tuesday.

Steve

X

[belgrade]

Hello to you all but particularly to Steve and Nia,

I have recently joined the carers group as my husband has now been diagnosed with PC. We live in the S Wales valley area and I would be interested to know about your experiences of being diagnosed as my husband's care seems to be a catalogue of errors. He was first admitted to our local acute hospital, then transferred to a more specialist hospital in W Wales who diagnosed him with bile duct cancer and sent him back to our local hospital until his jaundice subsided and a liver biopsy could be taken. However, the consultant there referred him on to a specialist centre in the Midlands where he was diagnosed last friday after an EUS. ( sounds vague, but I am aware that I cannot identify hospitals)i understand that PC is often difficult to diagnose and initially my husband was unable to have scans with contrast as he is allergic to iodine, but we cannot help thinking that if an EUS had been carried out earlier in W Wales hospital, he would have been diagnosed much earlier. I have heard of Maggie's centres and understand there is one about 25 miles away from us. Can anyone go there or do you have to be referred in some way?

Hope you all have a very good day,

Hilary

[Slewis7313]

Sorry to hear that your treatment was not up to scratch. I'll respond in more detail later. Maggies is open to everyone without appointment.... Just turn up!

Steve

[welshgirl]

Hello everyone,

Just an update on my mother's progress....we went up for chemo and two bags of blood last Thursday but she had a reaction and ended up staying in hospital until Saturday afternoon! I think it was a reaction to the chemo along with the shock of her scan result, its now gone to her liver and she also has fluid in both lungs!!!!

She is being very brave, I have to say, braver than I would be! The oncologist is changing her chemo and will start chemo in tablet form in three weeks. Has anyone been on these or have had any experiences of this chemo??? One bonus is that she can taken them at home and she wont have to go through the agony of the nurses trying to struggle to find a vein.

She has been staying with me since coming out of hospital, she needs looking after until she starts this new chemo, she is still eating well and looking well but the mornings are the worst time for her, it takes ages for her to get herself up and ready to face the day. As the day progresses, she feels better. She says she wants to go home tomorrow but we'll see, I have to respect her wishes but I worry about her when she's not around.

Steve - I hope you have good news from your scan result.

I hope you all keep in touch, this is the only place I know where we are all going through the same thing, as much as my friends sympathise, it doesn't seem the same somehow.

I'm glad that Coronation Street is bringing Pancreatic Cancer to our screens, I hope more people and doctors are more aware of the signs before its too late for them.

My thoughts are with you all.

Nia x

[welshgirl]

Hello everyone

Does anyone have any information about a chemo that is in tablet form and is taken at home twice a day, I cant remember the name of it now! Has anyone got any experiences of having used this chemo??? My mother is going to start it on Thursday of next week and we have been told that the main side effects are severe diarrhoea (which they will give tablets to relieve the symptoms) and red and sore palms and feet (for which they will give her some cream)!

Any feedback would be greatly appreciated.

Thanks

Nia x

[Slewis7313]

Hi Nia, I took Capeciabine for 5 months (in conjunction with Gemcitabine and Radiotherapy). I had virtually no problems with diarrhoea over the period. The flakey skin on my feet did become a problem, but was OK as long as I applied cream twice daily. I know we are all different, but for me Capecitabine was OK.

I hope your Mother finds the medication as tolerable as I did.

Take care both!

Steve

X

[welshgirl]

Hi Steve

Many thanks for your post, much appreciated. I'm glad you got on ok with it, mum tolerated Gemcitabine very well so I'm hoping she will do ok with this new one, fingers crossed.

How are you doing now??? Have you had any scan results? I'd like to hear from you to see how you are progressing.

My thoughts are with you.

Niax

[Slewis7313]

Hi again Nia. I'm doing really well at the moment and have had 6 weeks of no treatment to allow my body to recover from the radiotherapy. CT scan is next Thursday (8th) so I should know the week after what is happening.... Fingers crossed as ever!

Steve

[welshgirl]

Hi Steve

Oh I'm pleased that you are doing well, I'm sure you are glad of the rest from the chemo. Good luck to you next Thursday, I'll be thinking about you. Mum is also going to see the oncologist next Thursday too to get the chemo to try at home, I really hope she gets on ok with it.

At the moment she is doing really well, slow in the mornings but very good in the afternoons after she's got herself together, she's eating really well and maintaining her weight. Long may it last!

Good luck with your scan Steve, please let me know how you get on.

Thanks again

Nia x