I’m at a loss and need some advice and guidance

[May888]

My mum who is 73 and has blood pressure and is diabetic, was complaining discomfort and stomach pains beginning of January. Finally got to see a gp and they referred my mum for a ct scan mid February. Got the results of the ct scan 3 weeks later. Told that on the ct scan showed a mass growing on her pancreas and there is lesion on her liver. The gp referred an urgent referral to the hospital to investigate further.

 

Come mid March my mum had a blood test in the morning, then had a call from the doctors the same day in the afternoon that my mum needs to go to a&e urgently. Doctors said her hemoglobin levels were dangerously low. Danger level was 70 and my mum was 74.

 

my mum has been in hospital for over 4 weeks. During those 4 weeks, she had stomach ulcer, 2 blood transfusion, caught covid, had endoscopy and mri scans. Found out few days ago that she has pancreatic Cancer and it has spread to liver. Now the consultants are having a meeting to decide how to proceed with my mum, and we are now waiting for their decision. 

 

having read the internet, and speaking to the nurse on the pancreatic cancer charity, it sounds like it’s not operable as the cancer has spread, and radiotherapy is not an option as it’s spread. There is no cure. So Chemotherapy could be an option. Am I correct on this?

I know the survival rate is low, but how long do people survive for?

 

Im so scared and worried, as I’m so close to my mum. I’m at such a loss right now. Consultants and nurses don’t answer their phones when I call. The hospital is so busy and understaffed, so I don’t always get an answer. I’ve cried everyday since finding out the cancer has spread. 
 

 Can someone give me some guidance or advice on what might happen and what could I expect happened. Thanks 

 

 

 

[Floofmom]

Hi Mav888, what a horrendous situation to be going through.  Hugs to you.  It's a huge shock and I am sure you feel completely overwhelmed with everything that is happening.  It sounds like you are doing all you can to find out as much information as you can.  Personally I would rather know facts so I can process things than have people offer me sugar coated maybes. The hotline to the nurses on this group is great and it sounds like you have already used it.  Every case is different but I found it really helpful to look through the forums for similarities and it has helped me to know what to expect to some extent.  My mum is 83 and type 2 diabetic and was diagnosed in December with PC which was also in her lungs.  Rightly or wrongly (I suspect some decisions may depend on age and postcode) she was firstly advised against chemo due to the probable side effects and that it would probably only add an extra month or two on.  When she went back the following week to discuss her options she was told she wouldn't be offered chemo anyway.  We don't know exactly why but it could be due to it also being in her lungs or that she often has bad reactions to medications.  I think it would be fair to say that you may be best to speak to your mum and weigh up quality of time versus length of time and see what she is thinking.  It's a hard decision to make.  For my mum the option was taken off the table but I know whilst it dangled in front of her she was conflicted about it and I suspect considered it mainly for my Dad's sake as he wasn't handling the news very well.

As for timeframe, it's different for everyone.  I was shocked and upset at first but my mum is very calm and now we just want to enjoy each day that we have.  Is your mum still in the hospital?  It sounds like she has had a very tough time of it.

I hope you manage to get some support for your mum and also yourself.  It's a very difficult time.  I can only wish you all the best and tell you that I will be thinking of you.  Let us know how you get on xx

[May888]

Hi Floofmom, thanks for reply.

 

I spoke to my mum asking how she feels etc, and she said she feels fine in herself, just said when she coughs her stomach hurts abit. It’s just the waiting what the consultants decide. I rather know the facts and the reality of what to expect. I know it’ll be hard to listen but I rather know the truth, so I can prepare myself mentally, as I am extremely close to my mum, 

 

My mum is still In hospital, which to be honest I don’t know why, as she’s no longer has covid, and she’s been in hospital waiting what the consultants decide for over a week, so I don’t understand why my mum can’t come home and be in her own environment and wait for the consultants decision at home. 
 

I hope your mum is ok.

[Floofmom]

The waiting is horrible.  The not knowing what is happening.  My mum is in quite a lot of pain and sleeping quite a lot, but some days are better than others xx

[May888]

I’m sorry to hear your mum is pain. Does she take anything to ease the pain? X

[Floofmom]

She has some morphine and paracetamol but at night now she also has levomeptonazin which knocks her out. She also had a visit from palliative care last week who arranged for an emergency pack.  This is just to have in the house just in case.  That way if it is a weekend or middle of the night a nurse can come out and all the drugs she may need are already there without having to wait for pharmacies to open etc  She's such an upbeat person.  Doesn't let things get her down.  I speak to her every day (we are at opposite ends of the country) and if she says she is in pain I know it's very sore but she then brightly says "it's very painful but it's manageable".  She hates for us to worry and recently she keeps apologising for being a nuisance! Of course nobody ever thinks she's a nuisance at all.

I am glad your mum is feeling well in herself.  Once she gets out do take every opportunity to do some nice things.  Make happy memories.  This is exactly what we should all be doing whether or not we have PC hanging over our heads, but we don't make time.  PC makes us re-evaluate things.  Do you have any siblings that can be of support to you?  Is your Dad around and if so how is he coping?

[May888]

I’m waiting for the consultants decision on how to proceed with my mum. The waiting is driving me crazy. But having spoken the nurse on the pancreatic cancer support line on what could happen, my mum could be offered chemotherapy, so I don’t understand why the consultants are taking their time in telling us the decision and treatment. 

 

I have siblings, I more closer to my older brother than my older sister. It’s difficult trying to speak to my sister as she has been with my mum in hospital but she doesn’t always tell us everything. My dad is coping ok, he doesn’t say a lot. He’s like all of us…..just want to know the consultants decision. 
 

for me, once I know what the doctors decide, I’ve decided I will leave my job and move back to my parents and look after them. I want to be there for them. I’m so scared and worried on how long I have left with my mum. 73 is so young to lose a loved one.  

 

your mum sounds a strong , great woman. Xx

[Floofmom]

It's the start of a new week.  Fingers crossed that you will have a decision soon.  Really pleased that you have family around you for support. 

That's a big decision about leaving your job but I get why you want to do that.  Is it something that you can pick up again at a later date?  Mine is quite specialised so I didn't want to do that plus I have kids so couldn't up sticks to my parents.  I am making do with increased visits. 

I would suggest in the first instance finding out about your company's policy on compassionate leave.  I had to dig around and eventually emailed HR and was told I could have up to 3 days compassionate leave and 5 days bereavement leave.  Companies have different amounts I think.  I was also told that I could have unpaid leave if I wanted it, so worth asking.  Personally I found it easier to discuss in an email at that point as I cried each time I tried to verbalise what was going on.  As time has gone on and I have had time to process things a bit I find it OK to speak about.  I think I had to try just talking a little at a time, kind of testing the waters a bit.

Good luck for the week ahead xx

 

[May888]

I really hope we get told what the consultants decide tomorrow or at least this week. I understand they are busy etc but I feel it’s unfair on families that they know realistically what the decision is, but why wait to tell families. Time is precious. 
 

thanks, that’s great advice. I will contact HR. However, with my job I can pick it up anywhere, so moving back home is not an issue. I don’t have a family (kids) or any ties, so it’ll be easier. 
 

Sending lots of positive vibes to you and your mum and family. Keep us posted on how things go. I do find these forums helpful, as I don’t always feel like chatting to my family. 
 

take care and thanks for sharing your experience xx

[Gaffer]

Hi Mav 888

Sorry to hear bout the news of your mum’s diagnosis and that you’re waiting for information on next steps.

My husband was diagnosed in Aug 19 with pc and mets in liver. Very sadly he died last year, aged 56, thankfully we met young at age 16, but I must admit still very much struggling with it all but just taking it day by day. I’m assuming your mum has had a biopsy to confirm the diagnosis? I know that the consultants meet at a MDT meeting to formulate a plan and then options are discussed. In my husbands case the options were

1. Do nothing 

2. folfirinox chemo

3. Clinical trial 

My husband, along with myself and daughter went for the chemo option. My hubby was 54 at the time, fit and well ( the irony- so we thought!) and worked as a fitness instructor.

I know there are less gruelling chemo too ( and there’s different percentages of folfirinox) so explore all the options and of course you will know your mum’s general fitness etc. My hubby had 21 rounds of chemo which kept things stable for some time which we were very thankful for but ultimately he died 19 months after diagnosis. He kept with the chemo but did have a couple of planned breaks and thankfully were able to have 2 trips when lockdown eased which we have lovely memories of. Of course some decide against the chemo route and of course that is a personal decision but just on my husbands behalf that was our decision. I don’t think it’s particularly helpful giving timescales as everyone is different, what I would say is enjoy the good days and make memories, and talk plenty and just be together.  The other thing I’d say is be armed with as much information as you possibly can and research as much as you can, have your say with the medics and speak up if you have any concerns whatsoever. I was a very quiet person but became a bit of a ‘lion’. I know you’ve been in touch with the nurses at PCUK. I honestly don’t know where we’d have been without them. Don’t hesitate to get in touch with them and they can talk you through things. They have a wealth of knowledge. Though hard I know, get some support for yourself too, it’s a tough road and you need to take care too. I wish you all the best x

 

 

[Borobi]

I agree with Gaffer. It’s impossible to know how long people have got either with or without chemo. There’s so many variables including how well they tolerate the chemo. My healthy and fit 66 year old husband was diagnosed 3 years ago. 12 cycles of (effective) Folfirinox, followed by chemo radiotherapy and Gemcap chemo which weren’t effective. He lived for 20 months but was well for most until a few weeks before he died. 
 

You’re in a horrible situation. Take each day as it comes and don’t be scared to ask for help. 

[May888]

thank you all for sharing your experiences and advice.

 

finally received the consultants decision. My mum plan is she will start chemotherapy for 6 months. They haven’t said which one and the dosage etc. they said they’ll send a letter detailing when etc within 2 weeks. 

 

at the moment my mum is taking •    Omeprazole- 20mg gastro-resistant tablets- 2 tablets, twice day

•    Creon- pancreatic enzymes. Pancreatin 300mg. one tablet, 3 times a day. 
 

I wanted to know if anyone has side effects of taking creon. Just everytime my mum takes creon, she seems to have Diarrhoea. Will this pass? X
 

[Gaffer]

Hi Mav888

Pleased that you now have a plan. I don’t think your mum is taking enough Creon. It’s a bit of trial and error to start with as it depends on the content of the meal as to how many to take. You cannot take too many but if you don’t take enough there will be little or no effect. I honestly don’t think one 3 times per day is enough but I’m not a medic and please seek further advise before changing anything,  but certainly my hubby was taking around 6 with a main meal depending on what it was. Please give the nurses a ring for some advise, they have a wealth of knowledge regarding Creon  or sign ip to one of the webinars ( or look back at previous ones) there’s lots of information on Pancreatic enzymes on their website.  It takes some time to get dosages right but certainly in my husbands case once he did it was certainly beneficial and made a huge difference to the diarrhoea etc.

 Take care x

[Floofmom]

So pleased that you now have a plan in place.  That will really help you.  Regarding the Creon, I think my mum is on 2 before each meal or snack but did have diarrhoea before starting them and if I remember correctly it got worse then stabilised once she was taking them regularly.  She increases her Creon if it's a greasy meal or has red meat as she finds it helps.  You can't take too much Creon so if it doubt take an extra.  I think she will probably find what works best by trial and error.  

[May888]

Sorry I’ve been abit quiet. Still processing the news that my mum will have chemo etc.

 

I find it so hard seeing my mum so frail. My mum is finally home, just waiting for the letter when chemo will start. I see my mum taking loads of naps during the day, and she said she feels tired. I told her to take it easy.

 

she’s lost a lot of weight too. I try and encourage her to eat more as she’ll needs her strength when chemo starts. I said to my mum to have mini meals, more often in the day. 
 

any advice on the types of food? I’ve told her eat more food like  spinach, brown rice, tofu, abit of meat, fish, blueberries. X

[Lornacath]

Hi Mav888, we were advised that food with more calories, soft, skinless are more easily digested when you have P/C. My mum sometimes only managed cake and ice cream, on good days Avocado, scrambled eggs, soft fish, creamy soups, Carbonara. Everything had to be accompanied by Creon, 2 with snacks and 4/5 with anything more.  Using the special fortified drinks to make jelly were also good on the days my mum didn’t want to eat.It is so difficult to tempt our loved ones to eat when it makes them feel so ill, the medication also makes everything taste unpleasant.

Wishing you and your mum all the best xx

[Leah256]

My mum is struggling to eat too - nothing for the last month, only one or two fortisips a day. We saw the oncologist yesterday (posted all about it on another thread), he told her to eat anything she fancies, it doesn't matter what or how unhealthy, as long as she is getting some real food and calories in. 

 

What chemo is your mum being given? I hope you both are doing as well as you can. 

[May888]

Sorry for delayed response, it has been a very difficult few weeks. I think I’ve cried nearly everyday for the past few weeks. A little update, My mum (73) had her first oncology appointment yesterday. Didn’t expect this and it has shocked me. So back in mid March my mum had stomach ulcer. Doctors took sample cells from her stomach. At the time we were told there were no results. Found out YESTERDAY the sample of the stomach ulcer contained cancer cells. So not only my mum has PC, it has spread to her liver AND stomach. 

We asked why has it taken so long to get this information and they said they did not have the results and apologised. I’m disappointed at this, as this should have been communicated sooner when the doctors found out, not wait till my mum had the oncology appointment.

My mum had a blood test yesterday, now have to wait till Monday/Tuesday to check her haemoglobin levels. this will help the oncology team to access what her bloods are like and if there is a need for further blood transfusions.  Chemo will lessen her blood count so they will have to keep an eye on that throughout her chemo.  If Haemoglobin levels are low she will have to have regular blood transfusions.
 
Been told my mum will have the combination drugs– Gemcitabine & nab-paclitaxel.

Has anyone had or know anyone who has had Gemcitabine & nab-paclitaxel before?

If they can give any advice or support.

Xx

[Floofmom]

Gosh.  I would be feeling annoyed, frustrated and upset too.  Thinking of you and your Mum xx

[May888]

thanks. I’m feeling all sorts of emotions. But my main priority is my mum and how she will cope with chemo. X
 

 

[Lornacath]

Dear Mav888, I have been checking in from time to time on this forum to see how your mum is doing. Sadly my own mum lost her battle six weeks ago, it has been a very tough few months before and since, like you I was extremely close to my mum and have spent so much time looking after her and now my dad, the tears never seem very far away.

I was delighted to see your mum had finally got to chemo and then so sad to read they had found cancer cells in her stomach. This P/C is the most terrible cancer, I have everything crossed that your mum can tolerate the chemo and that it does it’s job of shrinking the cancer and giving you and your mum some more time. 
I hope you are ok, knowing the journey you are on, the emotional rolls coaster is like being tortured. Sending you and your mum lots of love x

[May888]

Lornacath, thank you for your kind words. I’m so sorry to hear about your mum. Sending you lots of love. This horrible cancer takes over so quickly. Unfortunately things seems to be deteriorating quite quick. I might repeat myself here, as so much has happened in a short space of time. My mum had her first oncologist appointment (19th) and they did a blood test and was told we’ll get the results on Monday/Tuesday (23rd/24th).

we chase the hospital-no answer. When my mum went for her 4th covid booster jab on Wednesday(25th) at our local gp, we asked the nurse are the able to find out the blood test results from the hospital or find out any information. The nurse went onto the hospital database and found the blood test results were uploaded the 20th, and when the nurse looked at the results, she said my mum should go to a&e asap as her blood count is dangerously low (60).

 

so went to a&e, we spoke to the a&e doctor asking why the blood test results not communicated sooner and why does our local nurse have to the digging to find the results……they said they apologised and that they f***ked up and that the blood dep should of let us know asap if blood levels are that low. For me this is totally unacceptable because this is danger for my mum and it’s my mum health. I do understand the NHS are stretched, but something as seriously as my mum blood level down considerably is important that this was communicated to us, not us asking our local nurse to chase up. 
 

anyway, my mum is still in hospital, the done CT scan and ultrasound, she has had 2 bags of blood transfusions. More tests are being done to find the reason of the blood loss, as they said there is no obvious sign, like no blood in her stools. 
 

since last Thursday when she was admitted to hospital till now, she has been having episodes of shaking arms, legs, high temperature and breathlessness. They been giving my mum paracetamol and antibiotics by IV drip. And doctors are trying to find out the what is causing my mum to have temp, the shakes and breathlessness. 
 

they are doing blood cultures to see if there is an infection. Her sugar levels are up and down, and it looks like her pancreas is not working. 
 

I believe my mum won’t start chemo until they find out what is causing my mum the high temp, shakes etc. my heart is literally breaking and seeing my mum like this. I’m sooooo close to my mum.
 

I’m angry the hospital did not communicate the blood test results, and I want to complain about this, but not sure who to complain to, as I don’t want this to happen to anyone else. Someone mention about PALS, but don’t even know where to start. 
 

X

[rogs]

2 hours ago, May888 said:

 

I’m angry the hospital did not communicate the blood test results, and I want to complain about this, but not sure who to complain to, as I don’t want this to happen to anyone else. Someone mention about PALS, but don’t even know where to start. 
 

 

Your experiences are so close to ours in many ways.  In our case, there was almost continuous confusion about blood test arrangements. The pathology department relied on a computer system that didn't 'talk' to the oncology system . As a result, appointments were sometimes not confirmed, blood results went missing and the whole thing relied on us making contact, via telephone, to continually 'chase things up'.

I shouldn't be like that of course -  but the clinicians have very little authority over how the various computer systems can actually be made to 'talk' to each other!

One of the greatest NHS scandals of the last 40 years has to be the amount of money wasted on various failed computer systems. And it's still bad!

You'll probably need to make nuisance of yourself to keep things moving  on track...

You can try contacting PALS. Each hospital normally has a Patient Advice and Liaison Service, and you can contact them either online or by phone. 

At the time I tried to use ours, the web links were broken!  I did phone, but never really got anywhere.

You'll most likely to get platitudes and promises, but as PALS also have no control over the computer systems software, nothing much changes!

You'll probably need to continue to shout and make nuisance of yourself - even if that's alien to your nature!

'Bloods' or - more accurately - the 'right' results of various blood tests at any one time are vitally important in determining whether chemo can proceed or not. In our case, my wife's 'bloods' were only ever good enough for one dose of chemo. And that resulted in 2 separate neutropenic infections, which required intravenous anti-biotics to resolve!

If I knew then what I know now, I can see that - in many cases - the side effects of the chemo can often outweigh any advantages.

Especially palliative chemo. 

I wish now that we had decided to not even try and 'buy' extra time using chemo. Once the decision had been made - by oncology - to stop it, the remaining months we had together had much more quality time.

Of course, every one is different, and clinicians are not often in a position to predict outcomes with any accuracy, so in the end it comes down to individual  circumstances. But beyond a certain stage, I personally believe that palliative chemo tends to become 'clutching at straws' a bit.

Especially when 'bloods' are difficult....

I read this morning, for example, that former professional footballer Andy Goram has just been diagnosed with terminal cancer, and has already announced he will not undergo chemo which may extend his life by 3 months. 

He has decided that the quality of his remaining time is more important.

I personally think that's probably a wise decision, but I do realise that some folk won't agree with that view.....

 

[Lornacath]

Hi Mav888, I have everything crossed for you that your mum rallies from all these blood issues. It seems that fighting Pancreatic Cancer is not serious enough they have to throw other complications to make it almost impossible to get to Chemo.

My mum caught Covid 7 weeks before she died and then had to have life saving surgery and a stoma 5 weeks before she died. She was due to start Chemo a few days after she was rushed into hospital but she never regained enough health to put her through even one round. Only my dad was allowed to visit for 1 hour a day after surgery, this was so hard for my sister and I.

My heart goes out to you, stay strong and treasure the time you are able to spend together, sending you lots of love x

[Borobi]

Hi Mav 888. 
If you want to complain, I wouldn’t bother with PALS. Put your complaint in writing to the Chief Executive. The hosp will have a complaints procedure and they will respond to you in writing. The Chief Exec has to sign off the complaint responses. Try and be concise in your letter, itemise points you want answering, and if you have something specific you want to happen, say so. 
 

I’m an ex NHS complaints manager.