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

[May888]

So I’m writing this while my mum is sleeping next to me in hospital. I’m allowed to stay in hospital with her.
 

where do I begin. Well first of all I sent a complaint email to PALS, chief exe of the hospital and NHS advocacy over failings of communicating results about my mum to us. (See my earlier message)

 

so the current situation with my mum is she’s been on paracetamol drip and antibiotics drip since she was admitted to hospital (27th May) she’s been having high temp, breathlessness, wheezing and shakes. Paracetamol and antibiotics is helping with this. Her sugars are all over the place. She has some kind of infection and antibiotics is helping with this. But chemo can’t start until her condition is stable.

 

my mum had a ct scan and it showed my mum tumour has grown slightly. 

I feel so helpless and want to know what causing my mum the high temp etc, as I’m keen for my mum to start chemo.

 

she has some decongestion and everytime she coughs, she vomits what she ate. Nurse gave her decongestant syrup to help my mum, after the syrup, about an hour later she has coughing episodes and she’s coughing up clear phlegm and sometimes spots of blood from her nose. It’s so distressing to see.  
 

doctor mentioned as a family have we discussed DNR. This is heartbreaking to even think about. While I’m in hospital with my mum, I wait till she’s sleeping, I go to the toilet and cry. 
 

I'm probably not making sense now, as it 11pm at night and it’s been a day. So apologies.

 

will update when I can x

[Floofmom]

Hi Mav888 how is your Mum doing?  Did they manage to sort out her bloods and sugar levels?  

[LisaC]

Mav888 my fiancé also had high temperatures and an infection, the drs said that it was due to the tumours. 
 

The DNR discussion is hard but the way it’s explained is that CPR can only fix a few issues that occur in an emergency, in the cases of our family CPR can’t fix what is wrong with them and is undignified for the person. It does not mean that they won’t treat with antibiotics or fluids if needed but the drs have to be sensible with how they will manage patients with cancer etc. 

[Lornacath]

Dear Mav888, my heart goes out to both you and your mum, her fight to even get to chemo treatment is very similar to my own mums. The temperature, shakes and breathlessness seem to be something to do with the cancer but the nurses and doctors were not very specific and would only speak in general terms. (I got the feeling they either genuinely didn’t know or they really didn’t want to crush our hope).

Your mum is in hospital and I guess they can react really fast to any changes that may occur and that could be a real blessing especially when it comes to pain relief.I hope you are able to speak with your mum, share lots of stories, and just be with her. 
I am thinking of you and praying you get more time, sending lots of love xxx

 

[May888]

My mum having coughing episodes and trying to cough up the phlegm but she’s so exhausted from coughing and it’s so distressing to see. 
 

. 
my dad and brother were visiting mum and I in hospital and the oncologist came in. Lucky my family were there when the oncologist came. the oncologist came yesterday and confirmed my mum body and condition is deteriorating quite quick and she’s too weak for chemo. 
 

so now she can’t have chemo, it’s now palliative care.

 

towards the end, my brother and I asked the oncologist why the delays in communication of spreading of the cancer, blood test results etc (see earlier post) the oncologist apologised and said resources are limited and nhs is stretched. I get nhs are stretched but I think people advance stage 4 cancer, should be treated sooner.

 

as my mum is deteriorating quick, I’m looking a 2 months left. But who knows. My mum gets blood test daily, and everyday when we have the ward doctor to see us, the doctors brings something else bad from the blood tests. So far she has high infection markers, low sodium level, high potassium level, HB lower. The doctor said if there a rapid drop in HB level, there an internal bleed, but my mums HB level is loosing blood slowly. 
 

I just can’t believe since mid feb when my mum had first ct scan to where we are now. This horrible cancer has taken over so rapidly. 
 

my mum sleeps 80% of the time. So difficult to see my mum like this. X

[Lornacath]

Hi Mav888, I was so sad reading your last post, it is a very hard moment when you are told only palliative care is available. 
I hope you are able to spend as much time with your mum now as possible, I am thinking of you all wishing I could give you a  huge hug. Sending lots of love to your mum.

[May888]

My mum is deteriorating rapidly. All the medication the doctors are giving her is not working.

last Friday my mum had a blood transfusion as her HB a level was 74. Done a blood test again on Saturday to check if her HB level have gone up, but it was still 74, which showed she was bleeding internally. Also when my mum was doing a poo, it was tar like colour, plus I saw fresh blood. Showed the doctor and unfortunately they said there bleed from the stomach and caused by the cancer.

 

my mum organ’s are quickly shutting down. The doctors tried different medication, stronger antibiotics, different infusions, but nothing is working because the cancer is rapidly taking over.

 

when I was in the hospital all week with my mum, it was hard seeing my mum suffering. Her hands and arms are battered and bruised from doctors and nurses poking needles etc. one day she said To me “ May, I’m exhausted, I’m suffering in pain, I want to go”.   I told her everything will be ok soon, and I went to the toilet and broke down. 
 

 

so it was confirmed yesterday the doctors will stop all medication and now be pain management. So palliative care made an urgent referral, as a family we want mum home asap. She want her to be in her own familiar environment, and when the time comes, the district nurse will come and give morphine and let her pass away peacefully. I believe once my mum is home, she will go within days. This horrible cancer has taken over my mum so quickly. From mid feb from having her first CT scan to now, I just can’t believe how rapid the cancer is. My mum didn’t even start chemo.

 

I still believe ALL cancer should be treated, but someone who at advanced stage 4 should be treated asap than someone is at stage 1. It was confirmed my mum had pancreatic cancer and spread to her liver and stomach at the end of March. I believe if my mum started chemo then, I don’t think my mum would be in the situation she’s in now. And when the oncologist said, they are limited resources, nhs are stretched, there’s a backlog etc, it’s makes me angry.

 

Hopefully my mum can come home today (Tuesday 14th) and spend as a family what we have left.
x 

[Lornacath]

Dear Mav888, it all sounds so familiar, different complications, my mums was a catastrophic prolapse needing life saving surgery and having a stoma in the last few weeks of her life. She was due to start chemo just a few days after surgery but never gained enough health to do so. But before that there were delay after delay waiting for results and appointments. They told my mum July 28th last year she had Pancreatic Cancer but could not tell her what type until middle of Feb when they were also telling her it had spread to her liver. She was convinced they were putting her off any treatment because of her age (77).I don’t know. Maybe with or without treatment our beautiful mums were going to  die of this dreadful disease. I’m am so sad for you all. I hope your mum can get home and be with her clearly loving family. I pray your next few days are peaceful and your mums pain is under control. This is so terrible, my heart goes out to you and your family, sending lots of love x 

[Netty]

Dear Mav88,

 

My heart breaks for you, and all the horrors and fears that this terrible illness puts upon us, I totally agree the waiting times in between diagnosis fills us with despair, wondering how they can leave our loved ones soo long and what the hell this nasty cancer is doing in the mean time, it's simply out of our control and it leaves you despairing, all we can do is heap our love on them surround them with happiness and just doing exactly what you are doing right now, I hope you get your beautiful mother back home with you, lots of very big ((((hugs)))) to you and yours my lovely.

Love

Netty

Xxxxx

[Borobi]

I know it’s incredibly hard, but pancreatic cancer is a bastard to treat. Even if you look at countries that put lots more resources in because of the way their health systems are funded, 5 year survival rates are still only about 10% 

 

My very fit & healthy 65 year old husband was diagnosed when he hardly had any symptoms. They chucked Folfirinox at him for 6 months, then chemo radiotherapy & then Gemcap. He only survived 20 months. I don’t believe that any more could have been done to help him. Unless you can have a Whipple op, and very few can, your chances aren’t great. 
 

So try not to think too much about the “if only” and just concentrate on today. 
 

Thinking of you and your mum at this horrible time 

[Floofmom]

So sorry to hear this.  I am thinking of you all.  We are at end stage too with my mum now which I won't go into here but I have been wondering how your mum is doing.  It is shocking how fast things can happen and I remember reading posts by Justamo who regularly referred to it all as "The PC rollercoaster".  I now understand why she called it that.  However, I think for you there haven't been many plateaus, it sounds like your mum deteriorated very rapidly.  I hope that she gets to go home and be surrounded by her family for a very peaceful and pain free passing.  Big hugs to you.  Nothing can prepare us for this can it? Xx

[May888]

Update- the doctors think it’s too dangerous to move my mum home. So she’s staying in hospital until she passes away. It makes me so sad my mum couldn’t be at home. 
 

Doctors has said it could be days. I’m still with my mum in hospital. I’m watching her like a hawk. She currently has a syringe driver, which has morphine and anti anxiety sedative, which is slow releasing over 24 hours.

 

my mum cannot swallow or eat. She is bed bound, and if she’s thirsty, I have a swab and dip it in water and give it to her to suck on. It’s really is sad how quick this horrible cancer has taken over. 
 

x

[Sonia1]

I am so sorry to read this Mav888  

I have been silently following this post alongside many others hoping to find a miraculous recovery case which I can take some comfort in. 
 

I have been sat outside the ward my dad is in for the last 2 hours as my sister visits him (1 person policy).

He too is on a syringe driver and has just come out of surgery for a gastrojejunostomy.

 

They are going down the palliative route trying to get him as comfortable as possible but he remains in so much pain with this surgery making it worse  

 

It breaks my heart to read what you are going through and I just want to send my love and say my thoughts and prayers are with you during this difficult time xxxx

[Lornacath]

Dear Mav, I really feel your pain, we were told hearing is the last sense to go, we sat and recalled all our happiest memories. I am thinking of you and your dear mum xxx

[May888]

Update- my mum is still with us, but I can see and hear her breathing is more laboured. 
 

everyone in my family thinks my mum is still clinging on because of me. I’m the youngest and the baby of family, and my mum and I are extremely close and out of the three children my mum has, I’m the most she is most fond of. 
 

everyone said I should say my goodbye while she can just about hear and tell her it’s ok to go. Once my mum hears it from me, I think she will pass away.

 

I'm finding it extremely hard to let my mum go though. I knows it’s selfish but I know it’s the right thing to do and tell her everything will be ok. 
 

My mum starting saying why her parents (my grandparents) haven’t come to visit. My grandparents both died over 8 years ago. I said they’ll come soon. So my mum is getting confused. 

 

my mum can hardly open her eyes, but when she does, I can see yellow eyes (jaundice….is that right?)

 

then my mum is asking for tea and horlicks  to drink, and she never really drunk that home before. I can see she has oral thrush, but there’s not much the doctors can give my mum as she not swallowing liquids.she hasn’t had any food since last Thursday. I want to give her something soft like jelly, but scared she’ll choke. Only liquid she’s getting is, when I put swab and dip it in tea/water etc. nurse suggested ice cream or yoghurt, but my mum is not keen on them. Plus I think the oral thrush is irritating her. I don’t know what’s best.  

 

this is horrendous seeing my mum this. I just don’t want her suffering anymore. X

[Lornacath]

Oh Mav, I’m feeling so sad for you. My mum also had oral thrush at end, it is just harrowing seeing our beloved mums suffer.

This is such heartbreaking time in your life, but your mum will feel all the love you are showering on her. Sending lots of love x

[Floofmom]

Hello May888.  Sorry I haven't been in touch for a while.  It sounds like you are really going through it at the moment and I know many of us wish we could wave a magic wand and make this go away.  I know you are in your mum's final stages and nothing can ever prepare you for that.  It's traumatic for you.  I do hope that she is not in pain.  Please remember that you have done everything that possibly could and this time that you have together now is precious.  You have been there for every step of the journey and although it is so, so hard (and I haven't done it yet) it's a privilege to be with someone through their passing, although obviously we don't want them to leave.

Please know that you are in the thoughts of many of us right now.  Big hugs to you.  I hope that you have a calm and peaceful environment around you xx

[May888]

Update- my mums syringe driver has been changed from 10mg to 15mg of morphine as my mum was having few tops up of morphine.

 

some how after nearly 2 weeks of No medications and the only medication my mum is having is from the syringe driver of morphine and anti anxiety sedative, she’s still here. The head doctor popped in this morning just checking in, and he mentioned it could be days my mum will pass away. But saying that, he did say that 2 weeks ago and my mum is still here. But I genuinely think the doctor is right this time, and my mum will pass away in days. My mums face, body, colour has changed. 
 

I’ve been staying at the hospital and I do find it hard to let my mum go. Who would want their loved ones to go. 
 

talking to my family helps, but I don’t want to worry them. I feel like I can write on here and feel comfort in writing my thoughts. 
 

pancreatic cancer is a b****. It’s a silent killer. People don’t show any signs until it’s too late. 
my mum has advanced staged 4 cancer, and from googling, from stage 1 to stage 4 it could have taken a year. So in March/April 2021 that’s when my mum would have had cancer, but it’s not until January this year, she started to show symptoms

 

It’s heartbreaking seeing my mum like this, bed bound, not able to talk, my mum was an independent woman and now she relies on me and nurses to wash her etc. I do anything for my mum to stop her suffering, 

x

 

[Floofmom]

Just sending you hugs.  Please know that we are thinking of you xx

[broju]

Yes, May888, be sure that all of us on here are thinking of you and sending hugs.  So many of us have been through this with our loved ones and know  the level of despair and heartbreak you're experiencing.  There's no way to describe it or expect others to understand and it is too hard to discuss with your family at this stage. Take great care of yourself. Love.xxxxxx 

[May888]

It gives me great sadness that my brave, strong mum passed away last night. I was with her when she passed away at the hospital. I called my family but they didn’t make it in time. I’m glad I was there till the end. 
 

she’s no longer suffering and at peace now. Thanks to everyone In this forum and people following my story. 
 

x

[Sonia1]

I am so so sorry to hear this Mav888

My thoughts and prayers are with you Xx

From everything I have read, I really do think you have been absolutely amazing and I thank you for sharing your journey with the rest of us. 
 

May your amazing mum rest in peace X

[Borobi]

I’m so sorry Mav, but as you say, she is at peace now. Watching a loved one suffer and die is so hard, but you did your absolute best for her. Make sure you look after yourself. 

[Floofmom]

So sorry to hear your sad news.  Thank you for sharing your journey.  I am glad that you were there at the end.  You stayed with her and looked after her all the way through and I am sure that she knew that and was comforted by your presence.  I wish you well as you start your grieving process and hope that you and your family can give each other support xx

[rogs]

So sorry to read your news May888.. My condolences to you and your family.  

I've been following your story, and can relate to many of the things you describe - we seem to have shared many parallels in our respective journeys.

 

I think it was a phrase you used in an earlier post that sums up what so many of us feel, as we have slowly watched our loved ones fade away --

 

"Pancreatic cancer is a b****  ".

 

Although our own loved ones are now at peace, let's hope that research into this awful disease progresses more successfully in the future?

It is sad to think that so many others will need to go through what we have experienced.  

It's such a shame that so little progress seems to have been made on survival rates so far, with this dreadful cancer...