Dad’s Diagnosis - Feeling helpless :(

[Sonia1]

Like many of you, I find myself on here reading endless stories of how this dreadful cancer has turned our lives upside down.

 

Dad was admitted into hospital on 12th May following significant weight loss, jaundice, abdominal pain and constant sickness to the point he couldn’t even keep a sip of water down him. 
 

The hospital organise a ERCP for 16th May to put a stent in the bile duct and fight the jaundice. This failed due to the obstruction.

 

On 19th May we had a PTC where they put a bag on him to drain the bile externally. He also had a feeding NJ tube inserted so he can get some nutrition.

 

24th May we are told he has pancreatic cancer- they suspect it has spread locally to lymph nodes and possibly the duodenum which is why he is struggling to eat. It is inoperable and they believe he is too weak for chemo. Dad had dropped from 72kg to 59kg at this point. They told us the palliative route is best way forward. 
 

31st May his bile drainage is internalised with a stent. They want to do the same about the duodenum and put a stent in so he can start eating again. 
 

13th June he has a procedure for the duodenum stent to be put in but this fails. They take out his feeding tube in order to do this procedure but don’t put it in after it fails?
 

Next plan is to perform a gastrojejunostomy surgery so he can start eating again. This was due to take place yesterday, then today and now tomorrow. Apparently there are emergency cases that keep coming up and dad’s case gets pushed back. 
 

He has received nothing but IV fluids in terms of nutrition since midnight of 13th June. His weight is now 52kg

 

I am terrified about what comes next and how he will heal from this surgery when he isn’t able to eat. He is now due to have a PICC line so feeding can start via TPN. This will be done tomorrow.

 

I have spent so many nights reading other people’s journeys on here and it breaks my heart to see what this cancer has done and terrifies me as to what is come.

 

I am not sure what I hope to achieve with this post other than to share our journey so far and hope there is someone out there who may be able to help or give some guidance on what to do or expect from here?

 

We are yet to speak to oncology and have been told only once dad is eating again etc and discharged will they get involved. There may be palliative chemo but who knows when that will become available. It all depends on dad.

 

My dad is the strongest person I know and my world. He has gone through so much in this last month and still fighting and it breaks my heart to see him suffer.

 

He is in so much pain and has now been given a syringe driver which seems to have helped. I just really hope he can fight this b***ard cancer for as long as possible but at the same time don’t want him to suffer

 

I spent every single day calling the hospital and chasing them for updates and trying to make heads and tails of what the next steps are. It has been such an uphill struggle so far and I feel so helpless and defeated. I just pray it’s all a bad dream which I will wake up from. 
 

Anyways thank you for reading the above, any advice or guidance from you all would be greatly appreciated. 

 

[Netty]

Dear Sonia, 

I don't have any advice as we are just trying to adjust to our new pancreatic cancer diognosis, and new normal.

I too read everything and anything that relates to our situation, I can't believe the cruel complex complications this vile cancer heaps on our loved ones, and thankyou for sharing your journey, lots of love and best wishes to you and yours xxxx

[Leanne]

Hi Sonia, you seem to be going through roughly the same time frame as me. My lovely dad was diagnosed last week on the 10th June with metastasis on the Liver. He has been vey jaundice for the last 3 weeks and it seems to have been an age to get a diagnosis. There seems to be no urgency and there is always something coming up to delay scans etc… Anyway we have got the diagnosis and yesterday he went to have an ERCP performed. This unfortunately was unsuccessful because of the obstruction but we were hopeful that they could perform the PTC. 

This morning he was told that it had been cancelled because the mass is so obstructive that they don’t think they can do that either. He is going downhill rapidly mainly from not getting the relief from the Jaundice and doesn’t think he can last much longer. He is 71 and had always been very well so this has come as a massive shock as this has only just happened within the last 3 weeks. It just feels so surreal and like you I feel I am living through an absolute nightmare!! 
 

I feel that the communication has been terrible throughout and to top it off, when I tried to make an appointment to see him I was told that their policy has changed and only one visitor a day is only allowed. This is really distressing as I am one of 5 siblings and we all want to spend as much time with him as possible.

 

We don’t know what is going on in regards to what the next step is. Apparently my dad said that the consultants are going to have another meeting next Monday but I feel this is going to be too late judging by how quickly he is deteriorating. I too feel absolutely helpless and I sympathise with you completely!!

 

My dad has also lost a lot of weight, I think nearly 2 stone in the last month but fortunately he still has some sort of appetite. The Creon has helped massively but if they could sort his Jaundice out he would feel so much better. His eyes are literally orange. I just don’t know what to do!

Hoping you get some sort of answers!!

 

Take care

Leanne x

 

[Sonia1]

Dear Nettv and Leanne,

 

Thank you both so much for your kind responses. I am so sorry we are going through this  I really hope there is some light at the end of this never ending tunnel we are in but as days pass, it seems to just get darker. 
 

Leanne, I feel like we may well as be in the same bloody nightmare.
 

As simple as it was for me to set out what has happened this far, I assure you nothing was straightforward. My biggest issue has been and will be communication. Decisions are being made without any explanations as to why or any consultations with us - it’s almost like the family don’t exist?! 
 

I spend my day calling the ward like a stalker in the hope someone will answer and tell me what’s going on. 
 

We too have this bulls**t rule of only one visitor a day and only for 2 hours. The hospital guidance states if the person is deteriorating or suffers from MH issues the ward manager can exercise discretion. This is all well on paper but trying to get hold of the manager is practically trying to make an appointment to see the Queen. Impossible. 
 

This morning I was told there is no update with regards to dad’s procedure and I ended up crying on the phone out of frustration due to the lack of information regarding his feed. He hasn’t had anything since Sunday and it’s Thursday now and here we are being brushed off with no information. It was only then the nurse assured me someone would let us know. 
 

Not only are we battling this horrendous disease but we then have to go through this constant battle with the hospital too. 
 

I am so glad your dad has his appetite and is able to eat and Creon is helping   when dad was on the NJ feeding tube - the creon caused him a lot of problems but I’m hoping if and when he starts to eat again it may help. 
 

I also know what you mean about the eyes. My dad’s were the same it was unreal. I really hope and pray they can try and come up with something to help your dad’s jaundice symptoms on Monday. I know what you mean about it being so far away though - is it an MDT meeting hence it has to be a certain date? Surely they will have to come up with some form of plan so keep pushing for the next steps and fingers crossed you have some positive news on Monday. 
 

If there’s anything I can do to help or if you just want to talk about it - feel free to get in touch. I will try and update the post with what happens with dad too.

 

all the very best xx

 

 

[Leanne]

Hi Sonia,

 

Thank you for replying, I have been coming to this forum for little over a week just trying to grasp at straws really scrolling through the very sad stories in hope I would come across a successful one. This site has been absolutely brilliantly in terms of me familiarising myself with procedures and some sort of terminology that I wouldn’t have understood just coming from what my dad has been told. Yours has been the first post I have replied to because at this present time I can relate to the stages you are going through at the moment.

 

I am sorry that your dad has not been able to eat, when days go by and you see them turn into a shell of themselves you just can’t get to grips with the lack of urgency. I mean how seriously ill to you have to be before you can get the attention you deserve?

I am very aware of the staff shortages within the NHS but to be honest I am absolutely sick of hearing about how stretched they are!! It’s not what we want to hear!!

 

Like you I feel that I have had a constant battle with the hospital to try and get any information. It’s very difficult as the doctors and nurses treating my dad are foreign and although I am greatful that they are there, the language barrier is terrible especially with having to wear masks all the time. My dad and I are absolutely terrible with accents So this is proving to be a massive obstacle. 

I feel your pain, getting through the hospital is an absolute nightmare, the phone can be ringing and ringing before it eventually cuts off and as I mentioned earlier, after the last 2 weeks of being able to see my dad when I wanted (with an appointment) they have introduced the 1 person rule a day!!!! 
I argued with one of the nurses yesterday because of this and then rang the hospitals complaint department with no success. They apologised that this should never have happened in regards to me visiting whenever. 
This was a massive blow because as you know, everyday counts!!

 

In regards to the meeting on Monday, I am absolutely clueless as to whether it is an MDT meeting. All I know is that because he can’t have the stent procedures they are discussing whether they should transfer him to another hospital with better specialists and try again.
 

I am avoiding ringing my dad at the minute because I don’t know what to say. He called me yesterday so distressed and angry and I said I would visit and try and find out what is going on but that never happened. Thankfully my eldest sister was booked in to see him so he had some company.

 

Let me know how you get on with your dad today, I hope after he has his PICC line done he will improve massively. Have you got other family for support? I am sorry about all the moaning but it has really helped me talking with you. 
 

Take care xxx

[Sonia1]

Hey Leanne

Just a quick update 

Dad has had his PICC line inserted this morning and they took him in for the bypass surgery they wanted to do to.

 

The surgeons say it went successfully and it’s up to his body to heal now and see how it goes. He looks awful  and is in so much pain  

 

My sister is in the ward having the 2 hour visit whilst I am sat in the waiting area. I tend to hand around as feeling closer to dad somehow helps and we FaceTime with my sister with him. 
 

We are 3 siblings and try and take it in turns to go and see him every day. Dad’s diagnosis seems to have changed our lives forever. I can see the sadness in my mom’s eyes too which breaks my heart but she is staying strong. 
 

You are not moaning at all, you are simply off loading and I feel so glad I have someone outside of the family to talk to too now. I’m very sad we have had to meet in such circumstances but I hope there is some comfort in at least sharing our experience.

 

I will pray with all my heart they can do something for your dad and by Monday they have a sensible solution for him - a transfer to a specialist hospital seems very very sensible. Although I am in no real place to give advice I would certainly suggest you push for this too if you feel the care in that hospital may be better.

 

I would also suggest you request a sit down with the consultant in charge to discuss dad’s case if that would give you some peace of mind. They cannot refuse this request but you really have to push hard with the nurses and follow it up via email if you can to the consultant’s secretary. Say you are happy to work around their schedule and worst case scenario have it over the phone.  

 

The consultants in dad’s hospital change weekly but we did manage to see one and ask the questions we had.
 

You could ask if they’ve even had an MDT in your dad’s case and their plan of action.

 

I understand all the above is much easier said than done but I hope it might bring some clarity to the situation. Our meeting with the consultant was devastating news but he explained matters well.

 

Also have you been referred for a upper GI CNS? I think it stands for clinical or cancer nurse specialist. She was the only person I could get some sense out of as matters progressed. They are very knowledgeable and able to access dad’s records to see what is going on. If you haven’t you could always ask the question.

 

I’m sorry for bombarding you with so much information which may be absolutely useless to you but I hope it helps you even the slightest.

 

keep me posted on how things go xxx

 

[Floofmom]

Hi, just to let you know that I am thinking of you.  It's a hard slog getting information and our sense of urgency to get things done doesn't seem to hold true with the way things are done in the hospitals.  Once my mum got her stent in (bypass) things improved jaundice-wise and she was much more comfortable.  Good luck.

[Sonia1]

Thank you for your message Floofmom x I just hope dad picks up after this gastrojejunostomy procedure and starts to eat again. He was really low yesterday and wouldn’t speak. I’m hoping today is a better day. 
 

I hope your mom is feeling as well as she possibly can too. It was lovely to read some positive news about her spending some time at home

 

[Leanne]

Hi Sonia,

 

I am so pleased to hear your dads bypass was successful and hopefully very soon he will be back eating again! 
My dad’s procedure was scheduled early morning at another hospital so we all were so relieved but late morning he called to say that it has been cancelled due to no available ambulance drivers as they are all off with covid. I honestly couldn’t believe it!! We were so distraught, my mum rang to ask if one of us could drive him only to be told that it would not be allowed and he has to travel by ambulance. My dad is obviously so disappointed and I am just frightened that this Jaundice is what is going to kill him. It’s been 4 weeks now and he is just going down hill everyday. 
They said they will arrange it for tomorrow providing there is a driver but who knows

I hope your dad has perked up today!! X

[Sonia1]

Oh Leanne I’m so sorry to hear that.

I know too well the agony of delayed or unsuccessful procedures. I think we pin all of our hopes on whatever the next step may be in the hope we hear some positive news and then there is a massive massive disappointment when it does not happen. 
 

Hopefully today will be a better day and bring some positive news for you. I am so glad to hear they are doing something about the jaundice - Do you know what procedure he is supposed to be having? I take it this was decided on the Monday meeting they were meant to have? 
 

My dad has been in a lot of pain since his surgery and has been very up and down. He is meant to be having ‘plenty of liquids’ now but I can’t see that happening. He is suffering from a lot of pack pain which doesn’t seem to ease much despite being on a syringe driver. It is hard to tell if the pain is from the cancer or muscle pain from lying in bed so much. To add to the pain he is not getting much sleep due to another patient on the ward with MH problems. Every time I call dad it’s chaos in the background with things being thrown around and the nurses and HCAs telling this patient to stop it and settle down. Almost feels like all of dad’s problems were not enough so we’ve been given a bonus one.

 

The slightly better news is dad has his first cup of tea since 4th May and was sitting on a chair when I called! I cannot tell you the joy this small step brought to me and I pray with all my heart you start seeing dad pick up too when the jaundice clears. I will be thinking of him today - please keep me posted.

 

Sending you a virtual hug xx
 

 

[Leanne]

Hi Sonia,

 

Finally dad has had his procedure done!! They ended up performing the ERCP again which we believe was successful but he might have to go back for another stent in his duodenum. At the moment he is back home but 6 days on he is not feeling any benefit. He is still very itchy, tired and nauseous but I am aware from this forum that it can take up to a few weeks before any improvement is noticed. He went for blood test today to check his bilirubin levels so hopefully that will give us some insight soon! It’s really hard to see him so down. He has always been a bubbly character but now it’s an effort to get any conversation out of him.

 

I am over the moon to hear you dad has managed to have a cup of tea!! Like you say, they maybe small steps but bloody hell does it make a difference to your day seeing a shimmer of hope!! Hopefully his back might start to feel better if he continues to sit in his chair occasionally. Like you say it’s hard to tell when you are laid in bed for long periods. I feel for him being on a noisy ward. I have always thought that a hospital is not the best place to get better sometimes as the disturbances and stress  make you feel a whole lot worse. My dad was moaning that he was being woken up in the middle of the night to check his blood pressure but at least I knew they were checking on him. Fortunately for him he had a private room as he was constantly needing the bathroom but on his last night they woke him up at 2am to move him onto the ward because they needed the room for someone else so he was very lucky in that respect with not having noisy neighbours.

 

Has your dad managed to eat anything yet?

 

Take care xoxo

 

 

 

[Sonia1]

Hey Leanne

I’m so happy to hear the ERCP was successful and they are finally doing something to relieve his symptoms.

 

You’re right- it definitely takes good a few weeks to see any visible changes With dad, I think it was at least 4 weeks before his colour started to come back and the whites in his eyes actually started to become white again. Fingers crossed the blood test results show some improvement in the bilirubin levels.

 

I am sorry to hear he is feeling so low  Dad is also the same most days - trying to get a conversation out of him becomes a struggle and he feels so disengaged at times.That said there are some better moments where dad is almost his usual self (when the pain is at bay) and I promise you there will come a time when your dad does perk up too. It may not be often but it’s the small wins that we have to celebrate.

 

Hopefully when you get some positive news about the bilirubin levels dropping; it may give him some hope.

 

Do you know why they are considering a duodenum stent? Is he still eating okay (despite the nausea)? This procedure is usually done endoscopically and if the ERCP was successful I really hope placing the duodenum stent is also a success.

 

With dad, they struggled with both hence the PTC and gastrojejunostomy. The good news is dad is able to eat and drink now! He has been on a puréed diet (which we have been taking from home as he disliked the hospital options). We’ve been given him chicken, sweet potato, carrots etc and so far so good. He can have yogurts, ice cream and has taken to the banana Fortisips too. He has even put on 0.3kg which feels like a massive win given it was going all downhill a few weeks ago. 
 

They are looking to remove his PICC line today or tomorrow and discharge him.  He has been in hospital since 12th May but it feels like it has been a lifetime. I am so happy he is going to come home but have a constant fear in my heart as to what is to come next. This cancer diagnosis has been such an awful rollercoaster. 
 

The specialist nurse has said once he’s discharged, 2-4 weeks later they will refer him to oncology. It will be their decision to make as to the next step. Whether palliative chemo is an option. I really hope it is

[Sonia1]

Advice needed please: 

 

Dad has been home for a month

 

He started off well, eating small amounts, having Fortisip twice a day, interacting with us a little bit.

 

It’s now been over a week since he’s not eating anything remotely close to proper meal (not even a small one). It’s a struggle to get him to have a fortisip too. 

 

Yesterday I encouraged him to eat and he did only to be sick at night. It was only a few spoonfuls too.
 

Today he has a few spoonfuls of food before throwing up but thankfully nothing came out - so dry heaving.

 

I have also noticed his stomach has swollen loads and I suspect it is ascites. I raised it with a DN and she said not much we can do about it as water pills most likely are not appropriate given he is barely drinking and there is no guarantee it will come down. She said it may have to be drained but we are not there yet - only when it affects his breathing should we call an ambulance. 

 

i feel like he is also more and more confused and sleeps loads. I would say 80% or the day he spends asleep and then 60% of the night. He remains in pain more so at night which keeps him up plus I think he gets really fed up of lying down.

 

I am at such a loss right now and fear the worst is yet to come. He has become a shell of himself 

 

The more I read up on it (Dr Google) it all points towards end of life symptoms which really makes this so much worse. 
 

I will get a call from the hospice tomorrow and ask for some advice but in the meantime I thought I would share this info on here to see if anyone can relate to what is happening and offer any guidance or advice on what I can do? Anything at all really. 

[IMissYouDad]

Hi Sonia

 

I have been reading your posts and I'm so sorry that your family is tormented by this insidous disease. We went through this last year, but sadly my dad only survived 5 weeks from diagnosis. 

 

My dad was admitted in pretty much the same circumstances as yours but they managed to sort the jaundice and he seemed OK for a couple of weeks. He ended up with a very swollen tummy, malignant ascites before he was admitted but it got worse. He had a drain and it made him more comfortable but, it was short lived. He ended up with a severe infection caused by the drain and we were told he was going to die before being given "the domestos of all antibiotics".. within minutes he was improving. 

 

After he recovered from his infection, he came home for his final 3 days. He stopped eating the second day at home, didn't want water - nothing at all. We thought he needed another drain but actually, his stomach wasn't full of that much fluid.. it was likely the tumor taking up space, limited room inside the stomach hence not wanting to eat/drink. 

 

The symptoms you describe such as tiredness, confusion, not eating along with the ascites does sound like it is coming to the end and those days are truly horrific for all. Mostly because you can't do anything to help and they are agitated and irritable due to pain. It was at this point that I kissed my dads forehead and told him that we were all going to be OK and that if he wanted to go, then he could without worry. His eyes filled with the few tears his body was able to produce and he managed to nod and smile.. he passed a couple of hours later. 

 

Things change so quickly with pancreatic cancer so take in the precious time you have - tell him you love him, tell him the things you will do in your future - make him smile as many times as you can and let your heart fill with as many precious moments as possible during this time. 

 

The tears don't seem to stop for me, and the pain doesn't go away. It's a constant heaviness in my chest because pancreatic cancer is very traumatic for everyone's life it comes into.

 

I was you just over a year ago, I send you all of my love. Xx

 

[Sonia1]

Thank you so much for messaging IMissYouDad and sharing your experience x

 

Your post has brought tears to my eyes and I cannot express in words how sorry I am that you lost your dad in such a short space of time to this horrible horrible disease.

 

The heaviness in your chest has best described what I also feel every second of the day.
 

I am torn about wishing and praying for his recovery and then about wishing he simply passes as peacefully as possible so he no longer has to suffer. I cannot fathom what he is going through and feel guilty for even writing that. 
 

I try my utmost best to make conversation when he’s awake but it’s not really going too great - he has some moments where he will interact but just chooses not to speak much. 
 

You are 100% right about quickly things can change. He has had a few awful days and this morning he has asked for weetabix and then ate it too which is a miracle in itself. He feels nauseous a fair bit now which I will discuss with the hospice nurse when she calls. 

 

I just can’t get my head around where we are at with this horrendous rollercoaster. One day I am convinced he is displaying end of life symptoms - another day I feel like he still has some fight left in him. 
 

I will try and chase the hospital for an appointment with oncology for some answers too this week. I just feel so anxious and scared all the time about it all.

 

You are an amazing person for still replying/ helping others on this forum despite going through the pain you feel and I thank you from the bottom of my heart. Xx

[broju]

Oh Sonia1and IMissYouDad, there will be many like me who have read your posts and wept again, but feel unable to express the depth of sympathy, sadness and despair they feel at the whole pancreatic cancer experience. It's a nearly a year since things seriously began to decline for my husband but still I feel so much, with maybe even more intensity because he's not here to give even the glimmer of hope we kept alive.

My thoughts are with you both and the many others unable to shift the heavy sadness. Much love.xx

[Sonia1]

Dear Broiu,

 

I cannot tell you how grateful I am for the fact there are such amazing people out there like yourself and IMissYouDad.

 

You still take the time to reach out to others to offer some form of help/comfort despite the never ending deep sadness you now carry yourselves. 

 

thank you xx

[Floofmom]

It's a horrible situation that we all find ourselves in and I send my best wishes to you all. My Dad said last week that my mum was "unresponsive" when he tried to take her bloods.  Of course I immediately thought "this is it, can't be long now" and prepared to head back down south but after a few days she has improved again.  This keeps happening and to be brutally honest I am a little worried that I am shrugging it off because she does always make a come back but I know that actually one day she won't.  I am often worried that this may be the end of how will I know when it is the end.  I completely get what you were saying you don't want them to go but also you don't want them to be suffering.  We have been living on the edge for 8 months now with ups and downs and not knowing what to expect.  We haven't been at the confusion stage yet (just for a day or two), that must be very difficult for you.  With regards to the nausea, is there any medication that may be suitable for your Dad?  My mum has some which seems to work (begins with an L) and it has the advantage of giving her a reasonable nights sleep.  Thinking of you all x

[Sonia1]

Hi Floofmom 

 

I have just got off the phone to the DN who said they would come and inject an antisickness this evening 

 

Dad seems to have a build up of mucus too which is making him feel ever more sick - has your mom experienced this at all? I’ve been told it could be due to lack of activity and being bedbound. I was hoping they’d give something to relieve this but nothing as of yet. 

 

The GP came and said she does not think his swollen abdomen is ascites but may be constipation. The DN had said otherwise. Who is right? I don’t know

 

I have called the hospice who said they would come out tomorrow to assess him. They suspect the zomorph he’s having may not be sitting well with him - he is jittering/having mini spasms, having bad dreams and confused.  

 

I called the hospital today too and they said no point pushing for an appointment with oncology as they won’t consider dad for palliative chemo given his condition. He is too weak and unwell. I wish I could argue with this but I couldn’t. 

 

I am in awe of the fact you and dad are dealing with this 8 months on and I think your mom is amazing .
 

It’s not even been 3 months for us and it feels like a lifetime. I don’t know if any of us have it in us to go on any more. I think everyone’s ‘hope’ for him to pick up seems to be decreasing as the days pass. 

 

if you don’t mind me asking, is your mom eating well(ish)? Dad has one weetabix per day, that’s it. He has given up on the fortsips too  

 

[Floofmom]

Oh he's really not eating much is he?  My mum doesn't eat much but does try to eat three small meals even if they are very small. Some days however, she struggles to manage much at all.  There is a bit of a difference between constipation and ascites.  Morphine drugs make people prone to constipation.  My mum did have that and it became apparent when she was struggling to wee.  The nurse came, took her away and scanned her and gave plenty of laxatives.  She was much better after 24 hours.

My mum wasn't a candidate for chemo as the cancer had spread and they advised that it would affect the quality of her remaining time and not add much to her life expectancy.

To be fair, it is mainly falling on my Dad as they are in the south of England and I am in the north of Scotland.  I am in awe of his dedication to looking after my mum.  I try to visit every 4 to 6 weeks.  My sister is only an hour's drive from them so she can pop in a bit more often.  I speak to them every day though and am grateful in a strange way to have the opportunity to spend time with them.  My friend at work had a horrible shock when his Dad collapsed one day was taken to hospital that day, diagnosed with Pancreatic cancer and died 4 days later.  

Let's hope that the antisickness drug helps and also that they can help with the swollen abdomen.  If it is constipation that might account for him being so out of sorts.  I am not sure about the mucous, I can't remember my parents mentioning that but I will ask.  Are his lungs working ok?  My mum's are badly affected now.

Let us all know how you get on xx

[Sonia1]

Hi Floofmom 

 

The DN has come and gone - administered Levomepromazine just a short while ago. He seems to be a bit calmer, falling sleep. 

 

DN also commented about dad’s swollen belly but said it’s not too bad just yet. I think hopefully the hospice nurses tomorrow will be able to confirm what it is. Dad is still going to the loo frequently(ish). Number 1 & 2 which makes me think the constipation may not be the only reason his stomach is out. Dr Google tells me it could be due to the spread of the cancer too. 

 

Dad’s lungs seem to be okay but he has shortness of breath just going to the toilet and back so I am again not sure. 

 

We were told on 24/5/22 that the cancer was a local spread as opposed to anywhere else. The Gastro Consultant said he suspected stage 3, possibly 4 as the lymph nodes and duodenum seem to be affected. We were told a cancer specialist will be able to tell us more and since then we have spoken to no one about staging or spread.

 

I really wished I could get some answers. I spoke to Lynne ( the specialist nurses on here ) and asked about staging etc and she said the only way would be a further CT scan which wouldn’t be advised. She too said dad sounds too poorly to have any form of chemo  I guess I had some hope it may have helped symptoms or prolonged what life he had but I guess I have to make peace with the fact it just isn’t for him. 
 

I am so sorry to hear about your friend’s dad - it’s absolutely awful. I can’t decide whether losing someone sooner rather later is better than seeing them suffer for months on end. Both are f**king awful but you are 100% right - we should be grateful for the time we have.  
 

I am pleased to hear you get to speak to mom everyday your parents are superheroes in my eyes. Mom for still battling with it despite the odds being stacked against her and your dad for doing everything he can. They are so lucky to have you and your sister too xx 
 

Dad doesn’t talk much at all, doesn’t enjoy watching TV, reading, engaging anything that used to brings him any joy/comfort. It’s just a shitty time I guess

[Floofmom]

Hi, that's the anti nausea drug my mum gets and it really helps her sleep at night.  I was going to message you today because my mum had an in-person visit from the GP today to speak to her about her bloods that were done this week.  It turns out she is very anaemic and he asked her if she had been feeling particularly tired or breathless.  Well yes she had, but had just put it down to the cancer and her only having one lung that works at 25 percent.  He is giving her iron in liquid form and hopes that will really help.  Has your Dad had his bloods done recently?  She also gets vitamin B12 injections every few months and is due one tomorrow.

I am so sorry to hear that you Dad is getting quite withdrawn and losing enjoyment in things.  Has he had the chance to speak to someone about how he is feeling?  I know he has you, but sometimes parents don't want to burden their kids with their worries or look vulnerable or show that they are scared.  When my mum was in the hospice for three weeks a minister came in and sat with my parents, had a chat and said some prayers.  I don't know how religious my parents are (I know that seems odd) but they both found it quite comforting.  I am guessing that any hospice nurses who come in would be able to have a quiet chat with him to see how he feels and if he perhaps wanted some counselling.  Men find it notoriously difficult to open up though.

Yes it is a shitty time.  I seem to have developed a dark sense of humour and become less emotional.  Probably because everything is held in tightly like a pressure cooker.  I suspect that all my emotions will hit at once further down the line.  Hey, ho, we will just glory on for now doing the best we all can xx

 

[IMissYouDad]

Hi Sonia1

 

Thank you for your kind words.. I completely understand the feeling of wanting them to pass because it is too distressing and painful to live. I also felt this, I recall it was at a time where my dad just wasn't improving. He was angry, but it was anger coming from a place of agony and torment. Its hard not to feel guilty about feeling this way but you only feel it out of love. 

 

You mention your dad not taking well to zomorph.. are they the tablets? I think my dad had the tablets and also oramorph liquid - that's all they were dosing him up with throughout his short time with PC and when he had the infection, along with penicillin which was a complete waste of time. He ended up hallucinating and they said he would be better on oxycodone liquid but it still wasn't touching the pain. I think the pain in itself puts them into a different world. 

 

I wonder if the DN can provide some sort of nebuliser to loosen the mucus so he can cough it up.. we had this for my dad but it was in hospital. There is also a medicine which loosens the mucus, I think it's carbocisteine but my dad couldn't swallow properly in the end so he didn't actually take it.

 

I hope you've all had a better day today and that tomorrow brings some light in this dark time. 

 

@broiu thinking of you and sending you love. It breaks my heart to know so many are feeling the way we do. It will be a bittersweet day when they finally make a breakthrough for PC xx

[Sonia1]

Hi Floofmom 

 

glad to hear they’ve done something about mom’s iron levels - dad hasn’t had his bloods checked since he’s been home 

 

im not sure they will do them to be honest as hospice nurse came today and said he is unfortunately deteriorating and we could be looking at just weeks now as opposed to months 

 

they will be sending the DNs to set up a syringe driver - they will be changing meds from zomorph to oxy..something as they thing it may sit better with dad

 

he was on a syringe driver at hospital but then taken off it - now I feel anxious that this time the syringe driver may be for what is left of his life  some people say it’s for end of life but I’m not sure - I know your mom was put on it too but taken off right? 

 

I wish dad would speak to someone but I think as it stands he is quite confused it seems - he says things which make little sense and is worrying about matters which haven’t actually happened for example he said his cousin’s sink isn’t working and that she must be in hospital. Asking me to check if the buttons are working on the remote? It’s really upsetting. The nurse tried speaking to him today and he simply answered in yes no or gestures. He’s really not one to engage or open up at the moment. What he is saying (70% is not making sense)

 

I hope the change in meds helps him with the confusion but only time will tell I guess - they will put that levi medicine in too to help with sickness which is still going strong.

 

I get what you mean about feeling less emotional. Don’t get me wrong I cry like a child when it hits me every so often but I feel there are times when I’m talking to others I feel almost empty/dead inside whilst they are sitting there with tears in their eyes trying to comfort me.

 

It’s a cruel cruel disease.. and it’s so awful to see how many of us are out there struggling with it with our loved ones. 
 

The good news is dad had a Fortisip this evening albeit in a very confused state. The bad news is he is now feeling really really sick and I am waiting for a DN to come out and give him another injection as we speak.

 

The nurse has told me they might not get to me as quick as they’d like due to the commonwealth games..? Great really. 

[Sonia1]

Lovely to hear from you again IMissYouDad x

 

i have just responded to Floofmom about today’s update - seems like it’s taking a turn for the worst but who knows. It has been a shit day for everyone at home.. we are almost taking turns to go into a different room to have a cry and then come back as if nothing has happened. Awful really. My mom is really really upset and it breaks my heart that I cannot do anything to ease her pain. She was probably the one who was the most ‘hopeful’ in terms of her belief that he would beat this irrespective of what the world of medicine are saying  

 

I will defo bring up the carbocisteine with the GP tomorrow. I feel like the nurse from hospice was very much of the view we focus on the pain relief and sickness first and then the other ‘secondary’ issues as it would simply just mean another medication for dad to take which is certainly not keen on

 

it almost feels like we sort one thing out only for something else to go wrong