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Dad’s Diagnosis - Feeling helpless :(


Sonia1
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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. 

 

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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

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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

 

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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

 

 

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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

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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

 

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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.

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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 ♥️


 

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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

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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
 

 

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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

 

 

 

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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 😔

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