Any advice appreciated

[nick415]

Hi everyone.

I've joined this forum as my dad has just been diagnosed with PC - he's in his mid 70s. I thought it maybe useful to share some of the issues involved, and hopefully pick up any bits of advice or tips that may come in useful. The whole thing started a matter of weeks ago when he experienced shortness of breath when half running to catch the bus. He went to see his GP who took an x-ray of his chest, they identified that some excess fluid had built up on or near one of his lungs. He was then given a date of approx two weeks later to attend a CT scan, his GP didn't seem massively concerned as there were no other symptoms and blood tests were ok. A couple of days before he was due to have the scan, his shortness of breath went from being reasonably mild to fairly severe, so he attended A&E where they admitted him to hospital. A further x-ray showed that there was now a greater amount of fluid that had built up.

On admittance to hospital he was extremely fatigued, and even walking 10-20 meters was an effort, his voice was also notably weak. A procedure called Thoracentesis was performed to remove fluid from the lung. It was at this point I became slightly more worried as the fluid was coloured red, I just thought that it can't be a positive sign. On the plus side, he picked up almost immediately after the fluid had started to be drained. He pretty much looked like his normal self, the strength in his voice returned and he was in good spirits. The fluid continued to be drained, and a few days later he had a CT scan which proved inconclusive. The scan results showed a couple of spots on both his Pancreas and Liver, but they were not able to identify what they were. A further CT scan a few days later confirmed that he has cancer in the Pancreas and Liver. There is also a nodule on his lung which they are unsure about.

This was obviously devastating news, the next few days literally felt like impending doom and the world was about to end. I quickly realised that I wouldn't be doing anyone any favours by feeling like that, and I had to pull myself together! My dad was given an appointment with an oncologist (which is early next week) and he remained in hospital for 18 days - he came out last weekend. On his last few days in hospital, they tried to fix the lung fluid issue by carrying out a procedure involving using some sort of talc to seal the space where the fluid was collecting. This procedure apparently has a good success rate, but the Dr said it didn't look like it had been completely successful. The next step is to have a pleural catheter, which will allow the fluid to be drained at home. He was discharged from hospital and told the clinic would be in touch within a couple of days to sort out the catheter. Unfortunately, six days have gone by and no one has been in touch. Perhaps expectedly, my dad has now regressed day by day, back to the state he was in before he was admitted to hospital. His GP has called to see him, and has said it looks like the appointment to have the catheter fitted has been lost in the system - he's now chasing it up as a matter of urgency.

Hopefully things can improve somewhat from here, his care in hospital was great, but what has gone since he was released is an absolute shambles. My own personal experience so far is that the whole thing doesn't actually seem real. My dad has been extremely active upon til a few weeks ago, he still works and was getting plenty of exercise. The absence of any notable symptoms seems quite remarkable. His appetite and weight had remained roughly the same, although he's now not eating as much and dropped 11lbs since he went into hospital. Looking back, there may have been a few subtle hints over the last few months. I see my dad for a few hours each night, nearly every day, so know his demeanour and mannerisms really well. I did notice he sometimes seemed a bit worn out just before bed time. I simply put this down to getting older. He also has occasionally looked slightly withdrawn and ponderous, which isn't part of his normal personality. It was only marginal though, and I wouldn't have really thought anything of it until subsequent events.

Next step is to get this lung fluid thing sorted, and then see the oncologist. I understand the prognosis isn't good, but I'm sure the best policy is to retain some hope.

Thanks for your time, Nick

[WifeampMum]

Hi Nick,

Welcome to the Forum but I'm very sorry that you have cause to be here. I'm sure you'll find it a very warm and supportive place. You can come here for practical advice and its also a good place to let off stream. It sounds like you've managed to "pull yourself together" really well but a bit of venting here may really help from time to time and everyone will understand.

I can't recommend the Support Line nurses here highly enough, and if you're seeking practical advice they are probably the best place to start.

You are now on a roller coaster journey and I wish you strength and good luck as you continue to support your Dad. I hope your Dad's fluid drainage gets sorted very quickly and that he has a positive meeting with the oncologist.

W&M xx

[Veema]

Hi Nick...I've nothing further to add apart from get the palliative care team on board...ours is run by our local hospice and they were brilliant at liaising between all the medical professionals on my husband's behalf...saved me lots of time on the phone!

Good luck with the oncologist appointment, just bear in mind that his age, his general wellness in himself and the progression of the disease may mean that chemo may not have much of an effect and he may then decide to not go forward with treatment...this is by no means giving up, there's a lot to be said for quality over quantity. Having said that, he may respond really well to chemo and it may give him some extra precious time with you all. My husband was much younger, but he tolerated chemo really well and it didn't really impact on our lives too much.

Much love

Vx

[Guest]

Hi Nick,

So sorry to hear that your lovely Dad has PC, we can well understand why you felt like the world had caved in. Sadly there is no good way to tell someone that they have a life limiting condition or just how life limiting it can be. It sounds like your Dad is fairly fit apart from the fluid on the lung issue which we all hope can be fixed quickly. In general the younger, fitter and stronger people are the better they do in terms of treatments and life extensions and the medics consider your Dad to be young!

The advice to get the GP to refer you to the palliative care team is well placed. They do far more than end of life care at which they are the experts, they teach carers and patients how to live well, manage pain and chemo symptoms and so much more including diet and the need for Creon enzymes which will become very important at some point.

You should also get the hospital specialist nurse to send form DS1500 to Macmillan Finance so that they can claim the full allowances for your Dad, they can do this by phone with him and he should not delay doing it because even though he may not need the money now it can be put away for when he does and it will mean that he has finance in place to support him and his carers as taking people to hospital and looking after them during treatment is time consuming and may mean someone has to take time off to care for him. You may think it strange to bang on about money at this stage but anxiety over finance is very common among patients and carers and it can be avoided if someone pays attention to it. Many firms who run pension schemes will also pay pensions early in the case of terminal illness. MacMillan and the palliative care team can often help.

Finally, keep the GP informed and make a friend of him or her. The GP is the person ultimately responsible for your Dad's care and is key in the system. As others have said, don't be afraid to ring the wonderful nurses on here if you are worried about anything or want anything explained. They are absolutely ace!

I wish you, your Dad and the whole family the very best. Dad is strong, he has youth on his side and I am sure there medics will try really hard to give him some good options for treatment. Try to make life the very best it can be and concentrate on that.

Marmalade xx

I

Edited April 23, 2017 by Anonymous

[PCUK Nurse Dianne]

Hi Nick,

Welcome to the forum and thank you for your input. I am sorry to read your story. I will take the opportunity to email you directly to share some information with you and hopefully be able to guide you in this instance.

Kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line: Freecall 0808 801 0707

[nick415]

Thanks for the replies everyone.

Things aren't too bad at the moment, although there is an element of constantly playing catch up. Low energy levels have been an issue, but he's got half of his appetite back which has been a plus point. A follow up appointment has been made with the oncologist, as the immediate issue was to gain some more strength and start eating more.

[raun cesar]

Hey Nick, welcome here and hope you like the support here. I wish you all the strength to support your Dad and Good Luck for the appointment.