Worried newbie

[Scoobysnack]

Hi all, I am sorry if this is a bit long but it's my first post and I thought I would get it all out in one go. My father in law John aged 68 was diagnosed with PC in Oct 2015 he also has prostate cancer and a small tumor on his lung. They were going to operate on 21st Dec but he failed the heart stress test and they refused to do it. Since then john has been going down hill and two week ago was rushed in hospital with sepsis and a blood clot on his lung. He was re CT scaned which has show a tumor on his liver and a couple of nodes with nodules.He was OK for a few days but has since been rushed back in with sepsis again. Now been told by specialist nurse she dosnt think they will let him have chemo and she has referred him to the hospice. We have an oncology appointment on Tues 16th Feb (we missed first appointment last week). They also think now there is a problem possible spread to the peritinium. We are devasted but he looks really well and hasn't lost much weight 14 stone plus. I am having a hard time convincing myself of how Ill he is . Any advise would be helpful, does this sound like times running out sorry so long winded regards sue. PS he is on Creon

[Proud Wife]

Hi there Scoobysnack and welcome to the forum.

The best advice that I can offer you is to come on here as often as you need to, whether it be to vent your feelings or ask any questions that you are not sure of. I am pretty new to the forum myself but have quickly come to realise there are some really lovely people on here, ready, willing and able to share their wealth of knowledge whenever you need it. My very best wishes to John and just try to take it day by day, as hard as that may be. I hope the oncologist's appointment goes well on Tuesday.

Please remember we are here to support you if you need it.

Good luck xxx

[Scoobysnack]

Thank you for your kind reply. We are trying not to get to caught up in the process of how long ect , but I just keep wondering are these symptoms common for example the blood clot or sepsis or is this just john. We are so desperate to get to the oncologist on Tues because it's seems a very long time ago that they diagnosed him to getting to the stage of treatment . We are 4 month in now and they told us in Oct that john had 2 - 6 month and I know nothing is definite I am beginning to panic it's all to late . But I would like to hear if any body has had symptoms like johns and thanks again for your reply.

[PCUK Nurse Jeni]

Hi There,

Welcome to the forums, and sorry to hear the circumstances in which you are joining.

This is a wonderfully supportive place, and I am sure that you will get lots of help.

The situation sounds quite complex - please do feel free to contact us tomorrow via email on support@pancreaticcancer.org.uk or on the free phone number on the home page.

Kind regards,

Jeni, Support Team.

[Scoobysnack]

Thank-you tomorrow we should get some more answers as we are at our first oncology meeting. I am scared but can't wait to get there to be told what is going on . John isn't to good today and in a lot of pain this is the first time he has has strong pain killers (tramadol) and he looks awful. Hope we get there wish us look X

[Didge]

Hi Scrooby snack, I hope you get useful info today. Don't be afraid to ask for a second opinion if not. Sorry that you are in thus situation. We we all help you as best we can. Didge x

[Scoobysnack]

Hi, well we didn't get the news we wanted today, oncology think John is at the minute to ill to have chemo. They have give us an appointment for in three weeks time and that was seconds after estimating his time left as under 3 month, we are devasteated. I truly don't think he is going to last that long going off how he has been in the last 2days. Any one with experience of this sort of thing I would love some feed back please thanks sue

[Didge]

Sorry you did not get good news. I don't know a lot about sepsis except that people with chemo are more vulnerable - but I don't think he has had any chemo yet? Blood clots are common with PC though. One good thing is if he hasn't lost much weight. This cancer can be very up and down with how people are so I do hope he improves. In the meantime concentrate on making his life as good as it can be - perhaps if you give the nurses a ring they can talk you through some things which might help. Good luck x

[Scoobysnack]

Thank-you didge I have spoke to nurses and think I will ring again , it is a very up and down cancer I know . John has been really well until 2week ago the we got him well again for approx a week then bad again but didn't seem to be picking up now. He has fluid in his abdomen and pelvic area and his tummy is massive but sepsis is showing as clear now. They are going to do another endoscopy if he is well enough on Thursday to see what's going on and hopefully drain some fluid off hopefully he will start to feel better by from then fingers crossed And thanks for advice

[Didge]

Hi Sue. Draining fluid off often seems to help people feel better so i hope they are able to do that even if he is not well enough for the endoscopy. I do hope the pain is manageable too. Are you having palliative care nurses at home? If not do ask - they can be a mixed bag but they should be able to help with pain control. Some hospices will take people in for a short time to sort out problems too. I wish I could say something more to help but it is a hard road and you just have to take each day as it comes. Do let us know how things are going if you are up to it. Take care, Didge x

[Scoobysnack]

Hi didge thanks again for reply, as of 2week ago John was fine almost running about haha, so at that time no need for nurses ect . Been going down hill since for the last few days no eating not getting out of bed and really sleepy and very breathless. He hasn't taken painkillers until 3days ago and the ward nurses keep getting doctors to up them to stronger. I am going in to day to have a word with a doctor as I want to know what's going on . They have told us now that they don't think it's fluid but gas ?? What does that mean ? Anyway I need answers today had 3sleepless night s over it all . We have been referred to hospice care when he finally gets out of hospital. Thanks again for your help .

[boa]

Scoobysnack, I am sorry to hear all this about John. I am no expert but as Didge says a build up of fluid in the abdomen can be drained off and give relief. There was also doubt with my husband whether the swollen stomach was gas or fluid. I understand that gas may build up if a person is constipated. Interestingly, the oncologists' registrar was adamant that it wasn't build up of fluid which is called ascites. Four days later after he had been admitted to hospital the GI Consultant decided it was and he was drained. I hope all goes well at your visit today.

[Scoobysnack]

Well what a difference a day makes, john looking and feeling much better. I demanded to speak to a doctor who I pushed for answers mainly about fluid. He then got a liver nurse and she agreed John was full of it, she put a tap in and they drained of 7 liters of the stuff . I am so relieved and less worried at the min . Thursday he is having stent repositioned due to tumour growing over the top of it . Today John has had no pain killers and ate three meals and back to calling me (so I know he's feeling better). Well I am going to sleep I have had a hectic few days being stressed and worried so thank-you al for helping me through it . Until next time xxx

[boa]

That's very good news and John will feel relief with the draining process. Great that he is eating well. When there is a lot of fluid people go off food as they feel full. Hope you got a good night's sleep.

[Scoobysnack]

Hi boa , I slept very well until John rang me to tell me he was hundred times better, I have missed our morning chats . Thank-you for getting me through the last few days I could have screamed haha, well he is having ercp today then hopefully he might be OK for home. And after the drain yesterday his breathing has gone back to normal also he told me he is nil by mouth today but starving (a good sign ). Hope your OK too and I will keep coming back X

[boa]

Good news. I'll just add a conversation that we had with an excellent GI Consultant which is that fluid is likely to return but it can be drained off again. The Consultant said that she had a number of patients who came every couple of weeks for draining. Whilst John may wish to come home quickly make sure that he is fit do so and that there is a care plan in place. With hind sight we didn't have this and it made things a bit difficult at times.

[Proud Wife]

Brilliant news, just brilliant!! Well done for standing your corner and getting John the treatment he needed. Keep us posted xx

[PCUK Nurse Dianne]

Hi Boa and Scoobysnack,

Thank you for highlighting some of the issues about the managing the fluid - called ascites. I thought it may help if added some information that may be a guide for yourselves and others as you are all very good at noticing symptoms in your partners.

As you have mentioned once this fluid (ascites) is drained, it will usually re-accumulate, and this may vary in time with each individual patient. Normally you will find that the more frequently the fluid is drained, the more frequently it will accumulate. Some of the signs that the fluid is accumulating include increased weight gain, and this can be noticeable by clothing becoming tight, obviously by weighing the patient frequently - the rule of thumb is 1kg of weight gain = 1 litre of fluid (ascites) if that helps.

The other signs include decreased appetite, due to the fluid in the abdomen pushing up under the stomach, some patients will also become more constipated, and also increasing tiredness. Difficulty with breathing is another important sign, this may be worse on exertion or you may find your partner is using more pillows to sleep or is more comfortable lying in a chair. Usually the 'shortness of breath' is an indicator that the fluid needs to be drained.

The regular drainage of fluid does also increase risk of infection. It is also important to be aware of temperatures, and patients are more likely to be 'cold and shivery' and feeling very unwell with an infection than complaining of being hot, so an important point to remember.

I hope this is helpful, not meant to be an education session per se, but give you support and confidence in managing care at home as you are doing so well.

Dianne

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

[Scoobysnack]

Thank you Diane I will get the scales out x