LIMBO AFTER BAD NEWS

User

Posted 25 May 2015 at 12:05

Hi All,

After my last post regarding the results from my last CT scan.

My dad, my sister and my mum and me had our meeting with the Macmillan. It was surreal sitting all very civilized discussing he wants to be at home, he has a form of how he wants to be looked after and wants the do not resuscitate paperwork. It was like it was happening to someone else. Later that day Dad said I wanted to discuss the funeral with you and your mum and sister. Just that it is up to you what happens I am not bothered, I joked and said thanks for that dad we will kill each other, and we both giggled.

What to tackle first?

Researching and chasing up medical trials? What is out there and what he can have? His observations are pretty good considering the spread of the disease!

Keeping him comfortable (very important) where to start, worsening bladder issues, pain in the back from compressed spine(my dad of course says he can cope with the pain) our Macmillan said she wants him pain free, however I understand he does not want too much pain relief as he does not want to be knocked out. The fatigue that plagues him. Everyone saying enjoy everyday, however with these health issues it is hard to do.

Yesterday we had Grand Prix Sunday at my house with a ploughmans lunch with his love of pork pies, my sister had travelled to get some homemade ones with a good write up. My 10 year old dressed as a nurse and had skittles and smarties as meds to look after us all and bandaged us etc. He was shattered after a couple of hours but loved the day. My daughter doesn't know how poorly her wonderful granddad is at the moment.

And lastly looking for things we can do as a family with our much loved dogs, but difficult to do when the above is plaguing him.

I have managed to get a loan of an electric scooter from a friend I am picking up next week and told him we can pimp it up for him assuming he is well enough to go out.

Such a big presence in our lives always the one joking, laughing, caring, sorting and looking after us all, and I know he is frustrated moving from chair to chair in the house, but he accepts it. And is on his Ladbrokes website placing bets on the horses, and good for him.

God love him, my heart often aches for him what a dignified and wonderful man, I couldn't love him more and tell him everyday.

Has anyone any ideas on trials that I can put to his oncologist?

Any thoughts on helping with his symptoms?

And ideas of things we can do?

My head is spinning with it all, all feels like nothing is happening now and we are left with so many things going on.

I have requested monthly blood test to check his HB, kidney and liver function to pre-empt any future problems. And I wonder if he will be allowed blood transfusions now they are no longer treating him. We are at the GP tomorrow and I am making a list of things to ask.

Sorry all I am rambling, so much going around in my head.

Jo x

User

Posted 25 May 2015 at 16:35

Hi Jo, probably not what you want to hear but it reads to me like your dad has made a decision and would not thank you for persisting with searching for trials and treatment options. Sometimes, the most special thing is knowing when to stop. The pain control is an issue and although it is often said on here that no one should be in pain, I think your dad is correct that there is a fine line between effective pain control and just being zonked out. However, the palliative care nurses are usually pretty wonderful at getting the balance right so perhaps you could persuade dad to let them play about with his meds a bit on the understanding that if he is too sleepy they will re-adjust.

He had some radiotherapy yo his arm I think? Would they be prepared to give a zap to his spine maybe?

You are coping so well - there are no rules for this so just carry on trusting your instincts and creating all those happy memories and photo stories that will comfort you in future years.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 25 May 2015 at 16:47

Hi Jo,

As Lyn says, maybe this is the time for really focusing on the palliative care issues. Your Dad may not be well enough, or suitable for whatever Trials are out there and sometimes they are not in the area in which you live, but an oncologist who is up to date with all these things should be able to inform you.

My heart goes out to you because I did the same as you when my partner was so ill, we had hoped he could go on the Saprocan Trial but typical, his bloods weren't up to it so another door closed. In retrospect, had I known he had so little time, I think I would have concentrated on the things you mentioned, relationship issues, quality of life, freedom from pressure. I think there comes a point when maybe people get exhausted from all the medical interventions but it is so very hard to acknowledge that. especially if you have fought hard for a loved one and on their behalf.

You are clearly doing everything for your dear Dad, as you say, it is wretched watching someone deteriorate in this way. I hope you all come to a decision about the best way to proceed and yes, it involves some very straight talking on issues we are not naturally comfortable with. I am sending my love,

Fiona. x

User

Posted 25 May 2015 at 17:46

Ah Jo, what can anyone say that is helpful.
Your dad knows that you love him, but I bet he loves hearing you say it.

I thought the Grand Prix Sunday was a wonderful idea and as for your little "nurse" I bet that caused a lot of laughter.

The scooter is a good idea but, if dad tires easily he may be better with a wheechair as he can then relax when he is tired and doze off. I am assuming, of course, that the scooter is one he drives himself.

If you are all out together and it becomes difficult for him to navigate it due to either fatigue or pain would you be stuck. ?
He could start off with the scooter, he may really enjoy the freedom it will give him, but my above comment is food for thought perhaps.

Your dad has taken the trouble to talk to you all about how he wants things done. He is trying to make it easier for you all. It could be that he is tired of treatment, tired of feeling like he does.

Last July we lost my brother in law at nearly 90. He was a fantastically fit man for his age but once his cancer took hold he couldn't face any more treatment and just wanted peace and his loved ones with him.
He too took the "Do not resuscitate" paperwork but at his hospice they talked him into the "Liverpool Pathway" which wasn't good for his family.

You've all had your meeting with Macmillan and that is brilliant. You all know where you stand. He doesn't want to be zonked out all the time, I do understand that but there may come a time when he will be grateful for the medication.

What can anyone say except continue as you are.
You have a strong family feeling and in the weeks and months to come that will stand you all in good stead.

I, like the rest of us, am thinking of you. I wish a miracle could happen for you. Bless you all. Take good care of yourself because you will need to be fit and strong for your mum and family.

XX Sandra

We can't control the winds - but we can adjust our sails

User

Posted 25 May 2015 at 20:59

hi joe

bless you all for what you are doing, your dad sounds like a great bloke, not got any suggestions for you re treatment, but I feel sure your dad knows you are all doing the best for him

made me laugh re your young nurse

keep doing what you are doing as you are doing it well

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 25 May 2015 at 21:59

Thank you lovely people, here comes the tears again, all so kind. I can't imagine life without my dad, we have worked together on and off since I was 17 years old. He is my best friend and the voice of reason. Intelligent, kind and caring. My heart aches for my 10 year old daughter totally unaware that her little world will be turned upside down, she loves him so much, and I think I have had 50 years with that man, she only has 10 so far. He is our family's rock and always there when any of us need him, whatever the time. Honestly he truly is an amazing person, so many people say to me, you are so lucky you have had a dad like him. I hate this disease, sorry I keep saying that.

I have been to see him tonight and walked the dog and sorted meds out. He is in pain and sick of going to the toilet (although still not complaining I may add). He has said he may need another catheter.

I am taking him to the doctors in the morning to discuss everything he wants, I have made him a list and he has added other things.

This can't be real, I keep thinking it is a nightmare.

Jo x

User

Posted 25 May 2015 at 22:13

Hi Jo,

It is often so difficult for others to post back to what is such a heart rending post but I just wanted to add my voice, it does sound like your Dad has made his choices probably as much for his much loved family as for himself. You must be so proud of him , some times the person facing this decides when enough is enough . Sometimes we push our loved ones to keep fighting and we become all consumed with the next treatment (understandably we want as much time as possible with them) but some Time's quality rather than quantity spent know making those special moments will remain with you and your children for ever.

Keep doing what you are already doing because you are a lovely daughter, the pain medication is so important and I am sure as time goes on this will be adjusted to help your Dad.

My heart goes out to you at some time in the not too distant future my family will be where you are today X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 May 2015 at 22:19

Bless you and thank you. Just having a bad day I think, tomorrow is another day.

User

Posted 25 May 2015 at 22:50

Just adding my thoughts and best wishes, which accord with the others here. My husband would not want resuscitation and has made that clear, I've told my girls to sit on me if I ever suggest otherwise and rightly so.

I think you are doing all the right things, being there, taking care of your dad and having family gatherings as long as he can cope. Give him plenty of resting time and he will enjoy family time all the more.

my hope for you is a lot of laughter and fun yet to come. Maybe let him talk about the past now too, I regret most sincerely not listening properly to my mum and dad on that subject. We spent time just chatting about old family events and stories with my dad and let him know just how much we loved him.

If he needs the catheter then so be it, I know how much my hubby hates the endless loo visits, but he isn't ready for that yet, though I feel sure that day is coming.

Let him eat or drink whatever he wants, treats won't hurt him. my mum only ate cream cakes for the last month of her life, and why not?

I'm sure your GP will do everything he can to alleviate suffering and you have your dad's back, so he will be well,cared for.

Take time for yourself, do as we all do and do your crying elsewhere, it's bound to happen, nothing wrong with showing emotion but better for it to be happy smiles and laughter around your dad. Listen to his worries and allow him to talk about any issues worrying him, it's painful but I now realise it's not fair to stop a person from sharing their thoughts.

Sending you love Jo, I know this is hard for you all.

Love Allison xxx

User

Posted 25 May 2015 at 23:49

Thank you Allison x

User

Posted 26 May 2015 at 09:21

it is ok that you cry, it is good that you cry, it helps that you cry after all he is your Dad your Daughter's Grandad and your Mum's Husband and you all love him dearly.

You are doing everything possible to make his life better I am sure all your family are proud of you as we all are here.

In all of this remember yourself it is critical that you look after yourself and give time each day to reflect on the joy that you all share. Your Dad has no choice but any little bit you can do to brighten his days and be happy with him will help him beyond anything you could imagine.

You might want to consider asking the Macmillan nurse if there is any specialist counselling available for your daughter. Young children do not see illness the same way as an adult so this can be very hard for them. The counselling can be really helpful to prepare her for what will come eventually. Other people on this forum have experience of this and may be able to tell you more.

I am thinking of you

best wishes

User

Posted 26 May 2015 at 09:36

Just to say I'm full of admiration for you and your dad. Helping and dealing with the pain control must be so hard for you, your dad and your family.

Paul

Stay Calm And Carry On.

User

Posted 26 May 2015 at 22:44

Well folks, what an interesting day. Our GP was wonderful we had so much to discuss, and I believe out of everyone he will support and look after my dad. But I certainly can see a change from other departments, although very sympathetic and making the right noises, it seems so much harder to organise things now treatment is being withdrawn, I have felt a little angry and frustrated today.

Dad's bladder problems are returning, we took a sample and there is no infection just a small amount of blood. It was agreed with the GP that I would phone dad's Urologist to discuss a catheter as TURPS will not be offered again or any other help. I faxed urology and then got through to the urology nurse who in turn told me to contact the Macmillan who should arrange the District Nurse to do at home. I am not comfortable with that but followed the instruction. Our normal Macmillan was not available and I spoke to one who was not as helpful. She spoke to the District Nurse who phoned me to tell me that they won't do as haven't seen the scan. My goodness what a performance. I will be back on to urology in the morning. I will fax and phone. I am not having him being made to feel like an inconvenience, because he is no longer being treated.. I won't tell him as it will really upset him. I will just keep on until I get sorted.

Palliative care shouldn't be this hard and I was lead to believe that it is to make someone as comfortable as possible with as much quality of life that can be managed. I really hope this is not the start of things to come. I am always really civil but I won't let this happen to him.

We have changed from paracetamol with morphine to ibubrofen and morphine to see if this will help with the pain.

Rant over I think.

Jo x

User

Posted 26 May 2015 at 23:49

Hi Jo,

Just catching up with your thread, having been away for a few days. I guess I come at this from your Dad's perspective as I will eventually be in the same boat. I have a daughter and a son who have been as supportive to me as you have been for your Dad and I know that makes a real difference. I am trying to ensure that my children (they are 32 and 33) understand that I will reach your Dad's position and that it will be important to recognise that and not hide from it just as you are doing so so well. The uncomfortable, sometimes unspeakable truth, is there is always an end point, no matter what treatments are used and your Dad appears at this point. What he wants is for the family to be clear about his wishes and make the most of whatever time is left. It is, as someone else says, quality not quantity that counts. You are giving him inspirational support and you are fighting for his needs which is wonderful. In doing this don't forget to just be with your Dad too and listen and respond to his wishes.

I recall another sufferer on here Ben (nimienton) who decided to stop treatment because it was simply making him very ill. It was a brave decision but during his last three months or so he got to do what he wanted to do spending time with family and we enjoyed some wonderful meaningful conversations. I hope when I get to this unwanted but real stage in life that my children will be as tenacious and caring in their support and love as you undoubtedly are for your Dad.

User

Posted 27 May 2015 at 12:55

I was hoping this situation wouldn't arise for you, which is why I was advising in my original post to make sure you have somebody's name, including Macmillan. We went through the same last year with our brother in law. In his case, due to staff shortages, the district nurse from the GP was also the Macmillan and my sister was rarely able to get hold of her and when she did it wasn't helpful. Too many patients needing her.

Anyway, if you look at the publications page, on page 9 I think it is, there is a leaflet "Quality checklist of your standards of care"

I don't know if there is anything in there that may be of interest to you.

All the best
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 27 May 2015 at 15:16

Hi Jo

I will PM you later but just a thought that might be of interest to you and your dad. My dad has been referred by his GP to the local hospice. They have sent a doctor out to assess him and will be sending a nurse out to help out with any difficulties they have and to manage pain relief etc.

As you know, my dad has seen all sorts of people recently, GPs, hospitals, chemo units, macmillan nurses etc but so far the hospice doctor seems to have been the most helpful and useful.

Might be worth a call??

Speak soon

Rachel

User

Posted 29 May 2015 at 11:51

Rachel,

That is really interesting I will definitely be speaking to my GP reference the Hospice personnel. I hope is not in too much pain at present. And both you and your mum are well.

Jo x

User

Posted 29 May 2015 at 12:06

Thank you to all that endured my rant and sent lovely emails, some really good advice as always from you lovely people.

I sent another fax and then spoke to my contact the Urology nurse who in turn spoke to the Urologist. She called me and asked if we could be at the hospital in half an hour and that the Urologist would do himself in-between meetings.

He had the procedure done whilst I waited outside the room to hear much laughter, as normal my dad being lovely and fun with them.

I don't think the Urologist was very pleased with me, when he passed me outside the room, but had been lovely with Dad so I didn't much care.

The department were unsure why the district nurse would not put in, but I have to say I do understand especially with all that is going on in that area.

Dad is more rested as not up every half hour to the toilet and not as much pain when passing urine. He had his 2 brothers and his sister from Swindon yesterday so that was lovely for him, we made them brunch and afternoon tea before their flight home.

Unfortunately this morning there is all blood in his catheter bag. I contacted the district nurse, who called out and cleaned the catheter, but there is still blood coming through. She thinks it may be trauma and I have advised him to mention the ibuprofen he is now taking instead of paracetamol which is easing the pain. The district nurse is phoning the Urology department this morning for further advice. So I am pleased that we went to have it fitted at the Urology department at the hospital as he will go there if there is any problems rather than a badly run casualty unit in another local hospital.

I am now looking at mobility scooters for him whilst he is able to get about.

We have an appointment with the stair lift people on Monday, which will help both Mum and Dad as Mum had a lung removed to cancer about 6 years ago, so they are both breathless now with the mets on Dads lungs.

Physiotherapy are calling on Wednesday next week to see if they can help with the breathlessness.

And 1st blood test on Thursday to check his functions and HB. Bless him

Jo x

User

Posted 31 May 2015 at 22:35

I'm thinking of you Jo.

Louise x

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