Sadness

[Kerry]

The last time I posted on here I was talking about my dads chemo and being accepted onto a trial. When starting this post I hesitated with the title and opted for ‘sadness’ as this is the overwhelming feeling I have deep inside right now.

My dad’s chemo has stopped as he is too ill to continue (after two doses). He’s now in hospital with blood clots and fluid in his lungs, chest and urine infection along with the progression of his cancer. Whilst in hospital he tried to get out of bed and fell and banged his head and was being scanned for a bleed on his brain. We saw an oncologist on day one of seven days and she told me my dad is dying. The last few days have been spent battling with the hospital to stop them sending him home as he has now lost all mobility and my mum cannot cope with caring for him on her own. We’ve asked for him to be transferred to a hospice however you would think we were asking for them to do the impossible. When we were told in May that my dad had stage 4 PC I always assumed if he needed to go into the hospice this would be straight forward and without delay or hesitation however this has not been the case.

I’ve spent everyday visiting my dad in hospital and he is continually telling me that he wants to die.

I’m not even sure why I’m writing this but thought it may help to write it down. I never realised it was possible to feel such a deep sadness as I do right now. I never realised life could ever feel so hard as the last two months has. I’m not sure if life will ever be the same again.

I knew one day I would loose my parents but to loose someone you love to this cruel disease feels at times unbearable.

[Veema]

Oh Kerry...I am so sorry you've reached this point. Unfortunately hospices are a limited resource and there aren't always beds available when you need one. Both my husband and my dad died in hospital and I can honestly say we were looked after beautifully, so if he has to stay where he is, much as you may have wanted otherwise, it's not the end of the world...he will still be cared for and you will still be able to be with him.

My husband died from pancreatic cancer in September 2016 and my dad from liver cancer in August 2017. I loved my husband to bits, but my dad dieing has been far, far worse. They've always been there and you just expect them to always be there. Its been a very strange feeling.

Spend as much time with him as you can now.

Much love and strength

Vx

[PCUK Nurse Jeni]

Hello Kerry,

I am so sorry to read your post and the news about your dad.

Certainly, it is very difficult to watch your dad going downhill, and no doubt, your desire is for him not to suffer in a protracted way.

It has not been easy for your dad, reading your post, with all the complications also, and its understandable that you feel the effects of such a difficult time.

Kerry, do you have any support at all for yourself? I know that you probably wont be thinking of yourself, like many family members/loved ones on here, but its important that you are supported as its a big burden to carry. Its good that you are able to come on here and express how you feel Kerry.

Please remember you can contact us should you need to.

Thinking of you,

KR,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Kerry]

Thank you V and Jeni. I think it just hit me last night - I’d been fighting so hard for the last few days trying to get my dad the proper medical care that I hadn’t had time to deal with my own emotions.

I think also that when my dad was having chemo we had some hope that he may feel a bit better for a while and maybe prolong his life. Now that hope has gone it feels we are just waiting for the inevitable.

I am determined to try and make the end of his life the most comfortable, pain free and pleasant that I can.

I think I may need some help with my own emotions and will look into this at some point. I felt selfish before even thinking about myself but think maybe I should seek some counselling as the last two months have been more traumatic than I could ever had imagined.

[toodotty]

Hi Kerry,

I am so sorry to hear about you and your poor dad. I totally understand how he feels about wanting to die, I too got to a position whilst waiting treatment and asking myself what is the point of this much pain?

You are absolutely right to fight for what is right for all of you, not just your Dad, but yourself and your mum. As a PC sufferer myself I do think it is harder for the carers and close family because of your feeling of helplessness. My husband was completely destroyed by my diagnosis, where as I, after the first feeling of anger and "why me", have become accepting of my position. I recognise my end will come a lot sooner than I planned, but then we all have to go sometime. But I realise that the fall out for the ones left behind may last for years. I took my mother about 6 years to get over the death of my father. So I am secretly planning a "bucket list" for my husband and two sons to do when I am gone. Things that I want them to go out and do that we never got around to as a family. Such as that trip to New Zealand (I hate flying so kept making excuses ...), and that Land Ends to John O'Groats cycle trip that my husband had planned for his 50th birthday when he was diagnosed with a failing heart valve.

Do look for support groups, there are some great ones via the hospices even if you cannot find a bed for the moment at a local hospice. The lovely nurses on this site may be able to help you seek out help, so don't be afraid to contact them.

Sending you a big hug,

toodotty,

xxx

[Kerry]

Thank you Toodotty - you are so incredibly brave. For you to be able to be so thoughtful of your families feelings at a time when you are suffering so much is incredible.

My dad was transferred to the hospice this afternoon. We had almost given up hope that a bed would ever become available for him so it hasn’t really sunk in that it’s happened. It’s so calm and quiet there. The nurses are friendly and don’t seemed rushed at all. We’re hoping to wheel him into the garden for a while tomorrow as he hasn’t been outside for weeks now. It feels such a relief but also makes it feel so real at the same time. I thought I’d come to terms with my dad’s PC but I’m starting to wonder if I ever really will. It’s all happened so quickly - although it seems like time has stood still for the last two months! I know that’s a contradiction but it’s true!

There’s lots of workshops and support at the hospice so maybe my family will get some help with dealing with our feelings. The main thing is my dad should now be treated with the dignity he deserves and hopefully make the end of his life as good and as comfortable as it can be.

[Veema]

Kerry, I'm pleased your dad got a bed at the hospice. I just hope that things remain calm and peaceful for you all now.

much love

Vx

[Kerry]

Thank you Veema. I’ll update my post and let you know how he gets on x

[PCUK Nurse Jeni]

Hello Kerry,

I am also so pleased to hear that your dad has got a place at the hospice - and you are right, they are peaceful and happy places and not in the slightest bit rushed. He will be so well cared for there.

Also great to hear that you might be able to access some support via the hospice yourselves - often, they are there for the relatives as well.

Take Care Kerry - thinking of you,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Kerry]

I wanted to post an update or I suppose a conclusion to the story of my dad’s struggle with PC. I am sorry to say my dad passed away last night (15th August).

The hospice has been amazing and have looked after his physical and emotional needs better than anywhere else could have.

It’s hard to believe it was three months ago (17th May) when he was given the devastating diagnosis and the whole world changed in an instant. I’ve watched my strong, brave dad become frail and weak day by day. Things he could do one week suddenly he could not the next. I’ve had conversations with my dad I never imagined I would, about dying, about how scared he was, about how much I love him (and he me) and how much I’ll miss him. I’ve seen things no daughter wants to see her dad go through and I will never forget the look on his face when he was told he had a terminal illness with no cure. I’ve rubbed his back and felt every bone in his spine. I’ve held his hand and told him every night that I’d see him tomorrow.

At the end I believe he was ready to go and was no longer scared. In some ways it is a relief he is no longer suffering, although the finality if it is hard to accept. My heart aches and I wonder if it will ever truly mend. I hope in time I can remember all the good times and not the terrible way in which his life ended.

[PCUK Nurse Dianne]

Dear Kerry,

It is with great sadness we hear of Dad's passing. Please accept our deepest sympathies from all the nurses at PCUK.

Kerry of course this time is sad and you must all feel so raw. It sounds that the hospice was the best environment for Dad as we know is so often the situation and I am sure he had great care. As you mention patients do often find a place of 'peace' before passing, and we hope that Dad was comfortable, pain free and had his loving family with him at the end.

Kerry please be in touch as you need. Your forum family will support you in the wonderful way they all do, and we think of you in the weeks and months ahead.

With our heartfelt sympathy,

Jeni, Rachel, Nicola and Dianne

Pancreatic Cancer Specialist Nurses

Pancreatic Cancer Uk

Support line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[toodotty]

Sending you my love Kerry,

I am so sad,

toodotty