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Prognosis

by sarahpell @ 19. Jul. 2008. - 12:01:15

It's been a harrowing year so far. The events that have unfolded seem almost too unreal, yet, here I am typing about something that I can hardly entertain the thought of.

David was diagnosed and he started his treatment - we tried to be positive, even when things were tough during David's chemo. It wasn't easy. Now, 3 cycles later the chemo is over. It would be easy to think that once the chemo is over, David's quality of life would get better. Sadly as anyone who has been through chemo would be able to tell you, the effects of the treatment are long lasting. Chemo destroys the good cells, and is supposed to destroy the bad and the downright ugly. Chemo isn't the end though. After the chemo came the battery of tests to find out how well David had coped with the chemo - scans, blood tests, etc, etc, etc. David had been feeliung a little better and we both felt more upbeat, believing that we would get some positive news. However, hell is a place called hospital. We received a call from our specialist calling us into the hospital urgently. From experience, urgent calls are never the ones that you really want to receive and they very rarely bring good news.

Sadly the chemo didn't do anything useful for David at all. It ground him down and then spat him out whilst the cancer ran riot. While David had been feeling a little better the cancer was busy spreading, to his spine and even more around his lungs. What a cruel trick life has played. Our urgent trip to the hospital was to discuss an urgent radiotherapy to David's spine. The specialists feared that the cancer would lead to compression of the spine, which could lead to paralysis. Once more, David had to suffer the pain of lying down on hard benches, having yet more tattoos for the radiotherapists and cope with daily trips to the hospital.

The specialist gave a prognosis of "several months NOT several years" - but what does that mean? Even now, having had this knowledge for some weeks, I still cannot type this without tears falling down my face and my hands shaking. Some days, it's almost impossible to talk to anyone because I simply cannot keep my emotions in control, other days, I manage but often have to cut conversations short. People say I have been brave and am a tower of strength to David, but I don't believe that. I'm just ticking over, not really living, not really daring to think much - it's too painful. Unfortunately though I tend to be a deep thinker and consequently I feel in someways that I'm in as much pain as David, except that I know I'm not. David tells me now that he has come to terms with the fact that he is not going to live until he is old and that his life will be cut short. I cannot bear this. I simply cannot. I have to bear it though, it's tearing me apart.

We were advised by our specialist to seek a second opinion - after a long drive we found ourselves in Cambridge for this appointment. I guess we both felt optimistic as we had both chatted happily on the way over there, interspersed with little cat naps from David, it was a nice day and the sun was shining. The specialist was extremely thorough, he asked a lot of questions and carried out a full examination. His opinion though was the same as our local specialist. Comforting in some ways because as least then we knew that we had received the best possible care up to that moment, but disturbing because in our hearts we had been dreaming of a "cure".

Neither specialist were of the opinion that any further chemo would be useful, giving it a less than 5% chance of shrinking the cancer. The Cambridge specialist however thought that as David still felt able to fight on, that a cancer growth inhibitor drug would be the next step for us to take. He predicted that this drug would have a 25% chance of helping, but that the side effects would be very unpleasant.

The specialist also felt that David's breathing could be eased by draining the build up of fluid on David's lungs. Whilst that might seem a simple idea, it would mean a number of days being spent in hospital. He also felt that it might be possible to reduce some of the pain by giving David a form of nerve block which would serve to slow the pathways from the nerve to the brain and hence damp down the pain.

Our local specialist agreed with the growth inhibitor and as I type, we await a call to arrange this new drug. Hopefully to commence next week. David had an x-ray to ascertain exactly how much fluid had built up in his lungs and also to find out how much damage the cancer had done to the bones in his pelvis. Having to walk the length and breadth of the hospital for these x-rays has caused David severe pain. Added to this David had to have a second blood transfusion as he had become anaemic once more.

As I type this, David is thankfully sleeping. I am extremely grateful that he has managed to get some sleep as the pain was so severe last night that he managed only one hour of sleep and that was at 6am this morning. It's very difficult and emotionally draining to see the person you love in so much pain. The pain is such that it makes David rock backwards and forwards. He is absolutely wracked with pain. He cannot get comfortable as the broken ribs and pressure from the cancer in his chest wall means the pain pulses through his body. The sheer effort of trying to lie in one place to prevent himself from being in any more pain makes his legs ache to the point that they too are painful. He can no longer grasp things very well and constantly drops things. This frustrates him as his mobility is restricted. Trying to pick things back up causes yet more pain. All David has to look forward to is pain, pain and more pain. Sleep is a relief. I don't feel that I have much to look forward to at the moment. I hate seeing David in so much pain and it hurts so much to see him cry, and the tears roll down his face as he struggles with the agony he finds himself in.

I type this and feel very selfish, as I talk about how I feel, but at the same time I think of all the other hundreds and thousands of people out there who are suffering more than us. I wonder how they are coping and feel great sorrow for their predicaments and admiration for their bravery. While I dare not feel too hopeful I try and remain positive, and remain committeed to doing what I can to ease David's discomfort.

In the meantime, we await an appointment with a palliative care consultant who we hope will be able to ease David's pain. That I guess will be a post for another day.

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Sheila [Visitor]

19/07/08 @ 17:37

I LOVE YOU DAVID AND SARAH X

Love
Sheila

Lucy Pell [Visitor]

12/08/08 @ 22:13

My thoughts are with you and its absolutely heartbreaking hearing what the two of you are having to go through. I send you both lots and lots of love.

I'm very proud to be part of such a strong, adoring family and I'm very proud of my brother for doing his bit supporting my Uncle to fight this harrowing disease.

xx

lisa Thorpe [Visitor]

20/07/08 @ 13:00

Love to you both.

Lisa X

neta, marg, greg, claud [Visitor]

20/07/08 @ 15:10

love and hugs to you guys xxxx

Dru ( David's K-W's mother) [Visitor]

20/07/08 @ 17:32

I am thinking of you both and actually have reverted to prayers- which I had given up some years ago!! Sheila( my son's partner) is a 'special person' to me and I know how she is suffering with you, too.

Lorna Cherry [Visitor]

21/07/08 @ 18:53

My love and thoughts are with you both. x

Matt Pell [Visitor]
http://www.cancerresearchuk.org/10k/venues/brighton08/
31/07/08 @ 18:31

Hi David and Sarah.

I hear about things from Dad and Gran and from checking this blog. Everything you are going through is simply awful and I wanted to do something other than send a message. I'm planning to do a 10K run for Cancer Research in October. I'd like to run this for you both and hoped this would be ok.

I'll be setting up a sponsorship page for Cancer Research and wondered if it would be ok for me to say why I'm doing the run and say a little about you.

My thoughts are with you both.

sarahpellsarahpell [Member]
31/07/08 @ 23:23

Hey Matt, it's very kind of you to go to such effort for David and I. We would be more than grateful if you did the 10k run. So many people are suffering with cancer and if your efforts can help just one person then it is well and truly worth while. I was saddened when our Macmillan Nurse told us that there were over 600 patients on her list alone and they were all very near where we live. She isn't the only Macmillan Nurse operating in our area either. It makes you wonder just how many people are suffering in the locality.
Thanks
Sarah x

davidpelldavidpell pro
01/08/08 @ 23:53

Matt

Thank you thank you from the bottom of my heart. Yes please use what you want from the blog site or elsewhere to persuade people to donate. I am wondering if it is possible for me to donate - sounds a bit strange - my donating I mean. There have been other friends who have used the Race For Life etc to raise funds for Cancer research.

Money does need raising to get rid of the disease.

Thanks

David

Matt Pell [Visitor]
http://www.run10ksponsorme.org/mattpell
02/08/08 @ 18:51

Hello Uncle David. It's good to hear from you.

I have posted the url of my fundraising page for the run. This way people who read your blog can make a donation too.

Aunty Sheila has already made an impressive start and has set the bar high!

I really hope I can raise a decent amount and that it can make a difference somehow.

Matt.

Matt Pell [Visitor]

01/08/08 @ 12:10

Hi Sarah.

I'm glad you are both supportive of me doing this run for David and you, and everyone else who are suffering with cancer. I do realize that it is only a small effort but, as you say, if it helps one person then that has to be something.

My page is set up and I wondered if you wanted to post the link on this blog so people can make donations? If you let me know then I can post the link for you.

I've also said a little bit about your story on my page and added a photo - I hope that is ok with you. I can let you have a look at it first if you want, Dad has the url. Do you want me to put a link to this blog on as well?

I hope today is a better day for you both, my thoughts, as always are with you.

Matt.

Michael Bruce Portington [Visitor]

08/08/08 @ 20:09

Hi, i heard today that Fiona will be visiting this weekend- she and her Mum keep me informed, along with the Blog. I think of you and Audrey- pray she's no longer driving ! - every day, and also of Dick. It may- i hope- bring a smile to your face to know that i can still do a perfect voice impression of Dick even after all this time: " David ."

You don't have cancer, cancer has you. Stay strong, remain brave. You are loved. I wish you peace.

Sarah Whitby [Visitor]

15/08/08 @ 17:27

There's tears running down my face as I read this- what heartbreaking news. You are both incredibly brave and strong people, I think of you often and hope you know that there are so many other people that do no matter how long it's been or how far away they are.
Love to both of you x x

sarahpellsarahpell [Member]
15/08/08 @ 21:42

It's lovely to hear from you Sarah and thank you for your support. I know it means a lot to David that so many people are out there thinking of him.
Sarah x

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