A forum for family, friends and carers of pancreatic cancer patients

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Drew
Posts: 24
Joined: Fri Dec 30, 2011 7:34 pm

Re: my wife

Postby Drew » Wed Jan 18, 2012 2:04 pm

I sent this clinic an email asking for more detail regarding cancer treatment.

The reply was very informative with links to other sites but the treatment was mad. You'd need to change your entire lifestyle with an intense 8 weeks of treatments then another 8 weeks less intense. It all sounds good and looked good but I could find no evidence of increased survival. Plenty of good news stories from people it worked for but no % figures. And as you can imagine cost thousands ( but if it worked with evidence you'd find the money for it ).

I spent all day researching on the internet.

I also got information and advice from pc UK and spoke to Heather about it.We discussed it for a while and Heather decided shed had enough of needles and couldn't cope with anymore false hope. Based on what I found on the net I believe she made the right call. So our future is in Gods hands.

Good luck to all affected and thanks for the advice.

Drew xxx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: my wife

Postby laura » Wed Jan 18, 2012 2:14 pm

hello drew and heather, glad you did some research and that it helped you both make a decision,so glad you talked to heather, such a difficult thing to do under the circumstances isn't it? well done, perhaps you both can go on living a new normal life and enjoy each other, i really feel for you all, chin up. love laura xx

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: my wife

Postby PCUK Nurse Jeni » Wed Jan 18, 2012 3:08 pm

Drew,

Well done on all your research. I think you have done a fine job of finding out all you can to help Heather, AND taking her feelings/thoughts into account. I think you have done all that you can, and at least you can know inside you that you have made enquiries about what is on offer.

I am a bit taken aback that the treatment cost thousands - I thought probably a few hundred all-right, but not as much as that. You have taken a good stance, and were right to ask for the evidence.

I wish Heather and yourself every good wish at this difficult time, and I hope that there can be some hope for you all.

Kind regards,

Jeni.

Drew
Posts: 24
Joined: Fri Dec 30, 2011 7:34 pm

Re: my wife

Postby Drew » Tue Jan 24, 2012 11:05 am

We've had a busy few days. Heathers brother came home from England to see her for the weekend, it gave her a bit of a boost to see him again and he has promised to return in a few weeks. Gives Heather something to look forward too. Jade our daughter has her upper sixth year formal in a fee weeks also so Heather and her had some fun spending money on a dress lol.

We managed to see the genetic people and have registered with europac, Heathers mother came with us they they also have her blood for research. Big brother is going to see his local genetic people this week too, so I think we are doing all we can on the research side of things. Big thanks to Jeni for the contact. It'd good to know there may be help for our children in the future, so hopefully they succeed and gain plenty of support and funding.

Heather has been very sleepy and confused for a long time now, we had been putting it down the oxy meds. They have been changed to MST now but I haven't noticed any changes. Blood tests have showen a drop in hemoglobin ( is that spelt wright lol ) over 2 weeks so Heather is having a blood transfusion as I ramble on my phone lol , she is sleeping again and I feel like jumping into the bed beside her. The nurses keep catching me on with my eyes closed so its a bit of a running joke at the minute, maybe the novelty will wear off soon so I can get to sleep lol.

Just a wee update to keep me awake.

Drew x

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: my wife

Postby PCUK Nurse Jeni » Tue Jan 24, 2012 12:39 pm

Hi Drew,

Good to hear some news on how Heather is doing. Glad that she had a visit from "across the water"! These events always cheer people up. Great news about Europac, and that was quick too! I think they are great, to be honest, as they always deal quickly with anyone we refer to them, so a thumbs up for them. Let's hope this big screening project they are carrying out will give some concrete results which will help in the future.

Indeed, you spelt haemoglobin correctly! This should make a big difference to Heather in terms of tiredness and energy levels. Lets hope so anyhow. Most people get a boost after an transfusion, and seem to be less tired. I can't remember now if I mentioned nerve blocks to you in an earlier post, but I wonder if her consultant would consider referring her to the anaesthetic team for consideration of this? The idea of them is that painkillers are not needed, as the block should take care of all pain. This would really sort out the drowsiness from medication, and help Heather to have a better quality of life. Anyhow, something to think about.

Kind regards,

Jeni.

Drew
Posts: 24
Joined: Fri Dec 30, 2011 7:34 pm

Re: my wife

Postby Drew » Mon Jan 30, 2012 8:50 pm

Hi all,
Heather had the blood transfusion last week and it hasn't made a bit of a difference.
We had 2 appointments today , surgical and oncologist consultants - both said the same thing, the cancer is causing the fatigue and the MST is adding to it but it is giving her a better quality of life. Some life ah ! I asked both about nerve block and they both said it would help with the nerve pain in her back but that she would still need the MST for the pain she is now getting in het stomach. Sort of defeats the purpose.
Oncologist said trials are not available in Heathers case due to the aggressiveness of her cancer. Heathers cancer was removed surgically and came back during preventative treatments so clinical trials would only mean her having to deal with more side effects along with her current issues. The trials are to find safe doses to reduce effects.
He told us we have very limited time.
Deep down we already knew all these things, but hearing it was Hell.

Mistipop
Posts: 21
Joined: Mon Dec 12, 2011 11:01 pm

Re: my wife

Postby Mistipop » Mon Jan 30, 2012 9:29 pm

Hey Drew,
It's just terrible isn't it? my mum, who is in the hospice now, is also extremely tired and confused. I keep asking why the confusion and night-time hallucinations, they tell us it could be the medicine or could be the stage of the cancer. I feel awful leaving her at the hospice but she lives alone and i am a single parent so we would really really struggle to have her home. Saying that, it's her birthday Wednesday and we are hoping she can come home for the afternoon.
I hope you're all bearing up ok, it's so hard on everyone involved.
X

CFF
Posts: 56
Joined: Fri Apr 22, 2011 9:38 am

Re: my wife

Postby CFF » Mon Jan 30, 2012 9:42 pm

Oh Drew,

I'm so sorry - I completely understand kind of 'knowing' but until you hear it from a doctor you can hold onto a shred of hope. But hearing 'the news' is just heartbreaking. I don't know what to say really other than I'm thinking of you and Heather and your family. Be as brave as you can - and cherish every minute

xx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: my wife

Postby laura » Mon Jan 30, 2012 11:18 pm

hello drew and mistipop, really sorry to hear about heather, and also your mum mistipop.what an absolutle bummer for you all, i just dont know what to say to any of you any more, everything sounds so trite, you want so much more dont you, my love and thoughts to you and may everything be peaceful, so very very sorry love laura xxxx

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: my wife

Postby louiepc » Tue Jan 31, 2012 6:57 am

Dear drew and mistipop, I am so sorry for both of you, it is the most awful feeling being told this news. A real stomach wrenching moment. Be there as much as you can, cherish every smile, laugh, even a glimpse of one. These are the memories that will carry you through. I hope things are as peaceful and pain free as they can be.
Much love louie xxx

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: my wife

Postby lynbo » Tue Jan 31, 2012 11:29 pm

Hi Drew
My husband suffered the same fatigue and confusion he had haloperidol to stop his twitching too but that made him hallucinate more.
Just take each day as it comes, and love lots.
Your always in my thoughts
Xxxxx

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: my wife

Postby PCUK Nurse Jeni » Wed Feb 01, 2012 11:23 am

Hi Drew,

Really sorry to hear about the consultations. This is a real blow, and must be distressing for Heather and the family. You are very close to all that is going on, and it is bound to affect you emotionally and psychologically. Keep posting on the forums, where you will find some supportive friends, and where you can be honest about what you are going through.

Also, you have my email address if you require other forms of support.
As Lynne said, it is important now for you and Heather to have some quality time together, and your daughter , of course. Don't forget to get the family to help, if you can, by doing practical things - cooking, housework, shopping etc...This will take some of the worries about everyday things from you, so that you can focus on Heather.

Here if you need us.

Jeni.

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: my wife

Postby rachelqt » Wed Feb 01, 2012 8:36 pm

Hi Drew and Mistipop,
Im very sorry to hear about Heather and your Mum. It is a tough time for you guys. I hope you find the strength to get through it all. Your in my thoughts and prayers..
Rachel xx

Drew
Posts: 24
Joined: Fri Dec 30, 2011 7:34 pm

Re: my wife

Postby Drew » Wed Feb 01, 2012 10:13 pm

Thanks all for your kind words and support. I think this fourm is a good way to let off a bit of steam, and there will always be a supportive reply. I have always been the type of person who very rarely shows or talks about his feeling. Typical man I hear you all say lol.
Heather was admitted to the hospice today so that they can spend more time changing her treatment. The plan is to kill the pain and reduce the drowsiness to a minimum . They talked today about a lot of different meds that can be used without the opioids . The main issue for them is the different pains Heather has and the constant change as the tumors grow.
As I said in previous posts Heathers pain was sorted a few times but hallucinations , confusion, and drowsiness became a big problem. Once that was sorted the pain came back, vicious circle. This was al done with hospital visits and home calls and was taking very long. Heather finlay agreed to be admitted so the doctors can spend time with her and hopefully get it all sorted quicker.
Not sure how I feel about all this at the minute , a bit numb I suppose. I am glad she is getting the 24 hr care she needs and the hospice is only round the corner from home , but that word hospice is scary , I don't want today to be the last day Heather was at home.

Drew xxx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: my wife

Postby laura » Wed Feb 01, 2012 10:57 pm

hello drew,, so sorry heather and you are having such a rough time of it, the hospice is surely the best place for heather to get the best of attention and care whilst changing n monitoring her pain control, am sure they will do all in their power to get heather back home to you xx take this opportunuty if you can, to get a good nights sleep, things hopefully will seem better in daylight tomorrow. thinking of you both and your daughter.
love laura xxxx