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

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sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: frustrated

Postby sandraW » Thu Jul 02, 2015 12:03 am

Great news that Steve managed his first treatment well, and poor you having to work when all you want is to be at home supporting him, lets us know how he is doing take care sandrax

Fifi

Re: frustrated

Postby Fifi » Sun Jul 05, 2015 1:51 pm

Hi Sheena,

My Dad had Gemcitibine for his first round of chemo. He got on incredibly well with it. His side effects were minimal, compared to some people. Every scan he had while on Gemcitibine, showed shrinkage on his liver. He even had shrinkage on the pancreas, which is quite uncommon. After 6 months, he did start getting mouth ulcers, and they gave him a break. I wish they would have given him Gemcitibine for his second round.

Pleased Steve got on well. Please keep posting here, we all would like to know how you both are.

Leila xx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Sun Jul 05, 2015 6:53 pm

Ty Leila all good at the moment round 2 on Wednesday were does the time go .the chemo nurses are lovely so that helps ,how many lots of chemo do you have till next scan just so I can keep check as oncologist in my mind is not very good .hope you are all keeping well lots of love x

Fifi

Re: frustrated

Postby Fifi » Sun Jul 05, 2015 7:36 pm

I don't know if it is different with different hospitals, but with us it was 6 cycles.

But definitely chase them up if you think they should be doing better, or if you have any Concerns. Is Steve's appetite ok?

Leila xx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Mon Jul 06, 2015 9:02 pm

Appetite is good now put on another 3lbs that's 5lbs in two weeks .So excited ,now weighs 10stone 11lbs still a big drop as he wad over 14 stone before pc but never mind a step in the right direction

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: frustrated

Postby kittycat » Tue Jul 07, 2015 9:11 pm

Glad things are going in the right direction. Good luck for tomorrow.

Sue

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: frustrated

Postby Sueoliver » Tue Jul 07, 2015 10:47 pm

Good luck for tomorrow I hope it goes well. Putting on weight is great long may it continue.

Sue x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Sun Jul 12, 2015 7:06 pm

Had a really busy weekend daughter's party and bbq .Steve took it in his stride insisted on dancing to his favourite song and had 2 glasses of wine, what a party animal.Cannot believe how well he has been ,hopefully will continue next chemo on Wednesday then a week's break yipee x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Mon Jul 20, 2015 10:27 pm

Been to drs Steve has horrible bumpy things on his leg and head they have been burnt off said its not cancer but needs to wear Sun cream all the time. Could this be from chemo or unrelated

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: frustrated

Postby jay » Wed Jul 22, 2015 7:05 am

Hi Sheena, glad Steve is putting on weight and you had a good weekend. When Jem was on chemo he was told to wear high factor sun cream as the chemo makes your skin very sensitive,
love Jayne
x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Thu Jul 23, 2015 7:30 pm

Hi Jayne yes we are using Sun cream now .And wearing a hat ,wasn't told this and didn't really think about it at the time Ty for your tips x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Sat Jul 25, 2015 9:53 pm

Hi to you all .please can you help me do I have to agree to DNR do you think this is a correct way ,or am I being cruel to not agree to it ,I don't want Steve to be in pain ,but I want him with me as long as possible.I'm so confused

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: frustrated

Postby sandraW » Sat Jul 25, 2015 10:55 pm

Hi Sheena,
This was posted by Dianne on another thread a little while ago hope it helps sandrax xx
Dear all,

Firstly Bryansie, I am sorry to hear of your difficult time and your brother's diagnosis. As we so frequently see the forum family are very supportive to you. As I see there are several posts about the DNR I thought it might be helpful to explain this further and I hope this is easy to understand and does not offend any one, not my intention. I will endeavour to explain in a manner that is easy to understand without hurting any feelings.

We certainly do understand the topic of 'DNR forms' can come across as a very 'devastating and difficult question' and I should say very difficult for any hospital staff to approach too. The reason that this is asked of patients, is that they should have the opportunity to express their wishes very similarly to any treatment options, but ideally this question should be asked when there are family or loved ones in the room to support the patient and ask questions rather than leave the patient with no support at such a vulnerable time.

The reason that this question is asked is for purposes of patient comfort, dignity and quality of life. I will explain what the normal event of a patient passing away in a hospital situation and this may help to understand why this is considered.

In the situation that a patient passes away in a hospital, if there is not a DNR form signed, this means that the patient has to have 'active resuscitation' until such time that a medical professional deems the resuscitation process unsuccessful - in many cases this may be 20-30 minutes, depending upon the individual circumstances. This actually will involve the hospital 'resuscitation team' (several members ie doctors and nurses) attending after an emergency 'cardiac arrest call' is made. This will also involve the patient having CPR (cardiopulmonary resuscitation - chest compressions and airway management) and first line cardiac medications injected for a period of time until it is deemed that the patient is not responding to this active treatment.

In some instances hospital resuscitation is successful, but this depends greatly on the patient and their history (ie what necessitated their admission to hospital in the first instance), many other factors including whether the event was witnessed or patient found to be in a state of 'cardiac arrest' some time after the event. In the less common situation that the patient is successfully resuscitated this would entail a transfer to an intensive care or cardiac care unit for expert management, and this may include insertion of invasive lines, inserting a breathing tube and 'life support management', which is not a pleasant scenario for any patient or certainly family to be placed in.

In circumstances where a patient with a cancer diagnosis has been asked to sign a DNR form this should be discussed so that the patient and their family understand exactly what this means. This would require an explanation about effects of prolonged resuscitation attempts, management afterwards and all that this involves. This conversation should also highlight and reassure patients that they are not being forgotten however their treatment revolves around care, dignity and comfort. All patients and family do have the right to question this decision and all potential outcomes should be discussed. Many patients (both those with cancer and those without) may have strong feelings about dying and being comfortable and at peace at this time. The process of resuscitation is not a peaceful process and can result in complications such a fractured ribs (especially if the patient has had treatments that have affected bone strength - chemotherapy), infections from the line insertion and ongoing complications to name a few.

We do understand how upsetting this can be for both patients and families, and in some instances patients may already have thought about this themselves, although of course they may not have shared their thoughts. From a consent perspective it is the patient's role to consent, unless the situation occurs that the patient is unable to consent from perspective of 'mental capacity' and this becomes the role of the 'next of kin'.

Please do feel free to respond and if any one does wish to discuss further certainly we can do this via the support line by email or phone if that is an option for any of you to pursue.
I do hope this helps with understanding and as I suggested not meant in a manner to upset anyone.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
moderator2

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: frustrated

Postby MSH » Sat Jul 25, 2015 11:07 pm

Are you able to discuss this with Steve? As Diane says the decision is really one for the patient rather than the next of kin. I would be angry if I thought someone had taken such an important decision behind my back.

I have been thinking of getting a DNR recorded, the only thing stopping me is that my current health is so good. That said it is bad enough that I will die from this disease, to die twice over would be worse.

Fifi

Re: frustrated

Postby Fifi » Sat Aug 01, 2015 6:28 pm

How are you both getting on Sheena?

Leila xx