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sheena
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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

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  • 2 weeks later...

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

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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

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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

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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

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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

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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.

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All ok at moment started second round chemo saw oncologist on Tuesday ,not much to say just have scan in 6 weeks time.Steve in good spirits in fact he has been extremely happy ,which is nice as he went through a miserable stage.has decided on DNR as we want him to stay at home if we can.hope all is well with you Leila x

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Hopefully didge my eldest daughter and son in law are qualified a&e nurses .So will be able to give drugs etc .my only fear is my youngest 16 not sure how she will cope ,maybe have to stay at friends .Steve is in such good humour we are staying up quite late just chatting about any old rubbish .which is lovely as most of the day I'm either at work or we have visitors.So it's nice to have some our time .hope all is doing well love and hugs sheena

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  • 3 weeks later...

Hi Sheena, my Dad was diagnosed the day before your husband. He has also had swollen ankles and feet, which the doctor told him was part of his ascites - a side effect of the p.c. and unrelated to chemo. Dr just told him to put his feet up on a footstool to ease it. Dad gets very sleepy when his sugar levels are high - is your husband's level stable? Best wishes.

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Ty yes sugar levels are around 10 lowest we can get them.Steve has been good over last few weeks ,So bit of a shock to see him like this.Have chemo on Wednesday so Will ask nurses about it then

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  • 4 weeks later...

Just a quick update Steve is doing really well at the moment .He decided he would clean out the loft don't ask me why ,he struggled to get in there when he was well so God knows how he did it now.anyway I was at work and didn't know that was his plan ,the phone rang and in a sheepish voice he said ,you know the photos do you want me to bring them down, I'm like we're are u .in the blady loft you stupid woman were do u think I am.my first reaction was omg get out of there ,which he said I'm ok there's loads of stuff up here I'm gonna sort it out .I couldn't wait to get back home as I had visions of him being stuck up there.anyhow he enjoyed his adventure and was quite chuffed with himself ,I on the other hand discovered that all the rubbish is now piled up in my bedroom waiting for me to choice what I want and what's to be dumped .x

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Hi Sheena,

How wonderful that he wanted to sort the loft! Must be feeling better! It' something I have been putting off for a long time!

I am so pleased for you both enjoy these times and make the most of it.

Lots of love

Sue x

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Seen oncologist today everything has stayed the same weight white cell count cancer markers etc,so we will now do the 4th cycle of chemo scan on October 9th so fingers crossed we have no spread or larger tumour x

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A bit of a mixed week Steve had chemo today and is fine but has lost 6lbs this week so a bit of a worry as he has been maintaining his weight for weeks. Had bad diaroah at the weekend with bad stomach pain ,but feels ok now.

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So it's scan day tomorrow ,this is it the final step ad to whether chemo is stopped or we carry on.the annoying part is we don't see oncologist till 20th for results.I don't know if I want to know or not .hoping things have stayed the same,so we can plod on .if it has grown then chemo will end so no more treatment ,seems like a final ending so sad .Steve has fought this with courage and I'm so scared he will give up if the news is bad .

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Hi Sheena,

Its such a long time to wait to see the oncologist, have you tried ringing his secretary and explaining how worried you are, to see if you can get an earlier appointment. I know we don't like to be a nuisance, but to be honest who cares!! I would give it a try. Hope it all goes well for tomorrow, take care love sandrax xx

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Scan done tried to get earlier appointment but was told 2 weeks was norm as they have to get the results.had chemo today and I nearly cried ,Steve thanked them for all they had done,is he feeling something? God these next 2 weeks are going to kill me.He apologised to me for being bossy.says he is frustrated because he can no longer do some things and hates to see me have to do them.on the plus side we are having a Halloween party for all the family never had one of these before .been on Amazon and we bought loads of decorative things .So something to look forward to hope all is ok with you all love and hugs xx

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