My Dads diagnosis

[WilliamS]

My Dad asked his Consultant about Nanoknife and was told that he needed to be stable on chemotherapy and for the tumour not to have spread outside the pancreas.

[allyc1]

Did your dad have the op?

[kittycat]

My husband is booked for Nanoknife in August. Our Oncologist sent his scans to the *** ****, we had a consultation in London and the procedure was fixed for the 1st July but unfortunately Roger was taken into hospital and we had to postpone. We have since sent off his latest scan and he is still suitable and everything is fixed for a fortnights time. I understand that it is now available at one hospital in London on the NHS but we haven't pursued this as we have everything fixed up. We just feel that it is a chance to give us a bit longer together and hopefully that's what will happen, its just unfortunate that its not more widely available because I think it may be the thing of the future.

Sue

[WilliamS]

My Dad hasn't had Nanoknife. He's only had one chemo session so far so not eligible. It is available on the NHS at our nearest specialist centre (in the north of England) and I understand they accept referrals from other parts of the country.

Steve Lewis on this forum has had the op - details on his "So far so good" thread -

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=968&start=630

[allyc1]

William thank you for the info we will look into this, as we actually live in the North so hopefully an option. Kitty cat please keep us updated on your husband and hope all goes well x

[allyc1]

I spoke to my dads oncologist today, he said nanoknife may well be an option and apparently my dads specialist hospital has just started doing the procedure. He has emailed the Consultant who does the procedures and the radiotherapist to see what is the best option. So really just waiting to see. My dad has been unwell this week, and i believe his stent may be blocked, thay have taken some bloods and they say he may get it done next week. He already has a metal one in place, do thet just put another metal one inside it? Does anyone know? Also how is the stent done? Any advice would be great

[allyc1]

We have had a really bad weekend with my dad, he has been shivering, headaches, sick and a lot of pain in his back, he is being admitted today as they think his stent is blocked. He is on antibiotics as the Dr came out at the weekend and they said he had an infection, although they dont seem to be working. It just feels as if he is more down then up, and with having no treatment at the moment as he is waiting for Radiotherapy in a couple of weeks he should at least be feeling a bit better

[WilliamS]

Sorry to hear your Dad isn't so well at the moment and hope they can clear the infection soon. Did the Dr check his blood sugar?

[LMD]

Thinking of you and your Dad. Fingers crossed that they will be able to sort out some medication at the hospital and that your Dad will become more settled again and can build some strength up again. My heart goes out to you - stay strong and positive xxx

[allyc1]

Thanks fpr replying. No they havent checked his blood sugar yet, but he is going in today so hopefully they should check it while he is in.

[allyc1]

We have had a horrendous 3 weeks. My dad had a blocked stent so he had to have that replaced which led to an infection and he has been admitted 3 times in 2 weeks. He has lost over another stone so now he has lost over 6 stone since Nov 14. He has constant pain which is getting worse band he keeps getting told that he should have no pain. The Oncologist mentioned a nerve blocker. Does anyone know how they are given? Also he hasnt had chemo since the end of June as awaiting radiotherapy but just been too unwell. His tumour markers were raised last week so he has to have an emergency ct scan next week, the Dr thinks maybe his tumour may have grown! Or pressing on his nerves more. I hope the latter. Would appreciate any feedback

[jay]

so sorry your dad is in so much pain, my husband also had a blocked stent and got biliary sepsis, he was in terrible pain too, I was told some people with pc cant digest pain killers if they are given orally, my husband ended up having iv morphine, pethadine which actually worked the best to ease the pain, that was given iv also, take care and thinking of you,

love Jayne

xx

[allyc1]

Thanks Jayne. My dad saw the Dr from our local hospice today, she thinks he would benefit from a nerve block. Is that the same as pethidine? He needs something as its awful to see him in so much pain. He currently takes quite a large dosage of oxycodene which is making him really drowsy and he has oxynorm for breakthrough pain which leaves him drowsy, sick and confused. How's your husband now?

Thanks again

Alison

[jay]

Hi Alison, hopefully the nerve block will ease the pain and hope it's done soon, my husband died last September, he was 49, I , having a hawaiian party on Sunday to celebrate his life, got 50 people coming to the house,take care, love Jayne x

[allyc1]

Sorry about your husband Jayne, I hope you all enjoy the Hawaiian party tomorrow x

[allyc1]

My dad has being admitted as he is in a lot of pain until he has a nerve block. Hoping that will work as don't know what other options there are? He has become very confused and can't remember things and am hoping because its the increase in medication, which they are reducing as they say its too much. He is hardly eating at all and has lost over 7 Stones since Nov so really can't afford to lose anymore!. I would really appreciate some advice as at my wits end. He lives alone and so worried when he gets discharged

[jay]

sending you a hug Alison

love Jayne

x

[Sueoliver]

Hi Alison the hospital arranged for carers to come and help my Mum. Speak to the ward staff about it. The occupational therapist should come and see you as well. We didn't have to ask they arranged it all!

I hope your Dad's pain is better today. Thinking of you.

Love Sue x

[allyc1]

Thank you Sue The consultant mentioned the other day about palliative care nurses coming to help my dad. It's so difficult as he is so stubborn and he doesn't like people turning up,but its a case of he has to. He needs help as definitely confused and disorientated x

[allyc1]

After a truly awful week it doesn't get any easier. My dad was admitted to hospital on Thursday with severe abdominal pain. We have since learnt the tumour has spread to his liver they think.They said lesions?. He is on a syringe driver for the pain as nothing is taking the pain away! He is booked for a nerve block on Tues, they want him to go into a Hospice for 1-2 weeks which he isn't keen on. Has anyone else being to a Hospice for pain management? I think he is thinking of the worse which is totally understandable.

[jay]

sorry your dad is in so much pain, some people on the forum went to hospices for pain management and they were outstanding,a long time to wait to get a nerve block, next Tuesday could you push for an earlier appointment to get it done? Take care,

love Jayne

xx

[Sueoliver]

My Mum was in our local hospice Easter time and I can only say they are wonderful. She was only there for 1 week and I can't praise them enough. I think she was scared but now she wouldn't hesitate to go there again.

I hope they get his pain under control.

Love Sue x

[kittycat]

So sorry to hear that your Dad is in such pain, my heart goes out to you. It's so difficult to see the ones that you love so suffer as they do and every day of waiting for something to be done seems to be an age. I can imagine how you feel at the moment as I'm going through a dreadful time myself right now and I can only hope that things improve for your Dad soon.

Sue

[allyc1]

Thank you all for your replies.It does help if you know your not on your own x

[PCUK Nurse Dianne]

HI Alison and other forum members,

As you know we try not to disrupt your 'flow' amongst yourselves, however it is often helpful to hear from us and what may work for you. Alison you mentioned that Dad has been offered potential care in the hospice and I wanted to explain how this may work, and this may be helpful for others to be aware of too.

Most hospices will take patients for 'respite' or 'symptom control' admissions, not just in the last weeks of life as many people believe is the role of the hospice. We are aware many patients may be quite anxious about admissions to the hospice, however we can give you some great feedback from patients and their families who have used the hospice environment for short stays and to have symptom management (ie pain, nausea) or some respite if required. The beauty of this is that the hospice environment is very different to that of a hospital, and also when patients are able to be discharged back home, you will still have access to the hospice as a resource if you need advice, guidance or if you wish to have the hospice team visit at home.

This is a great resource that is so often under used as many people are not aware of the care options. Please do feel free to be in touch with us if you wish to have a longer conversation about this as we can talk at length if you feel this would be helpful. (Support line - freecall 0808 8010707 or email: support@pancreaticcancer.org.uk).

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK