Discussion forum - Pancreatic Cancer UK

It's all my own stupid, silly fault.....

So, I wrote to a VIP at a VIP hospital in London. I won't use names or what treatment was open to me, but will give a run down on what happened.

In my initial email to the VIP I asked about a trail he had pioneered and asked if it would be possible to be part of the trial and please could it be on the NHS. I didn't really receive an answer to this, but the VIP asked for my case notes, so my Oncol's secretary sent them to the hospital. Next he asked for my latest CT scan results and again my Oncol's secretary sent them for me - she's such a love. The VIP asked for the CT image scans on disc, so I bought them from my hospital, sent them signed for post and waited with bated breath.

Last Friday - 2nd August I received an email from the VIP and I quote :
"Hi, The results are good and it looks suitable for the treatment. Please liaise with my secretary coming to clinic if you want to discuss treatment"

I was ecstatic, over the moon, shaking with anticipation, so I rang the clinic that very minute.

I seem to have a bit of a rap ore with the VIP's secretary through our emails and she was so happy for me when I rang to make an appointment, the conversation went as so......

(HS)= His Secretary

HS "So happy for you Linda, so how soon would you like to be seen?"
ME "As soon as I can"
HS "Okay, what about August 14th at 2.30?"
ME "Brilliant, how do I find the hospital as we will probably be coming to London on the train?"
HS ....explained how to find the hospital.
HS "Linda, I have to ask, how will you be paying?"
ME "Erm, I asked VIP if I could have the treatment on the NHS and because he asked for my notes etc, I presumed it would be okay, thinking there is some kind of contingency for NHS patients?"
HS "What kind of cancer do you have Linda?"
ME "Pancreatic"
HS "Oh my goodness Linda, I'm so sorry, he doesn't do Pancreatic cancer on the NHS"

Okay, by now my head was whirling, I was shaking with fear I was going to lose the treatment. Right, hubby's mum and dad will help us out, it'll cost about £2000 or £3000.

HS "Linda are you still there?"
ME "Sorry, I was just thinking, so how much will the treatment cost?"
HS "It's £400 for the consultation and £13,000 for one course of treatment"

I nearly passed out. How the hell can we find £13,400? It just isn't possible.

ME "Oh my goodness, I can't possibly afford that amount of money, could it be paid in instalments?"
HS "So sorry Linda, no, the hospital will want the money right away and so will the treatment team"
ME "I'm going to have to think about it and get back to you on Monday"
HS "Okay Linda, take your time and if I win the Lottery this weekend, I will pay for your treatment"

Bless that lovely, lovely girl.

Friends and family have talked about fund raising and we looked into a second mortgage, but it would cripple us and then my daughter said "Mum, what if you need more than one treatment, it could run into thousand and if anything happened to you, dad wouldn't be able to cope".....She's right.

So, Pancreatic cancer misses the boat yet again. I've had to cancel.

I just cried and cried, but I've got to carry on believing as one door closes another door will open for me.....I have to be positive I just have to.

Thanks for listening
Linda

Linda I am so sorry to read your post and truly understand how frustrated/deflated you must be feeling. I don't understand why money has to always come into this but If I win the lottery this weekend I too will send you the money. Lots of love sue.xxx

Hi Linda

I think I know which hospital you are referring to.

Coincidentally enough I wrote to my MP yesterday - she has already offered to raise issues with ministers about PC if I write formally to her (she has intervened for us in the past). One issue I raised in the letter was the fact that there is a procedure available in this country that can deal with some previously inoperable tumours but currently available only privately for £13k.

She's a good hard working MP and I'm sure she will do what she has offered to do.

Here's hoping things change..

Cathy xx

Sue....Bless you xx

What a flippin' good idea Cathy I feel an email to my MP coming on right now; thank you xx

writing a letter to my mp as well, this is horrendous, I can't imagine how your daughter felt giving you that information of how it will effect the rest of the family MY GOD ... personally if it was my hubby I would just do it ... do the second mortgage or sell up ... what value is your life, its priceless .. am sure your hubby would say this too ... can always go private and start again .... you may not get this chance again.. am keeping everything crossed for you and if I too come into the lottery you will deffo be the second thing I do .. the first being trying to get the same treatment for my mom ... can't believe in a civilised society money comes before health its disgusting absolutely disgusting .. I wish you well and hope your mp kicks ass .. am praying for you xxxx

Oh Linda that's just rubbish news ;-(. I plan 2 write 2 my mp too and if money was no object I would take you,bob and everyone else for treatment!

Very sorry to hear of your bad news Linda.

You don't say what the trial is but I suspect you're looking at IRE or electroploration. If this is the case then NICE were calling for more trials into this promising new treatment back in February. Surely there will be on-going NHS trials somewhere.

The letter I wrote raised a few areas I felt ought to be raised about PC which included the Nanoknife procedure. This once had very limited availability on the NHS but now available only privately. It can be used on some "inoperable" tumours where there is involvement of nearby blood vessels or organs. I didn't think £13k was a lot if the treatment "cured" someone who, if they didn't have the surgery, would in all probabllity incur the NHS with other expence down the line.

Linda - you didn't say if this is what you had looked at, I just thought it sounded similar so hope I haven't broken any confidentialities.

Mike - I haven't heard about either of those procedures. Would they be suitable for an advanced patient do you know?

Cathy

Hi Linda and others who have commented,

Sad to read your post Linda and of course your devastation at this. We are aware of this here at PCUK and obviously find it difficult to be telling people about the options that are only available privately and usually at considerable expense. We are aware that there may be some NHS tertiary centres trialling Nanoknife in the coming months, however have not received the most up to date information on this at this current point in time. As soon as we are able to update you we certainly will share this with you. This was a topic that was discussed in several sessions at the Pancreatic Cancer Summit on the 4th July. http://www.pancreaticcancer.org.uk/camp ... n-survival
If you do have any questions about this please feel free to be in contact with us on the support line if we can be of more guidance to you.

Dianne
Support Team