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Heidelberg University Hospital


Slewis7313
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Hi Holly, Steve and family


Most people say they regret the things they haven't done and not the things they have. Steve has given this his very best shot and although you will all feel gutted by this news you can take great pride in his courage and tenacity.


Best wishes for a speedy recovery Steve and then I'm sure it will be onwards and upwards again in no time at all - you can't keep a good man down.


All our love and virtual hugs are with you all.


Love and Peace


Mike

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Hi Steve and family,

I am so sorry to hear that the op was not a success, wishing you a rapid recovery and that you get home soon.

As Mike said life is all about taking the chances and having no regrets, well done you!


So your battle continues but just with a new strategy!


I am sure you will be posting here again very soon!


Bee xx

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Thanks very much all for the comments. I known only too well that you are all behind me and we are done yet! Perhaps we can call this a trial run for now! If nothing else, I'll have a cracking scar!


Take care all.

Steve

X

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Steve

We are so sorry to hear your news about the unsuccessful op.

All we can say is that you've tried that option ,recover and then battle on with the next option,as they said the battle is not over!

Sending all our love to you and your family

Sue

Xx

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So sorry to hear your news Steve, you are such an inspiration to all of us and I really hope you have a speedy recovery and can get home soon. Love to you and your family and know we are right behind you fighting this awful disease.

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PCUK Nurse Dianne

Dear Steve, Margaret, Holly & Paige,


Thinking of you all at this time. Of course we are all devastated for you, and thinking of you at this time. However, we know you are a strong man, and 'onwards and upwards'. As we know, you are a much respected member of the 'forum family' and great that this wonderful family has been behind you all the way.


We look forward to having your everlasting wisdom and charm back on the forum soon, wishing you a speedy recovery and naturally support you through the next steps.


Take care all.


All our best wishes,


Support Team, PCUK.

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Dear Steve,

This disease seems to pick the strongest people and then throws more and more at them. Paul and I are gutted for you, but know you are so determined, so keep fighting on,


Nikki

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Back in the land if the living. I had a pretty crap day today, but am near enough back to normal. We spoke to the Surgeon who attempted the operation this afternoon and he confirmed that the tumour has totally encased and infiltrated one of the smaller arteries. In cases like this, they consider surgery to be impossible and with a high risk. They would recommend agressive chemo now, rather than wait for the thing to flair up again. We will see the Oncologist early next week to discuss the findings and recommendations with our own Oncologist in Swansea.


Obviously not the result we hoped for, but "nothing ventured" eh?


Take care


Steve

X

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So very sorry that the op did not go as planned as we have followed your journey on the forum. Hopefully they can get the chemo started asap. Good luck.

Terry and Lyn x

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Just wanted to say a big thank you for all the caring comments, they've been a great emotional boost and support to my Mum, my sister and I, and especially my Dad. He has said to me how nice it is to know that everyone is thinking of him and it cheers him that people are taking the time to wish him well.


He did not have a great day yesterday (poor pain management i.e. Epidural drip was left to run dry!) but has had a much better day today, even eating proper meals, cracking jokes as usual and taking a couple of fairly long walks with no pain at all. So hopefully he is now well on the road to a full recovery. Then on to the next step... onwards and upwards!


Thank you all again, it's been so touching to see how much people care, it means a great deal.


Take care,


Holly, Paige and Maggie xx

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Hi Steve and family. Just got back from a holiday with family and I'm trying to catch up with everyone. I was SO disappointed to hear the operation was not successful, it must have been a blow to you all.


You are such a strong and positive family (thank goodness for those!) I know you will continue the fight in true Steve fashion, upbeat and positive at all times.


Onwards and upwards indeed!


Julia x

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Thanks for the comments Julia and I hope you had a good break, though understand it would gave been a challenge at the same time.


The Lewis family are indeed regrouping and working on the next plan of action which should take shape after meeting the Oncologist on Tuesday. The surgeons here have stated repeatedly that the tumour has not spread and is small, so should be hit with aggressive chemo as soon as possible to try and shrink it further (though surgery is no longer an option).


It's been a hard week, both physically and mentally but the story is far from over. It will be interesting to see what the team in Swansea have to say on my return, though in all honesty they have been totally supportive from the outset.


Tubes out tomorrow, my willy and I will be glad to see the back of them!


Take care


Steve

X

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Been away for a week Steve so have only just caught up with news on the forum. I was so sorry to hear that your surgery was unsuccessful, but wishing you a speedy recovery and best of luck with the chemotherapy.

Hilary x

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Oh Holly, I've only just read your message and so sorry the operation was unsuccessful. Though like you say, if you don't try these chances you are given, you'll never know what could have been.


Okay, well one door has closed, but a multitude of others are now opening.


Thank you so much for keeping us up to date.


((hugs)) to you all.


Linda x

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Hi Steve


Ouch!! My trials team have never really discussed the size of tumour with me apart to agree that it's inoperable and to confirm it had stabilised after first cycle of chemo. I'm sure you will continue to consider all options open to you and am inspired by your inner strength. In fact so much so that I will push the Prof more when I see him in a couple of week's time, in fact I think I'll take my stroppy daughter with me to press the point! Can't complain as apart from slightly dodgy guts on and off I still have no other problems though of course my actual pancreas could be sending out all sorts of distress signals that I just don't receive after my nerve separation op!


Good luck with your continuing recovery from your surgery - take it easy and be kind to yourself as just the general anaesthetic is draining. Look forward to your next foray!


Love and Peace


Mike

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Hi Steve,


Been away and just caught up with this. So sorry the surgery was unsuccessful but you are all doing brilliantly soldiering on and looking out for the next option. Chin up and keep us all posted.


Much love,


Kate

x

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Steve. I have read through all the posts and have to say I was on the edge of my seat as I followed your progress. I was so sad that it didn't work out for you. You seem positive and upbeat - I envy you. I wish I could be more like you so that I could be of more use to my husband but unfortuately we are not all the same. I wish you all the luck for the future. Best wishes. Arlene. x

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Hi Steve,

I haven't been on the site since I wished you good luck for the operation but logged on today to see how you are. To say I'm sorry would be an understatement :-( However the Steve we all know and love who has picked us all up when down and given us many a laugh will I am sure carry on the fight with determination and huge strength of character.

Hoping you and 'willy' are feeling better now the tubes are out. You keep your chin up and fight on!

Karen xxx

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Heidelberg.... My take on things.


So I finally made it to Heidelberg for an attempt at a Whipples. It was made very clear to me from the outset that whilst the team were very optimistic, there were no guarantees of success.


As it transpired, what they found after opening me up was (and remains) totally inoperable. The tumour is small (2.2cm) but encircled and infiltrated an artery at a junction with the SMA. Had it been the SMA and clear of any other arteries, they would have considered arterial resection, but history shows an attempt to resect my condition would put me at risk of thrombosis' in the future with potentially dire consquences. The position of the tumour also made the planned use of radiotherapy during the operation dangerous due to the proximity to my intestine.


Some samples were taken and analysed, confirming no signs of secondary disease. I was closed up after one and a quarter hours on the table and moved to a normal ward for recovery and discharged ten days later.


The surgical team made it clear that I am not alone in having a failed attempt at surgical removal of a tumour. They appear to be prepared to attempt surgery if there is a chance that it might be successful. Whilst mine failed, I am sure there are many people still alive and doing well as a result of this 'lets give it a try' philosophy.


I can therefore confirm that Heidelberg do not (unfortunately) perform miracles, but simply seem to have different criteria when deciding to operate. It has become clear that CT scans do not tell the whole story and there is a certain amount of experience-based judgement when making the decision for surgery. In my case, the available information indicated surgery MIGHT be successful, so it was decided that it was worth a shot. We know from other stories regarding Heidelberg, this has lead to some really good outcomes. This philosiphy is self-feeding as it means more operations are attempted, increasing experience and expertise proportionally. They carry out between five and seven Whipples attempts every day, but the whole system is geared up in the same way for all surgical procedures, not just Pancreas related. Their surgical skills are renowned with patients coming from across the world for treatment and not just within Europe.


A couple of final personal notes:


Any regrets?..... Absolutely not, as I would always have wondered if surgery was an option.


Cost / insurance? My Employer's insurance called today to confirm that they will pay all Hospital costs (€52,000). This was a one-off discretional payment agreed by the Trustees and typical of the amazing support I have received from my Employer (Fujitsu) from the start of the illness.


By Pancreatic Cancer standards, I remain incredibly lucky!



Steve

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You are an inspiration Steve. Even though your own operation was unsuccessful you are still giving hope to many others with your experience of Heidelberg. I wish you well. Thank you. Arlene.x

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Steve I've been looking out for an update and as always you've been incredibly generous with helpful insight. Assuming it's nanoknife next? If so you and my Mum might be nanoknife buddies (you might have seen my thread update). Apart from the bloody awful placement of your tumour her and your situation are very similar (2.5cm in uncinate process with splenic/portal vein junction and right branch hepatic artery involvemnt with question marks over left branch for us) with no signs of distant spread.


Have been thinking and talking lots about you with mum, she asked often about you in the run up to surgery and was distraught on your and your family's behalf about the outcome. Overall you have been and remain an real inspiration for her.


Love the courage you unceasingly show and will look out for the next chapter.


Onwards and upwards!


Sarah

XXXX

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