Jump to content

So far so good!


Recommended Posts

  • Replies 767
  • Created
  • Last Reply

Top Posters In This Topic

  • Slewis7313

    184

  • J_T

    70

  • jay

    43

  • EmmaR

    42

Top Posters In This Topic

Steve,


You recently commented on one of my posts, so thought I'd have a look at your story. I'm fighting on my Mum's behalf, so understanding more about the journey we're starting on is good. What stands out is your incredible determination. I hope I can I can support my Mum to stay the course, whatever that may be, half as well as you. Good luck with everything and sending fighting vibes.


Sarah

Link to post
Share on other sites
  • 3 weeks later...

Hi Steve, I'm back and the 2 weeks since my last post seems more like 2 years. I now have a far deeper understanding and respect for where you are. Appart from size of tumour (18mm on diagnosis)and involvement of vessels (veins plus 1 hepatic artery branch), there is not much difference in your and my Mum's diagnosis. When 15mm right or left and 15mm bigger or smaller can make this much difference it makes you wonder at the world doesn't it.


I'm not sure how you are doing now. Whether Nanoknife was persued, how you're generally fairing. Hope the answer is mostly good.


Sarah

XX

Link to post
Share on other sites

Hi Sarah, just got back from a night away with friends and seen your update. I have updated my real life story, but basically am doing really well at the moment, with no symptoms and no treatment. However, the tumour as you may have seen is still there and continues to be a challenge for the surgeons. As you say, the learning curve is unbelievable and we all become experts very quickly. I am putting together scan results and reports to send off to cyberknife and nanoknife experts as well as Heidelberg University Hospital (the latter as a second opinion, though I will be surprised if they agree to consider surgery, but who knows eh?). My tumour has obviously been given a serious push back with chemo and radiotherapy, so I feel I now have a little time to look at my options without rushing into anything.


Take c and good luck!


Steve

Link to post
Share on other sites
  • 4 weeks later...

In my last post, I used the statement 'but who knows' with regards to Heidelberg.......... Well knock me down with a feather, I received an email yesterday morning confirming I could have CyberKnife treatment at the London Clinic, followed shortly by an email from Heidelberg saying they were happy to go ahead with the operation after the shrinkage brought about by radiotherapy! Last night was a bit of a haze, but the only way is Heidelberg so I am working on getting that sorted as soon as possible. My Company's Private Health Insurance does not normally cover procedures outside the UK, bit as it is not available in the UK, they are reviewing policy. On top of all that, my Company are sending me to Cyprus on 12th October for a few days business, so I am taking Margaret along and extending a few days. As it is a business trip, the Company travel Insurance covers all illnesses, including pre-existing cancers!


I know many of you are going through very difficult times at the moment when I seem to be 'on the up' (for now anyway), but you are never far from my thoughts and I certainly hope some of my current luck rubs off!


Take care all


Steve

X

Link to post
Share on other sites

Fanbloodytabulous news Steve!!! So, so pleased for you. With the cyberknife as backup, hol in the offing and (fingers crossed) an insurer working to make Heidlberg happen feels like most of the luck you're owed landed at once. Well I say luck, but you've grafted for this haven't you.


One thing I saw last night I'm wondering if you know more about. Have seen a few US posts where nanoknife was on standby to be done during the whipple IF when surgery attempted any unexpected surprises show up. A Dr Martin was mentioned (sorry can't find posts now)


Wishing you a smooth as possible path to taking advantage of all this and have a marvellous break.


Sarah (sitting with a good big grin now)

Edited by InfoForMum
Link to post
Share on other sites

Thanks Sarah, that is a good call regarding Nanoknife so I'll mention it to them. They have said it all hinges on what they find when they go in, so a backup might be useful just in case (we have to be practical). All a bit scarey, but for all the right reasons,


Steve

X

Link to post
Share on other sites

This is wonderful news Steve, I am so pleased for you and your family. All good news seems like a victory against this awful disease. Have a lovely trip!

Hilary

Link to post
Share on other sites

And one more..... Professor Secretary has just emailed me to say I am also suitable for NanoKnife. I certainly have more option than 48 hours ago!


Steve

X

Link to post
Share on other sites

Hello Steve

So glad to hear your brilliant news. I to have emailed Heidelberg as my husband Terry has a tumour in the tail with spreads to the liver. All his tumours have shrank after 3 x 3 lots of gemcitabine and capecitabine otherthan 2 on the liver which have grown a little in size.

Heidelberg have said that it we forward over the latest CT scan they will take a look and let us know costs etc as they say he would need a three week stay. We to have private health care but not sure whether it will cover treatment in another country so any info you have on this would be appreciated.

good luck Lyn

Link to post
Share on other sites

Steve I am so pleased for you and your family. I have also read research suggesting that nanoknife is well placed to be used during the whipples so do ask. Cant think where I saw it though!

Good luck

Karen xx

Link to post
Share on other sites

Sorry Steve I think I have got the hospitals a little mixed up. Heidelberg is where they do the Whipples etc isn't it. The one we have looked at is hospitaldrfachlinkherzog where they do a therapy involving extreme cold or heat combines with a low dosage of chemo. They are the hospital where you need to stay for three weeks and are not covered by private insurance.

We have looked at a lot of alternative therapy as we have been told that Terry's tumour is inoperable as it has spread to both lobes of the liver. Must of had a bad day and got totally confused. Good luck Lyn

Link to post
Share on other sites

You are correct Lyn, the plan is for me to have a whipples procedure at Heidelberg. I had read about the procedure you mention somewhere in Spain. I think it was in a Hospital at one of the major resorts, possibly Malaga.


Good luck with the treatment


Steve

X

Link to post
Share on other sites
  • 4 weeks later...

Well, it's now 2 days until I fly to Germany with Margaret and our girls Holly and Paige, with the operation in Heidelberg on Wednesday. Time to reflect and reading my first post back in March, I stated I was in a better place than most and for whatever reason that seems to be continuing. I feel really lucky at the moment and remarkably (unexpectedly) calm, probably because of having met some of the staff in Heidelberg and a really useful, long chat with Mick who did this 8 months ago. My good luck is all the more unbeleiveable when I look back on the very sad weeks and months on this forum. It has been a long time since I let this thing bring me to tears, but recent events here have managed to do it for me! Again and again, I have thought in particular about the 'carers' on this site who have shown us all what love, respect and commitment is all about. The word 'carer' does not really come any where near to describing what you have all been through, continue to go through and you still come back day after day to help the rest of us. For me the word 'carer' actually means the little (predominantly) ladies with the very big hearts. I take my hat off to every last one of you.


But enough of that, I will now look out the Heidelberg thread I started some time back and update it as often as I can whilst in Germany. A freind of ours recently underwent surgery for breast cancer and got her hands on an iPad whilst still under the influence of the anesthetic and put a really interesting update on Facebook which was simply a load of gobbledygook. Perhaps I'll try that as well!


I'll still be thinking about you all whilst in Germany and hope to have some good news by the end of next week.


Take care all


Steve

X

Link to post
Share on other sites

Dear Steve


Well said, "carers" does not cover the half of it! they are all amazing (mine included)


It is true that we have had some very sad news on the forums recently and like you it has brought me to tears time after time. The bravery of our erstwhile collegues is incredible, the strength of spirit is breathtaking.


Steve we are ready for some good news and I truly hope it comes from Germany ! All the very best and fingers crossed for you!


David

Link to post
Share on other sites

Steve,

I wish you all the luck in the world, and will be thinking of you on Wednesday in particular .

Stay positive and Fingers crossed the love in your family and the expertise of the medics will see a fantastic outcome,


Keep us posted and virtual hugs to all of you


Bee xx

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue. By using our forums you agree to our Terms of Use and Privacy Policy.