infection… hallucinations
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Hi Susanne,
This is excellent news indeed and many thanks for sharing that with us all. Yes it was quite a trek for you both both there and back but I am really glad that you were able to go and hoping that the beast will indeed be killed off! Fingers are crossed for the radiotherapy and please let us know how that goes.
My best wishes to you both,
Gavin
PS – hope the weather gets better as well!
Dear Suzanne, I am so very happy to read that you weathered all the “storms” even the flight home. It also appears that you are on the right path now and that can only keep getting better we hope. Wouldn’t it be lovely if you had a mini luxury ship to take you back and forth! Wishing you great success and am hoping the next visit goes well and keep the storms away!
thanks to everybody the weather was (sort of) cooperating.
We were on the morning ferry (the afternoon one was cancelled due to adverse weather conditions) and had some rollercoaster flights but managed to get to Manchester without major delays.The good news: there is a very good chance to kill the beast (the bone met on the rib) with the radiotherapy which is due to start next Monday!
Apart from this there is just one suspicious node which will be monitored in future with quarterly CT scans. It showed up on the PET scan (not very bright though) but might have been due to an infection, so according to the Professor this is not too much of a worry just now.The bad news: all that travelling has taken it’s toll… so the pain which was under good control flared up after coming home so we had to increase the medication for the moment. Especially the journey home was a long one… got up at 4 a.m. and arrived home at 6 p.m. so even for a healthy person that’s some journey.
It is as if this “thing” knew that we are going to fight it next week and it’s showing it’s teeth for the last time.
Oh Susanne this is great news. Keep on it and I so hope our weather stays calm for you so you can get to Aberdeen.
Susanne,
That’s good news about the Prof.
Also great that he will do the radiotherapy soon. I’ll keep my fingers crossed for good weather and ferries running and ultimately, comfort for your beloved.
WillowSusanne,
Sounds like wonderful news. Hope that you get your wish for Christmas. And I will keep my fingers crossed that the ferries are all running and you are blessed with wonderful weather when needed.KrisV
Hi Susanne,
Great news here and I am very happy for you both! Fingers are crossed for this and I so hope that it goes well. Please let us know how things go. Hope that the snow that is forecast for the next few days passes you by and that the ferry is running as planned. Leaving a day early sounds like an ideal plan to me.
My best wishes to you both,
Gavin
Dear Susanne, YEAH! YIPPEE! You did it! I don’t believe anyone should fight so hard for the right to live! I am wondering if they have tried other pain Meds? A patient should not have to live with that kind of constant pain. Outside of the pain I am so very happy for you and sure hope the weather holds out for you. Much good luck on the meeting!
Good news today: the Prof is his consultant now!! So we are off to see him this week and radiotherapy will start a week after.
So perhaps the only wish I have for christmas (him to be painfree or at least the closest we can get to this) might come true…Now we only hope that our ferries will run (last week on 3 occasions there was no ferry due to adverse weather) so that we can catch the plane down south. Will leave a day earlier just to make sure…
Hi Susanne,
Vent away. I am glad that you got things moving and plan in place with Professor Vale. I’d like to think that he will drive this now and as Gavin said the other consultants will take their lead from him.
but no day without problems…
this might be a very Scottish question: can it be that one has to fight for radiotherapy because doctors seem to think that as long as the painkillers are able to give pain relief radiotherapy is not necessary?
Does anybody consider the side effects and toxicity of long term use of painkillers? It will have a reason that usually one is NOT supposed to take them for longer periods, not even paracetamol or non-steroids. Does all that not count in cancer patients? I know that Scotland has a higher demand for radiotherapy than can at the moment be met due to the lack of linacs.
But this is a problem the NHS has to solve without the patients being the sufferers.
Even palliative radiotherapy (which will not “cure” the cancer) will have an effect on the tumor itself to stop or slow down growth. I don’t see it “only” as a method for pain relief.I just have to vent here and now today… I am so fed up with the NHS at the moment, things have been misdiagnosed, there have been delays, informations have been withheld and it seems in case of a recurrence or metastatic disease one is alone and the efforts of treating the disease are less.
Sorry to say but would the efforts be more if one was still in working age? British surgeons have been complaining about age discrimination in treatment for older cancer patients… I am beginning to believe they have a point there…Hi Susanne,
Really glad to read your post and hear that he is back home now and doing much better now that the infection has gone. And also to hear that Macmillan have arranged a different pain plan and that that is working so well. That will certainly help with problems of hallucinations too.
Brilliant news as well to hear that Prof Valle is now involved and I think that the local consultants will certainly now take their lead from him and will administer the treatment plan that Prof Valle recommends here. No wonder that they lost their confidence since Prof Valle got involved with things! That sounds like the best plan to me and that has happened before on here whereby a local team administer the treatment or chemo that is recommended by a more experienced oncologist, doctor etc. I hope that it works well and please keep us updated on how everything goes.
My best wises to you both,
Gavin
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