A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Mon May 19, 2014 1:35 pm

Wonderful news Mark, as Steve said, especially about your granddaughter. How lovely. Hope her and mum are both recovering well now! And great to hear that you are back to such good strength and being able to participate in sport etc...A huge well done.

Yes, you are certainly an inspiration on here, along with your "mate" Steve!

Keep up the good work both of you.

Jeni.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My Journey So Far

Postby J_T » Mon May 19, 2014 9:53 pm

Many congratulations on the new grand-daughter Mark, how lovely.

Great to hear also that you still doing well. Keep it up!

Julia x

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: My Journey So Far

Postby Janiebobs » Tue May 20, 2014 8:40 pm

Great news and congratulations on the birth of your grandaughter Mark.
Jane

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: My Journey So Far

Postby Bowie » Wed May 21, 2014 9:26 am

Mark, congratulations on your beautiful granddaughter and glad you are doing so well. It's really helpful to read about your and others progress as it help us. We were convinced, particularly as the GP, also a friend had told James he won't be around for long to enjoy what life he had left, a bit difficult when told that by an 'expert' and friend!

Anyway you and Steve and others have really helped us not to make final arrangements just yet, but it is still so hard.




Fiona X

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Journey So Far

Postby MSH » Tue Jul 08, 2014 12:27 pm

Today marks six months since I had the Nanoknife, and it is almost nine months since I finished my chemotherapy. I was able to persuade my oncologist to give me an appointment for six months arguing that if anything were to develop I could always get an earlier one. My quality of life is excellent and I don't feel restricted at all. The only fly in the ointment is a slight left sided chest discomfort which I've had for a few weeks. This seems muscular and doesn't interfere with my indoor rowing, but if it doesn't settle soon I'll see my GP.

I continue to take Creon before meals but don't seem to miss them if I forget them when eating out for instance. I remember being told I wouldn't be able to stop them because the stent blocked pancreatic secretion, but then remembered being shown the stent as a flexible mesh. Once the jaundice was away I didn't have too much trouble from my tummy, perhaps a bit more wind and a greater sense of urgency. I am happy to report that even these have now settled and I would say I'm back to what I consider normal. It really is hard to believe I have chronic pancreatitis.

The neuropathy continues to improve, and now only affects the extreme ends of my fingers and toes. I no longer have to look in the mirror to fasten shirt buttons I can't see, and was rather proud recently at opening a difficult to reach fire alarm purely guided by touch.


My best wishes to all affected by this dreadful disease.


Mark

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My Journey So Far

Postby Slewis7313 » Tue Jul 08, 2014 2:00 pm

Great to hear you continue to do so well Mark. Long may it continue!

Steve

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: My Journey So Far

Postby PCUK Nurse Jeni » Tue Jul 08, 2014 5:21 pm

Fantastic news Mark!

Well done! you are doing amazingly!

Jeni.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My Journey So Far

Postby nikkis » Tue Jul 08, 2014 5:37 pm

Oh We do love hearing of people doing so well, keep up the good work Mark,
Nikki

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Journey So Far

Postby sandraW » Tue Jul 08, 2014 8:37 pm

Great news Mark, long may it continue, and thanks for letting us know, it really helps to hear people of doing well take care sandrax

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Journey So Far

Postby MSH » Thu Jul 17, 2014 12:54 am

How quickly things change at least at the psychological level. That fly in the ointment has just got somewhat bigger. As soon as I had made an appointment with my GP, I began to have a pain in my back on a morning, remember the secondary in T5. My GP took bloods and arranged a CXR, and phoned later that evening to say that the CA19-9 had risen to 1609. I have e-mailed my oncologist who has arranged a CT and MRI scan and I am reconciled to needing some further treatment.

It's really when I wake up on a morning that I evaluate things. For the past few months I have felt very well with no symptoms at all. Now I have a catch in my left chest when I take a deep breathe and this morning I had a discomfort around my left collar bone rather than my back. Bending down to the left was also a little uncomfortable, at least first thing. I am now taking regular Paracetamol after a gap of over a year.

Writing this I am enjoying a glass of wine, and I had a tough session in the gym tonight so in one sense I am able to function pretty well. I had been saying that the horizon had gradually lifted on the day to day existence I had last year so I was starting to look further ahead. All of a sudden that horizon seems a whole lot cloudier.

We shall see.

Mark

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My Journey So Far

Postby Slewis7313 » Thu Jul 17, 2014 6:07 am

Hi again Mark and sorry to hear your Gremlin seems to be coming active again. This damned disease seems to allow some of us to believe we are holding it at bay for now, but then reminds us that it is calling the shots and that we can only react to it's repeated onslaught. It is however great to hear that you are still very active and enjoying the occasional glass of wine. I am sure you will deal with any treatment in your usual positive manner and as a result move you into another period of relative 'normality'.

Good luck with the scans and whatever follows.


Steve

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: My Journey So Far

Postby Cathy » Thu Jul 17, 2014 12:55 pm

Hi Mark

Ditto from me.

Jonathan used to complain of a pain in his left shoulder - I'm not sure if it is the same thing but it is good that you are on the case so quickly.

Cathy xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My Journey So Far

Postby J_T » Thu Jul 17, 2014 6:31 pm

I'm wishing you all the luck in the world Mark, for continued wellness. I know you will do your utmost to chase those clouds away.

Best wishes
Julia x

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: My Journey So Far

Postby Bee » Thu Jul 17, 2014 10:37 pm

Hi Mark,

I rarely post now but keep an eye on a few folks, including you.
I am sorry there are clouds about, but it sounds like you are on the case and ready for the next phase of battle. I send all good wishes and enjoy that wine !

Bee xx

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: My Journey So Far

Postby MSH » Thu Jul 24, 2014 8:59 pm

It was with some trepidation that I met with my oncologist today. I continue to have pain especially on a morning from my left chest. It's puzzling because it changes sometimes being more in my back, the next day more in the ribs. The slight catch on a deep breathe has actually improved. Anyway we met to discuss my recent CT scan. I had started to think there may be more secondaries to cause the pain. In the event there doesn't seem to be much change on the scan and little to account for the pain. One big difference is that the stent has disappeared. This is quite heartening as my presentation was with obstructive jaundice and the fact that I don't need the stent now suggests the primary tumour has responded well to treatment. I have said before that missing the odd Creon doesn't seem to make a difference, I'm going to stop them completely to see what happens.

The next step is to have an MRI and there were mutterings about a possible PET. I am reconciled to having further chemo, but my oncologist is more reluctant saying she'd like to see some evidence of disease activity, especially as I am so well in myself. It's keeping me that way that might be the tricky bit.