Jock67B's Cancer Ward (Cancer Support and Discussion Thread)

[NorthBrit]

Hi AngusDe and Purley Oaks.   Life can be a so-and-so as it knocks us sideways.  It's how you take it from now that counts.  The only way is forward

 

What I found when members of my family had such challenges was to imagine a bright, blue light around the affected area.

It' sounds daft I know, but it costs nothing and doesn't hurt.  All I know is, is my family are still here.

[Purley Oaks]

Received my scan results yesterday.

 

There are two very small areas that the radiologist identified as possible peritoneal disease. My oncologist said that he hadn't even spotted them, but the radiologist is more au fait with reading the scans. He thinks that it is likely the areas are peritoneal disease.

 

He has offered chemotherapy which comes with side effects; last time out I got peripheral neuropathy (numbness) in my fingers and toes; at one stage I was unable to hold a pen properly to write, and I banned myself from driving for two years because my left foot kept slipping off the clutch - not terribly safe. Hands are now fine, and feet almost back to normal after 36 months. The other chemo leads to hair loss and the runs. He told us to go away and think about what we want to do, because the side effects may be worse than the disease.

 

I will be contacting Care Oncology Clinic in London to see if their treatment plan offers anything. They are repurposing drugs used for other things which have been found to be useful combating cancer when used in combination. The NHS can't do this because NICE hasn't licensed the drugs for cancer treatment. My oncologist is relaxed about me attending COC and mentioned that several of his patients have done the same thing. He has said that even if I do this he will be happy to continue being my oncologist and offering scheduled scans.

 

The COC drugs regime is intended to stop feeding pathways for cancer cells, so in theory, they should shrivel and die.

 

We'll see what they say. The initial concultation with COC is now £490 - not cheap, but a lot less expensive than some other private clinics. My oncologist was happy to write the necessary letter for them.

 

He was, however, concerned about some of his patients who have gone to Mexico and spent a lot of cash for some untried cancer treatments. The COC treatments have the backing of some academic papers. Back to see my oncologist at the end of January.

 

Need to go shopping!

 

Mal

[spikey]

Good luck with it, Mal.

 

Well, yesterday we finally met up again with the surgeon who did my lady wife's mastectomy and reconstruction 7 years ago, which left her with various issues regarding pain in the armpit and muscle weakness on her left side.  To cut a long story short, the only one of those issues now remaining is what is called "cording", which is when a vein or a lymph channel in the arm becomes fibrous and inelastic, thereby causing sharp pain when the arm is raised, because it simply will not stretch.

 

We identified the problem as cording five years ago, but were repeatedly told that that could not be the case.  And that left us with no way open to get referred back to the breast unit for specialist physiotherapy, because that referral has to come from the surgeon.  However, our perseverance has finally paid off.  Yesterday, the man himself did a quick examination, said "You have cording.  I'll send you for specialist physio.  You'll get an appointment in the post" and that was that.

 

Meanwhile, the lady wife is trying to decide how she feels about what is apparently the guaranteed 100% effective DIY cure.  You raise your arms overhead to the point where the tightness of the cord stops further elevation, and grab hold of the top of a door frame, standing on something if necessary.  You then count to three, and push your shoulders as far forward into/through the doorway as possible.  Given a degree of luck, it hurts like hell when the cord snaps, but the pain doesn't last very long ...     

[katwigan]

Hi all, Rab I am now 6 months post chemo and still fuzzy in the head, more so if tired. Had 3 months worth of Cetuximab as a 'maintenance program' that more or less held the status quo with the splattering of secondary tumours in my lungs. The treatment in that case had 2 or 3 significantly different side effects ;

Very dry, itchy skin usually resulting in a cloud of dust when I took my singlet off. 

Lots of paper cut type splits particularly alongside fingernails, making ordinary things damn near impossible, try doing your fly up without the involvement of your thumb!

The third and most interesting to the nurses was my eye lashes grew like weeds and had to be trimmed every few weeks!

Research is now going on to identify the part of Cetuximab isolating it and marketing it to half the world's population   

Recently the oncologist has put me on Nivolumab one of the Immunotherapy treatment regimes, so far after 4 doses no significant side effects and the last lot of side effects appears to be abating / healing / stopped growing.

Interestingly I have heard of people losing their hair during chemo and it growing back curly, I never lost any but after a recent hair cut all the back of my head is now covered in tight curly hair, much to several relatives amusement, !

Feeling much better in myself and getting back into more serious modelling without running out of steam (sorry) or forgetting what I was doing etc.

Will update after next scan in early Jan, in the meantime I wish you all 

a Safe and Merry Christmas and hopefully a Happy and certainly Healthier New Year .

Keep kicking the doors down 

All the best 

Kevan

[BSW01]

I had some rather good news this morning which I thought I’d share with you all. When I came in from the workshop for dinner, we’d had some post, so I decided to open it before we ate. The best bit was the letter from The Christie Hospital informing me that I am to be officially discharged. I will have one last appointment with my oncologist and then that’s it. I will still have to have 12 monthly PSA tests done but these can now be done at my GP’s surgery and so long as the readings stay under 10ug/L that’s it, but if it goes above 10ug/L then I’ll be referred back to The Christie. Whooo, hooo!

[jamie92208]

I had some rather good news this morning which I thought I’d share with you all. When I came in from the workshop for dinner, we’d had some post, so I decided to open it before we ate. The best bit was the letter from The Christie Hospital informing me that I am to be officially discharged. I will have one last appointment with my oncologist and then that’s it. I will still have to have 12 monthly PSA tests done but these can now be done at my GP’s surgery and so long as the readings stay under 10ug/L that’s it, but if it goes above 10ug/L then I’ll be referred back to The Christie. Whooo, hooo!

That's really good news Brian, long may it stay that way.

 

Jamie

[AngusDe]

I'm going into hospital on Monday for my left kidney removal.  This will actually be my first ever night in hospital, first general anaesthetic, etc, 3 weeks after my 60th birthday. Generally feeling ok about it all. 

 

The Christmas break felt like it went on forever but once every one was back at work there was a flurry of letters and phone calls setting up the op etc.

 

My first appointment with oncology consultant isn't till next month, after the op, although she's due to start maternity leave soon. My specialist nurse also moves on next week, and her post hasn't been advertised yet.

 

I still don't feel like there's anything wrong with me, yet the cancer treatment treadmill is taking over my life again. 

 

Strange times,

Angus

[Andrew P]

I'm going into hospital on Monday for my left kidney removal.  This will actually be my first ever night in hospital, first general anaesthetic, etc, 3 weeks after my 60th birthday. Generally feeling ok about it all. 

 

The Christmas break felt like it went on forever but once every one was back at work there was a flurry of letters and phone calls setting up the op etc.

 

My first appointment with oncology consultant isn't till next month, after the op, although she's due to start maternity leave soon. My specialist nurse also moves on next week, and her post hasn't been advertised yet.

 

I still don't feel like there's anything wrong with me, yet the cancer treatment treadmill is taking over my life again. 

 

Strange times,

Angus

Good luck, please keep us updated Angus.

[Gwiwer]

Best wishes.  Please keep us up to date.  

 

I know one or two of us choose to share our log-in details with a trusted family member or friend.  While sharing log-in details for web sites is generally not a good idea there are times and places where it may be beneficial.  Each and every one of us can make that decision personally.  But in the event of need or simply for information we could at least receive a message here if the member themselves was unable to post it.

[AngusDe]

Hi all, well I had my laparoscopic nephrectomy yesterday morning.

 

It all seems to have gone well, they made me get up and sit in chair for my porridge this morning. Maybe it's the drugs talking but it doesn't feel as uncomfortable as I feared.

[Oldddudders]

Hi all, well I had my laparoscopic nephrectomy yesterday morning.

It all seems to have gone well, they made me get up and sit in chair for my porridge this morning. Maybe it's the drugs talking but it doesn't feel as uncomfortable as I feared.

A former flatmate, now well into his 60s, lost a kidney last year. He very nearly felt well enough to travel from Harrogate to Sherborne for a reunion a week later. You may well be surprised at how quickly you buck up, too. I do hope so.

[bike2steam]

Well the drugs for my Myeloma must be working as my specialist at Dorchester is so pleased with the progress he's arranged a meeting for me with the person responsible for a bone-marrow transplant at Bournemouth hospital - onwards and upwards.

[geoffers]

Good luck on that Bike2steam. Sounds good. An update from me - BCG immunology not as successful as hoped. Consultant gave me a cloice - best chance of a cure is removal of bladder and other bits. So tomorrow off for a pre-op assessement with the op in the next couple of weeks probably. Then I shall be a "bagman" for the rest of the mortal coil. On the bright side it will mean no loo visits during the night. C;est la vie!

[Purley Oaks]

Promised I'd post.

 

Since November I'd been having stomach problems, sickness once a week, which gradually became daily by last week. Oncologist admitted me to the Western General in Edinburgh which is where I've been for the last week. I expected them to be able to treat it and I'd be OK in no time.

 

The problem is the peritoneal cancer which has blocked my small bowel just below my stomach along with a few minor blockages further below. Saw my oncologist yesterday along with some surgeons. They're unable to operate (but surely there must be something else? I asked) and my body is unable to process food, and you need food to live.

 

So I'm on IV fluids and that's it. I've been given a few weeks, possibly not that. As you can tell the family is devastated by the news because I look well and feel great. It's just this b*gger of a thing called cancer. I'm not looking forward to the last part - organ failure - and think we treat our pets more humanely than we do ourselves. I could do with a gentle send-off into the long good night, It would save the NHS money and would save the family a lot of needless unhappiness, and would save me a lot of worry. The palliative team is coming today to see if they can get me home.

 

I have quite a few railway items that my family won't want and would love it if someone would offer to help dispose of them, or give advice on the disposing.

 

Will try and post again

 

Mal

[chrisf]

Mal, may you be given the courage to help you deal with this

 

Chris

[rab]

Promised I'd post.

 

Since November I'd been having stomach problems, sickness once a week, which gradually became daily by last week. Oncologist admitted me to the Western General in Edinburgh which is where I've been for the last week. I expected them to be able to treat it and I'd be OK in no time.

 

The problem is the peritoneal cancer which has blocked my small bowel just below my stomach along with a few minor blockages further below. Saw my oncologist yesterday along with some surgeons. They're unable to operate (but surely there must be something else? I asked) and my body is unable to process food, and you need food to live.

 

So I'm on IV fluids and that's it. I've been given a few weeks, possibly not that. As you can tell the family is devastated by the news because I look well and feel great. It's just this b*gger of a thing called cancer. I'm not looking forward to the last part - organ failure - and think we treat our pets more humanely than we do ourselves. I could do with a gentle send-off into the long good night, It would save the NHS money and would save the family a lot of needless unhappiness, and would save me a lot of worry. The palliative team is coming today to see if they can get me home.

 

I have quite a few railway items that my family won't want and would love it if someone would offer to help dispose of them, or give advice on the disposing.

 

Will try and post again

 

Mal

So sorry to hear your news Mal.

Will be thinking of you

and praying for you.

[Andrew P]

Thinking of all you guys above, I wish you all peace, and some recovery soon.

[Barry O]

Mal 

 

very sorry to hear the news. Life is a real badger at times but the big C is and even bigger one. 

 

Baz

[PhilJ W]

Very sorry to hear your news Mal, thoughts are with you.

[shortliner]

Mal, really sorry to hear this news - may your future be as painless and gently smooth as possible - the Big C is a bu99er!

[BoD]

Thoughts are with you and your family, Mal.

[newbryford]

Mal,

Can't say much more than those above, apart from adding more thoughts for you and your family..

 

Mick

[Oldddudders]

Mal - so sorry to hear this. You are surely one of the Good Guys hereabouts, adding value without ever pushing an agenda. Sherry and I will keep everything crossed. X

[Mike Bellamy]

Mal - I have just clicked 'Agree' to the nine postings above as they have all said what's going through my mind at the moment and so there's nothing more I can add. . . . . . . 

 

Best wishes to you and your family

 

Mike

[roundhouse]

Mal

 

Sorry to hear the news much as all who have posted above and wish you and your close friends and family all the best, hoping you can be made as comfortable as is possible.

 

Ian