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

[spikey]

Further to my post above, one thing we learned on our journey is that there seem to be plenty of surgeons out there who have no interest at all in the patient once he or she is alive after the surgery and free from whatever affliction precipitated the surgery.  In our case, my wife made a rapid recovery in the sense that she felt OK and could dress herself, go for a short walk and so on, but it became ever more apparent as time went on that she was not recovering anything like the functionality in her upper body which we had been assured would return.  For the next five years, the surgeon and the associated breast care team professed to be at a loss to explain my wife's symptoms.

 

When we finally got our GP to refer her to a London teaching hospital for a second opinion, we learned that in their consultant's opinion, the problems my wife was having were par for the course for the type of operation she'd had, which was why they'd stopped doing it there.

 

ETA -  I stress that I'm not tarring all surgeons with the same brush. We've since met three who each have a real bee in their bonnet about surgeons who basically don't want to know if their patients experience debilitating after-effects in the long term.

Edited November 30, 2017 by spikey

[Andrew P]

Further to my post above, one thing we learned on our journey is that there seem to be plenty of surgeons out there who have no interest at all in the patient once he or she is alive after the surgery and free from whatever affliction precipitated the surgery.  In our case, my wife made a rapid recovery in the sense that she felt OK and could dress herself, go for a short walk and so on, but it became ever more apparent as time went on that she was not recovering anything like the functionality in her upper body which we had been assured would return.  For the next five years, the surgeon and the associated breast care team professed to be at a loss to explain my wife's symptoms.

 

When we finally got our GP to refer her to a London teaching hospital for a second opinion, we learned that in their consultant's opinion, the problems my wife was having were par for the course for the type of operation she'd had, which was why they'd stopped doing it there.

Information and stories like this are what this thread is all about, Jock would have been proud to be associated with it.

 

Thanks.

[PeterBB]

Mal,

 

I hope that your Basingstoke trip went well and that something positive really comes out of it.  

 

Its 'funny not' how the NHS becomes so fragmented and the expertise becomes dispersed.  The movement of so-called 'Junior Doctors'  who have had experience as members of expert teams should enable the skills to become generally wider spread but your experience suggests that it doesn't do so.  The numbers make a difference e.g the closing of some heart surgery centres because of insufficient operations etc. may have some merit but with fewer 'teams' and greater distances for patients to travel there will be fewer Junior Doctors who can learn the skills and fewer patients who will be able to afford to travel (and stay overnight?) to learn of their treatment.  Hopefully they will not have the 'come back in 3/12 time or of course have 'weekly visits'.

 

Cheers, Peter

[Gwiwer]

I am truly sorry to be late to this particular party and quite genuinely because life (or its absence) has got in the way. The recent posts triggered just a few of almost 500 emails over the past few days.

 

Mal - I do of course wish you and Gabe all the best on thus journey. Justvas you offered support and friendship when it was my turn so that is offered now in return. I know you will keep us posted. As another who has forthcoming trips to Basingstoke (for entirely different reasons - it’s where SWR conduct their corporate training) I shall have you particularly in mind and with everything crossed for a successful outcome.

 

I completely agree with the comments suggesting some home research is done. My experience was of the Australian medical system which is sometmes held up as an example of how to do things. Public (fee-free) consultation is limited under Medicare and many people go private and claim the limited rebate available. My initial GP consultation was with a “bulk-billing” (no patient fee) doctor who had me in the room less than two minutes. I came out with a referral to a urologist and advice to “call him today”. The urologist saw me twice and cost a fortune. I was referred to the local public (free) hospital having received a confirmed diagnosis.

 

At this point I did some research to learn more about the condition, treatments used (not all of which would be available everywhere) and what it might mean for us in the bigger picture. At no point did I attempt to use “Dr. Google” to diagnose the condition.

 

The first hospital consultation was with their surgical team. That cost me a consultation fee half of which was rebated through Medicare. We discussed the staging and available treatments which so far as they were concerned was surgery full stop. Armed with some background reading - which I was at this point very grateful for having undertaken - I asked what alternatives existed starting with Do Nothing. That - whilst beng an option - was clearly spelled out as a painful short-cut to departing this life. I was the one who asked about radiation. It was not offered.

 

A second meeting was set up with the surgical team and a radiation oncologist who as part of a wider private practice consulted at the nearby private (full fees payable) hospital. Again I was out of pocket for some of the consultation fee. The decision was left to me (and of course my wife who had been present at the second meeting) and we opted to go with radiation. The cost, financially, would be high but the results and long-term survival / recurrence rates were slightly better than for surgery alone. It also meant I could continue to function as a man which was not likely to be the case with surgery.

 

A small surgery was required to remove as much cancer as possible but it was never going to clear the lot. Then the radiation took over costing me a very large sum of money which magnified as it became credit card debt. As a part of the regular follow-up consultations I mentioned to my oncologist that the surgical team only seemed interested in “their” option. He replied that this was normal and that “Surgeons only understand surgery”. That was enlightening. He went on to add that his team looked for the best outcome, which was not always radiation, rather than being a “one-trick pony”.

 

As history now tells us I spent a five-figure sum overall and had to ask about treatments not offered by the surgeons. But several years on I am at least here to share that much and support others. And with almost normal functionality albeit with some long-term effects now apparent. Hopefully nothing more than just inconvenient but I shall learn more in the new year when I am settled in the new job and get to have things looked at.

 

And I am still paying off the tail-end of that debt but what price a near-normal life against the alternatives?

[spikey]

“Surgeons only understand surgery”

 

Exactly. A physio said the very same thing to my wife and me only last Wednesday! And in much the same way, oncologists only understand oncology.  Based on our experience, anyone finding themselves supporting somebody who's just been diagnosed with cancer would do well to bear that in mind, once they get over the initial mental upheaval.

 

Incidentally, in the last six months, my wife and I have met two specialist cancer physiotherapists, both of whom are frustrated to hell by this "compartmentalisation" or lack of cross-pollination between the various disciplines involved, and the implications this has for cancer patients' recovery.

Edited December 2, 2017 by spikey

[jamie92208]

Unfortunately this silo mentality as I call it is very common in Medecine.  My wife once lost the use of her legs for 4 months.  She was shunted from Neuro surgery to Neurology and then had a Psychiatrist examine her, who told her she was absolutely fine.  As none of them could do anything for her she ended up  under the care of a rheumatologist who had dealt with her before.   After a lot of good care and great physio she made a full recovery but it was an anxious time.  I was appalled at the way she was just shunted between wards as each specialism lost interest in her case when they couldn't sort things out.   I know that there are lots of multi disciplinary team meeting in some places these days and I hope that this more holistic approach becomes common.  Many years ago a friend of mine who was a doctor got detained in a psychiatric ward for a while and in his time there diagnosed two patients who shouldn't have been there, one of who was just deaf and not daft.

 

Jamie

Edited December 2, 2017 by jamie92208

[Jock67B]

Hi all Rm web users, it's jocks 67b granddaughter here.. we have been spending time this last year trying to access this account to able to veiw this very thoughtful blog that was set up in Jack's memory..

Joanna is getting through she still has her struggles and battles she has revived a lovely Christmas card from one of the members. I was wondering if people would be able to contact her via text message so she doesn't lose contact with u again..and can keep dips on who is who through text Joanna number is 07745 995915

Or email emma_louise1989@live.co.uk

 

Many thanks & well wishes

Joanna and family

[jamie92208]

Hi all Rm web users, it's jocks 67b granddaughter here.. we have been spending time this last year trying to access this account to able to veiw this very thoughtful blog that was set up in Jack's memory..

Joanna is getting through she still has her struggles and battles she has revived a lovely Christmas card from one of the members. I was wondering if people would be able to contact her via text message so she doesn't lose contact with u again..and can keep dips on who is who through text Joanna number is 07745 995915

Or email emma_louise1989@live.co.uk

 

Many thanks & well wishes

Joanna and family

 

Thanks very much for posting that Emma I have texted Joanna. 

 

Jamie

[Andrew P]

Hi Emma, Thanks for posting and being able to up-date us all. Please give our love and support to Joanna and ALL your Family, Jock is still talked about on several threads and is still greatly missed.

 

There is also Jock's Obituary here.

http://www.rmweb.co.uk/community/index.php?/topic/111066-jock-67b/

 

Love to all,

Andy Peters.

Edited December 7, 2017 by Andrew P

[NorthBrit]

In 1999 my son was 'knocked sideways'  (never backwards)  with the diagnosis of Pancreatic Cancer.   As treatment progressed, it was always with a positive attitude, (and lots of prayers).

Into the year 2000 the battle  continued  ---   never giving in.

 

He was allowed home,  having to make monthly visits to the hospital ---  then two monthly visits  --  then six monthly visits.

 

He married his childhood sweetheart.

 

With annual checks now life is as normal as can be.

 

The journey hasn't been easy; far from it.  A negative thought is not allowed (and it has tried to enter).

 

Has he won?   Some may say "Yes."      We remain in a positive fighting mood for it never to return.

 

He has two sons' and a daughter keeping us active on the model railway 

[Gwiwer]

First let me welcome all of Jock’s family who may read or post here. You are in my thoughts especially at this time of year.

 

Then welcome to NorthBrit though as ever that welcome will have been brought about through trying and challenging circumstances. I sincerely hope that positive attitude continues as it makes so much difference. Not just to the individual but to family, friends and the health-care teams around them. Please be assured also that a welcome, friendship and support will always be found here whether in good times or otherwise

[Andrew P]

As Rick said, Welcome NorthBrit.

 

As with anyone suffering, or knows of anyone suffering the thoughts of many on here will be with you and your Family.

[Purley Oaks]

Good to read the post from Emma yesterday, and good also, to hear NorthBrit's positive story.

 

Came on to post about two or three things. 

 

First up is a book sold in aid of cancer charity Yes to Life and called The Cancer Revolution: Integrative Medicine The Future of Cancer Care (ISBN 978-1-5262-0032-7).

 

Not a book to read end-to-end at one sitting, it's written by Patricia Peat with contributions from 37 other experts. The integrative part is about looking at our lifestyles and whether we can alter diet, exercise regimes, or whether we need to detoxify our bodies and take coffee enemas or perhaps need emotional support and so on. It looks at standard NHS practice and how we can become pro-active.  Masses of scientific references at the end, together with website details.

 

Page 153 gives 10 great cancer facts, such as: cancer is a two-way process: it can grow but it can also shrink or go into remission.

 

Or: a healthy body has detection and repair mechanisms for cancer cells: the integrative healthcare approach works to repair and boost these natural anti-cancer mechanisms within the body.

 

Or: that your personal response to your cancer can make a huge difference to both your quality of life and survival.

 

I won't post them all here unless you would like me to.

 

 

Jane McLelland Off Label Drugs for Cancer on Facebook is also interesting - a discussion group for those seeking an alternative away forward in conjunction with standard meds. Off label drugs are usually cheap drugs no longer prescribed by the NHS (but they are not over-the-counter drugs so you need to find a doc who'll prescribe what you want and a chemist to dispense it. You also have to pay). These are drugs like Metaformin, previously for diabetes, but found to slow cancer growth in some cancers, and so on.

 

The Care Oncology Clinic in Harley Street is a clinic interested in integrative cancer care and may prescribe off label drugs. I have not attended this clinic so am unable to vouch for it, but have read good things about it on Jane McLelland's page.

 

Jane McLelland, btw, was diagnosed with stage 4 lung cancer 17 years ago and given 3 months to live - so she's doing great!

 

As for me, well, Basingstoke admin forgot to put me on the list for last Tuesday's meeting, but I will be on for next Tuesday, when I should have a date for the op.

 

Meantime, positive wishes to all

 

Mal

Edited December 8, 2017 by Purley Oaks

[big jim]

I’m currently at my mums house visiting her after she discovered her cancer has returned after months in remission, had her first course of chemo today and she’s looking well after it but her next course is the day after Boxing Day where it really kicks in apparently

 

I have a dark sense of humour at times and decided to stare death in the face and covered all her ‘precious things’ in post it’s before she got back from the hospital, when she questioned what I was doing I said I was putting a claim on what I want when she pops her clogs! Some may find that a bit offensive but I can assure you she was really laughing as I’d stickered up everything from her VW camper to the TV right down to a bottle of Heinz ketchup in the larder, what do they call it again, gallows humour!

 

Here’s hoping I’ll be doing the same again next Christmas, as I did last Christmas and she gets over it again, my brothers and sisters also share the same sense of humour, I’ve just been taking to my sister on skype (she lives in LA) and as I’m feeling a bit rough tonight I told her not to bother with talking to Mum as she only has cancer and I’m far worse as I’ve got man flu (the downside being I can’t go near my mum for a hug!)

 

Joking apart though I’m dreading the inevitable when it happens, here’s hoping it’s not for a long long time (although I do have a holiday booked in the camper van!)

Edited December 18, 2017 by big jim

[Gwiwer]

Very best wishes Jim. Positive attitudes and - when appropriate - humour such as you describe do go a long way.

 

Please keep us up to date and be assured of our support here.

[Andrew P]

I’m currently at my mums house visiting her after she discovered her cancer has returned after months in remission, had her first course of chemo today and she’s looking well after it but her next course is the day after Boxing Day where it really kicks in apparently

 

I have a dark sense of humour at times and decided to stare death in the face and covered all her ‘precious things’ in post it’s before she got back from the hospital, when she questioned what I was doing I said I was putting a claim on what I want when she pops her clogs! Some may find that a bit offensive but I can assure you she was really laughing as I’d stickered up everything from her VW camper to the TV right down to a bottle of Heinz ketchup in the larder, what do they call it again, gallows humour!

 

Here’s hoping I’ll be doing the same again next Christmas, as I did last Christmas and she gets over it again, my brothers and sisters also share the same sense of humour, I’ve just been taking to my sister on skype (she lives in LA) and as I’m feeling a bit rough tonight I told her not to bother with talking to Mum as she only has cancer and I’m far worse as I’ve got man flu (the downside being I can’t go near my mum for a hug!)

 

Joking apart though I’m dreading the inevitable when it happens, here’s hoping it’s not for a long long time (although I do have a holiday booked in the camper van!)

Jim, Sounds like you and your Mum have the same sense of Humour as me and my Mum, she would laugh too if I did anything like that. What a wonderful attitude, and LONG MAY IT LAST.

 

Needless to say, our thoughts are with you at this difficult time.

Andy.

[jamie92208]

First of all Jim, I hope that things do work out well for your Mum and think that the sense of humour approach is an excellent one.

 

On a more sombre note people near to us seem to have been touched by the dread disease. My Step Mum in Law seems to have recovered well from her second mastectomy and it looks as if she's in the clear. Consider that she had a heart attack earlier in the year and has had stents fitted it has not ben the best of years but she seems to be doing well.

 

Meanwhile a couple in our church are facing an uncertain future. Harry (86)and his wife Jean (82) lost their only child Julie to skin cancer 13 years ago. They are still supported and cared for by their former son in law, Charlie, who had a bad heart attack a year ago and is only surviving due to stents. There are very few other family members. 4 weeks ago Harry went to St James' in Leeds for investigation of a gall bladder problem. This turned out to be a well developed pancreatic cancer and the prognosis is not good. The church are helping a much as they can. Harry is the driver so friends are taking jean shopping and trying to stop Charlie running himself into the ground. Not a good situation but at least as they say they have the church family around them. 6 of us went over last week and held a short communion service for Harry and Jean in their front room, which apparently was a great comfort.

 

Then tonight another friend who used to attend our church before moving up to the Tyne Valley, messaged us on FB to say that their daughter, in her early 30's, has been diagnosed with stage 4 terminal breast cancer and carry's the Bracca1 gene. Her younger sister has been screened and carries the gene and now faces a double mastectomy and then ovary removal. A terrible prospect. Due to impending Operations we can't go up to see them but plan to go up and see them to offer some support in the New year.

 

Not a lot else to say but I just wanted to share.

 

Regards to all.

 

Jamie

[richard brown]

I am not sure how tonight will be for me as I lost my brother in March to cancer.

 

Richard

[Andrew P]

I am not sure how tonight will be for me as I lost my brother in March to cancer.

 

Richard

Try and think of the Good times, that may help a little.

[PhilJ W]

I am not sure how tonight will be for me as I lost my brother in March to cancer.

 

Richard

Today would have been my mothers 98th birthday. We lost her to cancer more than 30 years ago.

[Andrew P]

Today would have been my mothers 98th birthday. We lost her to cancer more than 30 years ago.

Sorry to hear that Phil, again thoughts are with you all.

[Gwiwer]

To all who have suffered loss this year I extend my heartfelt sympathy. I too shall be seeing in the New Year minus dad who we lost to bowel cancer back in March. Until 2015, when he declared himself too old and unwell to stay up, his tradition was always to bake a batch of puff-pastry mince pies for midnight and served with a glass of something. Often Famous Grouse.

 

A glass of Grouse shall be raised at (or near to if I’m out partying) midnight in memory of those we have lost and in support of those left behind.

 

Best wishes for 2018.

[Purley Oaks]

Thought I'd mention that I have a date for Basingstoke - the HIPEC op is scheduled for Tuesday 6 Feb and I have to check-in at Sunday 4 Feb at lunchtime. 

 

I'll be there for three weeks and hope to let you know how it goes at some point

 

Mal

[laurenceb]

Best of luck Mal

[BSW01]

Mal. Hope all goes well for you on the 6th.