News for 2012

Oops, been offline for a while....Since diagnosis Jan has now had four years of active live, and this year we have had the joy a grand daughter beside our three grandsons. All visited 10 days ago when we visited local zoo, what a joy. Thank you God

In the last year Jan has also had a further 2 checks, this time all clear.

Last night there was a mainstream UK TV program done on BBC1 looking at Leicester University work on Tumeric = Curcumin = indian curry and its effect on cancer. They suggested indian diet in UK residents cut cancer rate to a third, particularly for bowel cancer. Far better than the 20% improvements from typical chemo.

They were running trials of patients taking 4 curcumin tablets a day, so it looks like curcumin could become more mainstream. Great 

Progress to date

Oops, been offline for a while....a lot has happened. mostly good. Since diagnosis Jan has had three years of active live, and in those years we have had the joy of three grandsons. so fast as 2 were twins. All visited last weeekend, what a joy, yet also what utter hard work. Had cancer taken Jan earlier we would have missed so much, and I think the twins really need our help. Thank you God

In the last year Jan has also had a further 2 checks, and again on form our dear NHS yet again raised a false alarm meaning yet again our summer holiday plans were ruined as Jan was at beck and call of hospital staff who insisted on doing further tests. In the end she was pronounced clear, but only after a very stressful time spanning weeks.

The other amazing items of news on cancer seems to be greater concern on our treatment. Last week the TV and press carried an article suggesting that all our screening for breast cancer was making no improvement to cancer death rates. Tonight a channel four program entitled "Food Hospital" suggested changing diet could be more effective than drugs, and interviewed several patients whose improvements seemed to prove their case. Unfortunately I thought the program was very superficial, but at least it is a start

Aother check up due

To keep followers up to date, all going well. We have returned from a lovely holiday in France, HOT.

Jan is scheduled a 2 year check up mammagram this month, followed by an appointment with the surgeon. We expect and pray that all will be well...

But for statisticians the 2 and 5 year checks show peaks in recurrenc rates.....

Politics, elections, and cofunding

England seems to be in turmoil now that elections are just 2 days away. Both Gordon Brown for labour and Nick Clegg for the Liberals bang on and on about fairness......

The more we hear and think the less fairness there seems to be. We always wonder why we pay far more tax as a married couple, we could save money by divorcing. Is that fair, yet when Conservatives try to partially redress this imbalance they are slated as robbing the poor to subsidise the rich?

Why do our taxes pay for the police to crack down on heroin abuse yet at the same time our NHS prescribe it free to registered addicts in Brighton? Crazy! Is it fair that my taxes fund this waste?

I saw a paper showing how chemotherapy costs more to treat "large" people. Specifically those with larger body surface area, or more skin, as they need higher doses of expensive drugs! Is it fair that thin people pay the same or more taxes as they are more likely to be in work than overweight lay abouts who cost the health service more?

It seems we will be in for a period of austerity after the budget. It must affect health service funding. A TV program last night suggested a possible solution might be "co-funding" where the patient pays part of the cost of treatment. Amazing how something so obvious and now necessary has so far been rejected and in one breast cancer case barred a lady from further NHS treatment!

Ah, we must vote! But is our voting system fair? We live in a safe seat area, so in fact our vote counts for nothing! Fairness????? We need an investigation into our rigged elections! I was pleased to hear Anne Widdecombe MP talking on the radio two days ago. As a Christian she was standing down from parliament, but said it was now a "house of ill repute"

Thank God our main loyalty is to our heavely home!

Great news on grandson

We received very good news on my grandson last week. He has had a difficult start, three visits to hospital in the first 5 weeks of life, once in intensive care, and an initial diagnosis of 10% mortality rate and 50% risk of brain damage.

We were aware of the risk to his hearing caused by gentamicin, but other wise the risk of brain damage hadn't really sunk in. Fortunately or is it an answer to many praying on his behalf he was seen by the children's specialist hospital at Great Ormond Street in London in April 2010. They confirmed the diagnosis on CMN but reckoned that from the way his CMN satellites had developed he had a very low risk or neurological involvement, in other words a cautious all clear.

This is great news, an answer to prayer, and also a tribute to the work of Great Ormond Street hospital. I need to praise them for their excellence, in spite of my regular protests in this blog about socialised medicine!

The hospital recently featured on BBC TV. A tribute to the hospital but it hghlighted 2 issues to me:

1) So many of the doctors interviewed seemed to be aged 55 - 75...who is training up the younger replacements?

2) The horror of brain damage in children. They showed a young girl a few months old who entered hospital as an apparently normal healthy active child. Parents were warned and accepted the risk of brain damage as she had a general anaesthetic to allow a probably fatal aneurysm to be removed. She suffered brain damage whilst under anaesthetic, and was returned to the tearful parents as an inactive blind child.

My grandson had similar risks, but as far as we can see has been spared such horrors. He smiles and coos, follows sights and sounds, so we expect his brain is undamaged, thank God.

Awful decisions - faith, alternative medicines

I received a comment yesterday from a father whose son has serious cancer. How does one respond?

I was hit within 24 hours of that by news that my new born grandson has strep B infection, 10% mortality rate with associated risks of awful complications. We are told that he is responding positively to antibiotics.

I have no easy answer. I believe in a sovereign God, and believe we release our loved one's into his final care, and death is not the ultimate tragedy. In the meantime I fast and pray that God will mercifully heal and also thank God for the antibiotics.

Twice this week I have been referred to Fanny Crosby's story. Blinded at the age of 6 weeks by a quack doctor, she went on to write many of our hymns. So one sees from her life the dangers of quack medicine, yet also how a life can still be devoted to God and pleasing to him in spite of blindness.......

Why has God led me to these stories? I trust and pray grandson is not blinded by the strep B, though doctors have already said he has a 50% chance of brain damage.

Sorry to fellow sufferers, I have no easy answer but prayer and fasting.

Shambolic NHS appointments system

Today we go for our fifth attempt to get a mammogram and its result. The process has so far taken well over a month, the Xray was taken on 20th August and it is now 25th September. It needed 5 interactions with the hospital. What a comment on the organisation of our NHS!

The Xray was taken on 20/8/09 and an appointment booked for a consultants visit to follow up. We expect ths to be all clear so should not take long. In fact a simple phone call to say "all clear" would suffice.

The NHS set an appointment for 4 Sept. But we had a phone call on 2 Sept to cancel this.
Rescheduled by NHS, not us, to 18 Sept, which was canceled by a phone call on 16 Sept.
Rescheduled again for the hospitals convenience to 24 September, an appointment at which we attended, a return journey of 30 miles. On arrival at reception we were told it was impossible for us to have been given an appointment for that day as no consultants, and not even a nurse trained in Xray interpretation was available that day. Jan showed them the confirmation letter they had sent, why sent it if the appointment was "impossible?"

Surely we need a management shake up, not more funds for cancer research?

Obama row over socialised medicineI

Interesting row seems to have developed over last few days as a senior UK conservative politician has said he would "not wish the NHS" onto the Americans.

Two days ago Gordon Brown appeared on our TV stating how good our health service was. Similarly our health minister stated that queues were small in the NHS.....

The truth? This blog records the accurate diary of one cancer sufferer, how test results were lost for 6 weeks and it took a year to get to see the consultant oncologist.....Each entry is accurately dated, a scan will reveal the aweful truth of Jan's treatment.

On the same day that this row broke out, a neighbour walked past to go for a swim on the nearby beach. He was pleased as punch to be fit again, having had a heart pacemaker fitted three months earlier....I asked, he had gone private. Why after paying taxes to cover this on the NHS did he pay yet again to go private?

His response was to get a quicker result, a 3 month wait in the private system instead of a 6 month wait on the NHS...he didn't want to wait six months as he described his condition before the op as being at half strength.

Obviously socialised medice as practised by the NHS in the UK means no means testing for vital treatment.
But it means our hospitals are strained by hypochondriacs and malingerers who have no financial dissuasion, and our waiting lists are long.

For the rich who can go private there is the farce of paying twice for the work, once direct to the hospital or insurance company, and again through taxes for a service one declines to use.

Muslim now BBC head of religion

I was horrified to read this post in the Times on 12 May. One has to wonder about the "political correctness" that permeates our society. Ta appoint a Muslim as head of religious broadcasting at the BBC, the state broadcast medium of a supposed Christian country takes the biscuit.

It saddens me. I still thoroughly enjoy about every third programme in the "Songs of Praise" series. But I even find more than 50% of those programmes poor, and wrote to complain recently about an entire half hour programme broadcast in Welsh, which Aled Jones claimed was "God's own language".

Shame to see the BBC fall so far, particularly as I was an employee. I also notice they broadcast evolution as scientific fact, and try to prevent an Evangelical Christian broadcaster in Holland using their programmes with these unproven claims omitted. How the BBC has lost its way!

Jade Goody turns to Christ as cancer advances

There has ben much news on cancer recently. I found the story of Jade Goody, a loud and foul mouthed Essex girl who turned to Jesus as her death from cervical cancer approached very moving..

Holidays!

Oops, a long time since the last post...Why?

Jan had her annual check with the oncologist in April. For the first time ever she actually saw the consultant, an oncologist who gave confidence she knew what she was talking about, unlike earlier apointments where so often the replies were "I don't know", or even worse panic inducing tests for potential new cancers.

All was clear, so we jetted off to Portugal for a couple of weeks break on the Algarve!

Prayer in US, yet banned in the UK

We watched a thrilling TV program tonight on Dr Ben Carson, one of the US leading paediatric neurosurgeons. He is a devout Christian who has led the world in seeing "miraculous" recoveries of patients for whom other doctors had given up hope.

He states he prays before each surgery, and asks his patient to do the same as their homework and contribution to the team. The results speak for themselves, this guy is world renowned, and even gets onto TV in the UK....

Yet what of our NHS? Will they learn from such leaders? It seems we are determined to suppress any formal mention of God. Recently a nurse has been suspended just for offering to pray for an elderly patient. The patient was not even offended! Yet the nurse was suspended.

From the BBC:

Community nurse Caroline Petrie says she asked an elderly woman patient during a home visit if she wanted her to say a prayer for her. Mrs Petrie follows the Baptist faith.

The patient, believed to be in her 70s, refused and Mrs Petrie insists that she left the matter alone.

The woman wasn't offended but was concerned that someone else might be". As a result of this Mrs Petrie was suspended, without pay, on 17 December 2008 and will find out the outcome of her disciplinary meeting next week. You can sign a petition on her behalf here.

It could be excusable of we had proof that our NHS treatment beat Dr Ben Carson's, but it doesn't. It seem so sad that our NHS take such a line, something that has only come in over the least 30 - 40 years. A London hospital in the 1970s used to start each day with prayers on the wards, and Jan regularly prayed with her patients. What we have lost...

1 year anniversary - all clear

Jan had her first year anniversary checkup 2 days ago, thankfully all clear. Jan saw the consultant surgeon, who merely felt her breast, and was unconcerned so no mammogram was taken.

As neither he nor she could not feel the original cancer, it only showed on mammogram and then ultrasound this is not too re-assuring, but a mammogram is scheduled for 6 months time.

The nest day I reflected on how we relied on a clear outcome, and how devastating a recurrence of cancer would be. We have just booked two foreign holidays for the next 3 months without any cancellation insurance. Any re-arranging to fit around hospital visits would be so depressing. So we thank God for this good news.

Jan continues with a slight skin rash, attributed to the long since abandoned Tamoxifen, and pain in her shoulder, attributed to Arimidex. But so far she lives with that to reduce the risk of recurrence.

Socialised medicine - Betsy Kulman

An entry on the UK NHS socialised medicine so that Betsy can ask questions by way of comment.

Socialised medicine is something that we (or at least our government) have been very proud of.

The benefits are that we see our friends receiving modern medical treatment as needed, with almost no regard for cost. Two friends have recently had nerve grafts to recover from cancer and industrial accidents. This is high tech medicine. A german immigrant had his life saved by a UK liver transplant.

However if leads to great inefficiencies:

• Overload due to excessive expectation. Callers to the ambulance service rang to ask crew to help wrap up Christmas presents, and to request an ambulance for a fashion photo shoot because the blue lights would look good..
  
• Many maligerers visit doctors rather than working
• Inefficiency that seems endemic in any large government run body
• Over regulation prohibits development of alternative treatments - Mexico seems better than the UK on this.
• Excessive and politically manipulated waiting lists. Jan's radiotherapy was way later than government targets. My earlier posts list many NHS delays and manipulations.
  
• Political interference - we could not top up Jan's NHS teatment by paying ourselves for additional drugs without losing all NHS treatment - the government claim this is to ensure fairness! Is it fair that I cannot spend my after tax hard earned money as I want?
• It is run as a mechanised production line for statistical efficiency rather than as a caring organisation. Staff have been "removed" for offering prayer support. We pay car parking charges just to attend the hospital. Sometimes these are longer than necessary because our shambolic hospital organisation always results in long delays.
• Ambulances have been wheel clamped whilst parked at the hospital!
  

So I sometimes envy rich Greeks or Americans who have health insurance and choose the best hospital for each treatment as needed.

The drawbacks of UK's socialised NHS

Jan had a further check up between Christmas and the New Year. All was well, the dermatologist reckoned Jan's skin reaction was caused by an allergy to Tamoxifen, so was not Paget's disease or anything untoward.

The visit brought home a snag of our socialised medicine, which enables any waif and stray to demand attention whether needed or not. A consultation fee would stop much time wasting of our hospital staff, which of course has escalated by drunks over the Christmas holiday. A fee might also encourage some respect for our medical staff.

I write this as whilst visiting the hospital we passed a loud youth calling a doctor an "arsehole". |It saddens me that youths can be so uncouth to staff we need to prolong Jan's life!

Power of Prayer

Interesting that since Jan's diagnosis we come across so many friends and contacts who also have cancer...one encouraged us that prayer has major effects.

A lady friend of Jan's had tumours in her neck, needing a nasty operation, to be followed by radiotherapy. The operation cut through the jaw bone to gain access, and a nerve graft to repair the damage. The surgeon planned for the work to take a whole day, and the lady needless to say was very afraid.

A a member of a local church she gathered a large team of folk praying to support her, probably amounting to something just under 200 folk. She assured the surgeon that she was a Christian, and would rest the matter in prayer. The operation was performed, and a week or so later on removing the bandages the surgeon was amazed by the rapid and good recovery. "It must be those 3500 people you have praying for you!" he exclaimed.

More evidence that diet is effective

I was encouraged to read today's news in our Daily Telegraph. It reports from Addenbrooks Hospital Cambridge that a study found that almost four in ten patients with aggressive prostate cancer did not need planned surgery or radiotherapy after making simple lifestyle changes.

Wow, good news for me as a man. and for Jan as breast and prostate cancers share a similar hormone dependency.

More veggies tonight!

All clear after 2 biopsies + scan

All clear was given again ..... we are thankful, but still unclear as to why Jan has a persistent skin rash. As it is not cancer she waits a longer time to see a dermatologist, none of the cancer fast track treatment for that!

To give the historical data, Jan had a biopsy on 6th October to check for endometrial cancer. We took a lovely break to southern Europe in early October, to return on 16 Oct to a letter saying the earlier biopsy looking for suspected Paget's disease had proven clear of cancer. This was followed by a full scan and examination again on 17th Oct looking for endometrial cancer. On 23rd October we saw the oncological registrar again to be told that this was clear, but we must still wait for a dermatologist's consultation...

So good news on the cancer front, and it seems we need to do self diagnosis and treatment for the skin complaint. We did joke to the appointment secretary that the doctors were adding maximum possible delay in the hope that the condition would clear itself rather than causing them any work. She agreed with us, maybe we were too close to the truth!

Gynaecologist

The frustration of dealing with our socialised NHS. If it wasn't that we were sure Jan was cured and further tests were purely a precaution we would be in panic. All the staff seen were charming, but the overall organisation was appalling.

Last Friday we had a phone call telling us to see a doctor at Hertford today, Monday at 10:00. We weren't told whether this would be the dermatologist on gynaecologist as we expect both. A quick Internet search showed the doctor's name was for a well respected gynaecologist.

On arrival at 10:00 the receptionist stated there was no appointment for Jan, we were completely unexpected. After an hours delay the story changed to she was expected at 11:00, but she couldn't be seen before 12:00 as the notes were still miles away at another hospital!

By 12:00 Jan saw the gynaecological registrar, who still had no notes, so Jan explained why she thought she was suffering from a reaction caused by a switch from Tamoxifen to Arimidex. They talked as an ex ward sister talking "shop" to a doctor. Tamoxifen pumps the body with "fake" female estrogens, whereas Arimidex provides none, and stops the body's production of estrogens. So the body has a shock as one goes from excess to very few estrogens, and some effects Jan has experienced tie in with what we could expect from that hormone swing.

He seemed to agree, and was unconcerned by Jan's symptoms, and did not think she had further cancers. He took a sample of the endometrium and wants an ultrasound scan as soon as we return from holiday as a precaution.

He did however state that women who had breast cancer were at higher risk of endometrial and ovarian cancer, hence he wanted to do these 2 tests......... When I look on Google I find no link at all between breast and endometrial cancer apart from that caused by Tamoxifen which is a carcinogen.

Harold Burstein, MD, an assistant professor at Harvard Medical School says: "We know there are relations between breast and ovarian cancer. We also know that the BRCA genes account for this relationship." But Burstein also underlined the other side of the news. "Women who don't have a family history of breast or ovarian cancer and are older than 49 when they are diagnosed with breast cancer have a very low risk of getting ovarian cancer."

So why do the UK doctors claim a link? Is he over simplifying for thick people or dare he not admit the dangerous risk that Tamoxifen causes endometrial cancer? ?

This is the second time the hospital have denied all knowledge of pre-booked appointments, after also losing mammograms and test results. If that record keeping is so poor we question whether we can trust their results of these tests.

Tamoxifen allergy or Pagets?

Jan saw the oncology department again on 24th Sept. She saw yet another doctor, there has been no continuity at all in that department. This registrar seemed even less experienced and uncertain.

If Jan has an allergic reaction to Tamoxifen causing multiple skin eruptions it continues, though it is hardly any worse than at the last visit. Could the Tamoxifen or its allergic effects be taking over six weeks to purge from Jan's body? It seems to have the oncologists in panic. After the previous visit on August 13th she had to see three specialist doctors urgently within a week. This visit was no less dramatic.

The starting comment was “you should see the consultant surgeon urgently”. Jan replied, “we have a holiday booked to start in a week's time” which saw an urgent appointment to see him that same afternoon. He took a biopsy to look for the possibility of Paget’s disease, another unpleasant breast cancer. She was later phoned with an appointment to see a gynaecologist within 12 days and expects an appointment to follow to see a dermatologist and a return to the oncologist……..

So we find it alarming, certainly not re-assuring. When I use Google I find the chances are between 4 and 5 to 1 that it is a reaction to Tamoxifen rather than more cancers. The one concern I have is does the research on skin effects of Tamoxifen exaggerate those risks to make the more expensive Arimidex look safer?

In this period of doubt we plan to jet off to Portugal to relax on a warm beach! We won't know the results of the biopsy until after our return....the wonders of our NHS! Maybe it is a test of our faith in God for a full cure?