An internal view

Today the postman came bearing a package marked private and confidential. I should have guessed what it was but the contents still took me by surprise. The CT scans and my final Xray came on three separate disks which also carries the viewing system allowing me to see sections of my body and move through it. Of course it's all in black and white and I haven't a clue what I'm looking at - but I'm impressed.

The final Xray I thought I'd share with you - probably quite against the rules and infringing copyright. But hey, it's my body so what the hell!

You can see the tremendous effort the remaining upper lung lobe is going to to occupy the available space and you can also see the staples - titanium I understand - which were used to staple up the various bronchial tubes which of course are now surplus to requirement.

A little white one

Well I was not wrong. Though my energy level is as high as ever, my Reiki practitioner explained that all but one of my chakras was blocked. I suspect that our whole family is suffering post-traumatic stress. It's going to take a long time and many tears before the loss of our lovely grandson ceases to be at the forefront of all our lives.

Yesterday we eat a family dinner all together and it's moments like that which are very important to all of us I think. It had its lighter moments, one of them being around deception. Earlier in the day four of us - three generations - had gone shopping. It's strange but I still don't feel right shopping on a Sunday; it's just that when I grew up you couldn't. Being in a rural area there simply were no shops whatsoever open on a Sunday.

Anyway, my crime yesterday was even worse than shopping on the Lord's Day - it was shopping at a certain supermarket that we love to hate. When the matter of what we had bought and where was raised later at dinner, the question was put to our seven year old granddaughter. Most amazingly she lied with the ease of a true professional con-woman. Not only that, but upon further quizzing by her mother (who was enjoying the joke enormously) as to which section the cream might have been located in that particular supermarket, the little star of dissemblance said quick as a flash: "milk and dairy".

Such accomplishment at such a young age. We did laugh. I remember a wise man telling me once that children are not civilised until they have learnt to lie politely, as in: "And how are you?" - "Very well, thank you."

Blocked channel maybe?

I remember hearing something on Radio 4 about dreams a while back; that you dream and work things out in your head about seven days after the event. I've been dreaming massively, not just last thing before I get up, but waking during the night due to cranial disturbance.

Maybe I'm slightly traumatised by recent events - it would be unsurprising if I wasn't - and yesterday I had an unmistakeable feeling of something not being right with me. At first I thought I might be sickening for another bout of vestibular neuritis where my balance is affected. It's something to do with the semi circular canals and the little hairs therein going awry. I used to suffer from it before I discovered my thyroid was playing up. But no, I don't think it's that. It's not anything I can really put my finger on; it's far more abstract, a sort of spiritual not-rightness - the antithesis of my usual (these days) right as rain and zooming along feeling.

I'm pretty sure I need another Reiki session and that something somewhere is blocked; some energy channel. So I've contacted my Reiki practitioner and I've booked for her to see me on Monday.

Busy, busy, busy

I'm just so busy at the moment; so much do do. We're about to fetch some damp proof membrane and four paving slabs from Travis Perkins and bed Franc the Van down in his winter quarters. It would have been lovely to have had another outing, but the weather's not so good now and we've just run out of time, so we'll tuck him up in his warm van blanket and empty all his tanks and wish him a happy winter.

Our daughter is much recovered and I see form her Facebook page that she did some retail therapy yesterday - which is a good sign.

Me? Well I'm now getting some of those strange nerve tweaks which I understand are what happens when nerves grow back. They are infrequent but just every now and then I feel a strange sharp tingle somewhere on my back or side.

I saw the GP on Monday and he has started the referral process for the ear, nose and throat consultant who will take a look at my thyroid. Using "Choose and Book" - yes, IT for the NHS really does work - I have secured myself an appointment in 60 days time. In the meantime I'm just going to forget all about it. I can't forget about the drugs though because the GP is relunctant to take me off the beta blocker and the asprin, although my heart has been in perfect order for the past month. He reckons while I'm still on track for potentially more treatment we should leave doses as they are. That's a nuisance as I think it restricts me a little, making me pause for breath when otherwise I wouldn't. Hey, ho, I'll just put up with it until November and then we'll see. It did occur to me that I could unilaterally stop taking the stuff and then I would remove from the GP the responsibility for the decision. I'm still thinking about that.

As I suspected

I received this morning the letter which follows an oncologist appointment. It is as I have always suspected: that I didn't have much cancer. My right and middle lung lobes - the ones I had removed - showed adenocarcinoma (a type of cancer that develops in the airways and is associated with cells that make phlegm) which was "very minimal, less than 5% of the lesion completely excised".

In other words the cancer in the lung itself was very small. I always thought this was the case because by the time I was starting chemotherapy my lungs had almost completely recovered their function and my coughing had stopped. It's quite nice to be proved right.

On a pertinent topic and one which has been in the news recently, about the standard of communication in the NHS of doctors without English as their first language, the medical secretary has for the third time (even after I pointed it out to her the first time!) typed "hyperthyroid" as opposed to what I am which is "hypothyroid". And* the pentultimate sentence of the letter lacks two words, one of which is a verb. Luckily the meaning is still clear.

*My late business partner said there were occasions where using "and" at the beginning of a sentence was OK - and he should know as he had a Cambridge MA in English. On this occasion the meaning is perfectly clear and as I'm talking in a style like normal speech, I feel I am entitled to break the rule.

A small ray of sunshine

The very small room in which our daughter has been incarcerated for the past four days was beginning to get her down. There's no TV there because of course it's not designed for anyone to stay very long, being on the labour ward. The arguments over blood chemistry continued into the morning but at lunchtime the consultant instructed that she be discharged on the grounds that she was much more likely to be relaxed at home than in hospital. I suppose where blood pressue is concerned this is a valid point.

So when I last saw her she was tucked up on her very own sofa in their very own house with her older sister drying her hair. Hopefully now the real recovery can start to take place.

Everywhere I went in the town that they lived I bumped into people either asking about my health or our daughter's. People are just so very kind; I know lots of you have have sent messages of condolence and support and we're all very grateful.

Reluctant but patient patient

Our poor darling daughter is still stuck in the local hospital while her iron levels very slowly improve. There appear to be quite a lot of different opinions about what do to with her and how to treat her. One advocates further blood transfusions and maybe IV iron, but all the time it must be referred to the haematologist. So she's still stuck in the labour ward, in a private room of course.

I know you're all thinking how dreadful that must be - hearing other mothers giving birth - but I understand there was even laughter in her room last night when a women was heard being particularly loud and opinionated during labour. Even when she hears babies crying, our daughter views that as very positive: "I know they're alive OK" she says.

Hopefully she'll be home tomorrow; fingers crossed.

Iron levels rising

Our daughter's blood chemistry is slowly returning to normal. This is not helped of course by the awful diet she is being fed while in hospital: white toast and butter, baked potato and cheese, mushroom stroganoff. She doesn't like anything sweet so fruit juice or actual fruit aren't an option for her.

I've just had a text to say that she's been down to the restaurant for food and has had some sunshine into the bargain.

What she does need is a good thick steak and some green vegetables, but that will probably have to wait until she's home from hospital. I can envisage several steak dinners ahead for us, as mother and daughter strive to improve their blood counts.

Oncologist's delight

It was back to the hospital today to see our daughter who is steadily improving in general health. Also I had an appointment with the oncologist.

He was clearly delighted with the results of the histology report following the surgery and had never before seen a situation where chemotherapy alone had overcome entirely the cancer - ie. there was none residual in my lymph nodes following surgery. Radiotherapy will not be required. I enquired as to the length of his career so I could get a handle on how unusual a result this actually was. 21 years as a doctor and 15 years as an oncologist gives you some idea of the statistics. I may yet become famous - albeit anonymously - as a case study.

Back to the issue of the thyroid which, he told me, still glowed after the last PET scan. I've been unable to understand why there was initial confusion about my glowing thyroid and glowing lung when presumably the histology right at the start indicated lung cancer. What I didn't realise is that ardenocarcinoma, which is what I had, looks the same in any organ and you can't pinpoint which from the histology. That's not good news because it still raises the spectre of thyroid cancer.

I asked the oncologist what he reckoned. He said that, given a thyroidectomy is a pretty standard operation, it might be wise to remove it - especially as I already take synthetic thyroid homone to make up for the organ's inadequacies. I then expected the oncologist to refer me onward, but no, it's back to the GP. The oncologist will write to my GP who will refer me to the ENT guy and then back into the system go I.

This will all inevitably take some time but, given the spectacular results of the chemotherapy, there is of course some reason to suspect that it may have already knocked thyroid cancer on the head - if it existed there in the first place.

Update on yesterday

Never in a month of Sundays did I ever envisage that this blog would be about anyone other than me. But this morning I feel it's appropriate to give an update on our darling daughter. I have her permission to talk about her here.

I've been in to see her this morning already. She's very very sad but her health is improving. A lot of blood was lost yesterday and she had transfusions of both blood and clotting agent. Her blood chemistry is returning to normal but it's not right yet so she'll be staying at the hospital at least for today.

Unimaginable sadness

Breaking bad news is not something I'm very good at. I'm not blessed with soft introductory phrases and tend to tell it how it is - straight out. And so it is that I have to tell you of the unimaginable sadness of today.

Our next grandchild was this morning stillborn to our youngest daughter. She and her partner were told that the baby had died and I stayed with her while birth was induced. He was so lovely - a perfect baby - but one who was just not meant to be. We have all cried buckets and I'm sure there are plenty more to come.

The reason for the baby's death was abruption of the placenta - the placental lining separated from the uterus. Our daughter is doing well but has had blood transfusions and continues to be monitored very closely.

Today has been harrowing but amidst the tears, the disappointment and the tragedy of it all, I have felt terribly proud of our daughter. She behaved impeccably and made it very easy for the midwives to care for her, thanking them at all stages. Indeed I've felt proud of all my children and their ability to weather this storm. It's by no means over but as ever I know they'll pull through it together.

What a difference a year makes

Tomorrow it will be a year to the day that I began the long journey of discovery of my lung cancer, followed by treatment and seemingly cure. The 9th of September has been stamped upon my brain ever since. It was the day that I went to see the doctor - not my doctor as he was on holiday - about my hacking cough.

I kept a personal diary right from the start and only abandoned it when I received my diagnosis and decided to share it with everybody. Here's the entry for 9th September:

Appointment with the doctor - very thorough but rather inhuman. Gave me a card and told me to go to the hospital for chest Xray which I did that afternoon. Also gave me Amoxicillin for 5 days. Shocked - because card for hospital said “smokers cough”. Attended the Xray clinic early pm - very quick - back at work in the afternoon. I felt a bit reassured - and I’d had the nightmare the night before where I was dying so anything must be better than that.

What a difference a year makes!

My wonderful surgeon

We went to see the surgeon on Thursday and this time we were all so much more relaxed. They took an Xray first and when we were in the consulting room I asked if we could both move round the desk to take a look. It was extraordinary. My upper remaining right lung lobe is doing its level best to occupy the space and my diaphragm has indeed moved up. I am kicking myself now that I didn't ask to take a snap of the Xray with my phone - it would be good to be able to share it with you.

The rearrangement of my innards does, I now realise, explain some of the odd little aches and discomfort I've had below the site of surgery and around my stomach area. With the diaphragm moving up that must leave some more space below. Connective tissue has no doubt been straining and stretching a great deal.

I asked what size the tumour had been at the point of surgery. He replied that it was difficult to say as there was so much scar tissue. Histology reports on the tissue removed confirm the lung cancer diagnosis. I do have some metal in me - titanium staples to fasten the tubes.

The surgeon asked whether I had some loss of sensation in the right side of my chest. That was a interesting question, because indeed I do. The reason he divulged is that he used some muscle tissue from between my ribs to cover stiching on the bronchus and to strengthen it. I may not regain that sensation because of course some nerve damage was inevitable, but it's a small price to pay. No cancer was detected in any of the lymph glands removed and there was no sign of tumour in the upper lung lobe. While he said the oncologist might offer me radiotherapy he, the surgeon, couldn't see the need.

That sounds to me like a great success and I did thank him effusively, saying that nothing I could say could adequately express how grateful I was to him. He responded most charmingly and so modestly by saying that it didn't matter, but I could see that he was himself very pleased with his work and satisfied with the outcome.

I visit the oncologist next week. There's just the question of my thyroid now and whether or not it glowed during my last PET scan and whether or not there is still any cause for concern there. I'm inclined to think not.

Radio 4 this morning

There was an interesting little discussion on Radio 4 this morning, instigated by Matthew Taylor's blog about whether middle class educated people have a better change of surviving longer when diagnosed with terminal cancer. No firm conclusions were reached.

I don't think it's about education or class. I firmly believe that diet, relief of stress and anxiety and creating the climate in which the body can do much of its own healing is what really matters. You don't have to be rich to eliminate processed food and sugar from your diet; you may have to be educated to do it though.

If anything needs to be done about the way we handle cancer management, I think it should be the addition of dietary and lifestyle advice.

We're off to see the surgeon this afternoon to find out exactly what he got up to in my thorax. I'll post a full report in due course.