We've finished knitting

Quent's wound has finally closed up after nearly 6 weeks. The infection seems to have extended the healing process by about 4 weeks.

It isn't the neatest scar you've ever seen but it will get better as it continues to heal and it's great to be dressing free. Quent wears his shark bite with pride.

So Quent has kissed goodbye to the nurses (Yes, of course I mean literally!) at least for the moment. Their parting gift was to tell us the story of one less than hygienic patient who had maggots in her wound.

Enjoy your lunch.

Staying positive

Sometimes I find it very hard to be as optimistic as I would like to be. Generally we are full of hope, but there are times when you just don't feel sunny. This has been a wet weekend all round as my eyes have synchronised with the weather.

I have to stay positive, for Quent and for Oakley - and for my contact lenses.

What helps? (And hopefully will help you too)

1. Whilst there isn't (yet) a cure, Quent is younger than average, physically fitter than average and mentally as strong as anyone. Plus he has a lot to live for. Plus his lung speckles are small. All of these give us realistic hope that he will be at the best end of the spectrum.

2. Treats. This evening, we have booked a few days away the week after next, in between District Nurse visits. South of France here we come. We booked it on lastminute.com dynamic packaging (flight + hotel) and it was a total bargain.

3. You. Please keep the comments coming. They ALL help. Short, long, funny, serious, cancer related or unrelated news.

As Quent's aunt said (I think of it often and it helps) "Your job is to be strong". And every job has its tough moments. Here's to a good day in the "office" tomorrow.

Decisions, decisions

Professor Gore ended the name game. He should be called Professor Jolly - but apparently prefers "Martin".

He didn't really give us any new information about Quentin. He confirmed that, although immunotherapy doesn't have a great success rate, fit people with small volume lung disease (ie Quent) do relatively well. He did say that the chances of the speckles NOT being cancer deposits are pretty small, because of the status of the kidney tumour and the way they look.

We need to see if Quent's speckles grow. We will repeat the CT scan mid December and again every 3 months until they grow, when we will start treatment. "Tonight, the news is no panic". He said they can't really predict things like life expectancy for Quent until they have more of a pattern of how the speckles are performing (6 to 9 months worth of data, unless they have grown very quickly before that).

Martin trained Dr Savage and says he is very good. For most of the consultation it looked as if the choice between where we would go for treatment would have to come down to trivialities like the colour of the curtains. (Marsden would win hands down. This NHS hospital even has carpet in the reception!) But then, just near the end he revealed a key difference:

• Dr Savage / Charing Cross gives a combination treatment (triple therapy) of interferon, interleuken and 5FU.
• Martin / Royal Marsden only gives interferon. They only use treatments according to results not hunch. The triple therapy has gone back into trial as it seems to be better than interferon for only 5% of cases.

Which to choose? It seems the key downside of the triple therapy is its toxicity (it has worse side effects). Also that it is harder to administer, so difficult to justify cost-wise unless they can prove it really does work. The upside is that it does seem to be better than interferon in some cases and he even seemed to mention a cure for a few cases. (Although Dr Savage wasn't claiming that).

The results of the trial will not be known for a year, so we need to choose, in case Quent needs to start therapy before then. (We can't have both, and so there is a chance that if we go with Martin and the interferon, the trial will subsequently say that the triple therapy would have been better).

We have decided to find out more about the side effects. If we are risking flu like symptoms for even a tiny chance of a cure, Quent will probably prefer to go with the triple. If the side effects are more serious - like amputation or something - then maybe we'd think again.

One important thing Matey Martin raised. The next stage of treatment (the serafanib) is not available on the NHS yet, so we need to stay private.

Have a great weekend. Our Indian takeaway has arrived and I need to open the wine ... did I mention that Martin rubbished all things "Holland and Barrett"?

Progress in pictures

The district nurse came today and seemed very pleased with the wound. She even said "You must have a very good diet for the infection to have healed this quickly" and so shot straight to number 1 nurse in my eyes.

Here are a few pictures to show how well Quent is doing. And for those of you who have said they haven't met either Oakley or me, here we are as well.

1. This was taken in Chiswick House grounds the day after Quentin's diagnosis. I have to say I wasn't feeling as cheerful as I look.

2. The day before he came out of hospital - and Oakley's first visit. A week after surgery and the doctors confirmed that, while the kidney operation had been successful, there really was nothing they could do for Quent's hair.

3. Quent and I had a lovely night away in a hotel on Sunday night (19th Nov). Oakley stayed for a photo then disappeared with Nana and Grandad. We decided to break the diet so Quent had red meat, red wine a cream tea and a full English breakfast!

a short post

Quiet day today. Quent has just woken from a 4 hour afternoon nap. We were waiting in all day for the district nurse to apply a seaweed dressing. She never came, so now I am wondering whether I have got the wrong end of the stick and the seaweed dressing is meant for tonight's dinner. Who knows.

No news really. Just proving I can post something succinct!

What's in a name?

You could say it was obvious that Dr Savage was going to be less chirpy than Father Christmas. In the roller coaster that is cancer treatment, we had a sobering morning after our optimistic start to the week.

Dr Savage is one of the specialist oncologists (Cancer Specialist). He wasn't savage - he was very nice - but a few hard facts hit home for Quentin this morning. The situation in general is as follows:

• There is no cure for kidney cancer. This is "a very serious illness".
• Chemotherapy and radiotherapy do not work for kidney cancer.
• Immunotherapy is the "standard" treatment, albeit with a low success rate.
• There is now one other "text book" treatment called serafanib which they feel optimistic about.
• There are some other experimental treatments (including the vaccine we read about yesterday)
• The treatment will aim to keep the illness under control for a "good number of years" but that cannot be guaranteed.

He confirmed that the speckles are very small and there is a possibility that they may not be deposits, but said we have to assume they are, at this stage.

Which therapy to go for.

Immunotherapy is not offered to all patients as it doesn't have a great success rate. Only 15% of those treated get a real benefit. In a few cases the cancer reduced considerably or seemed to disappear, but generally the benefit is a question of extending life.

Quentin will be offered immunotherapy. He is young, does not have detectable deposits in his bones or brain and those in his lungs are small. This makes him a good profile for the treatment.

Serafanib has a greater success rate. 50% of those treated see a benefit, but the benefit is not as great as with immunotherapy. (Although the drug has only been licensed for 6 months, they know this from the trials they have done over the last 5 years).

The other drugs / vaccines are not licensed yet. Dr Savage's view was that they often sound miraculous at the very early stages of trials, but rarely does the news remain as positive as they move through years of testing towards being a licensed drug. Trovax etc are many steps down the line.

Dr Savage's recommendation was to try immunotherapy first and then to move onto serafanib. Hopefully this will be a couple of years - or even more - down the line ... by which time, who knows what the kidney cancer landscape will look like. He did stress that if Quent had been diagnosed 5 years ago, there was only immunotherapy, whereas now they have two therapies they have confidence in, so it is definitely good we are in 2006.

What is entailed?

Firstly we monitor the speckles. They can only do CT scans every few months (because of the radiation) and in between they do chest x-rays, which are not as accurate, but would pick up any major changes. Quent had a chest x-ray today and will probably have another CT scan in December.

We start immunotherapy if the speckles change or if Quent becomes unwell (tiredness, pain, coughing, shortness of breath).

The treatment involves injections under the skin of a combination of interleuken, interferon and 5FU. Much of the treatment can be done at home but some has to be supervised in hospital because of side effects (tiredness, feeling very hot, swelling in feet).

What can we do?

Stay healthy, confident and happy. Be optimistic that after treatment the cancer will behave like a chronic illness which can be controlled.

Next Friday, we see Professor Gore for his take. If his name is anything to go by, I will probably faint in that consultation!

Seeing Santa

We went to see Father Christmas this morning to check the wound and to get the pathology.

The burning questions were:

1. Is the wound OK?
2. What type and grade is the kidney cancer?
3. What did the lymph nodes show?
4. What about these speckles on the lungs?

Generally, the meeting was very encouraging. Of course everything comes with caveats but from what we understood:

1. He is not worried about the wound.
2. The kidney cancer is grade 3 (out of 4). It is "not the most aggressive type". Apparently there was very little chance of it being 1 or 2, so this is good news. It is a conventional clear cell type - the most common sort. The kidney stage is 3 (out of 4) as he expected - having spread into the renal vein, it could not have been 1 or 2.
3. Of the 9 lymph nodes he removed, there were small deposits in one and it was one of the ones closest to the kidney (hilar lymph node) so, to use Father Xmas's terminology we have got it at the first hurdle. This means it is less likely to have spread elsewhere although they can't say that for certain.
4. The speckles on the lungs are very small (At one point he said "I can barely see them"), but most noticable on the left side. We really can't tell anything about them until we get another CT scan and compare whether they have grown. There is even a chance that they aren't tumour deposits, although it is "high on the list of possibilities".

I won't go into every question we asked (there were quite a few!) but a couple of other points of note were:

• Life expectancy - we are talking years not months. It is very variable and depends on the rate of growth of the spots and the response to treatment. One man whose spots at this stage were bigger than Quent's is still alive 12 years later. Also there are new treatments appearing all the time - see below.
• The smaller the spots, the easier it is for the immune system to attack it (& hence more chance of immunotherapy being successful).
• In taking out the kidney, they have removed 99.5% of the cancer detectable at this stage.
• There is a new drug - serafanib - which is having good results and can be tried after the immunotherapy.
• In the waiting room, we picked up today's Daily Mail and read the headline "Vaccine for kidney and bowel cancers within 3 years" . Whilst The Daily Mail is hardly the BMJ, it makes very encouraging reading and seemed to be a clear example of the hope that I and so many of you have been praying for.

http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=416006&in_page_id=1770

All in all, a great meeting and we are now heading out for lunch on the river. As Father Christmas concluded "everything depends on the next couple of scans" which will take place in a month or so.

I would like to thank everyone with all my heart for your best wishes, prayers, crossed fingers and positive vibes. It is so comforting to us to know that we are fighting this en masse. So many of you have asked how you can help. Rest assured you are already helping, because we get great strength from the love that streams from the blog comments, emails, cards and letters.

I think Lord Blog will be onto me for verbosity if I don't stop now. More about immunotherapy tomorrow - when we see the wonderfully named Dr Savage.

Hot date

Since Quentin has come out of hospital we have been out quite a bit

- To the hospital (countless times)
- To the doctor's
- To a talk on Cancer and Nutrition

...there's a theme there somewhere....

- To nursery

and today, we went out to lunch! Things are looking up. It was probably not the best day to choose given I was sick in bed myself yesterday, but a treat is a treat and I am not one to cancel lunch with a sexy man.

We are so out of the habit - or were so excited to get out of the house - we managed to go without any money between us, but the owners kindly said we could drop it in tomorrow!

Quentin's wound attracted the attention of two nurses today. One took another swab and one took some blood. They don't seem unduly concerned - just being thorough, I think, to check the infection has gone now he is off the antibiotics. There is still a gaping bit about 2 inches long.

We have the follow up consultation with Father Christmas on Monday - complete with pathology - so I will post again then, unless something of great note happens over the weekend.

We also have the weekly weigh in on Monday and the good money is on a slight gain, after all the peanut butter Quent's been eating. If he puts some on and I manage to lose a bit due to a tummy bug, it will be a perfect result!

A good day!

We have had a good day from start to finish today.

It was the first night that Quent wasn't up and about. (Can't quite say he slept through, but at least he was comfortable enough to stay in bed).

He has also come off the antibiotics. They had to be taken 4 times daily on an empty stomach so it was quite a feat to get them into him around meals and sleeps. We are very happy to be able to be rid of them and to replace them with healthy snacks.

Quent celebrated feeling on good form by walking with me to collect Oakley from nursery. Oakley was pleased to see Quent but unappreciative of the milestone... Quent hadn't quite expected to be challenged to a running race home again - and Oakley clearly hadn't expected him to decline the offer.

Dinner, DVD and then bed await.

Stick to the knitting

The week seems to be dragging somewhat as we wait for the wound to "knit together".

I know this sounds like the title of an evening class, but successful knitting apparently means the bit of the wound which currently gapes 3-4mm apart will heal over. (Quent asked me to put this detail on. I am feeling a bit queazy just typing it). Still, every cloud has a silver lining or, in the case of today's nurse, a leggy blond one.

Otherwise we are starting to get a bit straight in our new normality. I have been clearing out the kitchen to make way for the new lotions and potions - the white rice and bulgar wheat has had to go. Meanwhile Quent is attacking some of the illness-related admin; cancer really does come with some strange and scary side effects.

And talking of side effects, Oakley continues to be a girl, though his name changes daily - today he is Saskia, yesterday he was Lily and on Saturday he was Amy; with a refreshing moment of masculinity on Sunday when he was Rory. This would be fine, except that he then addresses us as the parents of these friends so it gets a bit confusing. Role play is completed with a plaster over the "cut on my tummy" which the District Nurses have to inspect. Does flirting with nurses come naturally to all males?

Limericks

1. Wound update = it was indeed infected. Staphycoccus. Apparently without that it would be all healed over by now. It's set us back about a week, but hopefully the antibiotics will do their stuff and we will be back on track soon.

2. On a more cheerful note, when Quent was in hospital, I received two limericks (from different people).

There is a young fellow called Quent,
With a kidney the size of a tent,
He can still raise a smile
Despite lots of green bile
Which nurses use for ex-peri-ment

When Quentin was left with one kidney,
It announced to his friends "Hi. I'm Sidney.
Quent's full of good humour
Now we've cut out the tumour.
I did well- so did Quent. Well, didn't he?"

Entries welcome....You know you want to! ;o)

3. And to link those two bits of news, here's a limerick of my own:

On the wound we know we must focus
To fight this thing staphycoccus
So since Halloween
Nurses keep it quite clean
While I stand and shout "hocus pocus"!

Have a great Bonfire Night.

In for a pound...

One week since his release and Quent is still making steady progress at home. He is now sleeping better - and is catching up both day and night. He has a good reason. Oakley and I also fall asleep in the middle of the day - I guess youth and old age respectively are our only excuses.

The doctor has put Quent on antibiotics to adopt a "to be sure, to be sure" approach to any wound infection. They seem to be working as Quent feels more comfortable already.

Although I tell him how well he is doing, I do have one complaint. He has put on just one pound in the last week, in spite of eating well and starting out as a size zero. As any girl knows, a pound can go on just THINKING about chocolate, so I am hoping for a more feminine approach to weight gain this coming week. It's true that girls outperform boys in so many ways!