Peter’s Hospital Diary

Well after last week’s hectic round of visitors - and it was lovely to see you all - and Elspeth, thank you for the gifts - this week is rather quieter! The garage tidying remains a ‘work in progress’ - I can spend about an hour out there before I get tired, although the weather is so wet and miserable today that I think I will forgo that pleasure! The problem is that just as I think I am making inroads, I find another little glory hole that I can’t ignore!

Healthwise things seem a bit strange, particularly my sense of taste and smell. Unfortunately not for the better, and food smells a little less appetising than a couple of weeks ago. My mouth also seems more sensitive and while I enjoyed a pickled onion two weeks ago, I tried one last night and the vinegar irritated my mouth. On the plus side, I did enjoy a G&T at the weekend (thank you Elspeth for the gin!) but only after the tonic had gone a little flat. I think the newly opened tonic was too fizzy, and perhaps too acidic (carbon dioxide dissolved in water forms carbonic acid) for me.

The only thing I can think of that could be causing this would be the onset of GvHd. The same thing happened last year when I developed GvHd after the transplant. However I haven’t seen any changes in skin texture (yet) and it is only just 4 weeks this week since the DLI. Still, we shall see!

I was looking back over last year’s blog entries again and reminding myself about the GvHd. While it is to be welcomed as an attacking force against the lymphoma, it is not a trivial matter. My skin was pretty painful, and itched like mad, and those of you that follow John’s Blog will know that many of his current health problems are caused by chronic GvHd following a stem cell transplant to treat leukaemia. Still, better than the alternative!

So we continue to watch and wait, always remembering…. “Onwards and upwards”!!

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And I have just been looking back at the archives, this time last year I had also been to Guy’s - two weeks after I had been discharged - and I note that I had referred to bacon sandwiches again.

However, we are a year on, and so it was the well worn path again. I went up on my own by train, just to prove that I can, and I had no problems - in fact I even managed a little dash (about 20 yards!) to the train at Waterloo East. (In fact the station staff are so keen to get the trains away from there, I’m surprised they bother to let them stop at all.)

But I digress - how did the visit go?

Well it was a small clinic - I arrived at 9:15 for my appointment, and I was the first person there - the next didn’t arrive for about half an hour. The (only) doctor on duty was Rob (the specialist registrar) Linny is on holiday, the others were away, so Rob promoted himself to consultant for the day! It was good to see him, it’s been a while since we had a chat.

Anyway, the news was both good and bad. First the good news… Rob couldn’t find any enlarged lymph nodes, and as he put it, “with my current weight, they wouldn’t be hard to find”, he also remarked that my mouth mucosa looked a lot better, and that the delay in the healing of that little ulcer was probably due to the radiotherapy, but it should continue to heal, although it is slow. No sign of GvHd, but it is only 3 weeks, the average is about 6, and in some cases it can take up to ten weeks to appear, so back to ‘watch and wait’.

And talking of weight, after seeing Rob, I went to see Orla who weighed me, and this is the bad news, I have lost about 1.7Kg, so I had a chat with Rachel, the dietician. Fortunately she didn’t suggest a naso-gastric tube (this time) although she thinks I should have had one before the radiotherapy as she thinks most of the problems were caused by that. She does approve of my diet, but thinks that while I have enough calories to keep me going, as I become more energetic and active, I’m not eating enough to start putting on body weight, and for my height, I should be at least 69Kg, and preferably up in the high 70s. So her recommendation is to continue the supplements (scandishake - which gives 600 Calories) and try another one called Calgen, which gives an additional 400 a day.

The Calogen is described as “a long chain triglyceridefat emulsion” - mmmm sounds appetising, and comes in butterscotch, banana and plain varieties. The plain one can be mixed with other foods, the flavoured ones can be mixed with milk, the scandishake or drunk neat! 90ml gives the required 400 Calories.

I haven’t tried it yet, but as start, I supplemented my M ‘this is not just food’ &S lunch of a Duck in Hoisin sauce wrap with a toasted cheese and ham sandwich when I got home. Tonight we have cassoulet which is pretty calorie dense, so I’ll try the supplements tomorrow.

Back at the ranch, Olivia is visiting, and was in fractious mode again, although she eventually settled as is now asleep. Actually I fell asleep while I was rocking her pram, so perhaps my gentle snores sent her off!

So that is it for today - overall good news, so …. Onwards and Upwards!

(PS - Forgot to mention - another little step - I enjoyed a chinese take-away last night (but too soon for a curry!)

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And no obvious comments please about all being perfect tossers! However I have just enjoyed my pancakes!

I’m afraid no photos this time, although Olivia has been over a couple of times, but in fractious mode. (Poor thing!) However she is putting on weight rapidly and now weighs 10lbs!

Most of my weekend was spent building a newer, faster computer for Felicity - it isn’t the hardware building that takes the time, it is loading the software, and the updating it all. No ‘bleeding edge’ stuff here - I’m still using Windows 2000 - but my disk is an original, so there were several hundred megabytes of service packs to get, then the set up and migration of the data from the old computer. Funny to think that downloading all those upgrades can be done relatively quickly now, thanks to broadband connections. It was only 6 years ago that I was downloading a 24 megabyte file over a dial up connection which then went via a satellite link and it took nearly 8 hours! The satellite link itself had less bandwidth than my broadband connection today! I think I had a connection speed of about 26Kb/s, 100 times slower than my broadband connection!

Still, Felicity’s computer is now complete. I then repeated process (which took another day) on the old one and gave it to Vicki to replace her very old and slow one. It is so slow that there is visible lag between moving the mouse and the the movement of the mouse pointer!

This week is a visitor week. Yesterday I received some financial advice about my pension arrangements and general finances. He is totally independant, so no hard sell, and he left me reassured that my financial arrangements are fairly sound.

This morning I had a visit from an old childhood friend, Gill whom, along with David (who has been mentioned in the past) I have known since I was five years old! Tomorrow my sister, niece and nephew are visiting, and on Thursday Elspeth from Leukaemia Care is visiting for a couple of days. She is arriving in the evening as I have the appointment at Guy’s on Thursday morning.

I was reading John’s Blog earlier - he remarked that he hadn’t mentioned his health for a while (although he has made several other interesting observations about health issues in general) and I am in a similar situation - nothing to report. However I did have my first shave for about six or seven weeks at the weekend!

So on that note…. a rousing chorus please of “Onwards and Upwards”!

(Hmm - I feel the need for another pancake…)

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…in which case the crowd must be pretty bored! However thank you for the accolade, and apologies for the delay - I seem to have been very busy this week! However as way of appeasement, here is a photo of the other side of the generator, with the connection panel above it. The plugs at the end of the blue lead plug into the generator and the house, with an RCCB (left) and a padlocked isolator (right). This means that It requires a deliberate act (removing the padlock) to use the cable, so reducing the chances of an accidents with one plug put into a live socket, making the pins at the other end live.

It has been a busy week, with several visitors, mostly local friends. In between visitors I have been making room for the generator in the garage, and sorting out some rubbish. It was a slow process because of my condition, and it still isn’t complete, but I have made a start. The problem is that after a couple of hours of sorting things, I need another two hours rest - still, I console myself with the thought that it is building up my strength. Over the last couple of days I have been building a new computer for Felicity. Building the hardware is the easy and quick bit - the time consuming bit is loading and configuring the software, but it keeps the brain cell(s) ticking over. It is more or less complete now, I just need to copy over the data.

By the time Wednesday arrived, I was ready to conduct a test to see what the generator would power in the house. It passed the acceptance criteria of powering the two fridges, two freezers, central heating and essential lights, and in addition it was also powering (via UPS) two computers. It then went on to power the microwave as well, although by that time it was struggling, and the lights were dimming. In practice the computers wouldn’t be a priority (although after the comments, maybe the blog hosting computer might be…).

We spent Valentine’s Day in, and I had the first steak for some months - delicious - eaten with a red wine and mushroom sauce, side salad and chips! I enjoyed a glass of red wine too - again the first for some months.

I was supposed to go to Guy’s on Thursday, but as nothing much has happened health wise, I postponed it until next Thursday. However we did have a visit from Helen, a MacMillan nurse. This was arranged about 3 weeks ago, when things were looking bleaker, but it was a useful chat. This morning I had another visitor from Andrew, another friend of ours.

Although I said that nothing much is happening on the health front, in the last 24 hours I have noticed that my mouth seems to have become a little more sensitive. We had a mild chilli - so mild that Felicity said she couldn’t taste it, but my mouth could sense it! The same was true with worcester sauce on cheese on toast. I have also noticed that my hands seem to have become very dry. Now that could be because I have been outside a lot, or it could possibly be the start of a hint of GvHd - although it is only two weeks since the DLI, so it is a bit early. I shall be examining my palms daily!

And to finish off, a couple of recent photos of Olivia! I haven’t taken any more video yet, mainly because at the moment she is either sleeping or a bit squawky, but I will do some more at an opportune moment!

So to conclude, thank you for your comments and concern, and … Onwards and Upwards!

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I’ve just realised that it has been a few days since I last posted - just shows that I have been keeping busy! However first things first, and here is a recent picture of Olivia on her playmat! I have also been experimenting with some video, and my first attempt is here. It needs either Windows Media Player or any application that will play .avi files. The feet at the end are NOT Olivia’s!

And the final one of Olivia is this one, with Felicity.

So what have we been doing for the last four days? Well a lot of it has been to do with Felicity’s new venture, Wedding and Event Planning, and the current project which is organising a wedding fair for our church (on a ‘no fee’ basis) to get some experience and publicity. There have been some links on this blog for a while, but the main web site is here.

Although I am getting more active as each day passes, every so often something happens to remind me that I have a long way to go. I am certainly stronger in mind, and I can do more than I could four weeks ago - such as push round the vacuum cleaner, but every so often, something acts as a reminder that I am still physically quite weak. The obvious sign is my weight and physical appearances. The fact thatot a problem, and we carried it between us off the van. Easy because it was at least 12 1/2 is a bit of a give away, and looking at my arms and legs, it is clear how much muscle wasatge there has been. Then trying to run up stairs is a no no, although I can now walk up reasonably quickly, I know that I have done it! And that shouldn’t really be a surprise given that my haemoglobin was only 9.5 at the last blood count - better than the 7 that I was admitted with at Southampton, but still below the normal range of 12-18. (My haemoglobin always was at the low end of the scale though, in the days when I was a blood donor - I think I am severely overdrawn at the blood bank these days) So gently does it!

Another reminder came on Friday. We live in a rural area and our electricity distribution is via overhead cables. These are prone to failure, particularly in bad weather and we we get about two power cuts a year with the last one during the gales in January. With two freezers and two fridges, it is always a bit tense, and so on Wednesday I ordered a generator to act as a stand-by for the house. It is only a small one, about 4KW, and will run off propane or petrol, and provides enough power to run the fridges and freezers, lights and the central heating pump. I have included the photo for the boys to look at - the girls have Olivia!

Anyway, fantastic service from Edge Technology when I ordered it on Wednesday morning. They beat their advertised price, got it from the manufacturer, did the propane conversion, and got it to me within 48 hours! So it arrived on Friday morning in the back of a white van. Now by coincidence, it weighs almost the same as me, so the driver needed a hand. Not a problem, and we carried it between us off the van. Easy because it was eleveated. But once it had been lowered to the ground, could I pick it a couple of inches to move it? Not at all - I just don’t have the upper arm strength. We did eventually move by placing it on wood skids, but it was a bit scary to have another demonstration of physical weakness.

On Saturday afternoon our friend and vicar, Peter popped round, and then it was generator commissioning time. It works well, and the only bit left to do is sort out how it connects to the various appliances.

The big event of the weekend was Olivia staying with us on Saturday night! We decided that it would give Tom and Vicki a break if we looked after Olivia for a night, so they could catch up on their sleep - so she came round yesterday afternoon. She was as good as gold - she slept for three hours at a time between feeds overnight, and settled well. It brought back some memories, and while it was fun for one night, I wouldn’t like to have to do it every night! Parenting is a young person’s game - why some women want to become mothers at the age of 50 plus beats me - you need stamina - lots of stamina!

Now for a quick rant! (taking a leaf out of John’s Blog! This concerns a drug called Erythropoietin - or EPO. EPO is a hormone manufactured by the kidneys, and encourages red blood cell production - just what is needed to combat anaemia! It can now gbe synthesised in the lab, and if injected into patients, stimulates red blood cell production. “Perfect”, you might think. Unfortunately, the not-so-nice people at NICE don’t gree, and have declined to approve it for treating anaemia in cancer patients. True, it isn’t cheap, and many cancer patients become anaemic as a result of their treatment. But let’s look at the alternative, which is a whole blood transfusion. Blood isn’t cheap either. Quite a lot of blood is imported (usually from the USA) which is an expense in its own right. Once bought, it has to be screened, stored (and whole blood has a limited shelf life) and processed. More significantly, there are some conditions for which whole blood is the only possibility, surgery, acute conditions, trauma, to think of three, and using whole blood in ‘non-emergency’ situations when an alternative is available, seems ludicrous.

The blame cannot be laid totally at NICE’s door though, as their remit does not include “Quality of life” issues, and while the administration of EPO would considerably improve the quality of life of anaemic cancer patients, NICE cannot take this into account - hence their verdict of “Not clinically cost effective”.

There are several cancer charities - including LeukaemiaCare - actively campaigning for this to be changed. You could help by supporting them. Here is a link with a little more information about EPO and fatigue in cancer patients.

Right - rant over! I was out in the conservatory this morning, and I spotted this. A tub of spring flowers that has burst into life, and a welcome reminder that spring is round the corner! So on that note, Onwards and Upwards!

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…but enjoyable ones! I think I mentioned in Saturday’s post that my parents were planning to visit, and they arrived on Sunday morning for 3 days, and left today. As always, it was lovely to see you, and thank you for coming down!

And here is a picture of “The Three Stooges”! - my other two visitors on Monday, Neil and Suzanne, both Leukaemia Care colleagues (fellow trainers) and who have recently posted comments on the blog. Both arrived bearing gifts, and no, not grapes! Neil (as a bloke) arrived with a pack of bacon and some sausages (delicious - I had some this morning!) and a loaf of harvest grain bread. Now that used to be my favourite, but since the radiotherapy, when my saliva dried up, I have been wary, and only recently started eating white bread. However, I had some as pork sandwiches on Monday evening - they were delicious! Thank you Neil! Suzanne’s present is equally useful, given Friday’s discovery that I can enjoy beer - the 2007 Good Pub Guide! I was pleased to see that most of the local pubs here are all featured!

We did have some work to do, but after that they stayed for a (late) lunch. Again new discoveries for me! At Christmas, I tend to enjoy the cold meats on boxing day as much as the meal on Christmas day, but this year the mucositis from the first lot of chemo was starting to kick in and I couldn’t really enjoy the meal. However on Monday we had cold meats and salad, which I enjoyed, but the real revelation was being able to enjoy pickles, especially some home pickled pears and some pickled onions. Equally welcome was the enjoyment of cheese and biscuits. But best of all was the convivial company - Neil, Suzanne, my parents and Felicity - a good day.

I’m not sure if I overdid things a bit on Monday, but yesterday I did feel quite tired. We went out for a pub lunch (Good Pub Guide featured!) which was good, but when we got back home, I just fell asleep. As John said in a comment “listen to what your body is telling you”. Sound advice. I must remember that although I am feeling several hundred percent better than three weeks ago, I still have a way to go!

Now, at the risk of becoming an Acai berry bore (who said “too late”?) I have revisited the subject one more time, in an attempt to find the source article. Now I have found the publication, a learned journal of “The American Chemical Society” called “The Journal of Agricultural and Food Chemistry” and although I have the publication date, I cannot find the article (which I couldn’t read anyway as it is a subscription journal) Now I’m sure it is a worthy journal, but I would have been a bit more impressed if it had been published in say “The American Journal of Haematolgy” which reaches a wide cross section of haematologists on both sides of the Atlantic.

However of interest was the University of Florida News letter, which I have linked to here. Naturally they make no claims about any anti-cancer properties in humans (apart from any other reasons, to avoid falling foul of the Federal Drug Agency) but they actually go further and point out that the study, funded by UF sources, was not intended to show whether compounds found in acai berries could prevent leukaemia in people.

“This was only a cell-culture model and we don’t want to give anyone false hope,” Talcott said. “We are encouraged by the findings, however. Compounds that show good activity against cancer cells in a model system are most likely to have beneficial effects in our bodies.”

The newsletter also pointed out that the berries are perishable and have only been available outside Brazil for about 5 years. And on the subject of freshness and quality control, Richard directed me to this link which voices similar concerns - so it isn’t just me!

So the facts are: The freshly picked berries contain the highest levels of anti-oxidants of any berry and that extracts from the pulp have been shown in one laboratory to kill a percentage of unspecified leukaemia cells. Again if you read the article, it points out that grape juice and guava juice also exhibits similar effects. So do I go and buy frozen Acai berry pulp at £12/kilo, and take up loads of freezer space (and probably displace that bottle of Plymouth Gin I am keeping nicely chilled against the day I can enjoy it again) or nip out to Sainsburys and buy a couple of pounds of red skinned grapes (or better still, a product made from them - which contains anti-oxidants and lots of flavinoids) and a couple of guava? Hmm - tricky!

One other thought - Florida’s main source of income, apart from Mickey Mouse and tourism, is the citrus fruit industry, which has taken a bit of a battering recently. Now if the acai palm could be grown in Florida, what a useful bit of marketing that research might be… cynical? moi?

So now to draw a line under the acai berry - worth watching - but treat claims with caution. I suppose at worst it can do no harm (or can it? Grapefruit juice reacts with the anti-rejection drug cyclosporin) but it isn’t cheap, and the quality isn’t guaranteed. I will pull the other post and this text and put it in an ‘about…’ page.

Anyway, it is getting chilly, time to put the heating on, and light the fire! Nothing like an open fire on a cold and frosty day!

Onwards and Upwards!

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And what a difference! It is 3 weeks yesterday since I was discharged from Southampton, and I was having a look at some of the photographs taken just after I came out. I think the one on the left sums up how I looked!

However, the one below on the right, taken this morning, just goes to show what the love of a good woman, and a plentiful supply of bacon sandwiches, can achieve! I must say that I was beginning to think that I was ‘baconed out’, so this morning I had porridge for breakfast, with lots of fruit, but then temptation got the better of me, and I did have a half round of bacon sarnie! (As Oscar Wilde said, “I can resist anything but tempation”)

Yesterday’s Sunday dinner was roast pork, with lots of crackling and the trimmings, and it really hit the spot. My vegetable intake is up too, the pork was accompanied with carrots, sprouts, potatoes, parsnips, broccoli, and sugar snaps, so the return to healthy eating continues!
Meanwhile a bounce on the bathroom scales shows that I have put on another couple of pounds! So onwards and upwards!

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First things first, it has been a while since I last posted a picture of Olivia, so here is another one! It does seem that in most of them she is asleep - but I can say that she is now a pound heavier than when she was born! (I am about 8 lbs heavier than when she was born - her percentage weight gain is much greater than mine!)

I have had a couple of good days. Mark (fellow blogmaster) rang me yesterday to ask if I felt up to going out for a bite to eat. Well I did, so we went to a local pub, where I am delighted to report that my taste buds made a welcome re-aquaintance with beer! It did taste a little more bitter than I expected, but it was very welcome! I then went on to have a bacon, brie and redcurrant baguette! Delicious, although by the end of the second half of the baguette, my saliva was drying out so I couldn’t manage the end crusts, but then the beer helped wash it all down. So an excellent lunch!

Our friend Marian came round in the afternoon and we sat and chatted in the conservatory - it was a lovely sunny afternoon, and it got really toasty. I have to say that as I sat there, I felt good. Yes, diving in Ascension might have been more active, and I do miss the frequent trips to Washington, but given that I am where I am, and things are as they are, life felt pretty good! I did think at the time “It doesn’t get much better than this”. However there is no room for complacency - so get to work my little lymphocytes!

This morning a work colleague, Adrian, popped over for a visit, in his boy’s toy - a Caterham 7! Next time Adrian, I’d like a blast! Adrian has been very supportive to me in the last few years, and this is a chance to publicly say ‘thank you’. Again we sat in the conservatory, which given the clear skies, got really warm again, and reflected on the state of the world! A good morning! While we were chatting, Katie came back from Bournemouth to pick up some stuff and do a few things here - it was good to see her! And tomorrow my parents should be coming down for a visit!

On a more serious note, I have added a new link to the websites list. This a site called Quackwatch and is a non-profit organisation that takes a critical look at some of the extravagant ‘miracle cures’ for cancer and other serious illnesses. When people are diagnosed with a serious condition, they will look for any miracle cure, and sadly there are plenty of charlatans willing to exploit this and take advantage of it. Quackwatch looks at some of these claims, and any supposed science behind them, to give an informed opinion. It is an interesting site, and worth a look.

I must say that looking back over the last 3 weeks (and it is 3 weeks since I went into hospital) it has been an emotional rollercoaster for all the family. I was looking at one of the photographs of me with Olivia just after I was discharged, and I looked positively skeletal. However I think I look a bit better now (although I still have the problem of trousers falling down - sorry - TMI) We have been through the emotional mill - and of course the waiting game for the GvHd will be a bit tedious, but hey - no-one ever claimed things would be easy. Yet again, thank you all for your support - it really has helped us get through the last couple of weeks.

End of serious bit - in time honoured fashion…. Onwards and Upwards!

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But what a difference from last time - no long faces, and new determination in the air! Perhaps that is my perception as my strength returns, but it has been a good day!

We arrived late morning, at the day unit, only to learn that we needed to go to the clinic first, for bloods and to see Linny. My blood counts have improved considerably in the last 10 days - platelets almost back in range, neutrophils back in range, and other indications are good. I am still anaemic - haemoglobin around 9.5 but I hope that will improve too.

We had a chat with Linny, and I signed the consent form, then it was off for a chest X-ray and then to the day unit for the donor lymphocyte infusion (DLI). The chest X-ray result was good and confirmed Linny’s listening - that there is now much less fluid on my lungs than before. (And certainly my breathing at night is much less ‘rattley’ than 10 days ago.)

The DLI was uneventful. The procedure starts with a dose of anti-histamine (Piriton - given as an injection.) This always makes me sleepy - and today was no exception - I just fell asleep while the cells dripped in! After that, I needed to wait a while to ensure that there were no adverse reactions, and then we left to come home. So now it is up to the lymphocytes - get to work my beauties! It will a take a while before any effects are noticed though - as much as 6 weeks, so we are in a waiting game - I’m afraid I’m going to have to ask you to keep things crossed again!

I also saw Mark today. You may remember him as a fellow patient who had his transplant at the same time as me. He has developed lumps on his neck, and was being admitted to Blundell Ward (ENT - where I was last September) for a biopsy. Mark says that he looks at the blog nearly every day - so Mark, I send you my best wishes, as I’m sure everyone else will too - stick with it and think positive, we are all with you.

And now for a few comments about my nutrition (oh no - not more, I hear you say!)

There has been a bit of banter about my diet and nutrition, but looking back over the last couple of weeks, there has been a sort of logic to my eating! When I came out of hospital, I was certainly undernourished, and the muscle wastage was quite scary. My stomach had shrunk, and the anti-biotics had interfered with my digestive tract anyway, destroying some of the useful bacteria that live there. Although I weighed 10 stone (the same as today) much of that was water where I had been re-hydrated. So I suppose concentrating on the protein (lots of bacon and eggs) made sense to get the amino acids to build up my own protein. I certainly couldn’t eat complex carbohydrates while my saliva production was low (saliva contains enzymes that start the breakdown process) but the simple carbohydrates like sugar gave me much needed energy.

Now as my digestive system is recovering (and my sense of smell is returning) I am managing more complex carbohydrates (bread, potato) and my taste for vegetables is returning. Certainly putting on 7 lbs of body mass is good, and my improved condition (wet nose?) was remarked upon today! I was being fitted up for an appointment with the dietician, but when I explained what I have been eating, I think that may not happen. Certainly the double scrambled egg and two rashers of bacon on a piece of toast made a great start to today!

And this brings me to another nutritional subject, Acai berries. Liz alerted to me to these berries (there is a link on the left - if you are using Internet Explorer, you will have to scroll down, if you have upgraded to Firefox or Opera, it will be available on the right) a few months ago, and I have been doing a bit of research into their properties.

Acai berries are native to Brazil, and have dark purple skins. Like other dark skinned berries, these have strong anti-oxidant properties, and acai berries are reputed to contain the most anti-oxidant of any berry. Anti-oxidants are good in that they are believed to mop up free oxygen radicals in the body, which is believed to contribute towards ageing.

However, the most interesting fact is that in laboratory studies at the University of Florida, the extract has been shown to have a an effect against cancer cells. Now it is a long way from a demonstration in a laboratory to a viable drug, and as far as I can tell, the results have not been repeated at any other laboratory. That isn’t to say that the effect isn’t genuine - lots of plant products exhibit pharmacological effects - Vincristine, part of the R-CHOP protocol, is synthesised from the Madagascan Periwinkle plant. Salycilic acid, found in some species of willow, is a powerful anti-inflammatory drug, which we know as aspirin, and if you ate enough apricot stone kernels, you would make yourself seriously ill with cyanide poisoning - they are pharmacologically active!

So there may be a potential benefit from eating acai berries. However, that brings two difficulties. If the berries are pharmacologically active, is it possible that they could interfere with the conventional treatments, either enhancing or reducing the effect? Certainly some other natural remedies, such as Echinacea and St John’s wort are not recommended with conventional treatment because studies have shown that there is an interference. However these studies don’t exist for acai berries.

The second concern is quality control. There are three main suppliers in the UK, each producing a range of acai berry products. One produces a juice, but there is a comment that the juice loses its anti-oxidant properties very quickly. Another produces a freeze dried extract (at £15/50 grams, or £135/lb!) for which they make generous claims, while yet another product is frozen pulp (at about £63 for 5Kg). The problem is that how do I know I am getting what I am ordering? What is the quality control? All I have are the claims of the companies, that are - as far as I can tell - unregulated. I could be buying cranberry pulp for all I know!

So for the moment I will watch the acai berry with interest, and there might come a time when I will try it - but that time is not now. But thank you Liz for bringing it to my attention!

So a long post - but I will end on the usual sign out - “Onwards and Upwards”

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