A melting pot of news…

So I thought I’d post again to update you on everything I didn’t manage to fit into Monday’s post (which is quite a lot!).

Firstly then, an update on how I am feeling – not too bad thanks. The radiotherapy certainly seems to have had a positive impact on the brain situation – I’ve not really had any head aches or pressure since the treatment. I have reduced my steroids to half the original dose, and stopped taking codeine about a week ago (leaving me just taking paracetamol in terms of pain relief for my back). Cutting down on the steroids has had a positive impact in terms of reducing my appetite (back down from six meals a day to a paltry three!), and reduced considerably the profuse sweating (a bonus for everyone who has to come near me). The plan is I gradually keep reducing the dose until, hopefully, IΒ can come off them entirely.

Unfortunately I still have the excess weight gained during my rabid, non-stop eating phase while on the higher dose. I have generally put on weight, but another effect of the steroids is that it tends to collect in certain areas – for example round the cheeks and neck, which means I now have an almost perfectly spherical face. I have also developed a ‘hump’ on the back of the neck. This is all part of ‘Cushing’s syndrome’, which occurs as a result of prolonged excessive exposure to the hormone cortisol (i.e. the steroids). I didn’t realise I had a hump, until reading aloud the symptoms of Cushing’s syndrome from Wikipedia – at which point Sally confirmed that, yes, indeed I did have a little camel hump. Only unlike for a camel it serves no useful purpose for me, not even as a small makeshift pillow for hospital waiting rooms.

In addition to my round face, I have lost my hair due to the radiotherapy. They said it might fall out, or thin, or do nothing (covering all bases there then). It started to fall out Tuesday last week – thinking it might just thin a bit, I tried to just get all the loose hair out in the shower. Putting wax in it after my shower resulted in very hairy palms. Wednesday I did the same, and tried again on Thursday – only that time there wasn’t an end to the loose hair, it didn’t stop coming out. As we were off to the Marsden I had to make the best of what was left – but I did look a bit mangy, complete with bald patches that merged with other bald patches throughout the day. So Friday morning we went at it with clippers and a razor, and took the lot off.

I am quite enjoying my new look – partly due to novelty value (probably not something I would have tried otherwise), and partly because I now have more reason to make use of a fine and varied collection of hats (not so much to hide it, more to protect my newly exposed scalp from the newly exposed sun). I do still find myself slapping shampoo on my head in the shower, before remembering that it’s no longer necessary.

The shaved head in conjunction with the round face does mean I now bear a striking likeness to the full moon. For a small fee I am currently available for any lunar-themed kids parties or events.

The vision situation hasn’t improved, and I managed (with some effort!) to get the doctors to admit that it probably now won’t. They said the steroids might help it – but once I pointed out that I have been on high dose steroids for the best part of a month, with no improvement, they admitted it was unlikely to return. Which isn’t great, but in truth if I get out of this with slightly impaired vision, I’d take that in an instant. I’m starting to learn to compensate for it and so it has been bothering me less of late.

The radiotherapy did take it out of me a bit last week – although not to the degree of ‘withering wreck’ (hopefully I am safe from having to eat those words). I didn’t feel too bad, but there was an underlying level of tiredness. This week my energy levels seem closer to normal, which is reassuring. The doctors also seemed sure that any reduced energy was due to the treatment, rather than anything more sinister.

And finally my back seems to be fairly stable at the moment, perhaps having even improved recently. I still can’t stand still in one place for a prolonged period without getting pains down the legs, but in terms of mobility I have been fairly active over the last few days, and it has given me very little grief.

So that’s enough about my physical state – what have I been up to over the last couple of weeks instead of blogging?

Well Monday last week I finally managed to get round to arranging the photography lesson (or to be more specific, ‘processing photos on Adobe Lightroom’ lesson) that I was forced to cancel on that fateful day when my head nearly exploded. A big thank you to John at White Light Photography (the same guys who did our beach photo shoot) who came round and spent two hours with me showing me how to organise and process my photos.

Armed with my newly acquired knowledge, I have been taking time to sift through my photos from the last year or so, and pick out and work on my favourites. Rather than just leave them on the computer for no-one to see, I’ve decided to set up a page to host them on Smugmug – if you want to have a look, I have added a link into the sidebar to the right of the blog, or click here > seebensphotos.smugmug.com

It has been great to finally take some time to make something of these photos. They’ve been taken over the last year since I bought the camera, but they have just been sitting on the computer doing nothing, with me never having the time to play with them or try and make the most of them. I still consider myself very much a beginner photography wise, but I am enjoying the experience of learning.

We were also able to arrange for my Dad to visit last week – which was very enjoyable. We managed to coordinate it so he could come along and see Saskia swimming – she was on good swimming form too, less focused on drinking the pool water this time, more focused on being good at swimming.

On the subject of Saskia, she has finally cracked the art of crawling – first managing it a couple of weeks ago. She’s not been off everywhere as we perhaps expected – but she is now able to deliberately move around when she wants to. She will purposefully move across her play mat when she decides she wants to get to something over the other side for example (sounds like there is some kind of ‘why did Saskia cross the play mat’ joke in there somewhere – I’ll work on that for my next post). Unfortunately for Pickle this means that placing himself just beyond her reach is no longer sufficient to avoid clumps of his hair being tugged – he now has to learn to use altitude to his advantage if he wants to sleep without keeping one eye open.

And the news I know you have all been waiting for – Saskia’s sunglasses have arrived! Given the rubbish weather, today is the first real opportunity we have had to try them outdoors – and as predicted it might take a bit of getting used to before she stops trying to take them off. But here is a picture from yesterday of her doing ‘a Bono’ and inappropriately sporting sunglasses indoors – I think you will all agree she looks pretty cool (far cooler than Bono anyway).

Cooler than Bono (and actually better at writing songs)

The other big focus of the last week or so has been researching and working on our all round, integrative treatment approach. Obviously the hospitals and doctors take care of the ‘conventional’ treatment (chemotherapy, radiotherapy, pain relief, etc) – but that is just one aspect of our approach to tackling this. We have been working toward an all round plan for some time, but it’s been slow progress given hospital appointments and just trying to stay on top of every day life given all that’s going on (I never realised how much admin having cancer can actually involve!).

But we seem to have finally made a breakthrough – both in terms of research avenues bearing fruit, and actually making the changes to our lifestyle. As mentioned in my last post, the news last week has also given us the kick up the arse we needed to actually take the difficult decisions that we need to.

You might have noticed that I am saying ‘we’ and not just ‘I’. That’s because Sally is being amazing and joining me in making many of these lifestyle changes, recognising that (particularly where diet is concerned) there’s no chance of me eating a bunch of cold salad if she is sat in front of me with lovely sausages and mash.

So what are we doing? I won’t go into all the details, but here’s the general idea…

Exercise

Every day now after breakfast I am doing two brisk laps of the recreation ground behind our house, which according to my phone is 2.5km / 1.6m – usually taking me half an hour. The morning is non-negotiable – but if I get time (depending on whatever else we are doing) I am aiming to do the same in the afternoon. So far I’ve managed both mornings and afternoons the last few days. After a period of inactivity given the brain situation it’s nice to get off the sofa and get some exercise. It really does make me feel better – obviously it’s good for me physically, but also mentally in the sense that I still feel I can get up and walk three odd miles in a day, without being hindered by my back, the disease, treatments, etc. That feeling helps contribute to the whole ‘keeping positive’ thought processes.

——————————–

Diet

So we are making some big changes to our diet – but sensible changes (we’re not going down the route of living on nothing but wheatgrass!). Sally has been incredible, throwing herself into online research and books about cancer and nutrition (after my CT scan Thursday she busied herself in the nutrition and food section of Waterstones, while I had a forty-five minute nap in one of their comfy armchairs – I did fully expect to get ejected from the store, given that I looked like a moon-faced hobo with half a head of hair who had just gone in for a sleep, but I was left alone). She has identified foods for us to try and reduce or eliminate, and foods for us to try and increase our intake of. Again, I’m not going to go into massive detail (because it’s probably really quite dull for the rest of you) – but essentially what we’re doing is this;

  • Dramatically increase intake of fruit and particularly veg, to eight portions a day minimum (especially raw stuff – salads, etc).
  • Incorporate juicing into our diet – by this I don’t mean fruit juices from Tesco, I mean buying a juicer and juicing raw fruit and veg as a way of getting concentrated nutrients into our diet.
  • Reduce red meat (now only allowed as a treat when eating out).
  • Reduce animal proteins in general (but not eliminate entirely – like I said, sensible approach!).
  • Dramatically reducing sugary treats and snacks (chocolate, biscuits, ice cream. etc).
  • No alcohol – this one I am doing alone. I haven’t drunk for about two months, and at a time like this I just don’t feel like it. So watching Sally have the odd glass of wine is no problem for me.

——————————–

Mind

Basically this involves reducing stress and trying to incorporate relaxation techniques and times into our daily routine. So we’re being careful about over committing ourselves, simplifying things like how we managing our finances, and have started to incorporate meditation daily.

It has to be said, meditation is far harder than I thought it might be – I always thought it was easy to switch my brain off (generally if I sit still for more than ten minutes I fall asleep). But it has been proving far harder to empty my brain of thoughts than I expected. Even so, I think it is still beneficial to just stop for a period each day, and take some time to just do nothing – and as we get better at it the benefits should only increase.

This section also includes positive thinking, visualisation, and some other areas we haven’t yet explored – such as hypnotherapy, psychotherapy, and music therapy. Of those three I’m not sure if hypnotherapy is for me. Psychotherapy possibly – it has been offered, but so far this blog has pretty much been my psychotherapy, so I haven’t gone for it. That’s not to say at some point in the future I won’t. Music therapy I think I could definitely go for, being a big music fan. I used to listen to music in the car, but now I can’t drive that’s not happening anymore. For the first time in a long time I am listening to music as I type this – Guns n’ Roses. Right now I am thinking that Guns n’ Roses should definitely form a much larger part of my treatment program going forward (old Guns n’ Roses, not so much new Guns n’ Roses).

——————————–

Herbs / Supplements

So there are a number of substances that have shown possible promise in fighting melanoma – sometimes in human trials, other times with lab grown cancer cells or animal trials – and many of these are available as nutritional supplements. Don’t get me wrong, we don’t expect any of these to be a sudden miracle cure, and one could spend a fortune if one wanted to on everything that had at some point been rumoured to have a benefit. But some well placed and targeted research has thrown up a few things of interest.

An important question is whether or not to take these while undergoing the conventional medical treatments, should they cause any interactions or interfere with the action of the chemotherapy or radiotherapy. So I haven’t been taking anything so far – but now I am in a period of no conventional treatment, this avenue does become an option.

——————————–

So there we go – that’s an insight into our integrative approach. It is going to entail some difficult choices – personally the diet aspect is going to be the hardest for me. I have asked numerous doctors about diet, and the answer I generally get is that I should go home, and eat what I want (although with an emphasis towards a balanced diet). Which always leaves me wondering whether I really should eat that Easter egg, or leave it well alone. On the one hand you have the doctors telling you diet won’t make a difference, on the other hand there seems to be plenty of credible evidence that diet can help in your fight.

So who to believe? I’d like to believe the doctors, and just eat pizza every night followed by Easter eggs for dessert – but when the stakes are this high, I think it makes sense to hedge your bets on the eating healthily side. Let’s face it, as long as we are sensible and don’t go on any mad ‘fad’ diets, it’s not going to do me any harm – and if it does help will have been well worth it.

Right, that’s about it for today I think – thanks for reading.

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9 Comments

Filed under Battle with Melanoma, Other News, Saskia News

9 responses to “A melting pot of news…

  1. Simon Gallear

    Hi Ben,
    I’ve been reading your blog since mum first mentioned it to me, but have failed to write anything until now…
    Firstly, a huge thank you to you and Sally. It is truly inspiring to read how you a dealing with this and I am very grateful that you are sharing this with everyone… In doing so, you answer so many questions which people either don’t know how or who to ask.

    And on that note, I am recommending ‘The Enemy’ as reading to everyone I know and love. That alone, is worth so much, and there is so much in it which people need to know.

    I think your approach to diet etc sounds like a very good one. I used to want to be doctor and still marvel and value their contribution. But there is SO much that our empirical ‘western’ mentality doesn’t grasp. I can’t begin to argue how homeopathy (for example) works and having done A-levels chemistry, it seems crazy, but it gets results. Hell, it got results for my parents’ dog, who was seriously ill until a last ditch attempt they tried it. Result… dog back to normal (and surely no one could argue the placebo effect in a dog; especially a poodle).

    So, keep fighting, research things, and think positive, and know that you have a huge amount of support from friends, family, and from the many people who read this.

    Simon (Gallear)

  2. Janine

    Another brilliant blog Ben. You guys have really done your research properly; we hope that it helps and sees you feeling better. If you were to consider hypnotherapy I have a friend who is qualified who I could put you in touch with if you wish. Dan has tried it and I’m sure he would share his views. I also might have a music therapy contact locally and could do some digging to locate him if you are interested. I think you would get on with him. It was fantastic to see you all today and witness first hand that you have bouced back so well. I don’t think you look like the moon, you looked lovely to me and I think you wear the shaved looked very well πŸ™‚ I’d also like to let your followers know what a great impact you have had on all of us today with the babies and us being extra careful out in the sunshine. As the Aussies say ‘slip, slop, slap’! Love Janine x x

  3. elisamorse

    Hi Ben
    Great to hear things are looking up. Well done saskia too, on her newly acquired crawling skills..time to move breakables up a level!
    I’m pretty sure we have a redundant but good juicer knocking about if you want it?
    Fab pics too, you’ll be doing weddings next! πŸ˜‰

  4. Tanya

    Hey Ben, Great to see some of your photos – they’re really good, look professional to me! If I ever get round to setting up my own Personal Training website I want you to do the piccies!
    Love to you all.
    x

  5. Dad

    Hi Ben and Sally
    Well Dad really enjoyed visiting and seeing you all. Just have to admire you both for your determination and also such consideration for each other; so many could take a leaf out of your book. As for Saskia well she is absolutely gorgeous, now thats words I don’t use that often but she is a credit to you both. Love the glasses! x

  6. june and colin

    GOOD evening OR Good Morning Big Ben..
    I am very happy to hear your tackling the diet.. I hope you dont mind, but i would like to add a few things that i have learned about diet and being Gluten Free now for about 2 years :)… Number one.My terrible back aches have gone away completely because Gluten brings on inflamation big time. My lovely wife who had trouble standing up because her hip was in so much pain, has followed me on this diet and its gone away…:( Everyone in the world cannot tolerate Gluten and there are 300 hundred different symptoms!!even a little Headache is one!! most people dont even know this info…
    Second, raw veg is better than Fruit! Fruit is full of sugar! did you know blue berrys are very high in acid! I am going to give you the address and phone number of a special book that was given to me.. Its called, ALKALIZE or DIE! its written by Dr. Theodore A. Baroody. The ordering and contact info is, Holographic Health Press 119 Pigeon St. Waynesville, NC 28786 phone1-800-566-1522 did you know Cancer has trouble surviving in an Alkaline body. Every morning i boil water and let is cool down and put a fresh lemon in it…Full of vit C and yes it is Alkaline. Did you know the only nut to be Alkaline is the almond…there is so much info in this book and yes it has changed my life for the better and my wife too.:) Do not eat Dairy!! I sure hope your not thinking im some kind of Californian nut , but we are so far ahead of most and i really wanted to share this info with you.:)))
    Also, too reduce stress , try Yoga.. You know i own a sportswear business, well I wholesale to all the YOGA stores and gyms..I have also attended many Yoga conventions like Body, Mind And spirit etc etc..So let me tell you buddy, Yoga is about the best thing you can do, to relax, be positive, and get rid of stress and center your life.:) Did you know that Marin County where i live was Named the Healthiest in California! we have organic everything here! http://latimesblogs.latimes.com/lanow/2011/03/marin-county-named-healthiest-in-california-in-new-study.html
    Did you know that Prince Charles and his wife Camilla came to visit Northern California too find out about Organic farming in a place called Bolinas ( which i surf all the time)! it was about 6 years ago:)http://query.nytimes.com/gst/fullpage.html?
    res=980CEED6173EF936A35752C1A9639C8B63

    http://www.ktvu.com/news/news/prince-charles-tours-point-reyes-station/nKdcw/<&lt; check this out…:)
    also, one last thing….Did you know Guns and Roses are from California! i figured you probably already knew that…..But did you know, they are one of my favorite groups too!!! πŸ™‚
    xxxx
    Ok your over seas connection is going to get a cup of green tea.:)
    xxxx

  7. Claire & Phil

    HI Ben, so glad you’re not feeling too bad and again are forging ahead in a really positive way. Sally is just amazing with what she’s doing with your diet and it’s great that the park is so near for you to exercise which has such a positive effect on the mind and body. If you needed anything else to lift your spirits you only have to look at Saskia in those shades – she must be the coolest kid in town!! Much love as always xxxx

  8. Rachel Stead

    Hi Ben, interesting that you’re talking about juicing…we found our Kenwood Chef juicer, very dusty in the back of the cupboard today & since the kids have come home from school, we’ve had great fun experimenting! So far:
    -banana & apple in yoghurt smoothie (ok, less yoghurt next time)
    -papaya & pink grapefruit on crushed ice (yum!)
    -satsuma juice
    -pear, peach & lime (double yum!)
    My top tip is Macnades & their ‘pound bags’ – been back twice today already – makes it a cheap way of experimenting whilst getting a delicious, nutritional drink inside you. Anyway, have fun playing, Rachel xx

  9. Vic x

    This is it Ben, You’ll be fine from now on in. Happy living!!!! More love than ever this time as I feel you have chosen the only way to live joyfully. Thank you for your deep wisdom my friend, you are on the right path, enjoy the walk…or jog if you’re feeling particularly spritely. Huge hugs Vic xxxx Saskia, an angel!!

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