Category Archives: Saskia News

Saskia news and photos

A year later

Hello there.

It’s 3rd January 2014 – exactly a year since our beloved Ben died.

To mark the day, and to celebrate Ben’s legacy – his excellent blog, I thought I would add a new post about what this past year has held for me, Saskia and our family.

Life for Saskia and I

It’s still hard to believe that Ben has really gone and that I won’t ever again be able to squeeze his hand or give him a hug or mess up his hair like I used to. I can imagine him vividly though and often do – and I smile to myself and to my ‘spirit of Ben’ which is always with me.

Surprisingly for me, this year has contained more joy than sadness. I expected the weight of grief to come hard, to feel pain and sadness in great waves – for weeks, for months, for years. But instead it’s been a happy year – sad at times but mostly happy. It’s a fact that’s been been hard to come to terms with and I worried about it a lot at the beginning, feeling guilty that I wasn’t suffering as much as I should be. After a lot of reflection, and talking to good friends, and some counselling too, I’ve come to accept that it’s OK to be a happy widow – enough to ‘confess’ it in public like this, though the guilt gremlin does still haunt me from time to time.

Above all else, the reason for my happiness is Saskia. She is such a bundle of absolute joy, and with her around there simply isn’t space or time to get down and feel miserable. I aim to be a happy and playful parent for her sake, and she makes that job so easy! Here’s a fabulous picture that for me sums up the fun and adventure that life with Saskia has been this year…

Saskia and I loving life - Red Sea, Oct 2013

Saskia and I loving life – Red Sea, Oct 2013

If I imagine life without Sas then it really would have been a very bleak year indeed. I am so lucky to have her. And not just her…my friends and family have been AMAZING in their support and generosity.

Saskia’s own journey as her mind develops and little by little she has little shifts in understanding about what has happened to her Daddy is both moving and fascinating. She was only 16 months old when Ben died and too young to understand – this year she has thrived and showed no signs of suffering thankfully. Sadness may come for her in time as her understanding grows, but for now she’s doing fine.

My own blog – ‘These Widows Shoes’

Inspired by Ben, I decided back in May to have a stab at writing my own blog about life as a widow. For a long time I kept it to myself and just a few friends, but recently I’ve been brave and invited Facebook friends to view it – and now all of you reading this too. I’d love you to have a look and pass it on to your friends if you like it. It’s mostly reflections on widowhood, with a lot about Saskia’s journey too. It’s called ‘These Widow’s Shoes’ and you can visit it by clicking here.

Widows shoes.png

‘These Widow’s Shoes’ Home Page

‘Me and My Unwelcome Visitors’ Lives On

Ben’s blog still gets lots of visits every day. It has been visited from 86 countries to date and has had over 32,000 hits. One thing that I am delighted about is that it has gone right up the Google rankings, appearing second in the list for the search terms ‘melanoma blog’ whereas a year ago it would have been nowhere to be seen. I’ve been tweaking it here and there, and getting other sites to list it (see this one for example) and it seems to be working! From time to time I get comments on there from people whose lives have been touched by melanoma and who have found reading Ben’s words a help. What an amazing achievement Benj – I’m so proud of you!

One of the changes I’ve made to the blog is the addition of a Twitter feed (see the top right column of the home page). Under the username @melanomablogger, I’ve been using it partly to publicise the blog, but also more recently to share information and raise awareness about melanoma. This was something that Ben had started to do himself with his The Enemy page and I’m sure if he’d survived he’d be busy doing this himself. If you’re into the Twitter thing, please follow me and help me spread the message – if you’re not, maybe this is the moment!

A major plan involving Ben’s blog that I am sorry to say I’ve been very slow at getting on with is getting it published in book form. I got started on this back in the summer but somehow I got a bit overwhelmed with it and had to take a step back. But a new year has brought new resolve – I will get it done (with the help of some family and friends who have offered various services) and hopefully in the not too distant future I’ll be able to announce it’s publication on here and you can all order your copy!

Celebrating Ben’s Life

Since the funeral I have been determined to turn negatives into positives whenever I can. One example of this was in June when we had a ‘Raising a Pint to Ben’ get together at the Wimborne Folk Festival. Ben loved the festival – it was a part of his youth and an event that he proudly introduced me to when we first started going out together. I’d already decided to go with a few friends from Kent for my birthday when I realised we should use the event as a good excuse to bring together Ben’s family (young and old) and friends (old and new) to remember and celebrate his life. It was a gorgeous sunny day – Ben’s heart would have swelled with love and pride to see us all there together. Here we all are….

Family, young and old. Friends, new and old. All raising a glass to Ben at the Wimborne Folk Festival - June 2013

Raising a pint to Ben at the Wimborne Folk Festival – June 2013

It was Ben himself who set the precedent for positivity, as his blog testifies and as was reiterated many times during the funeral service. It has moved and inspired a great many people – many of whom barely knew Ben in his lifetime. One such person was my very good friend Pete Gold, who I met at university and then shared a house in London with for a couple of years.  I was really touched that he made the effort to come to the funeral (as did many of my old friends), despite the fact that I’d hardly seen him for years. It was lovely to catch up briefly, but again the months went by without seeing each other and it wasn’t until October that we finally managed to organise a get together. Not long before we were due to set off home after a weekend visiting Pete’s family, Pete shyly informed me that he’d composed a song in memory of Ben and would I like to hear it. I was so moved that he’d done such a thing that I think I was weeping before he even had a chance to play it to me! The music and words are just stunning – it’s called ‘Live Forever’ and is a 4-part choral piece (forgive me if I’ve described that crudely Pete, I’ve no idea if that’s the proper terminology!). Pete has recorded it with his local choir, The Rickmansworth Players Choir, and we are planning to get together early this year to somehow release the recording as a single so that it is available to buy, with the proceeds going to charity. So watch this space – I’ll let you know via the blog and Facebook when it’s available.

The Burial Ground

The beautiful Woodland Burial Ground where Ben is buried has played an important part in our lives this year. For me it has become a pilgrimage that I make every few months when I am visiting Ben’s family in Wiltshire and Dorset. From Ben’s Mum’s house, where I usually stay, it’s a 45 minute drive over sweeping hills and fields, up and down lonely narrow lanes, through sun-dappled woods – it’s just lovely. It’s one of the rare opportunities for me to be alone with my thoughts and it’s such a perfect way to frame my visits to see Ben. After spending some time at Ben’s grave I like to walk around the site, finding a bench at the top of the hill where I can look down over the burial ground, across to The Horns pub and the countryside beyond. I often take my journal and spend an hour or so reflecting and ‘chatting’ to myself and to Ben. It’s bliss – I feel so close to him there and so full of love and gratitude that he came into my life.

The burial ground and the Horns Pub have become a meeting place for the family as a whole. His aunties who live nearby visit weekly and keep the grave looking lovely, always covered in fresh flowers. Various family members meet there, and when Saskia and I are visiting we often get the family together for a meal and to visit Ben…


Arranging and planting flowers in the sunshine – September 2013

During the year we decided that we wanted a rowan tree to be planted on Ben’s grave. It’s a colorful tree, with blossom in the spring, berries in the summer and red leaves in the autumn. We hope it’ll be home to lots of wildlife and will offer us a lot of comfort when we visit during the seasons. The tree is very young and obviously bare now in the winter…


But in years to come it will hopefully be as stunning as this one…

A mature Rowan tree

A mature Rowan tree

We also finally found the right words to put on the plaque, which was put up in October…


The plaque which stands just in front of Ben’s tree

The quotation is from a Red Hot Chilli Peppers song, ‘Venice Queen’. I was stumped for ages as to a quote that would be personal to Ben and yet also fitting for this context. After hoping that it would just ‘come to me’ for months, I realised it wasn’t going to happen I sat down to start wading through Ben’s albums to find the right words. Ben must have been helping out somehow because the first album I looked at – ‘By the Way’ by the Chilli Peppers, a really important album for Ben, gave me what I was looking for. Besides the fact that Ben loved the sea, and surfing, the deeper sentiment here couldn’t be more perfect. Every day Ben influences me in positive ways, but the waves have travelled so much further – across the world via his blog, and into beautiful, timeless notes through Pete’s music.

You can read the rest of the ‘Venice Queen’ lyrics and watch a live version of the song by clicking here (our bit comes in at 6:29)


The waves that Ben made have also inspired many people to raise money for different charities related to Ben’s story. At the beginning of the year my brother David did the Tough Guy challenge raising £679 for Pilgrims Hospices and £840 for Cancer Research UK.

Dave doing his 'Tough Guy' pose

Dave doing his ‘Tough Guy’ pose – January 2013

In February Ben’s school friend Tanya, and her friend Sofia completed their 24 hour spin challenge – they covered the distance from their gym in Bournemouth to Pilgrims Hospice in Kent and back again – twice! They raised £1,269 for Pilgrims Hospices.

Tanya and Sofia spinning their way from Canterbury to Bournemouth and back in 24 hours

Tanya and Sofia spinning their way from Canterbury to Bournemouth and back (twice!) in 24 hours

Then in June Ben’s Mum, Delia, and two aunties, Claire and Maria, did the Race for Life, jogging (and a little bit of walking!) 5k along Bournemouth beach. They raised £461 for Cancer Research UK.

Maria, Delia and Claire looking over the sea from Bournemouth Pier after finishing the Race for Life - June 2013

Maria, Delia and Claire looking over the sea from Bournemouth Pier after finishing the Race for Life – June 2013

Ben’s cousin Michaela also did the Race for Life, running 10k in London, and raising £145 for Cancer Research UK.

Michaela and Georgina at Hyde Park after the Race for Life 10k - July 2013

Michaela and Georgina at Hyde Park after the Race for Life 10k – July 2013

In August, a friend of Ben’s from university, Kathryn, did the 100 mile London-Surrey cycle ride, raising an amazing £1,755 for Cancer Research UK.

Kathryn Daniels

Kathryn after completing the 100k London-Surrey bike ride

Also in August, Ben’s Grandad Ken sadly died. Ben’s Dad kindly suggested that the donations at the funeral be in aid of Pilgrims Hospices – we raised another £369 for this brilliant charity thanks to Ken’s friends and family.

Ken Edge

Kenneth John Edge

Then in September, on what would have been Ben and I’s 5th wedding anniversary, a team of Ben’s friends and I did a 10k Moonlight Walk along the Kent coast in aid of Pilgrims Hospices – together we raised £3,272!

The Moonlight Walkers team - Sept 2013

The Moonlight Walkers team – Sept 2013

Finally, to round the year off my ever-creative colleague from English in Action, Jacqui Miller, raised £75 for Pilgrims Hospices by selling Magic Reindeer Food!

Quite an amazing catalogue of achievement hey? And we’re not stopping there! Our next fundraising efforts will be this month, in collaboration with Ben’s favourite local pub, The Phoenix in Faversham. If you live anywhere near us, and fancy a pub quiz please join us on the 6th and/or 20th of January to show off your general knowledge and help raise money for Pilgrims Hospices.

Ben’s Facebook page

One last thing is that I just wanted to remind you all is that Ben’s Facebook page is still there for any of us to post thoughts, memories, photos or messages. Today would be a good day to post something if you feel inspired. Unfortunately this is only accessible to people who were already FB friends with Ben, although anyone can post comments on the blog at any time, or on my FB page if you like.

So there we are. I miss him so very much, and yet I feel he was such a force for good in my life that even though he’s gone he still makes me happy. I wish every one a very happy and healthy 2014!!


Filed under Other News, Saskia News

Saskia Digest – September Edition

Enjoying a good book

So here it is, my much promised post about Saskia. Looking back the last time I wrote a Saskia post was in May – that time seems to have gone so quickly, and she has changed so much [insert other typical parent clichés here as you please].

Last time I wrote she had just cracked the art of crawling. Well she has now progressed to almost walking, via ‘bear walking’ (on hands and feet) and ‘cruising’ (standing upright but supporting herself against people, furniture, etc). Cruising was followed by unaided standing, and in the last week or so this has progressed to her first tentative steps. She is still a bit unstable with the walking, so crawling, bear walking and cruising are still the primary modes of travel – but she is getting more confident each day.

Being able to stand has brought a whole new realm of the house within her reach – bottom shelves, low tables, CD racks, etc. Posting things through the cat flap seems to be a favoured activity – usually potatoes and shoes. As you can see from the photo below, she also takes particular delight in removing my CDs from their nicely alphabetised by artist, and chronologically within artist, filing system (I am a fun person to be around, honest).

So we have had to do some child-proofing of the house – this has ranged from the traditional (stair gates) to the improvised (a wooden board strapped to the front one of my CD racks with car roofrack straps – it might not be pretty, but it certainly is effective!).

Wrecking Daddy’s nicely alphabetised CDs

That’s actually Marilyn Manson she is reaching for in the picture above – showing early signs of inheriting her Daddy’s good taste (must keep her away from Mummy’s horrendous Adele and Amy Winehouse CDs in case she gets indoctrinated into the world of rubbish music).

On the subject of music, she has begun to show off her dancing skills. She has a little ride-on car, which plays various tunes when you press the buttons on the dashboard (kiddy tunes, not Marilyn Manson). She likes to stand next to the car, press one of the buttons to start a tune, and then ‘dance’ next to it. Her dancing mainly involves shaking her hips back and forth, and smiling gleefully at anyone nearby.

It’s very cute to watch, and fascinating that she seems to have this inbuilt desire to dance when she hears music. As far as we can tell she’s not learnt this from anyone else (her Daddy isn’t much of a dancer, and we haven’t taken her clubbing yet), which suggests it’s an innate characteristic present from birth. Interesting, in terms of nature and nurture.

On the swings at the park

Moving on, she has also become a regular at the local play park – we’re very lucky to have the recreation ground right behind our house, so there are plenty of opportunities for park trips. She is a brave little thing, and will go off of her own accord, crawling or cruising round the park, interacting with the various park ‘furniture’, and watching the other children. Whilst still a bit small for most of the activities, she particularly enjoys the swings and the slide.

We recently had an afternoon out at Whitstable Castle, which has a great play park – including a ‘big’ slide which she very much enjoyed throwing herself down. Sally would sit her at the top and she soon got the idea of shuffling herself off to launch her descent – while I knelt at the bottom, repeatedly messing up trying to focus the camera on a fast moving baby (you can see my best effort below).


She has also recently started using her first word – that being ‘uh-oh’. This seems to translate into grown up as ‘oh dear, I appear to have dropped s0mething’, as an item of food or her water bottle goes over the side of the high chair. When at her very cutest she says it with pursed lips, while looking back and forth between you and the dropped item.

However, ‘uh-oh’ seems to be a very versatile phrase, able to be used preemptively as well as after the event – translated into grown up as ‘oh dear, I am about to drop something’. It’s highly amusing to watch her look at you, say ‘uh-oh’, drop something, then look at you as if it were an accident. She’s going to need to work on her timing a bit if she expects us to believe it was unintentional!

Sharing the driving on the way back from the Lake District

She still goes swimming, although we take her to the local pool these days for ‘freestyle’ swimming, rather than the structured class at Whitstable that we used to go to. We found that she wasn’t really enjoying the Whitstable class – it consisted of a number of activities, two of which involved being dunked under the water, which always seemed to upset her. I understand the logic behind getting the babies acclimatised to water, but I’m not sure they need to be dunked under at six months old to achieve that. I have always been confident in the pool or the sea, but wasn’t dunked under the water as a baby (back in my day… grumble, moan, grumble, etc).

Eventually, as she got more aware, she seemed to enjoy the whole class less and less. So we decided to just take her to our local pool instead, and she seems to have a much better time. She is able to do things at her own pace, seems much more confident, and enjoys it a lot more.

Teaching her Aunty the finer points of boating in the Lake District

She has been busy growing teeth over the last few months – now sporting six fine examples of… ermmm… teeth. So as not to spoil her good looks she has so far managed to grow her teeth entirely symmetrically – she has the middle two at the bottom, and the middle four up top.

As of a couple of months ago she has also been attending nursery. She started going one day a week, but we recently changed this to two half days. There were some settling in issues initially, but these seem to have been overcome in the last few weeks – the switch to half days has possibly helped with this. She now seems to really enjoy her nursery days, and is bonding well with the nursery staff and other babies.

Sally has become mildly obsessed with vicariously trying to live her own dreams of becoming an artist through Saskia, buying her pencils, felt-tips, paints, and play-doh. Progress has been somewhat limited, with Saskia yet to fully appreciate the difference between the two ends of a pencil / felt tip. Her best work so far has either been on her own face, tongue and clothing, or on the spare bedroom wall.

Some of the observant amongst you might have noticed that she has short hair in some of her photos. Unfortunately we recently had to cut all her hair off, as she had developed a habit of pulling her own hair out and eating it. It actually started with the cat’s hair, then Daddy’s chest hair, and a fluffy cushion, before moving on to her own hair. Before long she had plucked the top of her head to the point of almost being completely bald.

We really didn’t want to cut off her lovely blonde curls, so tried everything else we could think of; hats (which she took off); swim caps (which she also took off); a stern ‘no’ (which was either too late or ignored); giving her other things to divert her attention (which she ignored or lost interest in).

So eventually we admitted defeat, and decided that the only way to break the habit was to cut her hair off. So far she seems to have stopped reaching for her own head – but will still go for the cat, cushion, or Mummy and Daddy’s chest or arm hair (for clarification, ‘chest hair’ refers to Ben only, not Sally). I guess we will keep her hair short for a while, until we think the habit is broken.

As it is we have got used to her without her hair, and still think she looks gorgeous (but we’re her parents, we would think that!). You can make your minds up from the photo below.

Saskia finds treasure at Whitstable Castle

Finally, saving the most important news until last, I would like to congratulate Saskia on completing her first full orbit of the sun – or in other words, becoming one year old on 26th August! She had a great day on her birthday, with a meal / little party with family at our local pub, followed by a trip to the park to show off her swing and slide skills. She was on top form all day, and really seemed to have a ball, which was great to see. She particularly enjoyed playing with her older cousins, Molly and Robin.

I have included a few photos from her special day below…

… enjoying her birthday lunch at The Phoenix pub…

… time to unwrap some presents…

… blowing out the candle on her birthday cake…

… with cousins Molly and Robin (and an attention seeking fluffy dog)…

… more present unwrapping back at home…

… and finally, playing with her birthday balloon.


Filed under Saskia News

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, I 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 >

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…


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.



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.



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.


Filed under Battle with Melanoma, Other News, Saskia News

They call her ‘Saskia Two Teeth’…

'Saskia Two Teeth'

As promised then, I thought I’d update you on Saskia’s latest news, and share a few more photos.

So as the title of this post suggests, it turns out that while we thought she was just growing one tooth, she was secretly growing a second ‘stealth tooth’. Only a few days after the first appeared, we noticed another one in there, quietly sat alongside. Clearly now she has started, she is keen to get going.

Of course, being the proud owner of teeth also comes with immense responsibility – namely, teeth brushing. We were relieved to discover that this is an activity she actually seems to quite enjoy (I wonder if the same can be said for the cat? I am yet to take the vet’s advice and attempt to brush his teeth, mainly because I anticipate losing a significant amount of my own blood).

Saskia continues on her intrepid journey into food exploration, broadening further her culinary horizons. We are still yet to discover anything that she won’t actually eat, although we suspect that she might not be that keen on egg (Daddy says just wait until you try your first scotch egg… mmmm… scotch egg…). Spaghetti carbonara was a recent highlight, in terms of taste for her, and comedy value for us.

'The Spaghetti Incident?'

Beyond teeth, her other big news is that in the last week or so she has mastered the art of sitting upright unaided. She has always been quite physical, chucking herself around left, right and centre, which never really lent itself to sitting – but she now seems to have got the hang of it. We think maybe being in disposable nappies for a few days might have made a difference, giving her a more stable ‘platform’ (or to put it another way, ‘arse’) – as opposed to the round and bulky reusables she normally wears.

This new found skill has opened up exciting new interactions with us, her toys and her surroundings – which has been fascinating to watch.

Sitting pretty

She is still agonisingly close to crawling, but not quite there yet. She continues to get on her hands and knees, or hands and feet, and rocks back and forth – clearly raring to go. We don’t think it will be long before she makes that final connection, and we have to make an emergency dash to Mothercare to buy stair gates.

Despite not quite crawling she is still fairly mobile – place her in the middle of the room, on her playmat with lots of toys, walk away for two minutes, and when you come back there is a strong chance you will find her on the doormat in the corner of the room chewing a shoe.

"Hi, Oncology? I need to talk about my Daddy..."

She has also been making good progress at her weekly swimming class. She will now hold on to the ‘noodles’ (long cylindrical floats), with one under each arm, and float all by herself, without being held by an adult. Most weeks I go along to swimming and watch, although I missed it this time – hopefully next week I will go.

Right, that’s about it for now, other than to reiterate what I said in my first ‘Saskia’ post – which is that while I dearly wish the circumstances were different, I am thoroughly enjoying having the opportunity to spend so much time with her and Sally as a family. Seeing her grow and develop is such an amazing experience, and she contributes no end to keeping me positive and in good spirits each day.

One more photo for you (followed by a postscript)…

Saskia with Daddy

P.S. A few posts ago I mentioned Sally’s phone was broken – she now has a replacement (similar to Saskia’s model in the picture above actually – it has wheels and Sally pulls it around by a piece of red string). So she is now fully contactable again via her usual mobile number.


Filed under Saskia News

Saskia – now available with teeth…

…or to be more specific, ‘tooth’.

That’s right – a bit of an interlude in all the cancer news now, to let you all know the somewhat happier news that yesterday we saw the appearance of Saskia’s first tooth.

I say ‘happier news’, but Saskia herself doesn’t seem to be all that pleased about it. She has been a bit out of sorts the past few days or so – having trouble sleeping, and showing some of the symptoms of teething – so we had an idea it was coming. It was nice to see it finally appear, to know we had been going down the right direction with all the teething powders, etc.

I did try to point out to her that she was making a bit of a big deal about it, and that in the grand scheme of relative problems, cutting a tooth wasn’t all that bad – but she was having none of it.

I don’t have a tooth photo to show you I’m afraid, as it’s hard enough to get her to keep still long enough to see it with the naked eye, let alone to get a photo. So in the absence of that, here’s a photo from a couple of weeks ago for your viewing pleasure…

High five!


Filed under Saskia News

All about Saskia…

Looking cute

So this post is going to be mainly about Saskia, for two reasons:

Firstly I know many people will be wondering how she is getting on – there are family and friends from far and wide who haven’t seen her for a long time, or in some cases are yet to meet her. So this blog seems like the perfect opportunity to share some of her news and a few photos.

And secondly, I don’t really have much news myself. Since my last post any noticeable chemo side effects have gone, leaving only my back to worry about. Even that has improved since the weekend – although I still have to rest it and avoid standing for long periods. Walking is ok, and sitting can be ok, depending upon the position. The problem is mainly standing still – I had to do a little hopping-from-foot-to-foot dance while standing in the queue at the pharmacy the other day. I made sure I pulled lots of grimacing faces, so that people knew I was in some kind of pain, and not just mental. Maybe they just thought I was desperate for the toilet.

So, back to Saskia then – well, she seems to have come on so much in the last month or so, she is developing so quickly. Whether her development has accelerated, or if it just seems like that to me as I have been spending more time with her, I don’t know. Either way, I do know that it has been lovely to have the opportunity to spend this time and bond with her (despite the circumstances).

Rolling in the park

Probably her biggest and funnest news is that just over a month ago she started ‘baby led weaning’. For those unfamiliar with this concept it basically eschews the traditional idea of purees, liquidising food, and spoon feeding your baby. Instead you put normal food in front of them, and let them discover the food and feed themselves. She still has breast or formula milk in addition to the solid food, so if she doesn’t fill up on solids it’s not the end of the world – at this early stage it’s as much about exploring and learning about food as it is about eating.

Obviously the food has to be healthy (no cheeseburgers!), and if necessary cut or crushed to avoid choking (grapes are either squashed or cut into quarters for example). But usually we find she can have all or at least some of what we are having, even if we are eating out.

“What’s that Saskia? You want Daddy’s side salad – oh ok then, Daddy will just have to make do with just the burger and chips. But I hope you appreciate it – Daddy was looking forward to that side salad most of all”.

Saskia - big fan of food (in this case cauliflower cheese and potato)

In just over a month she has racked up an impressive list of foods – at last count we think at least seventeen different types of vegetable; at least fifteen different types of fruit; chicken, roast beef, cod, bread and toast with various toppings, porridge, boiled and scrambled eggs, omelette, yoghurt, cheese, shepherds pie, risotto, pitta bread dipped in balsamic vinegar and olive oil, and probably much more that I have forgotten.

Watching her try all these foods has been a lot of fun (and very messy) – she seems game for anything. Sometimes the first taste of a new food brings the funniest faces (see the ‘Saskia vs Broccoli’ picture below), but she never gives up – she goes straight back for more, and is yet to reject anything we have given her. She seems to have inherited her Mummy’s diverse taste in food, combined with her Daddy’s ability to shovel in vast quantities (not sure the latter is a good thing!).

Saskia vs Broccoli

This baby led weaning has also had several positive side effects, both for Saskia and for us:

Firstly, because we are now sharing our meals with Saskia, we are eating a lot more healthily ourselves. Sally has always been quite a healthy cook anyway, but with Saskia now sharing in our meals it has added an extra incentive. Which all coincides neatly with my need for a healthy, balanced diet, given my current situation (which has led to what Sally has termed ‘Daddy led weaning’ – where she puts a pile of fruit in front of me, and watches as I discover the food and feed myself – no photos to show I’m afraid).

Secondly, it keeps Saskia occupied while we eat our meals. Last Sunday we managed a full three course Sunday lunch in a pub, while she sat in a high chair happily making her way through a pile of vegetables.

And finally, the act of feeding herself, having to pick up the food and move it to her mouth, seems to have enhanced her development of hand eye coordination and fine motor skills (although you might not believe that when you look at the picture below!).

Saskia vs Porridge

Away from the dining table she has also been practising these skills – everything that comes within reach now needs to be grabbed, tasted, shaken violently, and then banged against anything and everything nearby. All as urgently as possible, before moving on to the next thing to come within range, and repeating the process.

Over the last month or two she has become far more responsive and proactive, observing and interacting with her surroundings. Changing her and getting her dressed is now more akin to wrestling, as she wriggles, rolls over, and attempts to launch herself off the changing table. Bath time is no longer a case of washing her as she passively lies there – it’s now a job just to keep her in the bath, as she tries her level best to escape, along with drinking the water, splashing around violently, playing with her bath toys (usually violently), etc.

Bath time is fun time!

She has also found her voice, and very much likes the sound of it – talking to herself, other people, her toys, etc. She has unfortunately inherited her Mum’s trait for occasional, inappropriate, excessive volume.

Mobility-wise, her main mode of travel is rolling sideways, although she is very close to crawling. She can get up on all fours – sometimes on her knees, and other times just her hands and feet (as if she were doing press ups). Once up on her knees she rocks herself forwards and backwards, but is yet to grasp the idea of putting one knee in front of the other. We don’t think it will be long though before she gets it, and we find her across the room eating out of the cat bowl.

So there you go, that’s most of her news for now. All in all, she is a good natured and contented little thing. Sure, she has her moments like any baby – but generally she gives us very few problems, and brings us an awful lot of laughs, so we consider ourselves very lucky (although I prefer to put it down to awesome parenting!).

Right… well if you made it this far through all the ‘doting Daddy’ writings then well done, and thanks for reading! Just one last photo for you…

Saskia and Mummy watching footballers in the park


Filed under Saskia News