by | April 9, 2012 · 11:40 am

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

13 Comments

Filed under Saskia News

by | April 3, 2012 · 10:13 am

That difficult third post…

Hi,

(ok, so I know the phrase is supposed to be ‘that difficult second album’ – but I’ve already written my second post, so it’s too late for that. And under the circumstances, I think I will allow myself the small pleasure of misappropriating the odd phrase for my own purposes)

So it’s been just over a week since my treatment. In terms of side effects, a few more came on over the weekend. Started to feel a little grotty Friday evening, and felt dead tired Saturday (and a little ‘not with it’ – not dissimilar to being hungover).

I was worried for a while I was developing a chest infection / fever – which would have been bad. I have a little yellow ‘this patient is on chemotherapy’ card from the hospital, which lists the circumstances under which I immediately have to go to A&E, including high temperature, flu like symptoms, etc, etc. I didn’t really want to go to A&E, not on my first cycle at least! But fortunately with some early nights and resting, it didn’t materialise into anything significant.

My back has been giving me grief over the last few days – as mentioned in my first post the lesion on my spine is giving me sciatic pains down both legs. Not sure what’s made it worse the past few days – I think I slept awkwardly Friday night due to not feeling well; or maybe it just seems worse as a result of being a bit more sensitive to pain in general the last few days (a chemo side effect I assume).

Sally has been amazing (as ever), doing the vast majority of the Saskia work (entertaining, changing, bathing, feeding of porridge, removing of porridge from nose, ears, eyes, hair, etc) while I rest to help my back recover. Hopefully it will improve soon and we can share the load a little more evenly.

All that makes it sound like the last few days have been terrible – which I should stress isn’t the case. On Friday the three of us had a lovely sunny alfresco lunch at ASK (courtesy of our Tesco Clubcard vouchers – guilt free lunch tastes even better). And I’ve even begun venturing back into social situations – met with some NCT (ante-natal) friends Friday afternoon, and spent some very enjoyable time with friends Saturday and Sunday.

The last few days have also brought more acts of kindness and generosity. We’ve had a hamper full of goodies, offers of financial support, been treated to lunch, and plenty more messages of support and goodwill. I also received a collection of Daniel Kitson (stand up comedian) material to watch – which is good and very timely, as over the last month I have exhausted Stewart Lee’s (another stand up comedian) entire back catalogue. My recent routine has been something like this…

Go to hospital, get told you have cancer… go home, watch a Stewart Lee DVD to take your mind off it…

Go to hospital again, get told your cancer is worse… go home, watch another Stewart Lee DVD to take your mind off it…

And so on…

I wonder what will happen if (or thinking positively, ‘when‘) I go to hospital and get good news? Perhaps I’ll feel the need to come home and watch a documentary about cancer, just to keep myself on an even keel psychologically.

Right, I think I will leave it there for now – thanks to all those who have viewed the blog so far, and sent feedback and messages of support as a result – it’s been very encouraging.

I think I will try to make the next post about Saskia, for a bit of a change / light relief. Going swimming with her this morning – should be fun.

P.S. If any of you want to receive blog updates automatically, there is a button near the top right called ‘follow’. Click here, enter your e-mail address, and it should e-mail you whenever I make a new post, to save you checking back and finding nothing new.

6 Comments

Filed under Battle with Melanoma

Tagged as , ,

by | March 29, 2012 · 9:40 pm

People are nice…

Right then – day two of the blog, day four of the chemo cycle.

Still no major side effects – although my teeth feel a little bit loose. Not sure if that’s due to chemo or not going to a dentist since we first moved to Kent 5 years ago. With all the cancer stuff that’s happened over that time, fillings and whether I need my wisdom teeth out has never seemed that much of a priority. On the plus side, by staying away from a dentist for all that time I have maintained my record of not ever having any fillings (see, I told you this blog would also contain good news!).

So, to pick up where I left off yesterday, I wanted to write a little about the extraordinary generosity and support we have received over the last month from family, friends, colleagues, employers, and even complete strangers. We have been genuinely moved, surprised and humbled by the lengths that people have gone to on our behalf. And to know that all these people are out there, doing what they can for you, really provides a great boost to my motivation to beat this.

Our families have been amazing – driving me to hospital when I didn’t feel like the train, or babysitting Saskia while Sally and I go to hospital; helping us keep on top of the housework, filling our cupboards, taking Saskia off our hands to give us a break, paying hospital travel expenses, helping with DIY, offering us holidays, helping to whip the garden into shape for summer after a winter of neglect, and much, much more.

We have received countless cards and messages of support and hope from family and friends, as well as donations, gifts, prayers and masses said for our cause, distance Reiki performed, and yet more. People have been researching my illness on the internet, and sending us any relevant information that they find.

Friends have also been looking after Saskia while we go on hospital trips. We’ve been incredibly kindly given money to go on holiday, given loan of a flat in Faversham for our visitors to stay in, and had Tesco deliveries sent to our door, among other things.

My employers have signed me off work to concentrate on my treatment and family, and are being incredibly supportive and understanding.

Sally’s employers have, at very short notice, allowed her to extend her maternity period to the full year, and have offered to pay the last three months at the statutory maternity rate (usually unpaid). Her colleagues have been dropping round goody boxes of food, magazines, toiletries, etc, and even raising money for us – the company MD has given up smoking and is donating the money he saves; another colleague is catching the bus to work and donating petrol money saved; several others are doing a sponsored swim for us. The husband of another colleague (a professional driving instructor) is giving Sally driving lessons free of charge to get her back on the road. Plus we have a long list of volunteers for help around the house, babysitting, etc.

I even had a complete stranger on the train home from my first chemo session the other day give me a pep talk after overhearing that I had just been for treatment.

This outpouring of support in all its different forms has been incredible – it has been amazing to witness people pulling together to help us out. The warmth and support we have felt has shed an awful lot of light into what would otherwise be an incredibly dark time, and in no small part has helped us to pick ourselves up from the bad news and stay positive. And it has meant that thankfully we have not had to worry too much about the financial impact of our situation – which is a massive relief.

So this post is a massive, massive thank you to everyone for all you have done – the above is by no means an exhaustive list, and not intended as a list of credits. But you all know who you are – and you have our sincerest gratitude.

4 Comments

Filed under Battle with Melanoma

by | March 28, 2012 · 10:35 pm

The beginning of a journey…

Welcome.

I never really thought of myself as someone who would keep a blog – to be honest I couldn’t think that my life or opinions were interesting enough to warrant documenting for the world to read. I could have ranted endlessly about the Daily Mail, but that would have got boring after a while (for you I imagine, probably not for me).

But in the last month or so things have suddenly got a lot more interesting, but unfortunately not in a good way – I have been diagnosed again with cancer.

Some of you may know my history – almost 5 years ago I was found to have a malignant melanoma (a form of skin cancer) on my left shoulder. I was 27 years old, otherwise generally healthy, and had never been near a sunbed in my life. The odd bit of sunburn as a teenager while prancing round Cornwall trying to become a surfer, but nothing major.

It was surgically removed, and after a lot of debate (for about six months) between doctors as to whether it had spread, I was given the ‘all clear’ and sent home.

Two years later it was detected in a single lymph node under my left arm. I was promptly back in for surgery, and had all the lymph nodes from my left armpit removed. Some more scans later, and I was again given the ‘all clear’ (albeit qualified with ‘as far as we can tell’).

The three years since then have been characterised by worries about recurrence, trips to various hospitals for scans and biopsies on various innocent lumps and bumps, and wondering whether I was becoming paranoid and beginning to annoy the doctors with questions about lumps on my testicles.

So in January this year, when I started to develop some lower back pain, I worried about cancer. But I told myself I was being paranoid, and put it down to having a new baby – lifting her up, hauling prams in and out of cars, bending over doing her bath and changing nappies, etc. So much so that I nearly didn’t mention it at my six monthly check up at the Royal Marsden (for those who don’t know, generally ace cancer hospital in London – one of the best places in the country).

In the end I did mention it, just in passing I hoped…

“Bad back? No, that won’t be cancer, probably something like a new baby or something”.

“Great, thanks Doc, see you in another six months”.

Unfortunately the conversation didn’t go quite like that. An MRI on my back and a CT of the rest of me later, and in late February I was told it was back, and had brought friends to play this time – on my spine, in my liver, lungs and spleen (what does a spleen actually even do?).

This news obviously came as a massive blow, and the weeks since then have been a real roller-coaster (and I don’t like roller-coasters!). I won’t bore you with all the details, but in short I had just picked myself up from the knock of the initial news, when I got more bad news – I couldn’t go on a clinical trial of a promising new drug as my melanoma didn’t have the right gene mutation.

Ok, pick myself up and get positive again, there’s another trial I can go on. Except that a week later (last week) I was the told I can’t go on that one either due to the location of my cancer – another blow to pick myself up from. The only treatment option available to me (at present) is the standard chemotherapy treatment for melanoma.

So that’s where we are. I started chemotherapy treatment Monday (two days ago). One silver lining of being on the standard treatment is that it is apparently relatively well tolerated. The infusion of the chemo only took about an hour, into a cannula in my arm. And other than a slightly foggy feeling and a few hot flushes on the train home, since then I have felt fine. No nausea, tiredness, sickness (they give you anti-sickness meds). There might be other side effects to come later in the cycle (each infusion and the following weeks leading up to the next infusion is known as a ‘cycle’), but so far so good.

Then in three weeks I am back in for my second infusion of chemo . Three weeks on from then I have another scan. If the chemo is working then I carry on for another four cycles – if not then I come off it and we try something else.

To be honest after all the trips I have had to London in the last month or so for scans and results it’s just nice to know that I don’t have to go back for three weeks.

So there we are – cancer has motivated me to become a ‘blogger’. Why?

Well in all the turmoil and upheaval of the last month it’s been difficult just keeping on top of everyday life – Saskia, the house, etc (fortunately I am currently signed off work). In the course of all that I have been relaying the news to various people – but I knew there were many good friends who I had not come across in day-to-day life who had no idea what was going on. Hence, the ‘blog‘. I figured this would be a great way to disseminate news and keep people up to date, without me having to say / type the same thing again and again – and for people to follow my progress, leave messages of support, etc (or abuse if you feel that way inclined).

Don’t worry, I’ll try not to make it all about cancer. I’ll put in nice stuff as well – news and photos of Saskia, other photos, and just general news of what we have been up to. The cancer is the motivator for starting this blog, but will not be the sole focus. It’s important to focus on the positive as well.

Speaking of positive – despite all the recent bad news and stress of the last month I am remaining fully positive that I will beat this. As far as I can see that’s the only way to fight this battle. Not long after the first set of bad news, I came down with a chest infection. Then a few days after the bad news about not being able to go on the first trial, I had several attacks (spread over four days) days of an excruciating stomach pain, lasting hours at a time – so bad that the first time I ended up going to A&E in an ambulance at 4am in the morning. The doctor in A&E, my GP and my gastro nurse put these stomach pains down to excess stress due to the cancer diagnosis.

While horrible at the time, these experiences were a clear demonstration and reminder of the effect that the mind and mental state can have on physical well being. If I get down and depressed my body will give me even more crap to deal with. So I figure I can turn this to my advantage – by keeping a positive attitude I minimise both mental and physical stress, hopefully minimise chemo side effects, and put myself in the best possible state of mind to beat this.

There is every reason to stay positive – there seems to be nothing to be gained by sinking into negative thoughts.

Right, I think I will end this post here. I have (believe it or not!) more to write. I haven’t yet touched on the amazing support and generosity we have received from family and friends in the last month.

But it’s late, and I’ve written a lot today, so I will continue tomorrow.

Bye for now.

P.S. This blog is also heavily inspired by a similar blog kept by a guy called Ezra in New York, who has been fighting colon cancer (hopefully, it looks successfully). It would be wrong of me not to credit him for his inspiration, so for anyone who wants to take a look, I have copied the link below. It’s a great read, and he is a wonderfully honest and funny writer (as well as good photographer, bike builder, and cook). So I would fully recommend it. You might also pick up some decent recipes! Thanks to Dan Morse for directing me to his blog.

Link > http://www.fastboycycles.com/teachingcancertocry/

2 Comments

Filed under Battle with Melanoma

Tagged as , , , , , , , ,