We can rebuild him – better, stronger, faster (I wish…)

Who recognises the words in the headline?

Those of you of a ‘certain age’ might remember the 1970’s sci-fi classic ‘The Six Million Dollar Man’ starring Lee Majors as an injured astronaut ‘rebuilt’ after an aircraft crash.

The opening sequence in series one featured a voiceover saying: “We can rebuild him. We have the technology. We can make him better than he was. Better…stronger…faster.”

I’m no bionic man. And though I know my treatment hasn’t been cheap, I hope it hasn’t reached the $6,000,000 mark yet!

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But I’m reminded of the rebuilding of Steve Austin by the fact that (a) the chemotherapy drugs I’ve taken in the past year have, at times, left me feeling barely alive and (b) they are having to ‘re-boot’ my immune system from scratch – it was totally wiped out by the Stem Cell Transplant.

Point (b) means that I have to get all my lifetime immunisations again – which doesn’t half take me back to my school days and memories of queuing up for jabs in the corridor, with the horror stories of what we were about to face cascading down the line Chinese Whispers-style!

Last month, my consultant gave me a neat A4 sheet of paper setting out my re-immunisation timeline for the next 6-9 months.

There’s a fair bit of medical jargon in there, but from what I can gather I’ll need to get the following:

  • Pneumonia (x2)
  • Flu (annually)
  • Diptheria, Tetanus and Poliovirus (x3)
  • Haemophilius influenza and Meningococcus (x3)
  • Tetravalent Meningococcus
  • Hepatitus B (x3)
  • Measles, Mumps and Rubella

So the consultant appointments and hospital visits might be diminishing, but I think the GP practice nurses are going to get to know me (and my continued fear of needles) very well.

Still, if it’s good enough for the kids…

PS – I was walking the dog (or was the dog walking me?) on Blackford Hill in Edinburgh when I caught this view of the path, the grit bin and the crane. It seemed like a good metaphor for the story above – still a long road ahead, maybe a bit treacherous in places, but the rebuilding process will take place.

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A x

 

 

 

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SMART objectives, sticker charts and arthritis…

It’s been a week-and-a-half in the Slorance household!

Sick children. Poorly puppy. And mental and physical check ups for yours truly.

And they said that the kids returning to school would make things nice and peaceful…

For me, it’s been another (mini) milestone week, one that’s been both reassuring and challenging, probably in equal measure.

As well as seeing my consultant, I’m also still having regular sessions with a clinical psychologist, given the mental strain of my diagnosis, treatment and recovery process.

As I’ve been on anti-depressants and anti-anxiety tablets for more than five years, being linked up with psychological services through my cancer journey was, in hindsight, a no-brainer and something I’ve found very rewarding (even if drugs like morphine mean I can’t remember much about our Ward-based meetings when I was in for chemo and especially my stem cell transplant).

Post-treatment, I was keen to keep up the sessions to focus on the immediate – how was I coping with the recovery process – and the longer term – how do I live for the moment knowing that the cancer will return at some undefined point in the future.

Thankfully, the potential paranoia relating to the latter hasn’t kicked in, and I’ll do all I can to keep it that way. If I’m always looking over my shoulder I’ll never see what’s right in front of me.

But I am still having big issues in making the most of the present – partly for physical reasons (fatigue, muscle ache etc) and partly mental.

So that’s what we zoned in on this week.

My biggest issue just now could easily be defined as simple laziness. I could quite happily lie in bed all morning, get up and eat crap food, and spend the rest of the day on digital devices dipping in and out of social media. I’d be happy at the time, but would hate myself for wasting the day when it got to bedtime. So I’d resolve not to do it the next day. But then…

I’m not quite into this cycle, thanks mainly to dog walks and school runs, but my routine still lacks focus and I’m still opting for the easy (lazy) option when I can.

Last week I had free tickets to three BBC radio shows at the Edinburgh Festival.  Each show started at 10am. And on each of the three days, I managed to manufacture an excuse not to go.

I’ve also allowed dozens of messages to accumulate on email, text, Twitter, Facebook, blog, LinkedIn etc etc that I haven’t got round to answering.  Each day I vow to put an hour aside to respond. And each day I manage to get distracted by something else meaning the messages just pile up.

This isn’t really a ‘cancer’ phenomena. My school reports all said “easily distracted”. My career has always been heavily deadline driven. I love creating ‘To Do’ lists but not so great at actually crossing things off.

But there’s no doubt that my concentration levels have been heavily affected by my treatment, and that I’m finding it just too easy to use my ‘situation’ as an excuse for kicking back and doing sweet FA.

So what was the psychologist’s advice?

I admitted that I had dozens of things I’d like or need to do, but the ‘list’ was all in my head. Swimming, back out on the bike, small-scale decorating, cooking, more social interaction, light gardening, more walks with dog/children etc etc.

We agreed that (a) I have to get the list out of my head and onto paper; (b) once that’s done that I actually put plans in place to do the things on the list in a realistic timeframe and; (c) that I try to ensure that as many of the things as possible are in someway ‘meaningful’, and that they offer an intrinsic reward (even if it’s just the promise of a cup of tea and a biscuit when the task’s completed).

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An the best way to do that? Make them SMART objectives, something many of you will be more than aware of from your workplace.

So I’m now in the process of drawing up a list of things to do that are:

  • Specific
  • Measurable
  • Achievable
  • Relevant (Meaningful)
  • Time-Limited

I also need to make sure that I avoid ‘boom and bust’ – throwing lots of time and effort at one task and burning myself out for days after.  This is what I did by taking the kids to Blackpool for the weekend – the week after (actually, more like a fortnight) was hellish as I paid for my impulsive over-indulgence.

So draw up a list; check against SMART objectives; prepare a schedule; break things into manageable chunks; identify rewards.

Which led us on to STICKER CHARTS! Yup, the best way to help ensure I’m doing this right is to prepare a chart and award myself sticky gold stars every time I do something on my list!! Better get the paper and crayons out…

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On the physical side, had my first six week appointment with my consultant yesterday. Six weeks is by a mile the longest I’ve gone without a check up, and after daily then weekly examinations is quite a while to be ‘cut adrift’.

As said in a previous blog, I’ve been experiencing a lot of fatigue over the past month or two, and increasingly achy muscles and joints, especially my calves, hamstrings, upper arms and neck.

The tiredness is just the consequence of the brutal treatment regime, and it’s a case of manage it as best I can – though meaningful activity can help alleviate some of the symptoms.

As for the pain, that’s likely to be a medium-term side-effect from the many steroids I took throughout my chemo and stem cell transplant.  The consultant said it can lead to arthritis-like symptoms for weeks/months afterwards but should leave no lasting damage.

Otherwise the physical health is good, with my glands being fine and the Mantle Cell Lymphoma remaining in remission. I’ll get a CT Scan in October and a follow-up colonoscopy in late autumn just to check everything remains all clear.

Just as well, given that we’ve had two children sent home unwell from school this week. Two children with GP and hospital appointments. And a puppy with heat stroke followed by an eye infection.

Still, can’t complain…

A x

 

 

 

 

 

 

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The perils of ‘looking good’

A strange thing happened this weekend.

I decided that I was going to write a blog about the post-treatment recovery process, and how the ‘good days’ that people see are often balanced out by the ‘less good days’ that can more easily be hidden.

But before I hit the keyboard I found that my online buddy and fellow warrior Fi Munro had rattled out an excellent blog about her own, understandable frustrations of looking ‘better’ whilst certainly not always feeling it. Great minds etc.

There’s a lot of what Fi writes that rings true with me, but there’s also a lot that’s different – after all we may be civil servants with cancer but there’s a world of difference in what we’ve been through and what we continue to face. Cancer, with its dozens of mutations, is a bastard like that.

But the overall gist if Fi’s column is very much in line with the blog I was drafting in my head.

That whilst the treatment is to all intents and purposes over (I’m still on some longer term drugs), the recovery is a long and tiring process – physically and mentally – and can’t be judged by ‘looks’ alone.

That’s been a particular challenge for me, given that I was bald going into treatment and that my weight hasn’t visibly fluctuated too much during the last eight months, apart from my three weeks in hospital for my Stem Cell transplant where few people saw me.

I really don’t look all that different – at least I don’t think I do. Certainly not compared to many of the other brave warriors I’ve met in and out of hospital over the past nine months.

So I don’t actually mind the “you’re looking well” comments (I know I’d do the same myself, it’s a kind of natural reaction), but I just ask people to understand that looks are skin deep and that there’s a lot – like the graceful swan – going on under the surface.

Like Fi says in her blog, we’ve brought a lot of this upon ourselves. Posting happy social media pics of a relatively active lifestyle. Cracking online jokes. Being positive in the face of continued adversity.

But these ‘highs’ are almost always followed by periods that are ‘less high’ (I’m trying to avoid saying ‘lows’…).

For me, it’s fatigue and muscle ache, often coupled with headaches, and issues like sore throats and being thirsty a lot more than usual.

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I’m still very much in the phase of needing either a long-ish lie, or an afternoon nap – sometimes both! It’s like having a baby in the house again. I need a lie down after having a shower or bath. The stairs can still leave me out of puff.

And my muscles – jeez they ache. Even short walks leave my calves throbbing. My hamstrings and groin muscles are as tight as piano strings. My neck often feels like it’s been supporting a head of Easter Island statue proportions. And my jaw thinks I’ve been trying for an Olympic boxing medal.

If I sit or lie down for any period of time, I have to stand up in stages. It’s pitiful (as are the groans, oohs and aahs…).

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I still need to put a lot of focus on pacing myself. Planning my day and my week. Putting quiet days after busier ones. Building in some ‘me time’.

I find it a bit hard to accept that the recovery process can take so long. I’m told that I won’t get back to any semblance of normality for at least six months after treatment (i.e. Nov/Dec). But no-one can define ‘normality’ for me.

Immediately before diagnosis I was as fit as I’d been for years (apart from the broken collarbone…). I was putting in lots of hard cycling miles. I’d lost the best part of three stones in less than a year.

I’m pretty sure I won’t be back to that level. I expect I’ll just be back to ‘base camp’ – where I was before I started more intensive exercise and dieting. Something to look forward to!

It’s also a  reminder of just how brutal a cancer treatment regime can be.

Apart from some general tiredness, a small lymph gland lump and some persistent, bloody diarrhoea (sorry…), I had no idea that I was suffering from cancer at the time of diagnosis. I wasn’t in a ‘bad way’.

Since then it’s been the treatment, not the cancer itself, that has dragged me down so much. But you can’t deny that it’s been worth it!

So in many ways, the recovery process can be just as difficult to deal with as the treatment.

During the treatment I was reasonably clear on what would be happening and when; what would be my ‘good weeks’ and what would be my ‘bad’ ones.

It was also easier for other people to appreciate the consequences of what I was going through. I could talk about the cocktails of drugs; the hospital appointments; the side-effects; the various blood count numbers.

Now? It’s easy to sound like I’m just on a prolonged period of annual leave, or have entered semi-retirement. Long lies; walks with the dog; family days out; the odd beer or two. Like I say, accentuating the good stuff whilst masking the days of pain, tiredness, grumpiness (yes, I know you are surprised!), lethargy.

But it really is all just all one part of a very big process that will hopefully see me remain in remission for as long as possible and get back to (and beyond?) normal into 2017.

Right, time for a wee lie down and muscle rub…

A x

 

 

 

 

 

 

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Treatment over – let the recovery begin

I’ve always been a bit ‘fad-ish’, so it should come as no surprise that my initial enthusiasm to blog regularly about my cancer ‘journey’ waned at some point.

But my lack of on-line activity goes deeper than that. Way deeper than I can easily comprehend.

Some time in mid-May, I regained my precious Stem Cells, but lost my ‘Mojo’.

I was being drip-fed morphine and was in a worse state than I imagined/realised, so forgive me if I can’t give you the exact details, but I lost a whole pile of enthusiasm for many of the things that I love – reading books; browsing magazines; good food; fine beer; better TV; and writing.

Bluntly, I just couldn’t be arsed! I just wanted to rest, sleep or vegetate on social media reading Buzzfeed listicles.

But you know what? It’s not only cancer and other diseases that the NHS can help fight. They can help you deal with your psychological problems as well. I was lucky enough to be referred to the psycho-oncology service – essentially a clinical psychologist for cancer patients.

It’s not the ‘lie-on-the-couch-and-tell-me-about-your-childhood’ type of consultation, but a very, very helpful one-to-one service where you can chat about your issues at your own pace and develop coping techniques. And as well as an in-patient service, they’ve been happy to keep seeing me on an out-patient basis which is hugely appreciated.

So that’s where the blog’s been hiding for the past six weeks!

Now that I’m back, here’s what’s been happening.

Today I had a clinic appointment with my consultant. It was a good meeting. A very good meeting.

In short, I’m is as good a place as I could possibly be (her words), eight months after first being diagnosed with Mantle Cell Lymphoma.

My treatment is finished. I no longer need to keep coming into Ward 1 at the Western for regular blood tests. My many blood ‘counts’ are all good, showing the bone marrow is now working and my recovery is on track. I’m in remission.

Assuming I don’t catch an infection, my post-transplant monitoring will now be done via clinic appointments with my consultant – next one in six weeks (SIX WEEKS!). Then it’ll be every three months, then four months, then six months and if luck remains on my side might even get to annual check-ups.

I’ll get a precautionary CT Scan and follow-up Colonoscopy in the late autumn, but apart from my on-going psychologist meetings and some dental check ups, that’s my treatment over and done with – 21 days of chemotherapy, 12 days of Stem Cell transplant, a handful of infection admissions, numerous day visits to Ward 1 out-patients, and ‘hunners’ of injections.

Ironically, this ‘end point’ comes after two or three weeks of fairly intensive post-transplant activity.

I managed to pick up a fairly nasty infection in my Hickman Line three weeks ago which had me admitted for four days as they tried four different types of IV antibiotic to try and deal with my fever. And it was possibly this cocktail of antibiotics that caused a ‘chronic kidney injury’ that had me re-admitted for two days a week later, with my blood tests showing worryingly high scores on the creatine part of my kidney function test. All this meant I was at the Western for five days in one week!

The only hint I had of a kidney problem was an increased thirst throughout the day and a need (desperate need at times!) to visit the bathroom once or twice through the night. And though I’m told my blood tests are now ‘normal’ I’m still experiencing these symptoms which is a real pain.

I’m also still experiencing quite a lot of fatigue, with regular long lies (thank-you Mrs S) and daytime naps. My consultant reminds me that my body’s been through some brutal experiences and it will be well into 2017 before I can hope to be fully back to ‘normal’ (or whatever passes for normal).

To help my recovery – at least that was Mrs S’s sales pitch to me – we’ve only gone and got ourselves a puppy – my first ever dog. Little Bailey the Sproodle (dad a miniature poodle; mum a springer spaniel) is 11 weeks old and has settled in really well and, yes, I think we’ve hit it off. Still can’t believe I was at a puppy training class last night, though…

The dog is primarily a 40th birthday present for my wonderful wife (her big day’s on Saturday). We’re off out to celebrate that, and my good news, to the excellent Ondine’s seafood restaurant tomorrow night – just hope my taste buds do the food justice!

A x

 

 

 

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No Ordinary Joe – An Appeal

I’m after your money again. Yes, I’m a greedy so-and-so, but please read on, this means so much to me but even more to the bravest 10-year-old kid I’ve ever known.

Let me introduce me to my wee pal Joe and his brilliant family, the Clappertons.

What they’ve been through in the past, and are going through now, makes my own cancer battle seem like a stroll in the park and gives me regular inspiration and a much-needed kick up the backside when I start feeling sorry for myself.

Joe is in my daughter Millie’s class at school.  She *may* have had a crush on him for a few years now. It’s not really for a dad to say! His wee brothers Rudi and Sandy are also good friends with my kids, and let’s just say the respective mums and dads enjoy a ‘light refreshment’ or two together when circumstances allow!

Joe

Here’s Joe’s story, in his mum Leigh’s words:

“Six years ago our son Joe was diagnosed with a brain tumour at his brain stem. He had surgery which fully removed it and follow-up Proton Therapy (a form of radiotherapy) and has had six wonderful years free of cancer.

“Unfortunately in March this year with chest pain and balance problems we were given the news that he had relapsed and his tumour had returned in his brain stem and in his spine. He had emergency surgery to remove most of two of the bigger tumours which had caused compression in his spine.

“As Joe always does he made an amazing recovery even though it was extremely tough! He has now nearly completed his first 9-week course of intense chemotherapy and although it is extremely difficult for him at times, he continues to embrace and enjoy life through every single opportunity he can! We are so proud of him. He faces radiotherapy next but we know he can do it! He never stops amazing us!

“Joe has spent a lot of time in the children’s oncology ward at the Sick Kids Hospital in Edinburgh. The doctors, nurses and all the staff are so amazing at their job and the new Sick Kids is opening in the not too far future. He is such a bright ten year old and we asked him what charity we should raise money for and his answer was simple… A room or space for 8-13 years olds! There is a ‘teenage’ cancer trust room and a ‘very young’ play room but nowhere that accommodates his ‘pre teenager’ age group! He has amazing ideas for ‘bean bags’, ‘ Ipads’ and chefs coming in to do baking lessons!”

Wow, just wow!

I really can’t begin to imagine what all that intensive treatment – both back in 2010 and now – means to a child, given what I’ve seen and felt what it does to a grown adult.

But know what? Joe takes it all head-on with a determination that embarrasses me every time I have a wee moan.

He makes me smile every time we meet. We compare our (lack of) hair-styles. His hats are much, much cooler than mine. We talk about Central Lines and chemo treatment. He challenges me to physical tasks (I wimped out of the dad’s race at school sports day last week – Joe, meanwhile ran his year group sprint. See what I mean about embarrassed!)

I’ve no idea where he gets the energy. Or the motivation. Or the bravery. But he’s an inspiration to us all.

As you’ll see from his mum’s words, he’s also thinking of others. Which me and a number of other adults found out to our cost when a number of families went camping for the weekend at the start of his treatment in the Spring.

The Clown Doctors at the Sick Kids had taught Joe a trick which allowed him to ‘conjure’ fivers from gullible willing adults. He scammed earned a small fortune, but rather than squirrel the cash away he took the 20 or so other kids to the sweetie shop and kept them in sugary snacks for the whole weekend. Like I say, always thinking of others.

Joe’s family have set up a JustGiving page to raise funds for the new room at the Sick Kids.

https://crowdfunding.justgiving.com/leigh-clapperton

If you can spare a quid or two, I can think of no greater cause than providing a dedicated support space for 8-13 year olds in a Cancer Ward.

Just think about it. Primary School and early High School kids stuck in hospital getting intensive treatment for Cancer. Stuck in hospital for days, weeks at a time.

Let’s help give them something to smile about and a little bit of light in an often dark place.

Thank-you.

A x

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What happened to May?

I’m back, but where have I been?

I keep asking myself that question? What’s actually happened over the past month or so?

I know I blogged a few times in May, but truth is I don’t remember doing many of them. They’re my reminders as well as your updates.

They call the day you get your Stem Cells returned Day Zero. I understand the reasoning now (on day Plus Twenty).

It’s not only the first day of the rest of your ‘new’ life, but it’s also the start of something that they described as brutal and that certainly has lived up to it’s billing.

I’ve been home for eight days now. After more than two weeks in isolation, and around three weeks in hospital.

I should have felt elated. On a high. Buzzing.

But I’ve felt flat. Depressed. Tired like never before. Worried that I’ll never get back to ‘normal’ – if I even remember what that actually means.

Yet I also realise how lucky I am. I’ve had a transplant, but I’ve not had major surgery. My Scottish Government colleague and social media cancer buddy Fi Munro has also been bravely blogging her traumatic experience battling Stage Four Ovarian Cancer.

What she’s been through in past few weeks gives brutal a new meaning. I bow before her positivity and fortitude and take inspiration from her determined outlook on life. If you are ever feeling crap then give her amazing blog a read and you’ll realise what hanging tough really means.

Where am I now?

Like I said, I got ‘released’ last Monday (30 May) as my vital numbers (especially neutrophils – the part of the blood cells that fight infection) were showing good signs of recovery (they’ve since dropped back a bit…)

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My daily blood count numbers etc since Day Zero. Haemoglobin, White Cell Count, Neutrophils, Platelets and Transfusions. Note Days 5 to 8 when my immune system was non-existent.

 

That was day Plus Fourteen. Before that I’d had my Stem Cells returned in a surreal sci-fi process involving dry ice and big flasks (see pics below).

I’d stopped eating. I’d pretty much stopped functioning. I had zero immune system (the chemo had killed it off). I was getting blood transfusions and platelet transfusions on a daily basis. I was constantly on a drip, had a separate morphine machine attached (with a dinky wee handbag), and was often hooked up to the oxygen line – all very Holby City!

I managed a whole one of the snacks I’d taken in – a sticky ribs Pot Noodle which was revolting. Otherwise it was daily feeding via an Intravenous bag called a Total Parenteral Nutrition. I lost almost one and a half stones when in hospital, and have lost another half stone since I got home. So there are some positives!

As expected, one of the drugs heavily affected my throat and oesophagus and left me feeling like I was swallowing glass just drinking water. It’s still not totally cleared up but I’m ok with still drinks.

Taste buds are still completely shattered and my appetite is only slowly returning. That, for me, is particularly tough. I’m forcing down a kiddy-sized portion of cereal and not much more than a young teen’s meal at night, and not a lot else. But anything is good as nothing means readmission.

My two biggest problems at the moment are total fatigue and an allergy to my platelet transfusions (which, typically, are the ones I need most!).

I have literally no energy at the moment. I’ve suffered a lot of leg muscle wastage, and my lungs feel like the size of walnuts. It takes all my effort to climb the stairs or to walk to the end of the garden, but I think I see progress, even if it’s small amounts each day. I’m also quite sleepy during the day though I’ve managed to cut my naps back a bit.

The platelets are a big concern though. When I was in hospital, despite pre-medding me with lots of Piriton and steroids, the transfusions brought me out in lots of hives, multiple itchy rashes and once a very swollen eye (like my worst hay fever reactions of past).

I now go in to get blood tests three times a week (Mon, Wed, Fri) as an outpatient and have needed platelets twice in three visits.

Last Friday I came out in lots of hives and rashes and had to stay on a few hours to let them die down. Then on Monday, within 5 minutes I went from fine to full respiratory emergency as my breathing became very badly affected by the transfusion and I had nurses and doctors all over me attaching me to Salbutamol nebulisers and Oxygen Masks as well as pumping me full of antihistamines and other drugs to try and get my breathing back under control.

I’ll admit it was a scary experience. I really was struggling for breath and coughing quite violently. I’m told it was similar to an asthma attack. When you’ve already got no energy boy does it take it out of you.

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After the Oxygen Masks but with blotches and rash still going strong!

 

It also leaves the medics with a dilemma. They can’t keep giving me platelets if the reactions are going to be severe. But platelets I need.

Apparently there’s another option: specially ‘cleaned’ platelets from the wonderful folk at the Scottish National Blood Transfusion Service. As it’s likely to be the plasma that the platelets are in that I’m allergic to, they’ve got a way of ‘cleaning’ the product to make a reaction less likely.

I’m back in tomorrow. Wish me luck!

A x

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Still here.

It’s not like I wasn’t warned that weeks stuck in a wee room could hammer you mentally as well as physically.

I can hardly say that the consultants and other experts – including those who’d been through it before – didn’t stress just how hellish the stem cell return was likely to be.

And I’d be wrong to beat myself up into believing I didn’t listen, that I was so blasé I thought I’d be comfortably in and out in 3 weeks with barley an issue.

But now, as I start to clamber of of the big black hole of horribleness I’ve been in for past fortnight, these are thoughts rushing through my mind.

I thought you were deserving of an update. You’ve kept messaging me such brilliant words of support and encouragement and have had back from me, well, nada. Zilch.

I’m not going to say much more tonight than I’ve had my new stem cells for 10 days and there’s signs today they are finally grafting.

I no longer feel like I’m swallowing broken glass every time I drink (I’m still not on solid food yet…).

I will give a retrospective set of updates in coming week, which will include:

  • Morphine induced dreams including my support to the Royal Family’s health needs.
  • My new found love and hate for ice lollies.
  • Shaving my moustache with finger nails.
  • Getting my balanced meal in once A2 sized bag
  • Cleaners who come in and say how awful it is to be stuck in at the same time as reminding you what smashing weather we’re having.
  • Living a week (almost) not even looking at Facebook. It can be done.
  • Experiencing an unimaginable nightmare that Hibs actually won the Cup and Rangers actually signed Joey Barton.
  • And much, much more.

But for new, sorry for switching you all off for past two weeks and I hope you’ll welcome me back with same love and support as before.

A x

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