'Reflections' by Alice Pyne

When I'm feeling tired and weepy

and things aren't going my way

I watch others take for granted

that they'll see another day

When I feel afraid and all alone

and my mum feels this way too

I take a minute to reflect

On the things I'd like to do

I'd like to have a sailing yacht

and travel oceans far

Leave footprints sunken in the sand

No need to have a car

But for now my lines are busy

taking chemotherapy

To help me in my fight against

the cancer that's in me

I came here to this race today

for those who fight like me

Let's join together, one BIG team

'cos it's not beating me!

by Alice, age 13

June 2009

Life is a rollercoaster, you just gotta ride it ...

Boy is life a roller coaster ... up and down, all the way. Having experienced more downs in recent years, I have decided that we must have started out pretty high in life!


Nothing exciting happened in the last month, quite the opposite in fact. We had to cancel our planned trip to Donna's Dream House in Blackpool which the girls were so looking forward to. Alice spent 3 of the weeks in hospital and Milly had to pull out of her ballet and jazz classes. We have also had to cancel Alice's summer stay at Barretstown in Ireland (children's cancer camp) which she was really keen on. Maybe next year?!


So, May is over and done and we are now on with 'the plan', except 'the plan' isn't really a plan. With no tried protocol in place for her situation, we are experimenting with a new regime and following it up with stem cell transplant. After yet more chemo, we were successful in harvesting just over 4 million stem cells. My research has now turned to stem cell transplantation and I'm just so engrossed in it; our bodies are absolutely incredible.


transplant VERB
1 remove a plant and put it to grow elsewhere
2 transfer a part of the body to another place


transplantation NOUN
1 the process of transplanting
2 something that is transplanted


When in hospital, life is fine. But in fact, cocooned in this protective environment, we're merely existing, not living. Having time on my hands has found me playing a new game. I analyse. Anything. Anyone. Our home, our lifestyle, our friends, our choices. The realisation that few things are worth worrying over is strangely calming. How late this wisdom comes.


So, we trundle on, taking each hurdle as we come to it. Alice has been focusing on the 'Race for Life' this coming Sunday, where she is the guest of honour and she'll be starting the race. She was going to make a speech, but has now decided to read a poem that she has written about her cancer. I'll ask her if I can post it on here as it's really good - quite poignant though.

Last request for sponsorship for our amazing girl -

www.raceforlifesponsorme.org/doingitforalice

Can someone get the NHS in order?!

As if life wasn't crap enough already without the bureaucracy of the NHS. After 16 months with effectively no GP and countless refusals to take us on elsewhere (budget heavy, our girls) we have finally found a practice. Unfortunately, there's a hitch ... it currently has no resident GP, but a series of locums! Never one to be deterred by such minor detail, I phoned to make an appointment to order much needed prescriptions for Alice ... "you can't have a GP appointment until you have seen the practice nurse for a New Patient Appointment (NPA)". "Okay fine", I say. "Four weeks on Friday", they offer. "No, she'll have died if I wait four days, let alone four weeks, could we be seen any sooner"? "No, there isn't any appointments with the nurse, only emergency ones with the doctor". "Well, under the circumstances can I have one"? "No, because you're not on the system yet as you haven't had a NPA". "Does being 12 years old, diabetic, on cancer treatment, with a hickman line, registered with yourselves and in desperate need of medication not count as an emergency?". "No".

It is on days like this that I literally loose the will to live. Surely these people need to be given a bloody good shake and then replaced with someone with an ounce of common sense. Fortunately, I managed to get through to the practice nurse and explain my situation and a day later, we had the drugs. But this world we live in is crazy; there is no reward for being a law abiding, tax paying citizen. We have little kids sat in over crowded oncology wards - televisions but no aerials; games consoles but no games; pillow slips but no pillows ... and yet prisoners sit in the lap of luxury with the latest flat screen and a pool table. It makes me so mad.

March was a strange month. We were all waiting for the scan; the scan that would release Alice (and us) from this life on hold; an uncertain future. The phone call late in the month to check that we were okay with all the arrangements for the following day's PET was the first we'd heard of it. "Oh, X-ray were supposed to call you, we only do the preparation call" was the response. Milly deposited elsewhere, I was duly on the motorway at 6.30 the following morning, for the contrast dye and wait preceding the PET scan. There followed the obligatory commotion over Alice being a diabetic and how she would have to stop and remove her insulin pump. Er, no. Don't think so. Despite my reassurance that I really had controlled her BMs before while fasting, it took several phone calls and curious glances at me before they finally gave the okay to leave the pump running. Scan over and done, we headed to Pizza Hut for a good girl lunch. ARGH ... okay, rant over!

We spent a week over Easter at Malcolm Sargent House near to Ayr in Scotland. It is a complete escape from life as we now know it, with other families in similar situations. The staff are just so lovely that it is hard not to relax and feel at home with them. There were organised excursions or activities every day and we spent some quality time as a family. Throughout the break however, the pending scan results were never far from our thoughts and we returned to the news that although Alice's chest is now looking clear, her neck isn't. We are now waiting the outcome of a consultants meeting to see what is next in line.

So, still can't start planning that remission party. Sway between wanting to celebrate the good news or dwell on the bad. It would be good to be able to reach a point where there is only good news, but that time isn't yet. We'll continue on our road and hope that there is more positive news over the hill.

Our final news is Alice's BIG news ... she was approached by Cancer Research and asked would she be their special guest and officially start the Barrow Race for Life in June. If you would like to sponsor her - no amount is too small, then go to http://www.raceforlifesponsorme.org/doingitforalice

A Happy New Year!?

Well, one has to assume that it can't be any worse than last year! Slight delay in updating blog ... just had a few things to attend to!
To say that we survived Christmas is just about there. Our diary was punctuated with various obligatory events and arrangements, to the point where hubby actually considered returning to work early. The girls were content to play with their new hi-tech gadgets and us parents were quite simply, surplus to requirements.
The New Year was spent with some special, close friends and I actually managed to feed them without receiving later reports of food poisoning.
January brought my 40th birthday and despite trying my hardest to ignore it, friends were determined to make it one to remember. It was fortunate that the only friends I chose to turn up to that week (for a take away), were the ones hosting the party!
The following week saw the start of Alice's radiation and after the initial few days, we made the move down to Liverpool, where we explored the surroundings and spent many afternoons at the Blue Planet Aquarium. Evenings were spent with the door firmly locked ... every skin head with studded collar staffie in tow was a potential mad axe man! Returning in February to the relative calm of the Lakes was wonderful!
March has arrived and with it, the spring and hope of new beginnings. Alice is due back in Alder Hey next week and a few weeks later, we are hoping for a clear set of scans, and with it the chance of normality.
Whatever normality is!

It's beginning to look a lot like chaos ...

OMG (Note to self - must think of variant on 'OMG' start to postings) - tomorrow, well in 20 minutes to be precise, it will be Christmas Eve. As in the day prior to Christmas Day. Shoot! That would have been sh** if I were not concerned parents might read. How has Christmas Eve crept up on me like this. Am convinced that a week has been deleted somewhere. Some gifts were bought so long ago that I no longer have any recollection of their whereabouts; the others are still on my 'to do' list. Is evident that I need to prioritise. Urgently.

We had a calling earlier in the month, but not of the religious nature! Mr Simon Cowell himself invited Alice et familie to London to meet him and tour the x-factor studios, meet the judges, watch the show rehearsal, etc. Wow, amazing fab, fab day and Alice was beaming from ear to ear. Hopeful that he didn't notice my kitchen scissor hair cut job!

Let it snow, let it snow, let it snow ... 'When you wish upon a star', previously mentioned, made the girls feel a million pounds on a special V.I.P. day to Lapland last week. It was amazing ... snow everywhere and they had a ball. Everything was arranged to perfection, not a single hick-up. Take a look at their website as they are purely a charitable organisation and do amazing things for poorly children.

Spent so long figuring out the link thingy for the 'Wish' bit above that it IS now Christmas Eve ... that means tomorrow is Christmas Day ... ARGH! Search around freezer today, confirmed that I also need to give Christmas lunch more than a passing thought ... pizza may not tick the box! Will wake at 0630 hours, be in Tesco at 0730, town for gifts at 0900 and home by 1030 hours. Will then gift wrap with co-ordinating tags and bows, deliver to various relatives and friends (unfortunately spread over a 50 mile or so radius) and be back home by lunch time, totally relaxed and tolerant of (by then) drunken husband and hyperactive children ... not.

Oh well, I would hate to one of those who smugly announce that they have 'done their Christmas shopping' in September. You know the type who already has their hair and nails booked for next Christmas. Natural is in. Actually, that may refer to interior decor, but could equally apply to women. I'll stick with that. Have also saved around £300 in hair care this year and husband has yet to notice anything is amiss!

Have a very MERRY CHRISTMAS and a HAPPY NEW YEAR!

Mission ... failed!

Have failed miserably to achieve. List not even written. Am leaving in 8 hours time with the children and not back 'til Thursday. PLAN B ... write list on train journey to London, take laptop and shop online where possible, send parents a goat (not literally), renew magazine subscriptions for aging aunts, agree not to buy for spouse thus saving a domestic over how much I've spent on him (of his own money) - however, if he doesn't buy for me, he's dead. There. Christmas. Done.

It's beginning to look a lot like Christmas ...

We have had the most amazing day ... in Lapland! Well, not the real Lapland, but Lapland at Center Parcs Oasis Village. 'When you wish upon a Star' is a wish charity for children with terminal and serious illnesses. They organise a special trip to the real Lapland every year and this year, the girls were delighted to be invited. It is times like this that I question having two children who qualify. Center Parcs Oasis have been very busy raising money to support some local Cumbrian children and Alice and Milly were invited for the day to accept the donation cheque for 'When you wish upon a Star'.

The children were both so excited about going to Center Parcs. We haven't managed to get a break there for a few years and they were both eager to return. It was all snowy when we arrived, which added to the festive feel. We were taken over to Santa's workshop and we got to meet Santa, who Milly commented must be a 'helper' (the real one is ONLY in Lapland she advised)! It was so lovely and they'd put a lot of thought into making it nice for the children. They were both given gifts and Alice was especially taken with her teddy ... another one for her bed! Then, we all had hot chocolate and yummy cakes in Starbucks. We were told that we were okay to 'stay and play' so we did! We went bowling, did some shopping and then had a lovely meal in the Italian restaurant and then we went swimming ... well, Alice paddled, but she had the most wonderful time and we really didn't want to leave (we did consider squatting but couldn't find an empty villa)! Thank you Center Parcs!


Our week gets busier ... Alice is away from Sunday and I'm taking Milly down to Great Ormond Street for Monday and Tuesday. Tuesday evening, I take a train from London to Manchester where (hopefully) husband will appear with daughter number one. We then all fly out from Manchester to Lapland on Wednesday and I'M VERY EXCITED! I think that I may be even more excited than the children. Every single thing we do has become special and although always captured on SD card, is also stored firmly in my memory. It's peculiar that you spend the early years of your childs life desperate to fast-forward and only later realise that you ought to grab and cherish every moment.

It will be Alice's birthday weekend when we get home and we have nothing planned, which is a first. Alice is due back down in hospital the following week, which is a shame as it is also the last week of school and we had hoped that she might be able to get there every morning (something that hasn't happened for about a year)! So it's 'child swap' again. Her hair is definitely on the brink of not being there, so we're perhaps going to look at putting it out of its misery! I on the other hand, am beginning to resemble the local long-haired cattle and a visit to the shearer's is long overdue.

We have absolutely nothing planned for Christmas. Can't seem to focus that far ahead, apart from the M & S Turkey is ordered. Despite surviving Roast Guinea Pig in Peru, pulling the Turkey's neck out of its bottom doesn't do it for me, so I've gone for the 'ready to roast' variety ... it is my Christmas as well! Note to self ... must think about Christmas shopping. May draw up a list and methodically follow. This time tomorrow, all will be done. Other mother's will marvel at my wonderful organisational skills. Must also think about a visit to the loft to retrieve moth eaten decorations and Christmas tree. Just thinking about it makes me tired. Have decided there is a massive gap in the market for a UK equivalent of the American deco companies who just appear and decorate your house. Would quite like a singing Snowman and reindeer galloping across my lawn. Husband would no doubt spoil it by producing electrical costings.

Well, only 5 sleeps until my, sorry the children's, big day out. Did I say that I'm excited?