The Pagefield Lineman

Today was my final visit to MRI before being admitted on Monday for my transplant. The purpose of today's visit was to have a PICC line inserted. A PICC line is a quicker way of taking blood or giving fluids, in my case chemotherapy followed by stem cells rather than having to keep putting a canular into your hand or arm. It's a couple of external tubes connected to a line than enters the vein in my arm and then runs to the entrance to my heart via the vein. It's a fairly simple procedure,which takes around 5 minutes in total. The nurse struggled to get the line in my right arm and after 3 failed attempts decided to try my left arm and successes first time. It's left me with a lovely iodine t-shirt fake tan though.

The line gets cleaned and flushed regularly and the dressing changed once a week. I need to wrap cling film around it to keep it dry in the shower. We're ready to go for Monday.

It got me thinking about lines and in particular songs with the word lines in them. So here is a little competition for all you blog readers. In the comments section below or in the comments section on Facebook or via replying in a Tweet - wherever you pick my blog up from, give me as many songs with the word line in. Here's a few to start you off

Artic Monkeys - Fake Tales of San Francisco "and all the weekend rock stars are in the toilets practising their lines"

Frank Turner - Get Better "she drew a line across the middle of my broken heart and said come on now let's fix this mess"

And the song that inspired the title of this blog Glen Campbell - Wichita Lineman

I'll update following Monday's chemotherapy session. Thanks for all your kind words and support.

Pre-Transplant preparations complete - check.

Last Thursday Jen and I went to MRI for a series of pre-transplant checks and a consultation with the transplant doctor to sign consent forms etc..

The checks involved a number of blood tests, swabs, ECG and chest X-Ray. The main purpose being  to make sure I am fit enough to go ahead with the procedure as well as making sure I am not carrying any infection that would compromise me or any other patient.

The consultation with the doctor went into detail about the procedure, I'll be having high dose chemotherapy followed by receiving some of the stem cells that were taken from me on the 26th July. Each stage of the process involved signing a consent form.

I was then given a tour of the ward where I will stay in isolation until I'm fit enough to return home.

So other than a final trip to MRI this Friday (19th August) to have a chemo line fitted that's all the pre-transplant stuff done.

I will be admitted to MRI as an inpatient on Monday 22nd August when I will receive another course of high dose chemo this will be known as Day -1

The following day, Day 0, I will receive around 2 million of my own stem cells back via my chemo line.

The clock then starts ticking in terms of how quickly my blood counts return to a level where I am safe to go home. I will be in complete isolation, restricted to only 2 visitors a day, visitors that have to wear a gown and gloves before entering my room. Unfortunately children under the age of 16 cannot come onto the ward so I won't be able to see the children for the duration of my stay in hospital.

So I'm currently making practical preparations - updating my iPod with new tunes, making sure I've got headphones, puzzle books, reading material etc.... As well as toiletries, PJs etc

I've got a fridge in my room but I reckon having Captain Morgan along for the journey might be a bridge too far.

I'll update my blog from hospital so people can keep up to date with my progress and not feel like they are mithering Jen.

However as a final footnote I would like to draw your attention to a group of friends who are running the Wigan 10k on Sunday 5th September in aid of Myeloma UK. I did intend running too, however it's clear I won't be fit enough to do it, if I'm even out of hospital at that time.

They are truly a great bunch who have been training for a while (and sustaining injuries in doing so) so any donations would be very very welcome.

www.justgiving.com/fundraising/Steven-Martlew1

We Plough The Fields And Scatter

Following Monday's good news that there was enough stem cells in my blood stream Jen and I headed off to MRI yesterday morning for an 8.30am harvest.

Stem cells are harvested by a line out of my arm that pumps the blood from the vein under pressure, through a machine that using a centrifuge to spin and separate the blood. The stem cells then find their way into a bag for future storage, whilst the remaining blood is returned back to my body via a canular into my other arm.

The process takes around 5 hours and you need to sit incredibly still (particularly your left arm) - having a wee was a bit of an experience and not one for those who are slightly embarrassed!!!

Each stem cell transplant requires around 2 million stem cells. The stem cell team came to see me and were hoping for around 4 million, they always try to take enough for 2 transplants, stem cells can be stored for up to 10 years so if I needed another one I wouldn't have to go through this process again. Given my height, weight and the fact I'm a fairly, ahem, young patient they decided to try for 6 million cells.

The day was long and tiring, not just for me but for Jen. We finally left MRI around 4.15pm battling our way through the traffic on the Mancunian Way to get home at 5.20pm.

The stem cell team rang at 6pm to say they hadn't got the exact figure but it was between 10 & 12 million stem cells - so I didn't need to return today as they are happy they have got enough 😉

The transplant team came to see me whilst I was on the machine and I am booked in for the actual transplant - it all takes place during week commencing 22/8 although I have several appointments beforehand. However the harvest has gone well, it couldn't have gone any better and the first stage is now over.

Time to rest up now and get ready for the next stage.

Myeloma, MRI & Me

Its been a while since my last blog and quite a lot has happened.

For those that follow me on Twitter @SteveMartlew you will know that in November 2015 my health started to deteriorate. I lost a lot of weight and my para-protein levels rose (para-protein is a way of measuring the level of Myeloma in my blood). In December doctors at Wigan decided to start chemotherapy and therefore on 15th January 2016 I started on a course of VTD chemotherapy.

V stands for Velcade, T for Thalidomide and D for Dexamethasone. This combination of tablets and injections were given, along with a whole host of other medication to negate the side effects, over 6, 28 day cycles from January through to June.

I managed to cope really well with the chemo, maintaining a fairly normal quality of life and I'm proud to say I didn't take a single day off work sick. The tiredness and fatigue were really difficult to cope with at the end of cycle 5 & 6 however the results of the chemo were exactly what the doctors wanted.

A para-protein level of 44.5g per litre of blood reduced to an amount so small it was immeasurable at the end of cycle 6 which means I'm classed as being in complete remission.

The next stage of my treatment is a stem cell transplant. This a 2 stage process where High Dose Chemotherapy is given and then stem cells are taken from my body followed by another dose of chemotherapy and the stem cells given back to me. Whilst this doesn't rid  my body of the Myeloma, there is no cure, it should build in greater time before the Myeloma returns.

The first stage of my stem cell transplant started last Monday (18/7) with a trip to Manchester Royal Infirmary (MRI). As an outpatient I received intra-venous (IV) Ondansetron (anti-sickness), Mesna (a protective drug for my kidneys and bladder) as well as Cyclophosphamide (the chemotherapy drug). It was a long and tiring day although the staff were absolutely fantastic. The purpose of the chemo is to kill any residual Myeloma cells but also to trick the body in shutting down stem cell creation. Side effects of the chemo are sickness and nausea, hair loss, restlessness and tiredness.

The day after, Tuesday 19th July, I started GCSF injections, administered by me in my stomach. The injections result in the body going into over drive in the production of stem cells. The body produces so many stem cells that they spill out of the bone marrow and into the blood stream. Side effects of the GCSF injections are bone pain.

All in all its not been a great week but I still regard myself as being very, very lucky to be here to be fighting on. When I think of the friends I have lost to cancer it makes me even more determined to fight harder, but also very thankful for the opportunity to do so.

I returned to MRI this morning for a blood test to see whether there are enough stem cells in my blood stream to commence harvest. Apparently the greater the bone pain the better the chances that there will be. I was informed the bone pain in my back and hips has been likened, by female patients, to labour pains. If that's the case its a good job child bearing wasn't down to me, we would only have had 1 !!!!!

I received a call late this afternoon that the staff are happy with the level of stem cells in my blood and I will go straight to harvest tomorrow morning.

So another early start to get to MRI for 8.30am but hopefully they will harvest enough stem cell in 1 sitting tomorrow.

I will blog again tomorrow or Wednesday with an update.

A Brilliant Patient Experience

Earlier this year I decided, after a couple of poor experiences, to change where I received the care for my Myeloma. When I was originally diagnosed in 2011 I originally received my monitoring and care at Wigan via their general haematology services but quickly realised I wanted (and needed) something a bit more specialist so I transferred to Manchester Royal Infirmary (MRI). Travelling to Manchester and hanging round for most of the day in a specialist Myeloma clinic was a fairly draining experience but I considered it to be worth it as I was happy I was receiving the best care.

However time and progress moves on and during this time The Christie, the world famous cancer specialist hospital in Manchester, opened a specialist Chemotherapy centre attached to Wigan RAEI. The project was jointly funded by The Christie, Wigan and Macmillan and is designed to deliver chemotherapy and anti-cancer treatments for patients in the Wigan area.

The new centre got rave reviews from friend and colleague Mel Cochrane, who sadly lost her battle with cancer earlier this year. Her seal of approval came at the same time I had a couple of poor experiences at MRI with failed bookings and missing notes etc. but more importantly it seemed like nobody cared and therefore I asked for my care to be transferred back to Wigan in the hope I would receive a better patient experience at a more local centre. I was not disappointed.

 

Firstly the building is new and so creates a good impression. Reception resembles a hotel rather than a hospital as does the waiting area. The glass gives it an light, airy and welcoming feel.

Staff are keen to make you feel welcome and put you at ease.

The out-patient ward has 4 beds and around 8 treatment chairs. A chair for yourself and 1 for any visitor. A MacMillan volunteer ensures you are kept replenished with free coffee, tea or water and sandwiches at lunchtime.

There's a marked difference on how they administer my treatment too. Zoledronic Acid or Zometa to give it its trade name, is administered intravenously. The cannula is put in the back of my hand rather than my arm - this is to spot any allergic reaction sooner (the skin on the back of your hand is much thinner). A bag of saline is given first to ensure you are hydrated, then the saline with Zometa infused, then finally another saline bag that acts as a flush. I've noticed that the side effects I used to encounter at MRI are not as severe and I figure its connected with the hydration angle. I therefore ensure I drink plenty before and after to help this along.

There's some really nice touches too - there are 8 reserved car spaces for patients of the centre and I have been given a car park pass which allows me to park free - however its so local to me, a 10 minute walk, that I've not used these yet but its good to know other patients and their visitors get this benefit too.

There aren't many benefits to having cancer to be fair and there is impact both physically and mentally. The Christie at Wigan and MacMillan have looked to try and mitigate many of the issues within their control and so for this hats off to them.

In the age of customer experiences I think The Christie and MacMillan have got it just right. I feel that the care they deliver is patient centred and of high quality with a real human touch.

Don't get me wrong I wish I didn't have to go but as long as I do I hope I continue to receive my care at The Christie at Wigan - a brilliant patient experience.

Chasing "The Standard" - from Whelley to Elton Vale

Regular readers of this blog will know that I'm passionate about grassroots football. I think it's a brilliant vehicle for teaching youngsters about being better citizens, learning to respect elders and peers; learning about individual responsibility and being part of a team as well as how to win and more importantly how to lose. If the odd player goes onto bigger and better things then great but first and foremost it should be about fun and enjoyment.

My club, Whelley Alexandra, is lucky to be part of the Bolton, Bury and District Football League. The league promotes a respect, fun and enjoyment culture across countless playing fields every Saturday morning, and bar the odd numpty, most clubs and teams "get it". They understand that results aren't that important and that it is simply kids football, not the last 4 of the Champions League, but simply a group of kids having fun, playing football with their mates.

I like many others, fell into grassroots football as a dad that started helping out. That 7 year old that I first started taking to Saturday morning football is now a 16 year old, still playing for Whelley Alexandra I might add. I don't coach him anymore but his younger brothers, now under 11s. I am also secretary of the club and very proud of, and full of admiration for, the volunteers that facilitate 165 youngsters playing football each Saturday morning across our 10 teams.

Did I say 10 teams?

Oh I'm sorry its only 9 teams now!

Unfortunately, and with very heavy hearts, Alan Blazys (Chairman) and I took the decision to fold one of our u16s teams this week. The manager informed us that "he felt he had taken the team as far as he could" and that several of the players were not up to "the standard". Several of the players have lost interest and have discovered things that most 16 year old lads discover, I know I did, and don't want to continue. As a result there are simply not enough players to field a team, we would struggle to field a 5-a-side squad, and so the decision had to be taken to fold the team and withdraw it from the league.

The team has played in the highest division of the BBDFL for years and recently saw Tinashe Chakwana sign a 2 year scholarship  with Burnley FC. So the players that have played for the team for a while are decent players. Surely up to "the Standard"

So what exactly is "the standard"? I've looked through the BBDFL handbook and there doesn't appear to be a definition. I've also searched the FA regulations, nothing there either. So I have asked a few trusted coaching friends who have enlightened me. The standard is a phrase that coaches and managers use when they think a player isn't good enough. Ahhh now we have it. So if the players in your charge aren't up to the standard surely that reflects on your abilities as a coach?

If the players enjoyed Saturdays mornings instead of worrying about results then surely "the standard" becomes irrelevant. It would have been interesting to see if the manager would have quit had the team won their Lancashire Cup 1/4 final at Elton Vale on Sunday instead of losing 6-0?

The abiding memory many of the players from that team will have of Whelley Alexandra is not the years of fun and enjoyment they have had; nor the many friends they have made; the trips and parties we have had but it will be one of losing a 1/4 final and the manager walking away with 4 or 5 players which resulted in the team folding. That is the sad part.

In terms of "the standard" I think the only person that wasn't up to "the standard" was the manager we chose to run that team. The fault therefore lies with the Chairman and I. We must make sure our future managers / coaches are the right people and fully understand what we as a club are all about.

Saturday mornings, football and fun.

Our other under 16s team by the way plays in the bottom division, has 18 players signed on and a waiting list for players wanting to join. They're not the best team, but they don't half enjoy their Saturday mornings together. Credit for that must go down to the manager/coach and the players of course who don't take themselves too seriously.

If you were to ask them what "the Standard" was I bet half of them would describe a pub near to where Bolton County play!!!!

Food Banks and Football

I'm not a religious person. In fact I struggle to believe in God or any supreme being. So I read the Archbishop of Canterbury's recent article of food banks with interest (I hasten to add I read it on the BBC website and not in the Mail on Sunday!!!)  http://www.bbc.co.uk/news/uk-30366020


Sadly food banks are now an accepted part of our society, even here in Wigan, when 5 years ago they were unheard of. The people that access them aren't your stereotypical soup kitchen diners either. There are a lot of working people who simply don't have enough money to buy food once they've paid for rent, mortgages, fuel (gas, electricity, water and petrol). The story in the article highlighted the family that had to access the food bank because they needed 2 new tyres for the car so they could continue to get to work. This struck a particular chord with me.


I shelled out £130 on Tuesday for 2 new tyres for my car, 2 weeks before Christmas when your kids want the latest gadgets, clothes etc isn't a great time for that to happen. I'm lucky though that I'm not alternating food with Jen just to feed the kids. Don't get me wrong the kids wont be getting Xbox Ones each as neatly requested on their Christmas lists, but they'll do well and they're very lucky. Luckier than they'll ever appreciate.




This week my colleagues and I are trying to break the Guinness World Record for the biggest food hamper in the world. We are having Christmas jumper day and, in exchange for wearing your Christmas jumper to work, you need to bring in some food for the food hamper. The hamper will then be divided between the food banks in Leigh and Wigan in preparation for the busy time of Christmas.


The Wigan food bank is run by local charity The Brick http://thebrick.org.uk/ As well as provide support to Rough Sleepers they have a fantastic resource centre where the folk they are supporting get the opportunities to get some work experience and learn some key skills as part of their wider rehabilitation. The Resource Centre refurbishes furniture, bikes, computers and much more, and then sells them at discounted rates. The funds are then recycled into the project allowing growth.




Many rough sleepers are not there by choice. Many have made some poor life choices or had some bad luck and its the fabulous work of charities like The Brick that provide hope to some of societies most disengaged people.




I was delighted to see that the Latics fans considering boycotting the Boxing Day fixture at Elland Road due to ticket prices are encouraging fellow boycotees to donate their ticket money to The Brick  http://thisnorthernsoul.co.uk/2014/12/an-open-letter/ I was equally appalled that Leeds Utd were even asking £41 for an adult ticket, at Christmas, or any other time of year for that matter. To ask that sort of money for a second tier English football fixture between 2 sides realistically looking at avoiding relegation and achieving mid-table mediocrity is nothing short of disgraceful. Particularly given what I have discussed earlier in this piece.




Latics have had some bad press recently and Latics fans are often much maligned. However the lads I know are really decent and this shows that they care and understand where football fits in to wider society and, unlike some of their bigger neighbours, it isn't the be all and end all. The people that will be supported as a result of their kind donations might well have been Latics fans had their journeys not headed off down different paths.




Lets hope Christmas 2014 is the turning point for everyone. Lets hope the Brick goes from strength to strength in their support and rehabilitation of rough sleepers in Wigan. Lets hope our food banks go out of business because they are not needed any longer. Lets hope Latics smash 5 past Leeds and go on a run that sees them make the play offs and win promotion via another trip to Wembley.


Most of all I hope you have a very happy holiday.


Much love xx