Saturday, 15 October 2016

(a) Pathy, Pain, Pastry and Pride

Its been a good while since my last blog and you'll understand the reasons for that once you've read on.

My last blog was on day 16 of total isolation. Those that follow me on Social Media @SteveMartlew will know that I was released, sorry, allowed to come home, on day 18. That was 18 days of isolation and 16 days post transplant. I write this on day 46 post transplant.

Firstly my blood results are fairly stable, there's the odd blip here and there, but overall the doctors are incredibly pleased with my progress, as I am. I seriously under estimated how poorly I would be both in hospital and initially when I came home and how slow recovery would be. This week has been the first week when I have begun to feel fitter and stronger.

My recovery hasn't been aided by people who I thought were friends, who I thought loved me and cared for me. Knowing what I and my family had been through, not just since July but throughout 2016, these people decided to hurt me and my family and the emotional strain that this has caused has certainly delayed my recovery and has changed my future significantly.

I have always been a busy person. I am busy at work and busy at home with junior football and cricket commitments, my governor role at Mabs Cross Primary School which I am incredibly proud of as well as "normal" family life. So to go from being on the go all the time to just sitting all day because by simply walking upstairs you become exhausted, has been a major culture shock and something I have really struggled with. These last 3 weeks have been a real struggle as I sit alone all day, waiting for the children to come home from school, not able to go anywhere for fear of infection, but not able to do anything else. Daytime TV is shocking, other than the food channel and its this that has inspired me to start baking.

Baking gives me something to work my mind on, its an art that I'm keen to master and it uses time up in the day. I've had a go at making Madeira cake, Flapjacks, Treacle Toffee, Banoffee Pie and Baked Egg Custard all with varying degrees of success. I'm gonna have a bash at biscuits and Carrott Cake next week and I've already had requests to bake a Christmas Cake and Christmas Pudding!!! I've bought things like ceramic baking beans for baking pastry cases blind as well as new tins, cases and utensils whereas in the supermarket Id normally be more interested in the beer isle!!

I'm keen to get stuck into some real work though and I have one eye on getting back to work as soon as possible. The doctors are keen for me to have 3 months off work post transplant, however I need the mental stimulation, hustle and bustle of my job much, much sooner. There's only so much dough you can knead. I hope to be back before Christmas doing the job I love and making a difference to peoples lives.

Finally last night I was invited by friend and colleague Councillor Chris Ready to be part of the Our Stars Awards ceremony. An annual event that celebrates the contribution volunteers make to our communities in Wigan. I knew I had been nominated for an award but certainly didn't expect to win anything. However I am very honoured, proud and humbled to have won Volunteer of the Year 2016 in recognition for the work I have done around junior football, junior cricket and at Mabs Cross Primary School.

I got into volunteering like most people do through their kids. Liam wanted to play football and cricket and so I became involved in junior sport at the same time I also got involved in the governing body, 12 years ago. My vision for junior sport was never to find the next Andrew Flintoff or Wayne Rooney it was always to provide an opportunity for as many children, from whatever background, to get involved in sport and hopefully make better citizens of the future by teaching them the correct values of life.

My vision for Mabs Cross is slightly different as my role in more accountable, however I want Mabs Cross to be the best Primary School in Wigan so that the children that go there are happy, safe and are given the best education to give them the best life chances possible.

I hope I will be remembered for that rather than any awards, although by someone saying thank you does make it all worthwhile.

Tuesday, 6 September 2016

Stem Cell, Cell Hell

Sorry for the delay in my blog update but I hit the dip that was promised soon after my last one and haven't really felt up to it since. Today is day 16.

Last Thursday I was moved from my atrium view room to a room with no windows and a significant walk to my designated bathroom. Not good for someone with sickness and diarrhoea but weve managed so far without any accidents. I've mastered the clenched buttock mince down the corridor to the bathroom.

Also not great for someone who was struggling with the mental aspect of isolation. I even asked Jen to bring a shovel so I could tunnel my way out. Then I remembered I was on the 3rd floor. I'm not proud to say I lost my temper with the nursing staff and said some things I probably shouldn't have done. I have since apologised and I think all is forgiven.

My health deteriorated on Friday as my blood count hit zero, the high dose chemotherapy from 12 days previously having the desired effect. Extreme fatigue as my body tries to deal with the chemotherapy and the new stems cells and the injections that promote even greater stem cell activity.

I received platelets on Friday and Saturday as well as IV ABX for an infection that was showing in my bloods. Luckily the infection doesn't seem to have materialised.

I seem to be over the worst as my blood counts have begun to rise and the doctors are very pleased and I am now classed as engrafted as the stem cells are now in the bone marrow and are producing healthy blood cells as well as multiplying correctly too. So everything is looking fine.

I missed some key milestones this week, taking the boys for their school haircuts - they had to go alone and seeing the children off to school on their first day today. That was particularly hard, I've not missed one yet and to wish them good luck via Skype wasn't quite the same

I am reminded how lucky I am though. Last night a patient on the ward died and cancer claimed another victim. I know there are people who read this blog who have lost loved ones and therefore whilst it's been hard here in my prison cell, I know I will be fortunate enough to walk out of ward 44 in the next week or so and go home to my family. Others havent been that lucky.

Will update in the next few days.

Monday, 29 August 2016

Day release, deep clean and diarrhoea

This weekend saw ward 44 closed on Sunday for a 6 monthly deep clean. Patients are moved to other wards in the hospital for the day whilst the ward is deproxed & deep cleaned. The doctors had indicated earlier in the week that if on Sunday I was well enough and my blood levels were safe I could spend the day at home on day release.

This was a fantastic incentive and something to really look forward to. On Saturday when I asked the doctor whether I would still be OK to spend Sunday at home she said I could spend Saturday there too as long as I cam back at 9pm.

So Saturday and Sunday I spent at home. It was great to see the kids - we didn't tell them so it was a mega surprise for them when I walked in and there were lots of tears. It was also good to actually walk out of my room, to walk on carpet at home, have a bath, sleep for an hour or 2 in my own bed.

It was also nice to spend time in my own environment with Jen - although she was that busy trying to make my short stay as comfortable as possible I'm not sure she sat down for much more than 10 minutes.

My blood levels are on the decline which is to be fully expected and I have developed diarrhoea which again is par for the course but the visit home have given me the spur to tackle the forthcoming weeks events with renewed vigour.

This is tough, tougher than I ever thought it would be - the psychological side in particular but I remain positive and am determined to get home and get better as soon as possible so I can get on with the next part of my life.

Thursday, 25 August 2016

Ho Ho Ho (not so Jolly) Green Giant

Following Monday's high dose chemotherapy I received my stem cells back on Tuesday. It was a bit of anti-climax to be honest - 6 months chemotherapy, high dose chemotherapy x2, stems cell harvest to be given my cells back in a 15 minute transfusion. I'm not complaining, some people have to have 20 bags of transfusions over 2 days, my cells were so concentrated that I only needed 1 bag which is quite rare. I like being rare.

The preservative they use when freezing the stem cells after harvest results in a sweetcorn taste and smell during and after the transfusion. Jen says I smell like the Jolly Green Giant!!!

I was admitted onto ward 44 on Wednesday morning and have a room with a view of the atrium which is where Manchester Royal Eye Hospital is. It's great for people watching.

I'm in isolation with strict restrictions on me and people entering my room/visitors etc.. and I am incredibly bored - as those who follow me on various forms of social media will testify - their timelines will be full of my postings and retweets - sorry 😕

My blood counts are expected to start to drop from today and I will become poorly over the weekend as the Melphalan chemotherapy wipes my immune system out. Then my system will begin to build up again - a sort of reboot of my bone marrow - and hopefully I will improve enough to go home.

I remain positive and keep telling myself it's a short term pain for a long term gain. I know I am lucky and I do think about people who were close to me who have lost the battle with cancer. Ward 44 in particular brings back difficult memories.

Thanks for all your messages of support - it is overwhelming the number of messages I have received.

I will update when there is something to update about. In the meantime have a lovely Bank Holiday Weekend.

Monday, 22 August 2016

It's in, but there's no room at the inn....

Just a quick update from today. It's been a long day....

Arrived this morning and started the pre-meds - a diaretic, anti-sickness and steroids (all IV) combined with a myriad of tablets too.

There was a delay in the chemotherapy drug called Melphalan - it's so toxic that it's made up in the lab and only has an expiry life of around 2-3 hours. Upon checking it, the pharmacist noticed some matter floating in it and rejected it - therefore a new batch had to be made. This meant I only received it at around 4pm. That also means I will only received my stem cells tomorrow at around 4pm (there has to be 24 hours between).

Unfortunately there was an urgent admission, someone who is very poorly and therefore I will be spending the night on the day unit - which is now closed, as there are no spare beds.

I've got the whole unit to myself 😃😃😃

So step 1 is complete - the High Dose Chemotherapy is in my system - I'm likely to feel the full effects by weekend.

I'll get moved onto the ward at some point tomorrow when they manage to create some room and will hopefully receive my stem cells too.

Will update tomorrow......

Friday, 19 August 2016

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.

Wednesday, 17 August 2016

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.