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.
Saturday, 15 October 2016
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.
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.
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.
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......
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.
www.justgiving.com/fundraising/Steven-Martlew1
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
Wednesday, 27 July 2016
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.
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.
Monday, 25 July 2016
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.
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.
Thursday, 13 August 2015
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.
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.
Saturday, 31 January 2015
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!!!!
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!!!!
Wednesday, 10 December 2014
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
Saturday, 15 February 2014
Frank Turner & The Lesions of Doom......
Been an eventful week...
Sunday saw a very rare family outing to watch Frank Turner at the Manchetser Arena. It was Alex & Callums first ever gig and they participated with full gusto, singing every word, jumping and clapping at every opportunity. Despite Franks back problems it was a tremendous gig and would rank in the top 5 of my all time favourites. I hope to see him again in the future although that may well depend on my health more than his.
On Friday, Valentines Day, it was my monthly visit to Manchester Royal Infirmary. Not the most romantic of days for Jen, but my favourite day of the month as it's the only time Jen and I get together. We don't get to go out at night and there always seems to be someone shouting "Mum!" or "Dad!" fights to referee, or, tears to wipe.
Friday was important as we received the results of the recent skeletal survey I had. As feared the recent X-rays show a couple of lesions on my skull, evidence that the Myeloma is attacking the bone from the outside. Together with my high para-protein levels and high light chain readings point to disease progression although we have agreed to hold off with chemotherapy until further progression. The first batch of chemo is the most successful and so we want it to be at a time it will be most effective.
It's been a tough week for us both and we half expected the news we got. It's been stressful to say the least, made more difficult by Jens illness, but friends who have sent good luck messages and that have been genuinely rooting for us have made it more bearable. We are really grateful. It's a shame that we don't get more support from closer to home, but that's the beauty of families I suppose!!!
We continue to be positive and whilst these lesions are a black cloud we are focusing on the silver lining that treatment can be delayed for the time being.
In the meantime download some Frank Turner - hopefully you will be as uplifted as we were last Sunday. In one of his songs, I knew Prufock before he got famous, there is a line that sums up where we are at the moment.
"They help us with remembering that the only thing that's left to do is live"
Sunday saw a very rare family outing to watch Frank Turner at the Manchetser Arena. It was Alex & Callums first ever gig and they participated with full gusto, singing every word, jumping and clapping at every opportunity. Despite Franks back problems it was a tremendous gig and would rank in the top 5 of my all time favourites. I hope to see him again in the future although that may well depend on my health more than his.
On Friday, Valentines Day, it was my monthly visit to Manchester Royal Infirmary. Not the most romantic of days for Jen, but my favourite day of the month as it's the only time Jen and I get together. We don't get to go out at night and there always seems to be someone shouting "Mum!" or "Dad!" fights to referee, or, tears to wipe.
Friday was important as we received the results of the recent skeletal survey I had. As feared the recent X-rays show a couple of lesions on my skull, evidence that the Myeloma is attacking the bone from the outside. Together with my high para-protein levels and high light chain readings point to disease progression although we have agreed to hold off with chemotherapy until further progression. The first batch of chemo is the most successful and so we want it to be at a time it will be most effective.
It's been a tough week for us both and we half expected the news we got. It's been stressful to say the least, made more difficult by Jens illness, but friends who have sent good luck messages and that have been genuinely rooting for us have made it more bearable. We are really grateful. It's a shame that we don't get more support from closer to home, but that's the beauty of families I suppose!!!
We continue to be positive and whilst these lesions are a black cloud we are focusing on the silver lining that treatment can be delayed for the time being.
In the meantime download some Frank Turner - hopefully you will be as uplifted as we were last Sunday. In one of his songs, I knew Prufock before he got famous, there is a line that sums up where we are at the moment.
"They help us with remembering that the only thing that's left to do is live"
Friday, 7 February 2014
Reality bites
My colleague, boss and friend Vicky Bannister published a blog last year called "When carers go bad" it's brilliant and you can read it here http://vickyandclem.blogspot.co.uk/2013/03/when-carers-go-bad.html
I've recently encountered the same sort of thing. My Myeloma appears to be pointing towards the start of chemotherapy. My light chains are up significantly, I've got increased bone pain and my para-protein levels remain high. On top of that I have had repeat infections but more recently a chest infection that has knocked me for six.
So what do you do when you are battling all of this and your main carer, your rock, the person who maintains the equilibrium, the person who makes the house run, the person who also looks after her 82 year old mum falls ill. Well it all falls apart.
Jen has been really poorly. I don't remember her being quite so ill - even after emergency c-section which involved blood transfusions. The same chest infection has knocked her for 6, I would even say it was 7!!
So this week I've tried to, had to, do more to help. I've done a bit of cooking - was quite proud of my fish pie with potato and leek mash. Done some washing - didn't manage to run the colours, as well as do packed lunches, school runs and bits and bobs of shopping - we don't half go through milk - on top of not being A1 myself a having a trip to Manchester Royal for a scan.
It's made me realise how much Jen does and how she never stops, how running the house, looking after her mum, and me, and the kids, as well as working full time - eventually the tank becomes empty. It's also made me realise what good friends we have, friends who took time off work to pick Al & Cal up from school when I was in hospital and Jen unfit to drive.
It does make me worry about the future and how we will cope if Chemotherapy comes. But that's a worry for another day. The main thing now is to get Jen fit again. And I must help more to relieve the burden on her.
Next clinic is Friday 14/2 - Valentines Day. Update to follow.
I've recently encountered the same sort of thing. My Myeloma appears to be pointing towards the start of chemotherapy. My light chains are up significantly, I've got increased bone pain and my para-protein levels remain high. On top of that I have had repeat infections but more recently a chest infection that has knocked me for six.
So what do you do when you are battling all of this and your main carer, your rock, the person who maintains the equilibrium, the person who makes the house run, the person who also looks after her 82 year old mum falls ill. Well it all falls apart.
Jen has been really poorly. I don't remember her being quite so ill - even after emergency c-section which involved blood transfusions. The same chest infection has knocked her for 6, I would even say it was 7!!
So this week I've tried to, had to, do more to help. I've done a bit of cooking - was quite proud of my fish pie with potato and leek mash. Done some washing - didn't manage to run the colours, as well as do packed lunches, school runs and bits and bobs of shopping - we don't half go through milk - on top of not being A1 myself a having a trip to Manchester Royal for a scan.
It's made me realise how much Jen does and how she never stops, how running the house, looking after her mum, and me, and the kids, as well as working full time - eventually the tank becomes empty. It's also made me realise what good friends we have, friends who took time off work to pick Al & Cal up from school when I was in hospital and Jen unfit to drive.
It does make me worry about the future and how we will cope if Chemotherapy comes. But that's a worry for another day. The main thing now is to get Jen fit again. And I must help more to relieve the burden on her.
Next clinic is Friday 14/2 - Valentines Day. Update to follow.
Friday, 8 February 2013
Zometa Infusion? No thanks I prefer PG Tips
Its been a busy week since my appointment at MRI last Friday, hence my delay in posting this blog.
Overall the results remain good, my bloods remain as stable as can be expected which is good. As mentioned in previous blogs I suffer from bone pain in my hips and pelvis. That's why I fidget a lot when I'm sat down - Ive not got ants in my pants - honestly!!!
The specialist has decided that I need to start some treatment which as well as helping with bone regrowth will hopefully help with pain relief. The drug is a zoledronic acid with a trade name of Zometa. You can find out more about Zometa here When the specialist told me they would start this treatment he said "We will start you with some Zometa Infusions" I thought he was offering me a cup of herbal tea which I'm not keen on!!!!
I will have 15 minutes of intravenous infusions once a month at the same time as my monthly check up so that saves a second journey to MRI. First one is 8th March, the date of my next appointment and I'll let you know how I get on.
Overall the results remain good, my bloods remain as stable as can be expected which is good. As mentioned in previous blogs I suffer from bone pain in my hips and pelvis. That's why I fidget a lot when I'm sat down - Ive not got ants in my pants - honestly!!!
The specialist has decided that I need to start some treatment which as well as helping with bone regrowth will hopefully help with pain relief. The drug is a zoledronic acid with a trade name of Zometa. You can find out more about Zometa here When the specialist told me they would start this treatment he said "We will start you with some Zometa Infusions" I thought he was offering me a cup of herbal tea which I'm not keen on!!!!
I will have 15 minutes of intravenous infusions once a month at the same time as my monthly check up so that saves a second journey to MRI. First one is 8th March, the date of my next appointment and I'll let you know how I get on.
Thursday, 24 January 2013
Great club or simply great teas
When you are a young cricketer just starting out in the world of senior cricket you judge another club by the quality of their cricket teas.
Each Saturday and Sunday ladies, some men do get involved to be fair, but generally ladies, make the cricket teas. Some are simple affairs done on a tight budget generally sandwiches, crisps, salads and fruit/cake. Some however are more extravagant including warm food such as curries or chillies, hot pot or pies, Lasagne or pasties, chips, baked potatoes, ice creams, yoghurts, trifles and fairy cakes.
You will often hear younger cricketers, when they find out where we are playing next week say "Oh I love/hate it there.The teas are fantastic/crap" delete appropriately!!
As you get older though you judge a club on much wider issues such as the culture of a club or the facilities.
The culture of a club is about how they play the game, how they treat the opposition, opportunities for young players to play first team cricket - quite simply do they play the game hard but fair and are they the type of club you would be happy to have a pint with in the bar after the game?
Facilities are a slightly different kettle of fish. There are many clubs who have a great culture but simply don't have the money to invest in their facilities. They therefore struggle to attract new players or develop clear pathways from junior cricket into senior cricket.
Wigan Sports Club where I play cricket (quite badly I may add) and coordinate the junior section is one of those clubs. We have a great culture. This is largely down to the players but most credit should be given to club captain Mark Rowe. He has been instrumental in developing a fantastic culture at the club. Don't get me wrong when he leads the team out on a Saturday there is a steely determination in his eyes. His team play the game on the edge and play to win and on the odd occasion a player oversteps the mark, he instantly rectifies the situation and has a "quiet" word with the relevant player.
After each game the umpires score each team as to how they behave and how well the captain keeps control of his team. It's no coincidence that Rowie has received the top marks in this area, and Wigan have received the Spirit of Cricket award too, for the past 2 seasons.
We have though, struggled for years without investment in our facilities. The changing rooms and clubhouse badly need refurbishing. The cost to the club in utilities due to inefficient heating and lighting systems as well as essential maintenance costs each year is enormous. The cricket section badly need some new cricket nets and there are significant issues with drainage to the pitch too.
Now however we will begin to develop facilities to match our culture. Myself and Rowie set about applying for a grant from Sport England back in the autumn. We chose to submit a project to refurbish the changing rooms and the common areas in the clubhouse. If successful the work would benefit the whole club - Hockey and Squash as well as Cricket; would help attract new members and retain existing members.
The announcement today by the Sports & Tourism Minister of a maximum Inspired Facilities Grant of £50k is fantastic for the club.The club is match funding this to the tune of £31k meaning a £81k investment in changing room facilities at the club. We should be able to install energy efficient lighting, heating and hot water facilities - seeing a reduction in our utility bills. We should also see more attractive and functional changing rooms that require less maintenance too. We will also see new kitchen facilities so should see good cricket teas as well!!!
Not a bad effort for 2 blokes from Wigan - one a great cricketer, extremely intelligent, well educated man with thoroughly decent principles. Oh, and me!!
So hopefully over the next couple of years young and old cricketers of other clubs when they find out they are playing at Wigan the week after will say "Yes, they are a great club, great culture and great facilities. Oh and the teas aren't bad either!"
Each Saturday and Sunday ladies, some men do get involved to be fair, but generally ladies, make the cricket teas. Some are simple affairs done on a tight budget generally sandwiches, crisps, salads and fruit/cake. Some however are more extravagant including warm food such as curries or chillies, hot pot or pies, Lasagne or pasties, chips, baked potatoes, ice creams, yoghurts, trifles and fairy cakes.
You will often hear younger cricketers, when they find out where we are playing next week say "Oh I love/hate it there.The teas are fantastic/crap" delete appropriately!!
As you get older though you judge a club on much wider issues such as the culture of a club or the facilities.
The culture of a club is about how they play the game, how they treat the opposition, opportunities for young players to play first team cricket - quite simply do they play the game hard but fair and are they the type of club you would be happy to have a pint with in the bar after the game?
Facilities are a slightly different kettle of fish. There are many clubs who have a great culture but simply don't have the money to invest in their facilities. They therefore struggle to attract new players or develop clear pathways from junior cricket into senior cricket.
Wigan Sports Club where I play cricket (quite badly I may add) and coordinate the junior section is one of those clubs. We have a great culture. This is largely down to the players but most credit should be given to club captain Mark Rowe. He has been instrumental in developing a fantastic culture at the club. Don't get me wrong when he leads the team out on a Saturday there is a steely determination in his eyes. His team play the game on the edge and play to win and on the odd occasion a player oversteps the mark, he instantly rectifies the situation and has a "quiet" word with the relevant player.
After each game the umpires score each team as to how they behave and how well the captain keeps control of his team. It's no coincidence that Rowie has received the top marks in this area, and Wigan have received the Spirit of Cricket award too, for the past 2 seasons.
We have though, struggled for years without investment in our facilities. The changing rooms and clubhouse badly need refurbishing. The cost to the club in utilities due to inefficient heating and lighting systems as well as essential maintenance costs each year is enormous. The cricket section badly need some new cricket nets and there are significant issues with drainage to the pitch too.
Now however we will begin to develop facilities to match our culture. Myself and Rowie set about applying for a grant from Sport England back in the autumn. We chose to submit a project to refurbish the changing rooms and the common areas in the clubhouse. If successful the work would benefit the whole club - Hockey and Squash as well as Cricket; would help attract new members and retain existing members.
The announcement today by the Sports & Tourism Minister of a maximum Inspired Facilities Grant of £50k is fantastic for the club.The club is match funding this to the tune of £31k meaning a £81k investment in changing room facilities at the club. We should be able to install energy efficient lighting, heating and hot water facilities - seeing a reduction in our utility bills. We should also see more attractive and functional changing rooms that require less maintenance too. We will also see new kitchen facilities so should see good cricket teas as well!!!
Not a bad effort for 2 blokes from Wigan - one a great cricketer, extremely intelligent, well educated man with thoroughly decent principles. Oh, and me!!
So hopefully over the next couple of years young and old cricketers of other clubs when they find out they are playing at Wigan the week after will say "Yes, they are a great club, great culture and great facilities. Oh and the teas aren't bad either!"
Thursday, 17 January 2013
I will (un) follow - Social Media - Censorship, Offence and Shock
Im a lover of Social Media. It's power is immense. Recently I have helped source a printer for a charity event and solved a friends technical problems for a presentation - just through tweeting a friend.
I Tweet and I blog. I also use Facebook, Yammer and Linked In.
I find them incredibly useful in my work life as well as being very informative and entertaining in my private life. Recently though events have made me question how I use them and the appropriateness of my use.
The Chairman of the Bolton, Bury and District Football League (BBDFL), Warren Barlow, recently received a 5 month suspension from office, imposed by the Lancashire FA for inappropriate Tweeting. I don't know enough about the case to comment here, suffice to say that Warren is incredibly passionate about grassroots football and can often find himself in the middle of emotive arguments. However he was suspended for passing a personal comment in an official position.
A colleague of mine recently Direct Messaged (DMd) me on Twitter informing me of a BBC parody account that I may find funny and subsequently choose to follow. They wouldn't tweet me as they felt it was too rude. I looked at the parody account, followed and instantly retweeted. The retweet contained 3 swear words - 2 fucks and a bastard. I was happy to retweet but my colleague wasn't.
So what rules do you use when you are considering blogging, tweeting or posting? What is acceptable and what isn't.
The rule of thumb that I use is "Would I say what I say in an unfamiliar city centre pub?
I'm quite happy to talk football with anyone, no matter where I am, although I admit I'm less likely to be received warmly talking about Latics in Burnley or trying to convince a Rangers fan that Henrik Larsson is the greatest Celtic number 7 - even better than King Kenny!
I'm also quite happy to talk endlessly about music - although I'm not well up on certain genres like Dance, Reggae or Rap.
I can talk politics especially Social and Housing policy and indeed waffle on about virtually any subject as good as the next man or woman. I'm likely to use the word fuck quite a lot, I'm also likely to refer to some people as bastards and other mildly offensive swear words. I am not racist or homophobic and am likely to positively challenge anyone that is.
So that's the rule I use. If I offend you via my Social Media then I would probably offend you in the pub.
Other people often have different standards. I read with interest the conditions attached to Greg Hoffmans iPhone that he got from his parents for Christmas http://www.dailymail.co.uk/news/article-2255285/Janelle-Hofmann-Mom-makes-son-13-sign-18-terms-conditions-giving-iPhone.html in short his mum, Janelle, made him sign a 20 point agreement before he could use the phone. Condition 9 is "Do not text, email, or say anything to someone that you would not say out loud with their parents in the room. Censor yourself."
I Tweet and I blog. I also use Facebook, Yammer and Linked In.
I find them incredibly useful in my work life as well as being very informative and entertaining in my private life. Recently though events have made me question how I use them and the appropriateness of my use.
The Chairman of the Bolton, Bury and District Football League (BBDFL), Warren Barlow, recently received a 5 month suspension from office, imposed by the Lancashire FA for inappropriate Tweeting. I don't know enough about the case to comment here, suffice to say that Warren is incredibly passionate about grassroots football and can often find himself in the middle of emotive arguments. However he was suspended for passing a personal comment in an official position.
A colleague of mine recently Direct Messaged (DMd) me on Twitter informing me of a BBC parody account that I may find funny and subsequently choose to follow. They wouldn't tweet me as they felt it was too rude. I looked at the parody account, followed and instantly retweeted. The retweet contained 3 swear words - 2 fucks and a bastard. I was happy to retweet but my colleague wasn't.
So what rules do you use when you are considering blogging, tweeting or posting? What is acceptable and what isn't.
The rule of thumb that I use is "Would I say what I say in an unfamiliar city centre pub?
I'm quite happy to talk football with anyone, no matter where I am, although I admit I'm less likely to be received warmly talking about Latics in Burnley or trying to convince a Rangers fan that Henrik Larsson is the greatest Celtic number 7 - even better than King Kenny!
I'm also quite happy to talk endlessly about music - although I'm not well up on certain genres like Dance, Reggae or Rap.
I can talk politics especially Social and Housing policy and indeed waffle on about virtually any subject as good as the next man or woman. I'm likely to use the word fuck quite a lot, I'm also likely to refer to some people as bastards and other mildly offensive swear words. I am not racist or homophobic and am likely to positively challenge anyone that is.
So that's the rule I use. If I offend you via my Social Media then I would probably offend you in the pub.
Other people often have different standards. I read with interest the conditions attached to Greg Hoffmans iPhone that he got from his parents for Christmas http://www.dailymail.co.uk/news/article-2255285/Janelle-Hofmann-Mom-makes-son-13-sign-18-terms-conditions-giving-iPhone.html in short his mum, Janelle, made him sign a 20 point agreement before he could use the phone. Condition 9 is "Do not text, email, or say anything to someone that you would not say out loud with their parents in the room. Censor yourself."
So everyone views what is acceptable slightly differently. Mrs Hoffman, my colleague, Warren Barlow and I and probably the millions of people using Social Media at this very moment will all use a different rule of thumb to censor ourselves effectively.
The easy ones to rule out are the illegal comments racist, homophobic, threats to kill etc.. if you made those comments in a pub or in front of your friends parents then you are likely to be assaulted, arrested or both and would probably deserve it.
The rest its fair to say, is down to our audience.
The rest its fair to say, is down to our audience.
So what do we do though if someone says something that offends us? There are 2 options I suppose
1. We either challenge the comment and put our view across; or
2. We ignore it, possibly tutting like Skippy the Kangaroo, and move on to the next comment. In the pub analogy we might move seats or even drink up and move on.
On Social Media we can choose to unfollow or unfriend someone but, because we are British, we feel we might upset the feelings of the person we are unfriending or unfollowing.
So if Im in a pub and Im spouting off and I offend you - Im sorry but you either need to move seats or drink up and move onto another pub.
If I offend you via Social Media then unfriend me or unfollow me - I wont be upset
Waits for loads of unfriending and unfollowing........
2. We ignore it, possibly tutting like Skippy the Kangaroo, and move on to the next comment. In the pub analogy we might move seats or even drink up and move on.
On Social Media we can choose to unfollow or unfriend someone but, because we are British, we feel we might upset the feelings of the person we are unfriending or unfollowing.
So if Im in a pub and Im spouting off and I offend you - Im sorry but you either need to move seats or drink up and move onto another pub.
If I offend you via Social Media then unfriend me or unfollow me - I wont be upset
Waits for loads of unfriending and unfollowing........
Friday, 21 December 2012
It's the End of the World as we know it, and I feel fine
The Mayans predicted the end of the world today, appropriately on Mad Friday too!!!
11.10am passed without incident. I was stuck in the waiting room at Manchester Royal Infirmary in a Myeloma clinic for my final check up of the year. I was back at MRI for the results of my MRI scan on my pelvis. You may recall from previous blogs that they found cause for concern following x-rays that they thought were lesions caused by the Myeloma.
Unfortunately the MRI scan is inconclusive - there is some bone damage and there are marks on the bone but the consultant is not 100% sure they are caused by the Myeloma. Although my blood levels remain affected - the amount of Myeloma is high, the amount of calcium is high, kidney function is impaired and white cells are low - they remain stable; so a decision to closely monitor has been made.
The most effective course of Chemotherapy is the first one and so they don't want to waste this and whilst I am now borderline for treatment they want to wait until a clear symptom of end organ damage is present before they start. This can change quickly and so this is why I remain on monthly check ups with some clear warning signals to look for.
This is all round good news. It means I can park the disease and enjoy Christmas with Jen and the kids - my next check up is 1st February 2013.
So today could have been a bad one, the Mayans aside, but in the words of Michael Stipe "It's the end of the world as we know it and I feel fine"
Have a very Happy Christmas and healthy, happy New Year
11.10am passed without incident. I was stuck in the waiting room at Manchester Royal Infirmary in a Myeloma clinic for my final check up of the year. I was back at MRI for the results of my MRI scan on my pelvis. You may recall from previous blogs that they found cause for concern following x-rays that they thought were lesions caused by the Myeloma.
Unfortunately the MRI scan is inconclusive - there is some bone damage and there are marks on the bone but the consultant is not 100% sure they are caused by the Myeloma. Although my blood levels remain affected - the amount of Myeloma is high, the amount of calcium is high, kidney function is impaired and white cells are low - they remain stable; so a decision to closely monitor has been made.
The most effective course of Chemotherapy is the first one and so they don't want to waste this and whilst I am now borderline for treatment they want to wait until a clear symptom of end organ damage is present before they start. This can change quickly and so this is why I remain on monthly check ups with some clear warning signals to look for.
This is all round good news. It means I can park the disease and enjoy Christmas with Jen and the kids - my next check up is 1st February 2013.
So today could have been a bad one, the Mayans aside, but in the words of Michael Stipe "It's the end of the world as we know it and I feel fine"
Have a very Happy Christmas and healthy, happy New Year
Sunday, 16 December 2012
Summer v Winter
A discussion has started in the last week or so about the merits of switching winter football to summer. The debate has come about because since early November many of our weekend football matches have been postponed, either because of waterlogged or frozen pitches; or because in order to protect the pitches the relevant local authority has closed the playing fields for that weekend.
The advantages for playing summer football are quite clear. Playing in warmer conditions on firmer playing surfaces means players will develop better skills - you only need to look at Brazil and Spain to work that one out. Many of our youngsters have to develop skills like trapping a ball in an inch of mud, running through puddles or how to take a throw-in with frozen fingers rather than the skills of the likes of Fabregas, Messi, Ronaldo et al.
Other advantages are light nights - this enables games to be played midweek but also for clubs to train on grass thus reducing the cost of expensive astro turf training facilities, reducing club overheads in these crucial times of austerity.
By playing regularly you are unlikely to encounter players losing interest by having long periods of time in between games and training due to inclement weather.
There are some hurdles to overcome though. Player availability during the summer may be an issue - and that's not player availability in terms of your best player has been picked for the town team - it's around family holidays. Some families have caravans or tents and use the summer weekends to take short breaks - which may prevent their children's involvement.
Pitch availability may be an issue - many Councils use the 3 months in the summer to repair and reseed the pitches.
Finally the competition from other summer sports, in particular cricket, may affect player availability. Some that don't know how cricket works don't understand that it can be played 7 days a week at a club (depending on how many junior sides you have) which would prevent coaches and co-ordinators from staying involved in football whilst it was underway at the same time.
The overlap in March, April and May is tough enough now, without totally overlapping the seasons. Those 3 months see me out 5 nights a week as well as Saturday and Sunday and test my marriage to the full!! I often have to choose between coaching a football or cricket team and therefore all my players, football or cricket, don't get the best from me. In terms of administration we are at the outset of a new cricket season so there's membership, kit, league entry, team management as well as coaching (and I play a bit too so there's practice). The football season is coming to a close at this point so you are trying to bring together the end of season fixture congestion, as well as arranging end of season trips, presentation nights, fund raisers on top of usual coaching, fixture arranging etc.
So for me I am not in favour of football moving to summer. It is a selfish view I agree but I would be forced to choose between the sports and that means one of the sports I love, and am passionate about, would be robbed of my input and dare I say it, skills?
What's the alternative though? As a boss I have always encouraged my staff to come to me with a problem but also with a suggested solution. So if summer football isn't a viable option what can we do to negate the 3 month break we usually get due to bad weather?
I would suggest planning a 3 month break. Plan the league around a break between mid-November and mid February. This means small divisions, around 8 teams - 7 games between Sept & Nov and 7 games between Feb-May add. A couple of rounds of the cup into both halves and you have a season. There you go simple as that !!!!!!
Other more fundamental infrastructure is necessary though. On Saturday my under 9s Greens played Ladybridge at the ESSA Academy in Bolton. They have a quite brilliant 4G facility and to see it full of under 8 and under 9 footballers was brilliant. These are the facilities we need more of. Bolton Arena, ESSA Academy, Leigh Sport Village are a rare commodity and clubs should be looking to form partnerships with schools to raise the necessary funds to fund their construction. In my area Whelley, Aspull Juniors, New Springs Lions and Aspull RUFC could get together and apply for some funding to provide such as facility. This would be a fantastic community asset but may also create local employment as well as contributing to the wider health, social inclusion and Big Society agendas.
This is the way we can keep tradition with football played in the winter and cricket played in the summer. Besides if we have another summer like last year it may be cricket that looks to winter and not the other way round!!!
The advantages for playing summer football are quite clear. Playing in warmer conditions on firmer playing surfaces means players will develop better skills - you only need to look at Brazil and Spain to work that one out. Many of our youngsters have to develop skills like trapping a ball in an inch of mud, running through puddles or how to take a throw-in with frozen fingers rather than the skills of the likes of Fabregas, Messi, Ronaldo et al.
Other advantages are light nights - this enables games to be played midweek but also for clubs to train on grass thus reducing the cost of expensive astro turf training facilities, reducing club overheads in these crucial times of austerity.
By playing regularly you are unlikely to encounter players losing interest by having long periods of time in between games and training due to inclement weather.
There are some hurdles to overcome though. Player availability during the summer may be an issue - and that's not player availability in terms of your best player has been picked for the town team - it's around family holidays. Some families have caravans or tents and use the summer weekends to take short breaks - which may prevent their children's involvement.
Pitch availability may be an issue - many Councils use the 3 months in the summer to repair and reseed the pitches.
Finally the competition from other summer sports, in particular cricket, may affect player availability. Some that don't know how cricket works don't understand that it can be played 7 days a week at a club (depending on how many junior sides you have) which would prevent coaches and co-ordinators from staying involved in football whilst it was underway at the same time.
The overlap in March, April and May is tough enough now, without totally overlapping the seasons. Those 3 months see me out 5 nights a week as well as Saturday and Sunday and test my marriage to the full!! I often have to choose between coaching a football or cricket team and therefore all my players, football or cricket, don't get the best from me. In terms of administration we are at the outset of a new cricket season so there's membership, kit, league entry, team management as well as coaching (and I play a bit too so there's practice). The football season is coming to a close at this point so you are trying to bring together the end of season fixture congestion, as well as arranging end of season trips, presentation nights, fund raisers on top of usual coaching, fixture arranging etc.
So for me I am not in favour of football moving to summer. It is a selfish view I agree but I would be forced to choose between the sports and that means one of the sports I love, and am passionate about, would be robbed of my input and dare I say it, skills?
What's the alternative though? As a boss I have always encouraged my staff to come to me with a problem but also with a suggested solution. So if summer football isn't a viable option what can we do to negate the 3 month break we usually get due to bad weather?
I would suggest planning a 3 month break. Plan the league around a break between mid-November and mid February. This means small divisions, around 8 teams - 7 games between Sept & Nov and 7 games between Feb-May add. A couple of rounds of the cup into both halves and you have a season. There you go simple as that !!!!!!
Other more fundamental infrastructure is necessary though. On Saturday my under 9s Greens played Ladybridge at the ESSA Academy in Bolton. They have a quite brilliant 4G facility and to see it full of under 8 and under 9 footballers was brilliant. These are the facilities we need more of. Bolton Arena, ESSA Academy, Leigh Sport Village are a rare commodity and clubs should be looking to form partnerships with schools to raise the necessary funds to fund their construction. In my area Whelley, Aspull Juniors, New Springs Lions and Aspull RUFC could get together and apply for some funding to provide such as facility. This would be a fantastic community asset but may also create local employment as well as contributing to the wider health, social inclusion and Big Society agendas.
This is the way we can keep tradition with football played in the winter and cricket played in the summer. Besides if we have another summer like last year it may be cricket that looks to winter and not the other way round!!!
Sunday, 2 December 2012
2 steps forward, 3 steps back
Its been a busy couple of weeks, hence no blog.
The week before last I took the week off and redecorated the children's bedrooms. We also had Sky TV installed in each of their rooms as part of an early Christmas present.
Last week was busy at work. I am trying to develop a training programme to reach 2000+ tenants before April 2013. The training programme is in 2 strands - encouraging people to GET Online or Money Management Training and is part of our wider approach to readying tenants for the Welfare Reforms.
So I spent a lot of time in schools and Children's Centres looking at possibilities of training venues out in the Community. It was really interesting visiting schools in different areas and seeing their different approach to school life.
Thursday was Jens birthday and to say its been a rotten year for her is a bit of an understatement. I wanted to try and make it a special day and show her how grateful I am for her unstinting support. The children bought her a new coat and thermal gloves (great timing) and I bought her 2 tickets to watch one of her favourite bands, The Courteeners, in Manchester this Friday 7th December. They are one of my favourites too and so I hope she invites me!!!!!
I have also asked her sister Alison, to pick the children up from school that day and so the plan is to go into Manchester in the afternoon for a few beers and something to eat, then to the gig then last train home.
We don't get a lot of time on our own and so I hope we have a great day and it shows her how much I love her.
On Friday we went to Manchester Royal Infirmary for a monthly check up. As well as current blood levels they also had the results of my skeletal survey which I had done in early November. Unfortunately there is some cause of concern around my pelvis and my skull with irregularities which could be lesions. This is where the Myeloma sort of overflows from the bones and attacks them from the outside. It is usually accompanied by bone pain. So I have been referred for an MRI scan at MRI (confusing I know) and then back to see the consultant on the 21st December.
This is frustrating on a couple of levels. I have had pelvic pain for the last 18 months and complained to Wigan about it but after an xray they simply put it down to general wear and tear of a 40 year old. The consultant radiologist at MRI says it isn't wear and tear at all!!!
The second frustration is that after gearing ourselves up for Chemotherapy in October and then to be told that Chemo wont start I'll just be monitored, to be then told you may need Chemo again is like 2 steps forward 3 steps back.
I suppose that's what fighting cancer is all about. You have ups and downs. I know of 3 former colleagues of mine that have been struck down with a cancer of some sort in the last 3 weeks. 2 of them were in remission and they probably feel like its 20 steps back not just 3!!
It is what it is - my approach to life, family, work, football, cricket and music won't change. I'm still the same person and will approach it with the same determination and a bit of humour too. You do have to laugh. As a colleague of Jens says "You should have at least one good belly laugh a day". How True.
Am looking forward to another busy week this week. Lots more school visits and a service planning day with the Director, Group Managers and Service Managers on Thursday.
Then on Friday a day out with my best friend. Can't wait.
The week before last I took the week off and redecorated the children's bedrooms. We also had Sky TV installed in each of their rooms as part of an early Christmas present.
Last week was busy at work. I am trying to develop a training programme to reach 2000+ tenants before April 2013. The training programme is in 2 strands - encouraging people to GET Online or Money Management Training and is part of our wider approach to readying tenants for the Welfare Reforms.
So I spent a lot of time in schools and Children's Centres looking at possibilities of training venues out in the Community. It was really interesting visiting schools in different areas and seeing their different approach to school life.
Thursday was Jens birthday and to say its been a rotten year for her is a bit of an understatement. I wanted to try and make it a special day and show her how grateful I am for her unstinting support. The children bought her a new coat and thermal gloves (great timing) and I bought her 2 tickets to watch one of her favourite bands, The Courteeners, in Manchester this Friday 7th December. They are one of my favourites too and so I hope she invites me!!!!!
I have also asked her sister Alison, to pick the children up from school that day and so the plan is to go into Manchester in the afternoon for a few beers and something to eat, then to the gig then last train home.
We don't get a lot of time on our own and so I hope we have a great day and it shows her how much I love her.
On Friday we went to Manchester Royal Infirmary for a monthly check up. As well as current blood levels they also had the results of my skeletal survey which I had done in early November. Unfortunately there is some cause of concern around my pelvis and my skull with irregularities which could be lesions. This is where the Myeloma sort of overflows from the bones and attacks them from the outside. It is usually accompanied by bone pain. So I have been referred for an MRI scan at MRI (confusing I know) and then back to see the consultant on the 21st December.
This is frustrating on a couple of levels. I have had pelvic pain for the last 18 months and complained to Wigan about it but after an xray they simply put it down to general wear and tear of a 40 year old. The consultant radiologist at MRI says it isn't wear and tear at all!!!
The second frustration is that after gearing ourselves up for Chemotherapy in October and then to be told that Chemo wont start I'll just be monitored, to be then told you may need Chemo again is like 2 steps forward 3 steps back.
I suppose that's what fighting cancer is all about. You have ups and downs. I know of 3 former colleagues of mine that have been struck down with a cancer of some sort in the last 3 weeks. 2 of them were in remission and they probably feel like its 20 steps back not just 3!!
It is what it is - my approach to life, family, work, football, cricket and music won't change. I'm still the same person and will approach it with the same determination and a bit of humour too. You do have to laugh. As a colleague of Jens says "You should have at least one good belly laugh a day". How True.
Am looking forward to another busy week this week. Lots more school visits and a service planning day with the Director, Group Managers and Service Managers on Thursday.
Then on Friday a day out with my best friend. Can't wait.
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