Music Matters

Music is important to me, I enjoy listening to music and music helps me through crisis times or enhances everyday experiences.  My favourite bands are Radiohead, Mogwai and Slint.  I really like Mogwai and I always go back to Mogwai in times of distress for some reason, Mogwai are my safety blanket.

Eight years ago my brother died of pneumonia at the age of 29.  Just before he died, Mogwai had released an album, Mr Beast.  One particular song on that album I played almost on repeat for several weeks after David's death; it helped me through that difficult time.  The song is Friend of the Night and I recommend it to anyone, no words, just music - I urge you to listen and loose yourself in the music.

In January this year, Mogwai released another album, Rave Tapes.  At the end of January, we went to see Mogwai at Bridgewater Hall in Manchester, another great gig (I have seen them about 7/8 times). I really quite like one song in particular on the new album, it's called Remurdered.  The gig was on the Monday, as I found out about my cancer on the Friday.  This song has helped me through this time. I class Mogwai as my favourite band, for these reasons, they have helped me through two quite difficult times.  Now I am listening to Remurdered on repeat.

I did a full day at work on Friday and for a couple of reasons it was quite an exciting day.  Firstly I confirmed with the Lancashire Evening Post about a regular weekly column, focussed on health, fitness and well being.  I also get to promote any charitable events during the period that I write the column.  Secondly, my boss was pretty pleased with a piece of work I have been doing over the last week or so and hopefully we can start to implement it soon.  Lastly, I went to a gig with Dave at the Continetal in Preston.  The band were called Labasheeda (from Amsterdam) and they were supported by a local(ish) band India Mill.  India Mill were good, but one or two songs sounded a little to similar to U2, which was a disappointment as I don't like U2.  Labasheeda were promoted as sounding like Slint and Sonic Youth, and that is a good assessment of them, they were really good, I enjoyed the gig, both bands were good, but Labasheeda were right up my street.

It was relaxing to get out for a night and socialise.  It took my mind off things and I felt normal, the only thing missing was Leonie, otherwise a good night out.  I got home pretty late and was knackered.  Tomorrow I have the boys on my own for the first time since finding out about the cancer, lets hope I'm on form and the boys are well behaved.

Thrush Thursday

After posting about my lack of symptoms, I knew I was tempting fate.  On Thursday I woke up and the pain in my tooth was incredible.  So much so that it was difficult to open my mouth.  Leonie inspected it and said it looked a little like thrush in the back of my mouth; Oscar had had oral thrush as a baby and when I looked in the mirror and saw the whiteness of the gum, I agreed with Leonie's diagnosis,  we joke that by the end of this, we will both be professional medical practitioners!

I called the oncology helpline and as it was out of hours (7.30), I was directed to the cover line.  The lady was really helpful, instructing me to book an appointment with my GP, and even advising which drugs and sundries to request.  After 8am I called the doctors and was offered an appointment at 10.40, but after she took my name I was given a 9.40 appointment,  silver linings, I get fast-tracked.  I let Karyn know I would be late for work and dropped Sid at my mums while I went to get checked out.

I was due to see Dr Chikhalikar, not Dr Ravi.  Dr Chick has been at the GPs as long as I can remember.  When I went in he told me he was sorry to hear about the cancer, but that he was reading the blog.  He told me that it was good and that other patients should be more positive as it goes a long way to helping mental attitudes but also to good health too.  I think sometimes people underestimate the power of a positive outlook, I know I don't.  If you look at life with a positive eye, then you can achieve anything.  I have known some people who don't see anything positively, or struggle to anyway, and this in turn leads to unhappiness.  I believe you make your own happiness, you are the controller of your own emotions.  For example, I haven't let cancer get me down, it has just made me more determined to achieve things I dreamed of previously.   Now I know how precious life is, so now I want to do as much as possible with mine, if I fail in some aspects, I fail, but as batmans dad said, "why do we fall, Bruce? To learn how to pick ourselves up again!"

Dr Chick checked my mouth, and he confirmed it was oral thrush. He pescribed me some amoxicillin, mouth wash and nystan oral suspension which is cherry flavoured and quite nice.  More tablets to take but almost instantly I felt a relief of the pain.  I picked up Sid, then dropped him at nursery on my way to work, and managed to be at my desk by 11.  Another day, another appointment done.  The pain eased quite a bit throughout the day, but it didn't disappear altogether. 

In the evening I was feeling much better, so I organised to go out for a run with Lisa.  I have been running years, and Lisa is one of the people I sometimes run with.  She is training for the Great North Run, so it was good to get out with a purpose.  We didn't go far, about 7k, and we jogged round at a slower pace than normal.  This is my first run since starting chemo and I could tell.  My calves were tiring quickly.  The run itself probably gave me a mental boost.  When I got back, I was tired but happy and I had a feeling that I could take on the world.

Running for me is more than just a healthy activity.   It gives me a psychological lift.  I always feel better after a run, no matter what the distance, a sprint to the shops or a marathon.   During a run, I may curse and wonder why I'm doing it, but afterwards I think how lucky I am to be able to run and I feel great!  Others have also felt the benefits.  My birthday falls around the time of the Preston 5k and 10k so a couple of years ago I asked my friends to sign up for one of them.  Some did and some continue to run, Stacy for example is taking on her first marathon  this year in London, she is running strong and I wish her luck as she tackles the distance, quite a feat for anyone - I hope she enjoys it and continues to run afterwards (running is quite addictive!)

The run really did drag me out of a bit of lull, not that I was upset or depressed, I suppose I was bored, and Leonie always says that I am better after a run, maybe it's my route out of boredom and a great reliever of stress.

Summer Plans

Monday and I was back at work but first I had to give some blood.  I arrived at my GPs and was due to be seen at 8.30.  I arrived early and sorted out my repeat pescription for iron and waited.  While I was sat in the room, reading some leaflets Dr Ravi came to see me, we had a nice chat and he checked I was ok before signing my pescription. Dr Ravi explained the trainee doctor was running a bit late and told me to get in touch if I had any problems, I like my GP, he is always so friendly.  The doctor arrived just after 9 and invited me to the room, her manner was very polite and reassuring, she asked why I was there so I explained about the cancer, she was shocked and apologetic.  I don't mind people apologising, it's probably something I would say, but it's not their fault, and I don't really want to hear a sorrowful tone, I always try to be upbeat, even about cancer, but sometimes it throws people, I am not apologising for my approach, it's how it get through it.  On my way home I picked up my pescription and met Leonie who had dropped off Sid and Oscar, we walked home together, before she left for her free coffee from Booths, and I left for work.

At work I started to feel ill, like I was actually going to be sick, rather than just feeling sick, so asked if I could go early as I had forgotren to take my anti sickness tablets.  I left work around 2pm and got home, took an anti sickness and had a bath; Leonie was good enough to bring me a brew, and I just led in the water and relaxed.  It was bliss and as always I had my two little visitors to check up on me.

I am thankful that no real symptoms have hit me hard yet.  So far all I have experienced is the initial loss of appetite, but this was soon replaced by a unabating hunger, hence the reason I have put on about a stone since January.   I am quite a thin person and I get jokes about this all the time, I even encourage them, but the best one was that I will have to give the boys t-shirts back as they won't fit me any more if I carry on with the weight gain. As well as this there was again an initial insomnia, however now I am getting more tired, and I am managing with the sleep I have/get but will probably need to increase my sleep soon as I am getting more tired as this process continues.  The only other symptons are a bit of toothache, but I get this every so often with my wisdom teeth; and the feeling of sickness tied in with my reverse phantom stomach/black hole, now thats a weird sympton and an even weirder feeling.

In the evening Zoe and Laura came over for our weekly catch up.  It's always good to see friends and these two are some of the best.  Always good for a giggle and always really supportive.  I told them of my plans to build a BBQ in time for June, and by the end of the night we had sorted out free bricks and some help in building it, all through the powers of facebook.  A pretty awesome result.

Tuesday and I decided to go to work as early as possible as my colleague wasn't to be in today and I wanted to see if I could do a full day.  My work pals all check on me and Karyn reminded me to check my temperature when I went a bit too red, but by 3pm I was starting to tire again, I lasted until 4pm before asking to get home.  I picked up Sid and went to my mums to get Oscar.  I had a brew and a catch up with my parents and I mentioned about my plan to build another BBQ, I had previously built one in our old house which was a success, but this new plan is a little more extravagant.  We waited for Leonie and once she arrived it was back to ours for an early night, dreaming of my new plan.  It's always good to have project on the go, unfortunately I rarely finish one before starting another, hopefully with a bit of help, I should do this one!

A Sunday Slice

We got up around 8.30 and Leonie asked if I could check her finger, so we unwrapped the dressing from last night and as soon as we did the blood flow returned, no arguing she was off to hospital! Paul took her while Amanda and I got the boys ready.  No sooner were they dressed it seemed and they were back, with a well dressed finger.  She has to dress it for a week and it should be fine within three weeks.  The patient becomes the doctor.

As it was warm I decided to catch some sun, top up my vitamin D.  I stood in the garden drinking in the suns rays, and it felt like I got some energy, it was fantatstic to stand there, I felt like Superman, getting his powers topped up!  To take advantage of the glorious weather we decided to take the boys to the local park.  It was a really good example of a park to be honest, small stuff for the kids, climbing frames for the school kids and then teenager swings and zip line type stuff. I enjoyed the basket swing and I am contemplating getting one, it was seriously comfy and I could lie in it for a summer of surgical recovery.

After a quick lunch it was a drive back home.  Same as the way down, John drove me, and Leonie and the boys went with Jacqueline.  We met up at Stafford services and had some tea, the boys were treated to a happy meal box and the adults had a coffee or orange juice. It was a race from the services back home, John and I won which was surprising.

We got home and I had received a card from Japan, I love these cards, they are so detailed and put our British cards to shame.  They are mostly pop up cards and are really intricate.  It was from my brother-in-laws brother, Ian, and family and wished me strength for May 5th, Japans Boys Day.  We went to bed early as we were all pretty tired after a fun weekend in the sun.  Hopefully there will be plenty more this year, the weather really does help to lift the spirits and we had had a good weekend which was helped by the glorious sunshine.

Tugging on the Thames

Saturday we woke and had a slow mornin  as the boys were all playing.  I had a shower and we left for the party.  It was Pauls 40th, he had hired a boat and we were going to tour up and down the Thames.  I had previously been on the Thames as a child on a narrow boat holiday with my family.  On that occassion, my twin, Janette, ended up in the Thames after trying to catch a duck.  Hopefully this time won't end the same way, I think 9 children were due to be on board!

It was a beautiful day, the sun was out and there was a slight breeze.  It was a glorious March Saturday.   We left the riverside at Caversham and headed towards Oxford.  The whole journey was so relaxing and tranquil.  We sat at on the front of the boat, drinkig cider and watching the Berkshire countyside slowly drift past, the boys (in fact all the children) were really good.  Sid even made a friend with Callie, a slightly older girl; he always likes an older girl!  He dragged her around the boat for the entire afternoon.  Both myself and Leonie agreed that this is what life should be all about, sat in the sun, watching the world go past, no rushing about but enjoying what the world has to offer.

Unfortunately the afternoon came to an end and no-body ended up in the water.  We made our way back to Amanda and Pauls, our base for the weekend.  Leonie had arranged to meet Becca and Ian, who will be getting married later his year.  We put the boys to bed and they went to bed so quickly, they must have been shattered.  We walked to the local pub to meet Becca and Ian.  Much of he conversation was around the wedding, but Ian and I share a passion for running.  He recently completed the Reading Half Marathon in a PB time, which he dedicated to me, thanks Ian!  I tried to get him to up his distance and join me in ultra running next year when I am back fighting fit - you have to keep your goals, just some readjustments in terms of time frames!  I told him about our plans to run coast to coast, he seemed suitably impressed.  They asked a lot of questions about the chemo and cancer and I am really quite open about it so have no problems answering questions.  At the moment, it is sitting quite easily with me.  I am coping well with the chemo and I am in no pain so can get on with most daily activities, it's just a case of simply getting tired more quickly than normal, let's hope the rest of chemo is like this, if it is, bring it on, I have no problems with it.

We were dropped back and everyone was going to bed, I got ready and led in bed wondering where Leonie was.  A few minutes later she came in and asked me to help her in the bathroom.  I thought she had broken the sink or something, but when we were in the bathroom, she revealed her finger covered in blood. I asked her to wash it so I could check it and saw she had sliced her pad off her finger, she explained she was getting her toothbrush out of the washbag and caught it on a razor.  We couldn't find the missing bit of finger and I washed it again, it would not stop bleeding.  I wrapped it up as tight as possible with a gauze and wound some tape around it.  We went to bed quite late, hopefully it will be ok by the morning.

Tuesday

After a restless night, I woke up and decided I was ok for work.  Getting the boys ready, as well as myself, is getting a little harder, but then Leonie has been superb - I don't know where I would be without her.  I usually take Sidney to nursery on Tuesdays and Thursdays and today was no different.  On the way Sid and I always chat, mainly random topics, whatever goes through a 3 year olds head, and the subjects change rapidly.  I'm sure all parents can relate to this situation.  But today Sid was different, in a way he seemed concerned for me.  He started off by asking about gluten free and food I can eat/not eat.  I think it started from it being pancake day.  After a while the subject evolved into asking questions about my tummy.  I always try to be truthful with my kids, telling them straight up an answer if they ask a good question.  Sid asked if after my operation to take my tummy, would I still have skin?  I told him that of course I would.  That one question, for some reason made me cry. Here I was sat in a traffic jam in the middle of Preston on the nursery run, crying.

I gathered myself together and managed to get Sid dropped off.  I went into work and settled down for the day ready to work. The only problem was that I couldn't shake the worry and panic I was feeling, stemming from such an innocent question.  During the day, I had to have a few trips to the bathroom, just to get myself together, and I don't mind admitting that I really did struggle to keep the crying at a minimum.  I was just having a bad day, and although everybody I came across was cheery, I was not.  I emailed Leonie and told her about my bad day.  She emailed me back telling me that I was strong, stronger than most, and reminded me I had only had chemo 4 days prior and yet here I am, sat at my desk at work.

I know loads of people go through the big C battle every day.  Some struggle, but I have to remind myself that I am young, I have something worth fighting for and I do not give in.  I struggled the rest the day and Leonie was again my rock when I got home.  We cuddled,  we went to bed.  Another day done, it has been a hard day, but another ticked off.  Tomorrow is another battle and hopefully an easier one.

Unexploded Bombs

I am now 5 days into my first chemo cycle and today I woke up so much happier.  I couldn't remember when the last time I moved my bowels, but I knew that it had been over three days today, minimum.  If nothing happened today, I would be ringing the hospital.  I mentioned this to Leonie as I woke up, she was a little concerned as diarrhoea and constipation are listed as sideaffects, and when they hit triggers, you may need to be admitted to hospital.  Today was the trigger day in my mind.  I sat over my bowl of cereals and contemplated the prospect of a stay in hospital, so soon in my chemo.  I didn't contemplate too long as soon I was rushing upstairs.  A while later I came back downstairs with a beaming smile.  I felt so relieved, and light!  This one act put me in such a good mood for the rest of the day.  Off to work I went.

Karyn at work has been great, I have been doing shorter days, about 9.30-4.30, and she has been more than happy to accomodate this.  I now even have a car park space about 2 feet from the front door in case I need to leave, work have been great.  One of the other team leaders, Luke, came over and said I looked a bit red.  This had been a theme for the last couple of days.  The joke was that I probably look healthier than ever, with a nice red glow, in reality it's probably increased blood pressure making my skin flush red.  But Luke seemed more than concerned about this flush. A quick temperature check (36.7 celcius) and then some time spent outside to cool down. While we were outside, Luke said he was genuinely worried about my colour and went on to say that I was a nuclear disaster waiting to happen with all the drugs.  I found that very funny.

In the evening, it was Oscar's parent evening at school.   The teachers were so pleased with him, and this makes you happy and proud as a parent.  Our instructions from his teachers were to challenge him more with problems at home, simple maths and writing.  He loves that kind of stuff, so hopefully after my operation, when I have some time at home, we can work on building his confidence and help him reach his potential, he is such a bright lad, like his dad really (lol).  On our way out of school Miss Carter, the headmistress, came out to see us. I again felt like a celebrity, she put her arm around me and was geniuniely interested and had a sympathetic ear to my story so far, she asked some questions and then mentioned that we shouldn't worry about Oscar, they would ensure he was ok during school.  Speaking to people like this and hearing kind words really does ease my mind, especially where the kids are involved.

I continued at work on Thursday and Friday as usual on a slightly reduced day but still working.  At the moment I feel great, although the last two days I have had an unusual feeling.   It's like an opposite phantom stomach feeling. I have been so hungry (as opposed to the decreased appetite at the beginning of the week) and whatever or however much I eat I am still hungry.  It's like the food has found a black hole and its disappearing somewhere.  I thought I best check my weight, so I weighed myself and found that for the first time ever, I had breached the 9 stone barrier, I was officially the heaviest I had ever been, I have become fat, there will be no end to my misery (I know I'm far from fat, but I hope this rate of weight gain doesn't continue, mainly for the sake of my wardrobe).

Friday is always a bit more relaxed than other days at work, and I managed to leave early.  We had planned to travel south for my brother-in-laws 40th.  I had asked not to drive, so John (father-in-law) had agreed to drive me and Leonie's mum was driving Leonie and the boys. It will be good to get away for a break, hopefully I will stay fit for the weekend.  My biggest worry at the moment is that the doctors, and everything I have read, have stated that the second week of the cycle is the worst part.  I just hope that I can cope with it as easily as this week has been.  They also mentioned that the treatment is compounded, so will gradually get worse over time.  I am worried about it, but again Leonie is there on my shoulder telling me not to worry, I can beat this and will deal with it as I always deal with things, with a smile on my face, I intend to do it that way.

Sleepless Nights, Lazy Days

On Saturday, as the boys were staying over at Grannys, both me and Leonie stayed in bed for a long time, finally getting up about 10am (even though we woke at 7am).  In total I had about 5 hours sleep so spent the morning lazing around.  Leonie had prepared me my medical breakfast of 10 tablets, to have along side my rice crispies.  I had a long bath before the boys came back, it was nice just to have a relaxing morning, the two of us, without any interruptions.   Don't get me wrong, I love my boys, but after a day of chemo it was appreciated.

My mum came over to check if we needed anything from a supermarket just as Leonie's mum was dropping of the boys.  My mum got some bits for us and as the afternoon drew on I needed to lie down, so went upstairs for a nap.  Then we had some tea and got the boys to bed before attempting to go to bed ourselves.  However, I wasn't able to sleep.  With the cocktail of drugs and a blur of a day under the influence of the drugs, I stayed wide awake until late again.

I was good, not really having any major sideaffects, heck it had only been 24 hours, but I was weary and couldn't sleep.  Tired without sleeping made me fuzzy and although I didn't do much, I just couldn't.  On Saturday particulary, I found it hard to interract fully with people for some reason, I kept myself in my head.  Sunday and Leonie was due back at work.  I was to have the boys, but my sister and mum had both offered to look after the boys.

We woke on Sunday and again I hadn't had much sleep, which is probably due to the steroids.   Leonie went to work and then my mum came over and we went into town for a little bit.  I bought myself a new picture for the hallway and we went to see mummy in work.  We all had lunch at home, before going to my sisters for the afternoon.  She kept me fed and watered and the kids all played.  We were even treated to a play written by her three girls, Amelia, Lottie and Evie, and starring all 5 of the kids.  Again it was great to have the support of my family and the kids are innocent so don't worry about you, even if the things going around your head aren't nice.  Having both Sheila and Dave with medical backgrounds is also kind of good as you get their professional take on the situation, probably something not many people get.  However, sometimes too much information can worry you more.

We went home, had some tea, the boys have been great, playing nicely and generally being well behaved.  They went to bed and we led on the sofa before attempting to sleep again.  The night was a bit easier on Sunday and although I didn't sleep all night,  I had more sleep than the previous two nights.

Back to Work - Mini Milestone

On Monday I wanted to go back to work, and went in as normal. I was stopped everywhere, everyone asking if I was Ok and checking up on me.  People may see this as bothersome, but I find so much support in this, people really do care, and that goes a long way with me.  OK, I didn't get much actual work done, but it was good to be around people, I was able to take my mind of things and it was relaxed.

I started to get messages from people in the office and also friends.  I had been made a celebrity. The story that I was interviewed for by the Lancashire Evening Post had been published.  If you haven't seen it in print, don't worry the link is here:

http://www.lep.co.uk/news/you-don-t-expect-cancer-when-you-re-a-33-year-old-runner-1-6474519

I went to the supermarket at lunch to buy a copy of the paper and I was stood in the entrance reading the story.  It brought tears to my eyes, thinking about the boys and seeing it all in print.  With the newspaper article, the start of chemo and the general feeling unwell from the drugs, things are starting to hit home, pretty hard.

I went back to work and everyone was really chuffed about the article.  It was a good story, and the pictures were good too.  A double page centre fold spread.  Leonie text me later with a picture of a sandwich board outside out local off licence.   It was a lot of attention and although the people at work know the story from the triathlon last year, there were still plenty of questions.

This year I have been to hospital loads, but last year was not without its mishaps.  I have been running for years and have done marathons, but in 2013 I thought I could go one better.  I wanted to do a triathlon and decided upon the Helvellyn tri.  This is a mile swim in open water, 38 mile ride around the lakes and then a 9 mile run up and down Helvellyn.  I knew swimming was my weakest discipline but thought that if I could get over that, the rest would be easy.  I trained all year, with open water swimming, brick sessions and so on.  However the week preceeding the tri, the temperature plummeted and the water was cold.  I entered the water nervously, I was slow but I kept going and I could see the shore line approaching.  Four hundred meters to go and I was dragged out of the water unconcious and with mild hypothermia.   My first ever DNF.  I was devestated.  I had never been beaten, I had finished everything I had tried, apart from this.

After a month of "what ifs" and "what nows", and generally feeling unwell, I went to the doctors and Dr Ravi thought I could be coeliac from my symptons, so advised I get checked.  This involves a blood test and endoscope.  The blood test confirmed coeliac but the next step is to have camera.  The endoscope was an horrific ordeal, not pain but just gross.  That one thing was pretty grim so far.

I had to wait for the results so that would take some time.  In the meantime however, I thought it would be a good idea to try and break a world record.  I do stupid things like this and the one record I had my eye on was "most t-shirts worn at once".  The record stood at 256 t-shirts.  I had enough shirts, and some help on the night in November I tried for the record.  Unfortunately, I couldn't beat 105, but I nearly collapsed trying.  It was three stone in weight with just 105, it was crushing me and I had to be cut out of the shirts pretty fast. It was a funny night, but that was the second near miss of 2013.  Then into 2014 ... sorry I digress.

After work on Monday, I went to see Dr Ravi again and we chatted, he asked about my attempt to quit smoking, and I was proud to tell him that I had not had a cigarette for 4 weeks.  I had the nicotine patches for only a week. I do confess to using a electronic cigarette, but I am now cutting down on that too, a mini milestone ticked off.  I booked in a blood test for next week, and he checked I was ok, looked at my stitches and then he prescribed me my calcium, "chewable tutti frutti" and another load of GF food.  I picked up my new items and went home to bed tired and happy, another day done, hopefully more sleep tonght.

A Few Photos

The first photo is from when I had to have my second CTR in Royal Preston Hospital which is in South Durham, obviously!

The second is from St Marys Hospital in Manchester, thought its was pretty apt and filled me with a good spirit for the day!