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Sunday, 31 August 2014

Harder to Deal With Chemo

After going into hospital with a high temperature the next couple of days were more a case of getting back on track.  The day at hospital on the IV antibiotics had really taken its toll on me and kind of knocked me for six.

I spent the following days sleeping trying to restore some energy but I found it difficult.   On Friday I woke up to find I was getting another eye infection and some more cold sores, so a quick call to the doctors for some more medication and I was out to pick up some more eye drops.  It looked as though I had been boxing and my eye really swelled but the infection didn't take hold like the last time, but it was still sore.

On Saturday evening we had been invited to an evening wedding reception.   It was good to have plans and try to make a social occasion.   I had dropped the boys off at the grandparents for the night and Leonie and I had the night off.  The evening started with a few abdominal pains for me but we were soon on track for getting to Barton Grange.

We had a good night out, I didn't drink but we had fun and I even made an appearance on the dance floor.  Unfortunately the food wasn't gluten free for the majority so I literally ended up with a plate of carvery meat finished off with a big bag of sweets.

The next day we were meeting the grandparents at the Ribble Steam Railway to have a look at the museum and have a ride on the train.  It was a good day out and it was fun to see the boys enjoying themselves.

Monday was spent building up my energy to get ready for chemo which was to be on Wednesday.   In the evening we went to Pizza Hut with the boys and when we got home we had some ice bucket challenges to complete.  Leonie did hers and we had also planned that she would also do mine, especially as I had been in hospital last week and was due to have chemo.  But just as I was getting ready to start filming my video, I had some severe abdominal pains again but much worse than before.  After an hour of struggling with the pain it passed as quickly as it had started and Leonie was able to complete her second ice bucket challenge on my behalf, and she did a great job of both of them.

I had my oncology appointment on Tuesday to check everything was going well.  I like having these meetings, as it gives me a chance to catch up with my doctor and nurses and go through any symptoms that I have as well as how I am coping with the treatment generally.  Another reason I like the appointments is the fact that they all think I'm doing really well and a boost like this does wonders to helping through chemo, especially when it comes from the professionals.   To finish off my day I popped into the blood clinic to provide a sample to check I am ok to have chemo the following day.

I quickly went to work where I offered to do a quick job for them as they were struggling to get it done and I went to get the boys before an early night ready for the next day in hospital.

Friday, 22 August 2014

That Was Unexpected

Leonie was up and out early on Wednesday so she could have her theory test.  Before she left I told her that I was cold but was happy that I had two hot water bottles next to me in bed; Oscar and Sidney.

After she left we got up and went down for breakfast.  I didn't feel too good and took my temperature,  it was 38.6 degrees.   I took my medication and had some breakfast but I was shivering uncontrollably.   Leonie called shortly afterwards to tell me she had passed her driving theory test and I told her about my temperature and shivers, she decided to rush home.

When she arrived back,  I took my temperature again and it was still high so I called oncology who told me to come in as soon as possible.   I arranged for my mum to drive me as I was unable to with my shivering.

When we got to Rosemere,  we went up to the day unit and I was shown into a room by my nurse for the day, Liz.  She took my obs and started her work; she took some blood to grow some cultures and then started me on a IV antibiotic drip.

Within about half an hour I started to feel much better.   Liz continued to take my obs during the morning.   I began with a heart rate of 112 and blood pressure over 130, by the time I left my obs had dropped to a heart rate of 73 (normally I'm around 50-60) and blood pressure of 115 which was more normal.  My temperature also fell to around 37 degrees.

While I was having my IV a doctor came to see me and prodded and poked about my abdomen,  some of the scar tissue was still sore so it hurt a little but he couldn't find any signs of infection.   My bloods came back normal too.  They would put the spike in temperature down to either infection or Neutropenic Sepsis; if it was the latter I would need to stay in over night so it wasn't looking good.  I called Leonie to let her know.

As the day went on I got so much better and responded well to the treatment so with no signs of it being caused by infection or going Neutropenic they decided to let me go home; but not without two courses of antibiotics!

We got home about half 3 and everybody had rallied around.  My mum for taking me to hospital,  Leonie’s mum coming over to look after the kids, in laws were organised to look after the boys the following day to give me a break and get some rest and most importantly Leonie for looking after me and taking it all in her stride.

I had started the day in a bad way but by the end of the day I was feeling so much better, granted I was absolutely knackered but everything was under control.  It was scary to go through the experience and without an explanation as to why it happened.  I know that my immune system is low after chemo but I had got an infection.  Perhaps it's my body saying enough is enough and giving itself a break from fighting the chemo.  It actually really took a lot out of me and I was planning to rest up as much as possible over the next few days, so I won't be running this week at least.

Thursday, 21 August 2014

Lego Days

My mornings are pretty slow at the moment, we have some cuddles while Leonie gets ready for work.  We get up when she leaves and I take some tablets.  I can't eat for half an hour so we watch cartoons together; Mondays choice was Lego Ninjago.  I make breakfast for the boys and then I have mine followed by more tablets.  We get washed and dressed, by which time its usually past 10. 

Today we decided to make lego models.  We have loads of sets which are now all broken up, so while the boys played and built crazy spaceships and houses I tried to get some pieces together to build a set - this took most of my day, minus a few breaks to feed the kids and get them drinks and I still didn't get all the pieces.  The kids imagination runs wild when you give them free reign with building - I love to see their weird creations.  Later on Oscar wanted to play lego batman, I didn't argue so I could have a go too!

Tuesday we had planned to go out with Jacqueline, my mother in law for lunch and we went to Barton Grange garden centre.  I had a nice fish pie but was still hungry so had some ice cream as well.  I bought Leonie a cactus and the boys were treated to some more lego which were quickly built with excitement when we got back.

We stayed for a takeaway at the in laws, after I had picked up Leonie from work and we got off home quickly so Leonie could revise one last time before her test the next morning.  She didn't feel too confident about the hazard part but her practice tests at home had been good, I had faith in her to pass.

The last couple of days I had felt good and mentioned to Leonie that I was considering running again soon.  My teeth were still hurting a little but I hadn't had any other problems; I have my eating under contol, just plenty of rest.  So I thought if I could try to fit in a 5k run sometime soon, I should be able to do it and get back into it slowly.  I do miss running.

The Welsh Invade

I called the doctor when I got up on Saturday about my painful mouth and got a prescription for some medication.  I had to drive to Euxton to pick it up so combined that with a quick shopping trip to get a few bits.  I treated the boys to a present of a lego plane for being so well behaved over the last couple of weeks, they really have been great and not pushed to far.

Once we were home I settled down for an afternoon of football as the Premier League started today.  Everton were playing away to Leicester and I hoped we could start the season with a win, all was going well with Everton winning 2-1 until Leicester got an equaliser in the 86th minute, gutted!

Shortly afterwards Gemma, Sam, Jessica and Jack arrived and they were soon followed by Ema and Dan.  We had planned to make a Chinese for everyone.  I really miss Chinese takeaways.  I can't eat them as they have soy sauce which I can't eat on my Coeliac diet.  I had bought some GF soy sauce and duck.  My sous chef, Sam, and I did a good job and we had shredded duck with sweet chilli sauce, prawns and duck with sweet and sour and all with egg fried rice, I loved it as did everyone else.  This was followed up with my version of an Eton Mess, delicious.

We had a few drinks and played a few games, an angry version of pictionary - girls v boys,  I think the boys won and we didn't cheat!

After a cooked breakfast Gemma and Sam left to see some family so we took Ema and Dan to Owd Nells to have lunch, my choice was a little spicy but very nice, vegetable Thai curry.  We then changed a flat tyre on Ema and Dans car as a screw had found its way into the tread and then sent them on their way home as we went to get a couple more fish for our tank.  This takes our fish school to 9.

Later in the afternoon we chilled out after a busy couple of days and Leonie began her revision for her driving theory test for later in the week.

My tooth was still hurting and it was painful to eat.  The days are still tiring for me and sometimes its hard work looking after the kids but at least I'm on the mend, even if its a slow process, it's better than the alternative and I have to keep reminding myself of this when I have a bad day.

Twin Visit

On Tuesday I had arranged to go into work and meet with my manager, Karyn, and HR about returning to work in September.  It seems like this recovery time has flown by and I haven't done much, but I suppose thats the point of recovery.  I'm looking forward to getting back to work, mainly for a bit of structure around my week as at home I lose track of what day it is.

The meeting was good and we agreed that a phased return would work best as I still struggle with energy levels.   It was also good to see my work buddies and I realised how much I have missed these people, we are like a big family at work.

Wednesday we had a visit from my twin, Janette, and her kids, Arthur and Alice.  They had come up for a few days from Wiltshire.  We chatted in the morning and filled each other in on what we had been up to and in the afternoon Leonie and Janette took the kids to the park so I could have a nap.

As Leonie was back in work on Thursday,  Janette and my mum came over and we went out for lunch to the Ancient Oak in Cottam as they have a soft play area for the kids.  We had a drink while the kids blew off some steam running about and playing.   When we got home my mum and Janette again took the kids out so I could have another afternoon sleep.

It's a shame Janette lives so far away and we don't get to see her very often but it means a whole lot more to see her when she visits.  I wouldn't be able to drive the distance to visit her at the moment but we will get down when we can.

The sun came out on Friday so I decided to take the boys out on their bikes.  We didn't go far and took our time and went to visit my older sister, Sheila.  She had been on holiday to Spain so we hadn't seen eah other for a couple of weeks and she looked tanned.  The kids all played together before we made our way home for the return bike trip, I'm pretty sure that the boys walk quicker than they ride but it was fun.  I also think it's important to get them into different sports at an early age and get them active so it was a good trip out.

Apart from the tiredness, towards the back end of the week my teeth started hurting and I had had this during my previous chemo sessions so I knew what it was, oral thrush.  I could see the whiteness at the very back of my mouth and immediately started with the mouth wash I had previously been prescribed hoping it would clear up, but as the days went on it became more painful to the point where I was struggling to eat on Friday night so I decided to call the doctors in the morning to try and get some more medication.

Friday, 15 August 2014

Trip to Llandudno

Wednesday, 13 August 2014

Trip to Wales

We tried to get an early start on Sunday to get the most time in Wales, due to my tiredness this happened to be 10.30 which was early enough for me.  We arrived in Wales around lunch time and met up with Ema and Dan.  Our friends Gemma and Sam and their two kids, Jessica and Jack, were due to come over too.  It was like a big reunion as we all went to uni together and it was great to see them all.  I miss these guys and wished they lived nearer but Llandudno isn't too far away I suppose.  Throughout this year both Ema and Dan have been great, even though they live a distance away from us,  a week doesn't go by without some comminication between us. 

We decided to walk along the prom to get the kids out and although it was a liytle drizzly (but very windy!).  We walked down the historic pier and ended up in a new ice cream parlour called The Looking Glass.  It was delicious and they make their own flavours to order, highly recommended. 

We made our way back to Ema and Dans and had an evening of drinking and fun.  After a lie in the next day was much better weather wise and decided to go to the beach again.  We walked along the pebbles looking for crabs and shells and enjoyed the sunshine.  Later we went for some lunch before making our way back to Preston.

Even though it was only one night away, it was a good break and we all enjoyed the time away from home.  I had been feeling so tired before going but the sea air made me feel refreshed and energized.  I like going to North Wales,  its a slower pace of life and sometimes it's needed to just recharge.

Chemo Comedown

The days following chemo kind of passed me by in a blur.  I am pretty much writing them off.  I felt terrible, wasn't sleeping and was exhausted.   Leonie’s parents helped out with the kids on Thursday and Friday and our friend Lousie came over on Friday and stayed most of Saturday to help out as I was pretty much good for nothing.

I was probably in a worse state than I realised at the time as I don't really remember much of the 3 days and as I said it was a bit of blur.  I really didn't think it would be so bad, even though I had been warned, after the previous three chemo sessions I thought it would be manageable.  

I had a constant headache, felt hot then cold, had the awful metallic taste, and felt generally unwell and sorry for myself.  I was lucky to have the support that I had, I don't think I was a fit parent for those couple of days.

We were going to visit our friends Ema and Dan in Wales on Sunday and I was going to drive.  I needed sleep to be able to do it safely so after napping throughout the last couple of days decided to have an early Saturday night so we could make the journey.

Only two more full dose chemo sessions to go and then its over; there is light at the end of the tunnel.  Then I can get back to what I love, being a proper dad and spending quality time with my family instead of sleeping or dozing all the time and missing opportunities to do something that will benefit all of us.  I really want to go running too, but at the moment this is a little bit beyond my current capabilities so it will have to wait!

Chemo Again

The morning started early at 7am, we were due at Rosemere for an 8am start.  We made it in time, even with my morning lethargy!   We had a choice of seats as we were the first and then I was hooked up again for the next 8 hours.

As the IV was doing its job I noticed that my left arm (with the drip) had become ice cold,  much more than before.  The nurse was also surprised that my veins were also very prominent as chemo can damage to the veins, but mine had coped well with the toxic drugs.

About mid morning the trials nurse,  Claire Searle came to see us.  She always visited when I was having chemo but we had missed her in the last couple of meetings.  She spent about an hour with us and went into great detail about the operation as she had received all the notes from Mr Ball.

It was really interesting to find out about everything that went on during the operation.  After meeting the geneticist a couple of weeks back, she kind of ruled out the cancer being genetic but will look into it to make sure; that leaves two options in my mind of why it happened.

The first being a bacteria called H. plyori.  This bacteria, if left untreated will cause stomach cancer.  The notes from Mr Ball and pathology state that none of this bacteria was present so did not cause the cancer.  That then leaves the only other possible explanation,  a bad roll of the dice and being unlucky.

We also discussed some of the pains I have been getting throughout my recovery and Claire was able to empathise with me; but also she put this into context too.  She told me that as I had exceeded expectations so far on my recovery and had stopped taking pain relief she was confident that these are just pains where my gut is readjusting.  She also told me that most people are still on constant pain relief and that sone are still in hospital even after 8 weeks, I decided to be quiet and quit complaining!

Just before lunch we had some more visitors,  Auntie Norma and Auntie Margaret.   They are like a double act and help with fundraising for Rosemere.  They have been family friends for ever and are both involved with the Scouts.  They only stayed a short while but it was good as they always have a laugh and lighten the mood.

We had our lunch and the chemo was flowing well, I had not set off the alarms all day.  About mid afternoon my manager, Karyn, came to visit.  She brought gifts too, a box of GF Cornflakes.   She also brought with her 4 t-shirts, one each for the boys and one for me and Leonie.  I didn't expect them and they were awesome.  A picture of superman with my face and the words CHEMOMAN!

We finished up chemo about 4 and got home to see the boys, my mum was looking after them.  I was a little anxious going into chemo this time as I had been warned it would be more difficult;  but it had all gone well and now it was time to relax and recuperate.

Wednesday, 6 August 2014

Recovery From Reigate

Much of the following days after visiting Reigate were spent resting.   The trip down south had really exhausted me.  However, on the Saturday we went to witness our friends Amy and Tom get married.  It was just down the road and we took the boys to the ceremony.  It was a really pleasant service and had some quirks too, when signing the register the choir sung "When I'm 64" by the Beatles.

My mum babysat in the evening so Leonie and I could go to the evening reception of the wedding.  They had a brass band and we really enjoyed the evening and danced along to the band, even joining in with the conga!

I continued to rest over the next couple of days and we had a little trip to Beacon Fell.  When we reached the summit the views were amazing, it was such a clear day.  It's not a big hill (enough for me at the moment) but its easily accessible and easy enough for the boys to conquer the mountain.  Both the boys have a real sense of adventure and they both asked to climb bigger hills; it made me think about how much I miss camping and walking, something which we do quite a bit but have obviously put on hold for this year.  On the way back we went to get some more fish for our new tank, we now have a mixture of Zebra and Leopard Danio's.

Tuesday was spent in anticipation as I was due to begin the second rounds of Chemo with my fourth session.  I felt a bit anxious as last time I had Chemo (around 10 weeks ago) the treatment targeted the tumour and now I have no tumour.  The doctors had warned me that this time may be more difficult due to this fact.  However, I managed to cope with the Chemo fairly easily last time round, if it is more difficult this time then I am sure I can cope with it.

Saturday, 2 August 2014

Running In Reigate

My day started at 2.30am, I got up listening to the rain and had my breakfast and a cup of tea before getting a taxi to the bus station.  As a first time user of Megabus, I expected just a couple of seats taken so early in the morning, but the bus was rammed, so much so that the only seat left was occupied by the feet of a sleeping passenger which I had to wake up.

I got comfortable for the 6 hour bus journey and tried to settle for some sleep.  I snoozed a couple of times but didn't sleep; I did watch the sun rise though which was pretty fantastic. 

Going into London,  I kept an eye out for any landmarks and saw a good few of them, I noticed that we also did a extensive tour of the monopoly board.  We arrived about 10 minutes late but I still had plenty of time to catch a train to Reigate via Redhill.  After arriving in Reigate it was brilliant sunshine so I decided to walk to the meeting point; it said it was only a few minutes away.  I started a brisk walk and shortly after I began I got a sharp pain in my abdomen,  similar to a stitch.   I powered through the pain with a few grunts and as I started up a hill wished I had booked a taxi.  It was hot and I was sweating and walking up a never ending steep hill.  The pain eased as I reached the summit and I turned into the car park meeting point, the walk had taken 40 minutes; so much for being a couple of minutes away!

I was early so sat in the sun on the grass and looked out over the south east and a very good view.  I had some lunch and my medication before seeing the Mens Running Team.  I introduced myself and was given my prize goodies; two jackets, a t-shirt, shirts, cap, trainers and bag all from the North Face, I looked snazzy in my new gear.  For the next 3 hours we did hundreds of photos and an interview in the heat of the day.  I chatted to the coach, Anne-Marie Lategan and the other competition winners, swapping running stories and anecdotes.

I was given a lift back to the station to start my journey home.  My bus was leaving at 5pm.  I was back in London in plenty of time so got something to eat at the station.  The journey home had a few more stops so was to take a little longer for the return leg.  Unfortunately there was also an accident on the motorway so we were delayed by a further hour. 

I got home just before midnight and found it to be raining again.  I got a taxi home and after telling Leonie all about my adventure and showed her my goodies I went to bed for a well earned rest.

Friday, 1 August 2014

More Appointments, More Birthdays

It has almost been 6 weeks since my operation and today was my appointment with my oncologist,  Dr Mitchell.  First we dropped Oscar at his friends house for the day and then Sidney at Granny's house.  We popped into work quickly to arrange my return to work in September, then it was off to hospital.

We were called through to the see Dr Mitchell quickly and in the room was Janette the specialist Upper GI nurse and instead of Claire, Stephanie was present.  Dr Mitchell came through and I told them about some of my pains and how I was doing.  They were very impressed with my recovery so far and were not surprised that I had been out running either.  Dr Mitchell prescribed some medication to help with digestion and also some extra vitamin supplements.  Janette took my weight and I was pleased to find out that I was 52kg, only 3kg less than my original weight.

It was then arranged that my second round of chemo would start the following Wednesday.   While we were waiting for the ward to confirm the day of chemo, Janette asked if I would be interested in being part of a RPH app, they wanted to video me and put it as part of the app which is planned to be downloaded by future upper GI patients.  I agreed and Janette said she would be in touch.  We also discussed about getting a gym membership arranged for me to help with recovery.   All in all a very good meeting with loads of positives.  They even agreed for me to keep running as long as I don't push it too far.

It was my mum's birthday on Wednesday but first I had an appointment in Manchester at St Marys hospital.   My mum came over to look after the boys and we wished her a happy birthday and gave her her present before setting off to Manchester.   We made it to the appointment just in time as one of the receptionists didn't know where we were meant to be going - genetics was on the 6th floor and there were good views over the city to the pennines and it was a clear day.

In the appointment we discussed my family tree and those of whom had suffered cancer.  The geneticist told us of a certain syndrome (Lynch Syndrome) which causes some genes to mutate and it's possible this may have happened, but unlikely from the information that I provided.  It was an interesting meeting with loads of info and it sounds unlikely that the my cancer would be genetic but they would do further investigation to be certain and hopefully be able to rule out the Lynch Syndrome.

We got back home and we went out for tea with my parents to celebrate mums birthday.  The last couple of days has been information overload, tomorrow I will be having a long day on my own so we went to bed early so I could get up to catch my bus in time.