Thursday, 19 December 2013

Merry Christmas!!

My blog posts are usually reflective on the happenings of 2012, and this one is no different.

This week last year was Paul's first 'chemo week'.  On the Monday we travelled to Addenbrookes to attend his chemo clinic appointment.  He had blood taken and we were shown round the chemo unit where he would be having the treatment.  We had been told by Papworth that he could have it on Tuesday (and then he would be fine for Christmas!?!) but he had been booked in for Thursday.

On the Thursday we travelled back for 9am ready for treatment to commence.  Paul was shown to a nice comfy chair and I was given one of those wheelie office chairs.  The treatment took 9 hours, so you can imagine it wasn't the comfiest of chairs to sit on.  Nevermind, that was a very small price to pay for what Paul had to go through.  Paul's nurse explained everything to us and we had a bag of tablets to bring home with us.  We left the unit around 6pm.

Half an hour after leaving the hospital and whilst driving home Paul had to open the car window to be sick!  Great we thought, that has had a very quick negative effect.  I stopped in a layby but we then managed to carry on our journey to my parents house.

Paul was sick a further two times and I was straight on the phone to the emergency help line number.  They suggested I call our doctors out.  I did this and we made our way home to await their arrival.  Two very nice on call emergency doctors came to the house and gave Paul some tablets to stick in his cheek.  They left and said they should work quickly but Paul might be sick one more time.  He was sick three more times so I rang them again.  They came out and gave him at injection at around midnight.  We were then able to both get some sleep.

By just before 9am the next morning though, Paul was being sick again.  I rang the hospital and they asked us to make our way back to the chemo unit.  Our drive there was quite interesting.  Paul by this point was just feeling so unwell and exhausted, he had to sit in the back of the car with a bucket and his head against the window.  We made it without event and I was luckily able to drop him right at the doors of the chemo unit and I went to park the car (and make the mad dash across the hospital to get to him).

Paul was put on fluids and monitored closely.  They also prescribed a much stronger medication for sickness.  He was transferred to the ward but told he would more than likely be able to go home that night.  The doctor came to see him and gave us the choice of him staying in or not.  We took the staying in option so that we knew he would be ok before coming home again.  He came out of hospital the next day Saturday 22nd December.  Luckily after that he was not sick any more.

However, being sick so violently and so quickly had left Paul in quite a lot of pain and he wasn't really able to enjoy Christmas.  He was utterly exhausted as well and spend a lot of time in bed.

In 2012 we didn't really think about Christmas until about the 23rd December.  This year December has been a great month for us!  Ethan turned 3 and we had a lovely party with his friends.  We had a holiday at Center Parcs Winter Wonderland where we visited the real Reindeer and the singing Reindeer daily and Ethan was lucky enough to visit Father Christmas and have his photo taken.  This week Ethan has started Nursery (ready for January) and we couldn't be prouder of what a confident little man he is turning into, no tears on drop off whatsoever, just a kiss and a wave and a bye Mummy!

I think it is safe to say that Christmas 2013 will be a completely different story to 2012.  Paul is in excellent health and we will be spending it with the people that mean the most to us and helped us through December 2012 and beyond and continue to support  us on a daily basis.

That just leaves me to wish everyone who reads this a very Merry Christmas and a very Happy 2014!  We have high hopes that we can make it to December 2014 in the same position we are now xx

Saturday, 23 November 2013

One year on from the BIG op!

Today marks one year since Paul had his major operation to debulk his tumour (there is a technical term but the name escapes me!).  It seems madness that it was a year ago but it feels so very good looking back and reflecting on all we have been through and where we are now.

The day was an emotional one as when we arrived I had expected to stay with Paul until he went down to surgery (as I had done in the October for his biopsy) but I was told by a nurse I would have to leave and was then asked to sit out in reception (Paul had gone to have his preparation shower).  I was understandably upset as this had not happened in October and Paul was on the same ward and this was a much bigger operation.  Paul was also upset as I had been told this while he was in the shower and neither of us had had time to prepare ourselves.  Another nurse saw us in the corridor upset and let us back onto the ward and closed the curtains round us so we had a minute.

I left Paul and went home to await news.  The surgeon (who was a really lovely down to earth chap) came to see Paul very shortly after I left and could see how upset Paul was.  He offered to ring me as soon as surgery was over, and Paul agreed to this.

By 5pm that night I received a call from Claire our specialist nurse, who had Marco (Paul's surgeon) on the line to speak with me.  He sounded exhausted and informed me that Paul's tumour had progressed in the month between the biopsy and was larger than he had expected.  He had done his best to remove as much as possible.  Claire came back on the phone and told me Paul was in recovery and would understandably be very groggy for the rest of the evening.  There was no point in us visiting him as he would probably not be back on the ward until later.  She also told me that Paul would not be told about the tumour growth until the next day, so that he would be in a fit state to take it in.  This felt very odd as I now knew more than Paul and I knew he would ring later.

When Paul rang that evening he sounded not too bad.  He asked me what Marco had said to me and I just asked him what he had said to him, luckily he answered me and never asked me again.  I didn't want to have to lie to him.

I visited Paul on Saturday afternoon and he looked remarkably well for someone who had had a major operation the previous day.  He had an epidural in for the pain, two drains in for the fluid to come out and of course a catheter.  Our walk up the corridor was very interesting.

We were told Paul would be in hospital 5-7 days.  The op happened on the Friday and by Monday night we were bringing him home.  I asked the nurse if she was sure he should be leaving, she said he was fine.

Paul made an exceptional recovery (he may not say the same) but within a couple of weeks he was doing things he probably shouldn't have been doing.  One month later he started chemo, but that's will be another blog.

Today, one year on has been a very different day so far.  We took Ethan to a Topsy and Tim book signing at a local pre-school.  Jean Adamson lives in one of the villages near us.  Ethan is now the proud owner of two signed books.  Paul and my Dad have just painted the new fence panels which will hopefully go up at some point next week.  I have sorted through some bits and pieces to go to the charity shop and now my boys are having a well deserved afternoon nap.

Saturday, 9 November 2013

Another two months nearly up!

This coming Thursday we will travel once again to Papworth for Paul to have an x-ray and see the oncologist.  This time we are both really hoping we get a good, stable result as this will then mean we can look forward to Christmas knowing Paul can enjoy it.  Last year he started chemo just before Christmas and it made him so sick for the next couple of days (he ended up back in hospital overnight) that come Christmas Day he was absolutely exhausted and could hardly stay awake or eat anything.  I know he looks back and knows it was a horrible Christmas.

The last 2 months seem to have flown by.  We had a weekend away at the seaside and a week at Center Parcs which were both brilliant.  We have another holiday booked to Winter Wonderland at the beginning of December to look forward too.

The 4th December will see our little boy turn 3!  I have no idea where the years have gone.  It only seems 5 minutes we were bringing him home from hospital.  An experience we had hoped to repeat by the time I turned 38 last week but unfortunately mesothelioma has changed our life plans and now we know Ethan will unfortunately be an only child.  I don't think about it too much else I would break down but we are so very lucky to have him and we thank our lucky stars ever day that we do.

In January Ethan will start at pre-school which we hope he will enjoy.  We know he is very ready as he loves being with other children and is a very friendly little chap.  His big adventure into the world will begin.  I just hope it doesn't go by too fast for us.

Our poor little cat Honey had to have blood tests the other week as she had lost weight at her yearly check.  Although a month later she hasn't lost any more the vets wanted to check to see if there was any problems.  The blood results showed elevated levels to do with her liver and some muscle wastage value too (far too complicated for me to understand).  She is having an ultrasound of her tummy on Wednesday to see if they can find anything.  The vet said to me if they find anything they will talk about biopsy but as its a very invasive procedure for a cat it may not be worth it.  I know if they find something I will be very very sad as we have know Honey since the day she was born and she is now 7 and a half.  She has become part of the family.

Paul's operation last week went well and he is happy with the results so far.  When they brought him back to the ward after he had woken up I said to the nurse I was pleased I hadn't seen him straight after his operations last year.  It wasn't that nice to see him really sleepy and not with it.  He seemed to turn a corner quite quickly though and we left the hospital at about 4pm.

So this week we start with the scanxiety of with it/won't it have started to grown again.  I pray we can at least get through Christmas and into the new year before any other treatments have to be thought about.

I will try to update you all on Thursday evening xx

Tuesday, 15 October 2013

More surgery........but not to do with the Meso!

For those of you following my blog from the beginning you will already know that Paul's mesothelioma was found by accident while he was being investigated for a completely unrelated problem.  That problem was haemorrhoids and because the meso quite rightly took priority it wasn't until a couple of months ago that they were looked at again.

In July Paul received some treatment to try and get rid of them (banding) which unfortunately was unsuccessful.  We therefore went back to Addenbrookes yesterday to clinic 4 to see what they said could be done about it.  Paul has been on iron tablets (due to anaemia) since the very beginning of investigations, which is well over a year now.  The anaemia being caused, we believe, by blood loss.

They decided that it would be best to perform a short operation on Paul known as HALO which will hopefully sort it out.  This has been scheduled for the 29th October and will hopefully just be day surgery but does involve a general anesthetic.

We had to visit the pre-assessment clinic after surgery was decided upon.  We spoke to a nurse and she filled in the usual questionnaire about general health etc.  Although this time Paul's was a bit more complicated with him having to give details of recent operations, of which he has had 2 in the past year and they did the usual MRSA swabs and blood testing.  We had quite a laugh with the nurse as she couldn't spell all the complicated words we were coming out with and had to look them up on google. 

After we left the hospital last night it was getting into Cambridge rush hour time so we visited my Brother and Sister-in-Law for a cuppa before a quick visit to Asda.  We then went out for a meal on our own which was very nice and because it was a week night, quiet too.  

Ethan had a lovely day with his Grandparents and was very well behaved for them as usual.  He even managed to go down a slide on his which is very unusual for him.  He usually likes climbing up to the top but then refuses to go down it.

Friday, 11 October 2013

Chicken Pox!

When we found out a couple of weeks ago that Ethan had been exposed to Chicken Pox I was secretly quite pleased.  It was very well timed, Ethan now has no problems with tonsillitis (as they were removed in Dec 2012), Paul has finished chemo and everyone says getting it out of the way young is best.  Now would be a fantastic time to get it out of they way!

I got Paul to check with his Mum if he had had Chicken Pox as a child, she didn't know.  So we thought it best that he visit the doctors to check what he needed to do, if anything.  They suggested we ring our Specialist Nurse at Papworth and see what they said.  Everyone was saying they didn't think anything would need to be done.  Paul, who has three siblings had more than likely had it and would be immune.

The next day our Specialist Nurse rang back and said it had been decided Paul should have a vaccination.  She faxed our doctors surgery to say this and I rang the next morning to book Paul's appointment.

He went along for the jab only to come home and they had refused to give it to him.  They told him he should ring Papworth again and check.  They were talking about the shingles vaccine which is apparently not licensed in the UK for under 50's and it is also a live vaccine.  They wanted to be sure that Paul's Oncologist knew this.

I rang the surgery at this point as there had been so many phone calls between us, the doctors surgery and Papworth with us in the middle (who don't really know what we are talking about) that I thought it best they speak direct to Papworth.  I'm still not sure to this day why they had decided the shingles vaccine was the way to go, I had thought it would be the Chicken Pox vaccine all along.  This probably added to the confusion.

By now it was late Wednesday evening and they said it would be followed up on Thursday.  Thursday we heard nothing.

Friday morning I received a call directly from our Specialist Nurse, Claire at Papworth to say that it had been decided that Virology should be involved and they were to retrieve a blood sample of Paul's for testing.  This way we would know if Paul was immune to Chicken Pox or not.  I also received a call from our doctor as I think they knew we were quite anxious about this by now. It was taking so long for them to decide between themselves what needed to happen and we were getting closer and closer to incubation time.

Later on Friday, Claire called again to say that interestingly Paul's blood showed him not to be immune to Chicken Pox and now the virologist and our doctors were discussing what should be done.  Late Friday evening I received a call from our doctors with the plan.  Paul is to have anti viral medication (aciclovir) for a week starting one week after exposure.  Then if Ethan gets it he will need to have another course starting 5 days after Ethan's spots appear.  Then four weeks after he has taken the last tablet he will need to be blood tested again and should he still not be immune they will give him the Chicken Pox vaccine, which is two jabs.

Who would have thought something as simple as Chicken Pox could turn out to be so complicated.  No one seemed to know what should happen and it took so long for the eventual plan to be decided upon.

Seems odd to have written this down, but hopefully it will help someone in a similar position one day!

Thursday, 19 September 2013

One year on.....

28th September marks one year since we first heard the 'C' word and 4th October marks one year since Paul was diagnosed with Mesothelioma.  We have had a whirlwind year....

This coming weekend would be a year ago since we came home from holiday to find a letter telling us Paul had been referred to Papworth Hospital as his CT scans had shown up something Addenbrookes were unsure about.

I remember our first visit to Papworth (for Paul's needle biopsy) and the week following it like it was yesterday.  I can clearly remember the doctor and her conversation with us.  At one point she turned to me and said "Mrs Cowley, tell me your concerns".  The sentence after that contained the words no one ever wants to hear.  They were concerned Paul had cancer.  At that moment our lives changed forever....

The next six months were to be a whirlwind of VATs biopsies, major surgery and chemotherapy.  Thrown in there somewhere was our 2 year old son having his tonsils out and a Christmas we would probably rather forget.

The last six months haven't been as hectic but that little 'c' word is never far from our minds.  Paul has now had 3 follow up appointments at Papworth, each 2 months apart.  At the last appointment we were pleased to hear that the meso is stable and therefore inactive at present.  Paul has been trying to carry on as normal as he has no symptoms, but he has been urged to cut his hours at work to deal with the constant exhaustion he has been feeling. He is now having a day and a half a week off work.

Since finishing chemo in April we have made the most of our time together.  We took a week long holiday straight after, which was fantastic.  We have had a couple of weekends away together and next week we are off again.

We have never asked the question of 'how long' as we feel the only thing they can tell us are statistics and we know at Paul's age (now 35), the fact it was found accidentally and that he has no symptoms, he does not conform to statistics.

We will remain strong, positive and make the most of what life has thrown at us!

That just leaves me to thank those without which we would not have 'survived' the first year of our cancer journey.

My parents, who have been absolutely fantastic looking after Ethan for us every single hospital visit and chemo session, having him overnight for us too.  I know they really do not mind and have enjoyed it thoroughly but without them it would have been so much more difficult.  Ethan loves them to pieces!

Numerous other family and friends who have been there for us in good times and bad, listened, been there while I've cried and offered a reassuring word.  All the messages we get offering good wishes before hospital visits and calls etc wanting to know how we got on truly make us feel loved.

And although I know she won't read this our fantastic Specialist Nurse, Claire at Papworth Hospital.  Who has never ever made us feel like just another patient.  Phone calls when your not expecting them and hugs in the waiting room make a world of difference, believe me.

I almost forgot the most important person of all, our 2 year old son Ethan who doesn't understand what has happened this past year but without whom it would have been a whole lot harder to keep smiling.  He makes us laugh every single day and is a huge part of the reason we are able to keep going.  Love you to the moon and back little man xx

So onto the next year..........

Wednesday, 17 July 2013

Race for Life! Please sponsor us xx

I know I haven't written for a long time.  Things started back on a somewhat normal footing and it has been nice just being a normal family again and not a family with Cancer always in the forefront of their minds.

This Sunday however, Cancer will be right there in my mind and everyone else that I will be with too!  For I am taking part in Race for Life in Cambridge with 4 other lovely friends of mine who have been so great in supporting me in more than just this!

We are so very close to the £500 target I thought I would set Claire's Crew.  If you can spare a few pounds to help us reach the target and help such a worth while cause, I would be ever so grateful.  I hope it will certainly bring forward the day there is a cure for every Cancer type, preventing families going through what we have been/and will go through!

Monday, 18 February 2013

The results are in......finally

I am pleased to be able to tell you that we have received the results from Paul's scan and they have confirmed a definite reduction in the cancer.  We are both very very pleased to have this news but, like all things in our lives at present, getting there has not proved easy!

Yesterday after my post Paul started with a headache which turned into a migraine and by 2pm he was being sick.  I of course rang our hospital urgent number to find out what we should do.  They said to phone our GP if it got any worse.  I rang our GP after Paul had been sick 3 times.  After an hour waiting for them to call back (and Paul being sick again) I phoned them back, only to be told that Paul was a non-urgent case.  After 3 hours they rang back but luckily by this time Paul had improved and had managed to keep some tablets down which had helped with both the migraine and the sickness.

This morning we had an early start as the trip to Cambridge in rush hour is not the easiest.  Paul wasn't feeling 100% but Ok to travel.  He had his usual bloods taken and then we were called through to see his oncologist.  Unfortunately he had been unable to compare Paul's scan last week to the one pre-chemo as that scan had been done at Papworth and not at Addenbrookes.  He had therefore compared it to a pre-diagnosis scan take in September and said he could see a little improvement.  Not really a lot of help bearing in mind Paul had a major op in November to remove as much as possible of the tumour.

We came away feeling a little disheartened and were told they would obtain the scan from Papworth and call us if they felt the cancer was not responding.  Paul had been asked if he wanted to continue with chemo or postpone his next session, and I am so glad we decided to leave it booked in for this week.

On our arrival home we decided we weren't greatly happy with how things had been left.  Paul put in a phone call to one of the lovely Specialist Nurses at Papworth to see if we could move things along a little and maybe get a bit of a better answer sooner rather than later.  I am so pleased we made that call!  They managed to get the right scan to the oncologist for him to look at and he reported back the 'definite reduction'!!

I think this first bit of good news since diagnosis will spur us both on and give us the boost we need to get through another 3 cycles of chemo.  Although I think Paul will be taking it a little easier from now on......

Sunday, 17 February 2013

End of our 'normal' week :-(

Our 'normal' or Paul's good week (the week where he is feeling the most like normal) is coming to an end and next week is chemo week.  Paul has had a full week at work and even been out to the pub with one of his mates.  Ethan and I have been out twice this week to playgroup and to meet with friends and have lunch. So all in all a good week!  A week where we almost forget the 'c' word and sometimes it seems like it could just be a dream.

Unfortunately Paul isn't feeling so great today and I suspect a full week at work was a little too much for his body to handle.  He says he feels like he has no energy and is resting as I write.  A relaxing day today is definitely called for (with lunch out at my parents) and he will have to take it easy this week ready for his next cycle on Thursday.

Tomorrow we are back at Addenbrookes to see his oncologist and hoping for good news from Tuesdays scan.  We were discussing this yesterday and good news will definitely give Paul a boost to get through the next cycles as he will know something good is coming out of feeling so bad.

Wednesday, 13 February 2013

Quickest hospital appointment in history??

The key to a speedy hospital appointment became clear to us last night, the last appointment of the day and it being a late one i.e. 7.30pm!

We arrived into the CT department at 7.25pm to be greeted by the lady scanning Paul and her taking him straight through to be scanned.  10 minutes later Paul appears into the waiting room complete with cannula in his arm for the 10 minute wait to check the contrast injected into him doesn't give him a bad reaction.  The cannula is then removed exactly 10 minutes later.  Total appointment time = 20 minutes!  I suspect they were due to finish at 8pm but saw the opportunity to finish early :-) 

We didn't even have to go and seek out someone to give us a special outpatient car parking card as we were only 40 minutes in the car park and the fee for that is cheaper than the outpatient pass.

My brother and his girlfriend live not too far away from Addenbrookes so our evening didn't end there.  We went for a visit and they very kindly cooked us pancakes.  Although some of Martin's efforts did look a little like cat sick, Katie's were much better!

I woke this morning at 6.15am, which was fabulous.  I have just found out our little monkey, who has been waking at around 5am for the last week or so, decided that was also the time he would wake up.  I've already warned Grandma and Grandad that if he wakes at 5am tomorrow he is off to live with them!

Tuesday, 12 February 2013

CT scan tonight!

Tonight we are off to the hospital for Paul to have a CT scan to check what effect the chemo is having on his cancer.  We should get the results next Monday at chemo clinic.  Paul has already had 3 if not 4 CT scans so I am sure he is not worried about the procedure at all.  We just need to pray that the chemo drugs are doing the same to the horrible stuff as they are to Paul's stomach and immune system!

So a 7.30pm appointment at Addenbrookes means Ethan gets to spend the night at Grandma and Grandads and Paul and I get a night to ourselves!  So we are planning on going out for a meal before going off to the hospital which will be lovely and of course, we should get a lay in tomorrow morning (even if its only til 7am)!

Monday, 11 February 2013

New Blog

I have decided that our journey through mesothelioma needs to be recorded and I am therefore starting this blog.  I am going to try and write posts back from the beginning (Sept 2012) but this could take me some please keep looking back!