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.

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!

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..........

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!

http://www.raceforlifesponsorme.org/clairescrew/?utm_source=DM&utm_medium=email&utm_campaign=2013_InSer_PreR2

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......

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.

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!