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!