Good news all round!

I'm here again!  with an update on this week.

On Tuesday we took Honey to the specialist vet to have blood tests.  He was happy with her overall condition and although she weighs the same as she did last month he said that weigh gain will be a steady and gradual process over a longer period of time.  He took blood and rang with the results on Thursday.  The steroids are still making the liver enzyme results drop which is good news and they are now down to three times normal and last time they were four times.  Another check up and blood taking in six weeks.

We had a long day on Wednesday.  After dropping Ethan at my parents and travelling to Addenbrookes we then had an hour and a half wait because the Consultant was running behind.  We did however come out with the result Paul is happiest with.  They will repeat the HALO operation he had in October last year.  His condition 'down there' isn't as bad as it was then so hopefully it will be successful this time round.  As he is having an op we then had to go to pre-assessment and then to blood testing.  We left the car park at Addenbrookes about four hours after arriving.  We then went to do a bit of shopping (just in the Asda there) and didn't arrive home til about 5pm.  It felt like a long day.  

The big day then arrived.  After three months we were going back to Papworth for chest x-ray and to see the Oncologist.  They are resurfacing one of the roads we usually go on so we had to go a long way round meaning we left earlier as we weren't too sure how long it would take.  We were at Papworth slightly early but went in and got the x-ray done.  We were called earlier than our appointment time, which was great.  We saw Dr Gilligan and Claire, our Specialist Nurse.  Dr Gilligan said he had compared x-rays, this times to January's and also to the one they had from last July and he was very happy and that coupled with how Paul is feeling means it is good news all round.  We now have another three months before going back.  HORRAY!

After passing on the news to those that were waiting we went on the Park and Ride into Cambridge.  We did some shopping and had a celebratory lunch out.  Another long day!

Yesterday we just rested and relaxed and caught up with stuff at home and everyone had a nap!

Now we have our first holiday of the year to look forward to in just over a week.  We can now also book a holiday for June/July time, although we need to decide where to go first! 

Long time, no blog!

Every time I write a blog I decide that I must do it more often!  I looked today to see when I last wrote and it was the end of January, nearly three months ago!  Where that three months has gone I do not know, I really must write more often (here's hoping)!

So what has happened in the last three months, well quite a lot.......and here we are, by the end of the week we will know again if Paul's Mesothelioma is stable or not!

At the end of February Paul decided that work for him was getting too much, mentally and physically.  He is not the same person he was before diagnosis and life has changed, priorities have changed.  After much thought and consultation with medical professionals he decided that handing in his notice at work was the right thing to do.  He finished work the week after making the decision and immediately felt a weight had lifted.  Having said that last week he went back for a day and a half to help out and he is there today.

Around the same time I mentioned to Paul that Mesothelioma UK in March do something called Moustaches for Meso in March to raise funds.  Paul decided that it was something he could do and it would be great to raise awareness and funds for them.  He succeeded with the challenge and raised almost £600 (including gift aid) which is fantastic.  He was in our local paper and the Nursery our son, Ethan attends saw it.  They are doing a sponsored garden obstacle course later this month with the children, also to raise funds for Mesothelioma UK.  This will be great as it will raise awareness amongst the children's parents and hopefully their wider families also. To sponsor Ethan (who is just 3 years old) please visit http://www.justgiving.com/obstaclecourse Thank you :)

As Paul finished work at the end of February he was able to attend our nearest Mesothelioma Support Group which he thoroughly enjoyed and met lots of other fellow patients.  Last Friday all three of us attended and it is lovely to actually physically meet people that are also following the same path as us.  As the majority of Mesothelioma sufferers are a lot older that Paul it is great to feel that we can help out and make it known that this is now not just an 'old man's disease' it can and does effect the young.

We had good news at the vet.  Our cat was diagnosed with Inflammatory Bowel Disease but since being on steroids her condition has improved.  We have blood tests for her tomorrow to check her progress.

This week is busy with hospital appointments.  Paul's operation at the end of October 2013 was not fully successful and he has become anaemic again!  We never received his check up appointment which I had to chase to get at the beginning of the year, only for it to be cancelled and moved into May.  Once Paul was found to be anaemic again I rang and they were able to move it to this week.  Despite our GP faxing the hospital about 4 weeks ago now to ask for a more urgent appointment nothing has been done about it.  So Wednesday is his appointment at Addenbrookes to see what they have to say.  I will also be finding out how I can put in feedback on the above, as I really feel it is not good enough!  We have never even had a call to say they were unable to provide a sooner appointment.  This and our experience through chemo really makes me feel that unless patients at Addenbrookes have someone to fight their corner and check stuff is getting done correctly, nothing really does.

The 4th April was a year since Paul's final chemo session and 18 months since diagnosis.  This Thursday we will return to Papworth for Paul is have an x-ray and see his oncologist (or one of his registrars).  He says he feels the same as he did in January and visibly unless you know he has terminal cancer you would never ever guess.  Let's hope we get good news and another three months hospital visit free (well, at least for cancer appointments anyway)!

Bit of an update on us!

I haven't written for a while as there hasn't really been anything significant to report.  But today I have a bit of extra time on my hands where I can't really do much as we have men in replacing all our windows and doors. So I thought I would write a little update for you all.

Christmas seems an age ago now but we had a lovely family time staying with my parents and Ethan had a thoroughly spoilt time.

New year is usually a  non-event in our house anyway and the last few years have been nothing different.  I suppose having a 3 year old that you know will be awake by 6am means we are always in bed before midnight.

On 16th January we went back to Papworth for Paul's x-ray and appointment with the consultant for the results.  Everything went well and they have extended his next appointment to a 3 months gap which is great.  It feels more liberating to have 3 months rather than just the 2.  Paul continues to feel well in himself although sometimes fatigued he is now just working 3 days a week.

Ethan has started Nursery 3 mornings a week and after 3 weeks or so he is settled and loving it.  We knew he would, but after the first week he had a wobble and said he didn't want to go.  He would cry as we were walking there and cry more when we got there.  They said he was fine after 5 minutes of being left but each time it felt awful leaving him.  This past week has been a lot easier.  He is now into the Nursery routine and is more than happy to be left, and knows we always come back and fetch him.

The Nursery he is attending isn't the one we thought he would go too, but I think all in all it has definitely been a blessing in disguise that he was unable to go to the original one.

We have booked our first holiday of the year for the end of April, the first of many in 2014 I hope.

Over the last few weeks there has been some sad news amongst my virtual friends in the Meso community. Jan Egerton unfortunately lost her battle after 10 years.  Jan wrote a blog about her meso journey and it has, and will forever be, a beacon of hope in our lives.  Rest in peace Jan, my thoughts are with your husband, Gary and your wider family for whom I am sure the coming weeks and months will be very hard.

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

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.

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

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.