A good weekend, where despite all the stresses and strains we managed to enjoy the time together. We had rented a quaint cottage, that used to be part of an old cider inn, our cottage was the old snug.
We were even lucky with the weather, having thought the weather had changed for the worse we were prepared for rain and winds. In fact it stayed really sunny and warm, so we spent Friday exploring Lyme, including the Cobb, where I could do my Meryl Streep impression from French Lieutenants Woman.
Then on Saturday went for a walk we found in one of the guide books, which involved a steep climb up Horsemans Hill. The guidebook had warned us about this, what it hadn’t really covered in detail was the walk down through the undercliffe, referred to as a walk down steps through the woods !!
These steps were made up of tree roots and were nearly perpendicular in places, it had cracked skull written all over them, ending up spending a lot of time on my bottom, whilst lowering myself down
Sunday , we walked along the beach looking for fossils, in beautiful sunshine, walking back the tide had come in, so had to have a bit of a scramble to avoid getting our feet wet. Well , not too wet anyway.
Back home and great news from our Spanish meso warrier, his follow up scan shows the tumour to be stable, at last some good news for someone. We’ll know how far it has progressed on Wednesday, so fingers crossed it isn’t as aggressive as they think.
New PET scan has been completed, appointment made for next Wednesday to get the results, so no more we can do for now, it is in the lap of the gods. We know it’s back, we don’t k ow how much, our minds go constantly through all possible options, from teeny ,weeny change ,to extensive growth into chest wall and diaphragm, the two areas the surgeon thought most likely to be affected.
You are trying to prepare yourself for very possible option, so that when it is actually confirmed, your brain doesn’t seize up completely and you can still listen to what is being said, if it hasn’t got too extensive , there seem to be three main options.
Go for the second line chemo
See if he qualifies for the ADAMS trial.
Unfortunately the magic wand option doesn’t seem to be on the list.
This weekend as planned some time ago, when the outlook appeared rosier, we are off to Lyme Regis, so are determined to make the most of what could be our last holiday together . No doubt there will be a few beers , lots of walks but definitely no chat about meso. This weekend is for us, she isn’t invited.
Recent reports suggest results of an extensive trial prove the drug Vorinostat (Zolinza) fails to extend the survival of patients with malignant mesothelioma.
Previously it had been hoped Vorinostat would have been a positive step towards fighting this cancer, but , in Phase III trials, the drug didn’t meet its primary endpoint, which was to extend the life of those suffering with mesothelioma.
“Unfortunately, there was no benefit with regard to overall survival compared with placebo,” Krug explained. “There was a statistically significant improvement in progression-free survival, but it wasn’t clinically significant.
This study included patients who had failed to respond to first-line therapy with Alimta (pemetrexed) combined with cisplatin or carboplatin. These individuals were given Vorinostat twice daily for three days each week during a 21-day cycle. More than 600 people at 92 different sites participated in the study.
Unfortunately, the Phase III trial showed no significant benefit for those who took the drug versus those who were given a placebo. The median survival rate for patients who took the drug was 30.7 weeks compared to 27.1 for those in the placebo group
Well the new scan is booked for tomorrow , so another fun packed three hour hospital visit . The PET scan takes a lot longer than the CT, as once they have injected the radioactive glucose, which takes around 30 mins, you then have to rest for around 90 mins for it to be taken up around the body , then have the scan itself.
We have a follow up appointment booked with the surgeon to discuss the results the following Wednesday and the oncologist on Friday 14th, so by the end of next week we will know the extent of the bad news.
We know the little darling is back, now we need to know just how quickly it is growing . The last scan was done on the 27th July and showed no conclusive evidence of any meso, so this one will show us the spikes in glucose uptake where it has developed.
From the areas of pain,it appears most likely to be in the chest wall and diaphragm. Today as well as pain in his back, his chest wall was also tight on the right hand side. At the moment neurofen in the morning and evening is just about controlling it , we have also been prescribed some much harder hitting painkillers.( dihydrocodeine)
What’s really scary is four weeks ago, we were having a great weekend in Goodwood, no pain at all. Then an ache around 2 weeks ago, now we are talking about serious painkillers just to get through the day. I really don’t want to think about just how quickly this is growing or how to deal with the pain.
As so few of his family know about the situation, it is coming very close to having to sit down and tell everyone , including his teenage son, just what is going on and how much time is possibly left.
Made the most of another sunny day wielding Windsor.not quite what I was expecting, far more touristy, then again with the castle and closeness to London, what else would you expect.
We managed to get a good parking space in the centre, where I gave someone change for a 20p piece as they didn’t want to pay 10p more than necessary, as we walked passed them , realised they were getting out of a brand new maserati – that’s why I don’t have a super car, far too wasteful at parking meters.
Walked along the river for a couple of miles, admiring all the houses with their own boats moored up alongside. Then came back into Windsor and crossed over the bridge to Eton, where we stopped for a quick beer. On the way back we stopped off at a restaurant we first visited a few months ago and always said we would go back to, it was just as good as we hoped so another good day.
Today though has been much harder, the pain seems to be greater today and he hasn’t really wanted to do anything, at such times am haunted by the knowledge about how quickly some people seem to go downhill as the meso gets a hold. In my head am trying to move from the hope of a couple more years , to a couple of months, then feel paralysed by the fear there may only be a few weeks.
Feels as though I am viewing life through a thick Perspex glass wall, on the other side , there are friends , family , work, on this side , there’s just me, separated by yet another wall on the other side , beyond which Ray stands alone.
Today was a good day, one for the memories. We went for a walk along the High St after lunch, thinking we would just pick up a few things. The weather was gorgeous, everyone had got their summer clothes out from the back of the wardrobe. People were sitting outside at all the pavement cafes, the local convertibles were all on show , really buzzy atmosphere.
We walked the whole length of the main street, enjoying the weather, then decided on our way back to stop off at one of our favourite bars for a G&T. The bar has a really nice room with lots of comfortable chairs and big white windows overlooking the street. The window tables give you a great way of people watching, so we sat there for the rest of the afternoon, enjoying the breeze through the open windows, listening to some great music and generally watching the world go by.
Afterwards, we wandered up to one of our favourite restaurants which has just been refurbished, had a great meal , good wine and a leisurely walk home through the warmth of the evening sun.
Some photos from our last country walk