Tag Archives: St Bartholomew’s Hospital

One year on

It is almost one year to the day we first visited Barts and met D Steele, Ray had already had a pleurodesis at Oxford , so we had a pretty good idea what we were dealing with , but it was Dr Steele who gave us the formal diagnosis of mesothelioma.

I remember how hard I prayed on that first visit it would be the epitheliod type, that there would be some hope. The previous doctors effectively told us not to expect to see Xmas.

So today is a day to give thanks, because one year later , still here , still fighting, still enjoying life.

We chatted through the PET scan in more detail, it was good to see the top part of the lung shows a definite improvement. At the base , whilst the area of uptake is less, the density is greater. Overall, it should be stable but there is no doubt about the increased levels of pain and the return of the cough. This is enough to suggest something isn’t going to plan, so in 6 weeks we come back for more scans and in the interim we will get all the info on the ADAMS trial. The good news is that because tissue samples were taken at the time of the pleurectomy , we don’t need to do anything they just need to test what has already been taken.

To celebrate our anniversary, we stopped off at 1 New Change for  a small glass of champagne and then went on to eat at Barbecoa. Great meal and a fabulous view .

 

We thought how much we had we had to be thankful for, firstly getting a great team on our side of surgeon, oncologist and nurses. Shown again today , when our scan hadn’t been received by Barts ,the oncology nurse made a special trip to collect it from St Thomas’s and make sure it was uploaded for our appointment.

Thanks for getting through the surgery, for surviving the hell of chemo, for the strength and support of our friends and family, for finding new friends through Macmillan and for my old and new employers in supporting us financially to be able to enjoy our time together.

One year ago, we thought he had three months left, so thank you for every day since, here’s too many more

One last request, appreciate a long way down the priority list but would be quite good if Wales could beat France tomorrow !

Good news at Bart’s

After the longest morning of my life ( even worse than waiting for my A Level results), we got the results of the PET-CT scan. Overall it was good news, there is no indication the meso is growing , there is some trace on the PET , but they think it is linked to inflammation from the surgery , which can apparently show up for years.

No sign of it anywhere else in the body either, the only negs were, there is still a very small pleural effusion , which has remained since the surgery , no nasties in it apparently and doesn’t impact on his breathing. The unexplained bit is still the pain across the top of his stomach and down his right side, the oncologist didn’t have any explanation for this, so we will be checking this bit out with the surgeon  next Wednesday.

We have a new CT scan booked for two months time at the end of September, so hopefully am going to get used to waiting for these tests.

Strangely felt very unreal, think we were both so psyched up for bad news, we didn’t believe the scan interpretation , have driven home with us both in a slight state of shock. Hopefully come Wednesday , if the surgeon says the same and can explain the cause of the pain , we can both relax a little and enjoy the summer. Big emphasis on him continuing to exercise as much as possible, so I can see the bicycles out again this weekend.