A walk around Wimbledon

Went out looking for wombles yesterday. We met up with friends for coffee in Wimbledon village, which is really lovely, could definitely live there, unfortunately so could a lot of other people so property prices are frightening ( even more than halloween). It has nice shops, good restaurants and some lovely pubs. It also has two riding stables as they take advantage of having both Wimbledon common and Richmond Park within accessible distance.

After coffee, we went for a long walk around the common, the area through the trees was lovely with all the autumn colours. Strangely although his cough was bad this morning, walking definitely helps.

It also helps with the pain, apparently, the pain is inflammatory in nature, so it improves with gentle exercise. Unfortunately it is also typical for it to get worse at night , which is why sleeping can be an issue. The common itself was a great place to village, although a lot of it does seem to be gold courses. This can mean that you end up walking along rat runs between  sections of the private course, which is a bit annoying. GIven that in all all crisscrossing through these runs, on a glorious Autumn day we only saw two golfers, does make you feel as though there is one common for the rich and one for the masses.

We emerged at the side of the common and passed some  amazing houses ( no doubt all non-playing members of the golf club) . Stopped off for a quick drink at a pub  ”The Hand in Hand” than back to the car and home.

Never did ing anything special to do on Halloween, just went to some places on the local high street which had made an effort with all the decorations. Whilst the pain remains under control, he is hoping to get out sailing this week with his dad, then depending on next scan, he is going to look at starting some sort of project, to give him something else to focus on and hopefully earn some cash. At the moment , though no plans beyond the next four

Image via Wikipedia

weeks and scan 3 on the 26th NOvember

 

another sunny day

Looking out at a beautiful Autumn, my next door neighbour but one, has cut down a large tree in their garden. Overall think its a shame as was a lovely tree, but it was close to the houses.  Also means my garden becomes a bit more overlooked, but on the plus side it also becomes quite a bit lighter. Am inspired to go and but some bulbs for next Spring.

Have been putting this off as wanted to get results of next scan at end of November, but that would leave it a bit late.

His cough has returned with a vengence, it is even making him breathless at the moment, which is a bit worrying. He is also more tired. Having worried about him not sleeping well, he is now sleeping far more than usual, so am worrying about that. It’s like living with Goldilocks, too hot, too cold ,too much sleep, too little….

Last weekend we managed to get out and walk along Basinstoke canal. The area formed a loop around a private estate, so unusually for a canal walk, you could walk along one side, then across Dogmersfield Park, and pick up the canal on the other part of the loop, so you never doubled back on your walk.

There was the most fantastic house bordering the canal, it was a beautiful thatched cottage, straight out of Hansel & Gretel. Two swans were on the large lawn, having hopped out of the canal. The owners had also placed a great sculpture of a horse on the lawn, which you could see framed through the trees.

A nice normal day

Busy day at work, although I took the car for a change rather than the underground as it was pouring with rain. It was the first time had driven to the new job, so my instructions were written out in detail the night before, it’s only about 10 miles and is fairly straightforward as a journey.

Unfortunately had a bit of a hiccup within the first mile, was meant to go straight on at the first very large roundabout, a part of the journey I have done several times. About mid way round, my brain changed gear from going to work mode – to coming home mode!! So went right round and came back towards home!!

Didn’t add much timewise , but honestly, it will be forgetting where I live next.

Got home again in the evening with no hiccups, we had a lovely shepherds pie he had cooked earlier, along with a glass of wine, so I felt very spoilt. We chatted about the day , what we would do at the weekend etc.

I realised later ,our day was totally normal- his pain and cough are currently under control, so it was as though it had all been a nightmare. The day was just like any day, in the life of a normal couple!

Had forgotten what they were like, may there be many more for all the meso warriers and their families.

 

Photodynamic therapy and mesothelioma treatment

 

Illinois-based Pinnacle Biologics have announced  they are applying for orphan drug status for their product Photofrin® (porfimer sodium), which they believe will prove to be a successful adjuvant to surgery for individuals suffering from malignant pleural mesothelioma.

According to the company, the drug is used in photodynamic therapy (PDT), a treatment procedure that has shown some success in treating mesothelioma patients. A two-stage process, PDT is accomplished by first injecting the Photofrin intravenously into the patient. About 40-50 hours later, patients are exposed to a non-burning laser light in the area of the tumor. The Photofrin is attracted to cancer cells and lingers in them. The light causes a biochemical reaction to occur in the cancer cells where the Photofrin remains, thus killing the cells.

Dr. Joseph S. Friedberg of the Department of Thoracic Surgery at Penn Presbyterian Medical Center in Philadelphia, has been experimenting with photodynamic therapy.

Friedberg said: “In studies completed at Penn, photodynamic therapy (PDT), in conjunction with surgery, has shown some very promising results for the treatment of mesothelioma. By utilizing PDT as an intraoperative treatment, we have been able to develop a technique where we can reliably preserve the patient’s lung. When compared to other treatments, this combination of lung-sparing surgery, PDT and standard chemotherapy appears to have a positive impact on both survival and quality of life. Based upon our clinical observations, characterizing the PDT effect and working on techniques to magnify it has become a major focus of our research.”

 

Related articles

• Combination therapy shows promise for rare, deadly cancer caused by asbestos (eurekalert.org)

Cough improvement

Absolutely no idea why, but the cough appears to be much improved. Appreciate, a cough doesn’t seem a major issue on it’s own , but it’s one of the most chilling sounds, not too mention one of the more annoying symptom( for both of us)

It also means he manages to get more sleep, which leads to improvement in his mood and enthusiasm for life in general. Taking a leaf out of other people’s books, we are making sure we keep busy and have lots of things planned over November , before the next scan.( when we can see if meso is still on the move).

As part of this we have entered the norimo challenge, which is basically, write a book in November . You have to write and submit a 50,000 word novel between 1st and 30th of November. This equates to about 1700 words a day. Given a usual blog entry is about 200 words, this will be a definite challenge.

We also have a couple of trips to the theatre planned and are still looking into things to do at Halloween and bonfire night.

So here is to a busy November

All about me

Reflecting over the last year has made me realise how central a role meso has taken in our lives. We are constantly monitoring Ray’s health , how he sleeps, aches and pains , first surgery ,then chemo and now just general health.

Everything else does start to slide into the background, however, a timely reminder this week that just because one of you has a terminal cancer diagnosis, doesn’t mean nothing else can happen.

Found a lump in my right breast a little while ago and to be honest , pretty much forgot it with all the stresses of the scans for the meso return. Finally got round to seeing my GP this week. very quick visit later to the consultant and no problems, just a cyst – actually not just any cyst, a super duper cyst , that almost had its own bra size.  Anyway one syringe later and both boobs back to the same size.

Madame meso , now firmly in place on her top trump podium position, good news pain under control, bad news the cough is much worse. Although this time seems to be linked to constantly having to clear his throat.

Still overall, good weather and able to enjoy it , so making the most of October , even planning what we are going to do for Halloween.

In memory of a meso warrier

Heard today the sad news about Ronny, had so hoped for some good news after her last update. Thoughts must be with her family at this time. When I first heard the name mesothelioma, Ronny’s blog was one of the first I found and it helped us both at a terrible time.

It seems so shocking how quickly this has all happened, a sharp reminder of how precious this time is together.

Autumn definitely here

Autumn winds have arrived in a big way today, with a definite chill as well. Woolly tights and sweaters here I come. This is actually my favourite season, I love those crisp days, where you get sunshine with really clear air and red/gold trees. Not too many of those days left though as a lot of the leaves were blown off the trees today and they are starting to look quite bare.

We now have 6 weeks to the next scan , info on the Adams trial is being sent to us, we have to sign various forms before they can test the tissue samples held at Guy’s to see if he eligible.

The good news is as it coming back relatively slowly, we do have a longer horizon than we thought, so we are now planning what we do next.

All the meso blogs refer to this planning everything in short timeframes, we have adjusted to this now, it even seems really strange to me when people talk about plans for Xmas and New Year,or holiday ideas for next year. My friends are getting used to the fact we never commit to anything more than a couple of weeks away, cancellations can work out very expensive.

So over the next few weeks we are planning a couple of trips to the theatre, a couple of visits to see some comedians and possibly another weekend away before the end of November.

You can still have a lot of fun even if yo do have short term horizons- even have some tickets for the womens beach volleyball next year, so he is insists he be hanging around for a while yet.

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 !

and on we go

The good news from today is looks like he will still need to buy me a Christmas present. Results in from the scan, the good news is our friend meso hasn’t spread anywhere, it hasn’t gone to the lymph nodes , chest wall or diaphragm. It does appear it has returned at the base of the lung but still at a cellular level, so limited progression.

The next stage is too look at the current trials that are about,  as now might be a good time . The  ADAMS trial was mentioned but there are also two new trials due to start,one is through an American company setting up a trial in Harley St. Although it is at a private hospital, the trial itself is free. A further phase 1 trial is being run at Guy’s and the Royal Marsden. This one isn’t specific to meso but has had good results with these types of tumours. Our surgeon has spoken to both of the oncologists running these trials and they are happy to look at us further.

So our next step is another appointment with Jeremy Steele on Friday to go through the scan results in more detail and consider the different trials.

Overall, could have been a lot worse, we go on to fight another another day.