Usually following on from when he has done too much. He has had a day of feeling totally washed out. Hate to see him with this level of fatigue because it makes you remember how ill he is – not that you ever exactly forget.
Its rather like a huge depression hits the house, understand of course what there is to be depressed about. The phrase dont worry it’ll never happen is of course rather redundant. The hardest part i find is the whole day can go by without a civil word being spoken. It feels as though you are towing round a permanent black cloud.
The good news is they dont often last more than a couple of days, so hopefully by Thursday he will be talking in words of more than one syllable. At the moment we are still at grunt stage interspersed with occasional words.
Good news now early evening and the gloom has partially lifted- slight worry in that he seems to now have an allergic reaction to something which has caused his left eye to partially swell up and a small rash to appear above and through his eyebrow. Combined with the uber short hair , he now looks as though he has been in a fight . Either that or I have finally snapped and hit him with the proverbial frying pan ( only tempted occasionally I swear and never actioned). New drugs now actioned with the antihistamine in full flow.
We managed to get along to the rowing today, but must admit it was exhausting. Had a 600am start with a trains to Windsor. Forst local train fine but the train to Windsor was heaving, we were all squeezed up together standing withe the delicate smell of the toilets wafting past. Never having been great at crowds in the past since the chemo Ray has become verging on the agrophobic so the journey was torture.
Once in Windsor we then had a melee to get off the station, rather than join the rather scary queue for the bus shuttle we decided to walk. It was very well signed and lots of people along the way to give you directions and wish you a good day. The sun was shining so it was actually a beautiful walk once Ray had got his heart rate back under control. Was having a bit of an inward panic about the security ahead, worrying we were going to be in yet more queues. The army were fantastic, talk about efficient and courteous. We were whisked through security with no queues at all – I vote for them to train the guys at Heathrow immediately.
There was then another 20 mins walk to the stands. Overall we had great seats and the rowing was excellent with 2 olympic best times set and hopefully we might even have seen two future gold medal GB teams in action.
What you don’t appreciate watching it on the TV was the fresh easterly wind that was blowing vigourously across the stands. It might have been sunny but you definitley wanted your fleece and windcheater on.
Afterwards we walked back along the river to Windsor past a beautiful church hidden away up a secret path. Lunch at a nice bar and restuarant near the station in order to lets the hoards
head off first ( still with our windcheaters on) . Then train home slightly more civilised as we got a seat and the toilet wasn’t quite so pungent.
Around an hour to get home, whereupon Ray headed off to bed totally exhausted. Glad we went but overall getting up so early was difficult . Combined with what has become a real problem with crowds it was probably a bit too much.
This morning started with a bit of a hangover! Ray was having a bad day so headed off early to bed. in order not to disturb him I went to nearby friends to watch the opening ceremony, thought it was a fantastic show. Loved the way it was put together and all the quirky touches. Highlights definitely Mr Bean, Bond and Beckham. Also loved the music , although what the rest of the world would have made of it- no idea. Probably that we are totally bonkers.
After a morning to recover we cycled over to Richmond Park to watch the mens cycling road race. There were loads of police outriders up front going past at some speed with sirens on – didn’t realise that the cyclists would go past at pretty much the same speed. Wow there is some power when the group goes past, the speed and closeness of the riders is just amazing.
Glad we went and had a great view. We cycled a short distance round the park before heading home. Some great sunshine so we both picked up some colour. Ray was a bit too enthusiastic with the hair clippers the other day, didn’t quite choose the right
Cover via Amazon
setting so he looks like one of the new recruits from An Officer and a Gentleman. (not Richard Gere unfortunately)
Bayer HealthCare has announced an important step forward for its investigational cancer drug, BAY 94-9343. The drug, which is a mesothelin-targeting antibody-drug conjugate (ADC) has been granted orphan drug status by the Food and Drug Administration for the treatment of mesothelioma.
Antibody-drug conjugates, also called immunoconjugates or immunotoxins, are a new class of therapies that combine the targeting properties of an antibody with a cell-destroying “payload” drug. In the case of BAY 94-9343, the antibody portion of the medication targets the compound mesothelin, which is highly expressed by mesothelioma and several other cancers. According to a press release from Bayer HealthCare, BAY 94-9343 “demonstrated potent, targeted anti-cancer activity against mesothelin-expressing tumors in preclinical models.”
Orphan drug status is designed to encourage the development of drugs that are used to diagnose, treat or prevent rare diseases like mesothelioma.The makers of orphan drugs are eligible for tax credits for clinical trial expenses and may be exempt from certain FDA fees. The hope is that orphan drug status will allow drugs like BAY-94-9343 to get to market faster
Bayer began testing the safety and efficacy of BAY 94-9343 for mesothelioma and other solid tumors in September 2011. Mesothelioma patients and those with other types of mesothelin-expressing tumors are currently being treated at three study centers in the U.S. More information about the BAY 94-9343 trials and other ongoing clinical trials for mesothelioma can be found at the National Cancer Institute clinical trials website.
Why is it you get a really good Friday , followed by a totally exhausted Saturday. What is it that tips the balance one way or the other. Really good Friday morning, very painful Friday evening , that exhausts him on Saturday such that he can hardly get out of bed.
This morning was so much better. We spent the morning at home then caught the train to Richmond this afternoon so that we could walk back home along the river. All in all about 7 miles. Lovely walk, lots of other people on teh tow path and loads going on riverwise. We watched a lively dinghy race that had to deal with tides and very little wind, so it was good fun to watch. It was just outside a pub so was very embarassing when one of them got a bit too close to the bank and ran aground.
Further on there were various rowing team and lots of enthusiastic labradors jumping into the river.
We got back onto the High St in time for dinner at Zizzis before walking home and for the first time since March I actually watered the garden. Am currently looking for somewhere for us to watch the opening ceremony on a large screen.
So far the gossip is the folowing will be involved, sheepdogs, sheep, cows, horses, dancing NHS patients , Lord Voldemort, dozens of Mary Poppins, the industrial revolution and apparently a very moving tribute to the sacrifices of the world wars.
At long last the forecasters have said something other than rain. Hopefully August will see some sunshine. My garden is so damp some flowerbuds have rotted before they get a chance to bloom. At least this morning has seen enough sunshine to have breakfast in the garden. Even with the clouds the temperature is high enough to enjoy your cup of coffee.
Am hoping some sunshine improves Ray’s pains. After a week when it wasn’t too bad, the last couple of days have seen a marked increase. He describes it as a stinging sensation all round his chest with really sore spots down the centre of his chest. As ever we hope it is just the usual surgery scars causing the issue and not Ms Meso flexing her muscles.
If the weather stays as good as forecast we hope for a long walk today along the river followed by a few beers at a favourite pub.
This will be a very busy week at work , am taking the first week of August off work as we have some Olympic tickets. Just worked out that because of the airport style security will need to leave about 3 and a half hours to do the 25 mile journey to the rowing for a 930 start – for a two hour session!!!
To say i am not popular is to put it mildly. Still once in a lifetime event as they say.
Unfortunately today has been another bad day painwise, so no chance to get out and about. Hopefully will get another chance again tomorrow.
Mesothelioma researchers at several medical centers across Austria say a cell protein, know as serum C-Reactive Protein (CRP), may hold the key to identifying which treatments work best. CRP is a type of protein produced in the liver when the body is experiencing acute inflammation or infection. CRP levels rise to help the body jump start its immune response.
To test the relationship between CRP levels and mesothelioma, researchers analyzed the medical records of 115 patients with a confirmed diagnosis of mesothelioma. Then they compared each patient’s pretreatment level of CRP with his or her response to a multimodality treatment approach, with or without surgery.
Patients who had an elevated CRP level before treatment had a significantly shorter overall survival than those with normal CRP levels. But what the researchers found even more interesting was the relationship between CRP level and treatment type: “Among patients with normal CRP levels, radical tumor resection within multimodality therapy was associated with distinctly prolonged overall survival when compared with treatment protocols without surgery.”
In contrast, patients who started out with elevated CRP levels gained no survival advantage from multimodality approaches that included radical surgery.
Because radical mesothelioma surgery is traumatic and risky, even mesothelioma experts disagree about when it should be used. The new study gives mesothelioma patients and doctors another tool to help make them make the best treatments decisions possible.
A growing number of studies have pointed to the value of unconventional treatments like immunotherapy for mesothelioma.Immunotherapy refers to any treatment protocol which aims to harness the body’s own immune system to fight cancer cells. In a recent article in The Lancet Oncology, two National Cancer Institute researchers summarized some of the most promising immunotherapy approaches now being investigated for mesothelioma:
In dendritic cell-based immunotherapy, dendritic cells are harvested from the patient. Outside the body, these cells are stimulated to activate a cytotoxic response against cancer cells. When they are returned to the body – usually by attaching them to an inactivated virus – the dendritic cells stimulate an immune response against tumor cells (such as mesothelioma) that produce a particular kind of antigen. The cancer vaccine Provenge is an example of dendritic cell-based immunotherapy.
Listera-based cancer vaccines use a live bacterium (Listeria) to carry tumor-specific antigens into cells. The Listeria virus produces certain chemicals that allow it to escape detection in the body until it is inside the target cells, making in a good vector for delivering anti-cancer antigens.
Other vaccines being tested against mesothelioma include allogeneic tumor cell vaccines, which use specially treated cells removed from the mesothelioma tumor itself and returned to the patient and WT1 analogue peptide vaccines. WT1 analogue peptide vaccines seek out certain chemicals that are overexpressed in cancer cells and have been shown to induce T cell immune responses in patients with mesothelioma and non-small cell lung cancer.
As always it is promising to see this research is underway- just need to hang on in there long enough.
Never underestimate the benefits of normality – since Ray’s diagnosis we have had a to adapt to a new normality. Yesterday though was a normal day by our old standards. The last week has been quite good, Ray has had a few of the usual aches and pains but nothing major, he is starting to get used to how his body reacts to different things. So there is a lot less panic over every ache suggesting the mess is fighting back- instead we wait and see if the new ache subsides over the next couple of days.
Yesterday evening we opened a bottle of champagne we has left from Christmas, had an early dinner and set off to see Patricia Hodge at our local theatre. The champagne might have been an influencing factor but the play “Dandy Dick” was great – very , very funny! Then a couple of drinks at the local pub and the late tube home. We walked home through the misty rain ( not quite a balmy summer evening).
This morning we both said that yesterday was just like a normal pre-diagnosis evening!! May all meso warriors and their families have many more.
Not quite a normal discussion was had after the play when we reflected on how the diagnosis has changed us as individuals. Strangely Ray thought it had made him more aware of other people and their needs. I don’t think it changed us just reinforced our existing characters.
What we both agreed on was how it had brought out the best in friends and families. How it made you appreciate the people in your life and how they had all stepped up to bat ( not sure about my cricketing term). This is true not just for us but I know from reading other blogs how important friends are to all of us in helping make the most of what we have and sharing a few more normal days.
Just finished watching the final, a brave fight but outclassed in the end. You have to feel for Murray, must be a nightmare to try so hard and just miss out like this.
It’s been a weekend of sunshine and showers, overall we have pretty lucky. I have been over to Faversham with friends for the weekend, while Ray spent some time with his family. The five of us in Faversham spent most of the weekend visiting various gardens and National Trust properties.
We started off at Belmont on friday and then went to Chartwell, Winston Churchill’s house, on the saturday. Lovely house and gardens although didn’t get to see the famous black swans ( they were staying well out of the rain).Well worth a visit.
Fired up with enthusiasm and ideas for our own gardens ( although on a much smaller scale) we went out for a great meal on saturday at a pub called the Sportsman. A great recommend.
We travelled back to London today, all squashed into one car with various flower purchases. My plant to pot ratio has gone awry so will be short while before some get planted.