Decided it is important that having spent three days in doors, before he turns into a complete hermit, we should make an effort to get out,if only to appreciate being in.
Somehow that translated into a trip shopping at Westfield , a major shopping centre nearby. Think it is one of the largest in Europe and is no doubt fine if you want to buy a phone, clothes, shoes or handbags. Not so good if you want to buy a lampshade, even the big M&S had a really small home area, again only good if you wanted som bedlinen or a cushion.
The reason for the new lampshade is a rather tricky moment with a glass of red wine accidentally spilt the other evening, right down my cream wall, over my cream cushions and tastefully splattered over my cream lampshade. Managed to recover the wall and sofa cushion but the lampshade was beyond repair.
After my searching and a totally bewildered Ray who spent the hour wondering how he had been bamboozled into his least favourite activity , Laura Ashley came up trumps and we returned with the lampshade.
Will be quite some time before I prise him out of his hermit shell again.
Sitting in the warm looking out at a cold, blowy day. Nothing at all planned today other watching old films on the TV. Ray made a fantastic potato and leek soup with garlic croutons, which was just what the doctor ordered on such a day.
He still has his cough , however, the test results came back yesterday and confirmed no infection found, which I think is good news. Any bacteria that had survived four weeks of two strong antibiotics would have proved scarily resistant. Hopefully, the main infection has now gone and the faint crackles he still gets occasionally as well as his cough will gradually disappear. There is a chance he has been left with a viral infection, in which case will need to make sure he doesn’t start to relapse but here’s looking at a problem free recovery.
All the advice seems to be take it easy, drink plenty of fluids ad eat well. Apparently it is possible to get good days followed by a bad day, which is why it is important not to overdo it.
Looks as though next scan will be around the end of January, so lets hope for some good news of stability. For now we can enjoy the remainder of 2011.
We will deal with 2012 when we have to.
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The usual Christmas Day of food, presents and a couple of glasses or two of wine. In fact it was only a couple of glasses for me as I was driving. We got down to his mum and dad’s for lunch at around 230pm, he achieved his target of no drugs by Christmas, although not exactly his best day.
He was really tired, we went to midnight mass on Christmas eve and I think that had taken more out of him than he realised. He had a lie down after dinner but perked up again around 7pm, so hopefully if he gets a full nights sleep tonight boxing day will be better.
The night sweats have returned , which is a bit worrying, plus although he is now off the antibiotics , wouldn’t say he is clear yet. We are waiting for the test results from the hospital, as it is Christmas they have been a bit delayed, so we will phone up the GP on Wednesday and chase them up.
Santa brought lots of presents plus a case of wine from his parents, so now we will start to look towards 2012. Easy to guess what I will be wishing for, hope all meso warriors and their families had a great day.
Received a lovely gift today from a talented friend, have attached a photo as it is now proudly hanging on my door. Must be great to be able to make these sort of things, unfortunately a talent I sadly lack.
Just finished wrapping a few more presents, Ray is now hard at work sorting out the “man drawer” given it doesn’t even have room for a book of stamps anymore. This is usually when we realise I have been stockpiling batteries, pens, odd bits of string etc , in fact anything that we thought might come in handy – but never does, until it gets thrown out of course.
Just for once nice to have a countdown that isn’t hospital orientated. The tree is up and decorated, most of the presents are bought and wrapped and all the food has been delivered ( and the alcohol of course), so I am feeling suitably smug. No doubt will realise I have forgotten a present for someone very important about 4 pm on Christmas Eve.
As we start to get withdrawal symptoms if we go too long without some hospital involvement, Ray did deliver the sputum sample this week, so we are now awaiting results. The crackling seems to be returning , so a bit concerned that the bugs are turning into rambo bugs and defeating the antibiotics. Unlikely anything will change over Christmas and at least it is milder so he can get out and get some fresh air.
Also tackled a hospital appointments helpline yesterday- though helpline isn’t the most accurate of names. Over the last two months we have received three different dates for the followup review with the surgeon. Thought I had better check which was the correct one in case they had us listed for all three. Let’s just say canceling two wasn’t the easy job you’d expect. Computer say No!!!
Hopefully no more talk of pneumonia, crackling, PET scans or hospitals until 2012.
- Scan Down, Results to Go (notthedestinationbut.wordpress.com)
The good news is that research into cancers doesn’t just have to be aimed at meso to be of help. Recently the Mayo Clinic in Phoenix, Arizona published some new discoveries in the ongoing war on cancer – a possible cancer vaccine.
Still at the mice phase unfortunately so still a little way off human trials, but the vaccine has shown to shrink cancerous pancreatic and breast cancer tumors in the mice by nearly 80%. One of the major issues in the ongoing battle with cancer is the body’s own immune system. Often, the immune system – the body’s natural defense system – does not recognize the cancerous cells and lets these cells grow, multiply and mutate.
It has also been found that the main difference between healthy, normal cells and cancerous cells is a protein MUC1. This sugar-based protein is prevalent in the majority of cancers. INCLUDING MESO
“This is the first time that a vaccine has been developed that trains the immune system to distinguish and kill cancer cells based on their different sugar structures on proteins such as MUC1,” said Professor Sandra Gendler, a Mayo Clinic researcher.
Nearly 70% of all devastating cancers possess this MUC1 protein – which the vaccine proves effective against – there is new hope for people afflicted with a wide variety of cancers, including mesothelioma.
So many brilliant people , doing so much work all over the world, no doubts that someday something will be found to bring increased hope to meso warriers of curative treatment – just all need to hang in there long enough
As our week never seems to be complete without a trip to a doctor or pharmacy, we thought we would ring the changes and see the local GP. This was to double check the latest round of antibiotics had worked.
Amazingly I found a november edition of a magazine, the others all seem to have articles on top 10 dresses for summer, which made me cold just looking at them. Unfortunately it was November 2010- still very little had changed in terms of advice. How do doctors surgeries have such old magazines?
The doctor confirmed there was still a very faint crackle when listened to via the stethoscope , so we got another week of the new antibiotic, plus a trip to the hospital on Monday to deliver a sputum sample just to double-check what we were dealing with and make sure we get everything.
It was good to go as Ray is starting to get anxious about fluid reaccumulating, plus he is very tired at the moment . Having had months of worry about not sleeping enough , he is now concerned he is sleeping too much, rather like living with Goldilocks.
The knowledge there was no sign of fluid, plus that fatigue is very common with pneumonia, the GP said he advises people to think of it as having a major operation as can take a good month to recuperate, helped to stop him worrying. So we are back on the P of petal again having gone off track a little over the last two days.
We might not quite make our drug free Christmas target, but fingers crossed the next antibiotic course finishes on Friday, so let’s hope nothing else gets spotted from the sample and we may just make it.
Although not a mesothelioma sufferer, the death of the writer Christopher Hitchins, announced today was a sad awakening. He was diagnosed in April 2010 with oseophogeal cancer, again a terminal illness with a poor prognosis of being unlikely to live beyond a year.
He was interviewed a couple of times , in the papers and on news night by Jeremy Paxman. His honesty and pragmatic approach to the illness, proved of great help to ray following diagnosis . He identified with a lot of what he said and we have been following the trials he was on in America closely, so it has been a bad start to the weekend to learn of his death.
In particular to learn he has died from pneumonia!! Hopefully we are seeing the back of this but again it has really hit Ray’s confidence – not a lot of PETAL going on at the moment. So think that will be our target for the weekend- to identify a few targets.
Winter now well and truly with us – spent far too long at the tube station this morning so took me ages to warm up. Cabin fever definitely setting in with Ray – having been warned that cold air is very bad for his lungs, it means we are really limited on getting out and about. Found out today it could take a couple of months for his lungs to clear all the pneumonia , so told him he’d have to take up jigsaws!! Alternatively could look at tortoise impersonation and hibernate – personally snuggling under the duvet and emerging around March awakening to daffodils sounds a great option to me.
My two cats are now permanently glued to the top of the radiator-
Slightly too optimistic yesterday with our crackle free day , as today we had a slight return of the crackle , but very much less than before. He also had one major coughing fit but again nothing like the hacking cough at the start , when he would literally be doubled over- so fingers crossed the antibiotics end on Saturday and then see how he gets on. Think the major concern is catching something else, so I am becoming equally wary about who I come into contact with , through work, travel etc – would be nice if I could just wrap him up in a big bubble ( with his new jigsaws inside!!)
At last our first crackle free day for about 4 weeks, no hint of a crackle in his breathing, so hopefully we can say bye, bye pneumonia. He slept fitfully last night, but not connected with coughing just generally poor sleep. Although not helped by the cats staging their own version of the steeplechase , up the stairs, past the bedroom door, round the bathroom and back down the stairs- for two small cats, the noise is more comparable to a small herd of ponies.
We did manage a short walk to the high St yesterday, only for the rain to start and catch us out. Obviously I was in the bad books for not having the foresight to bring an umbrella. We managed to dive into a local pub, have a beer and borrow one of the numerous umbrellas they had hanging up that people have left behind over the year.
It has been bitterly cold today,so have been two homebodies. The central heating is drying out the atmosphere which exacebates his cough, so humidifiers are appearing on the radiators.
The good news is he is currently off any painkillers and the tingling is finely disappearing from his feet, so if he can just get through the next five days of antibiotics, might actually be entering a drug free period for Xmas , now that would be worth putting on my list for Santa.