Relax & Enjoy The Ride!!

Hi there fellow blog land people. I just thought I had better write something as I’ve been a little quiet of late I know, but to be perfectly honest my life has been somewhat boring lately. What I mean really is that my health has not been causing me many problems, if any and I haven’t really been back and fore Heath Towers for any poking and prodding although in saying that I am up there at the end of this week for a double whammy!! I am having my usual 6 weekly dose of Immunoglobulins then I’m going straight in to see Merlin afterwards although I am hoping that I may be able to see him whilst I’m at the Day Unit having my infusion as that will save no end of time, or at least get them to take all the usual bloods that he wants whilst I’m there. So fingers crossed for me then pretty please!!!!

I’ll tell you what I have been doing this week and that is having my usual Reflexology with the delightful Judy. I actually have a session every other week and the other week I go to same place, “George Thomas Hospice” but go to a Relaxation class instead. I have always found both of these sessions extremely helpful and I guess although they are very similar I seem to feel quite different after each one. Usually after the Relaxation session I come away feeling quite alive and if I could walk I guess I would have “a bit of a spring in my step” as they say. It doesn’t quite work the same in the scooter though. After the Reflexology session though I usually come away absolutely shattered and weak. All I want to do is curl up and sleep, which as you can guess might cause a bit of a problem if I’m trying to drive at the time. Thankfully Judith comes with me to most of the sessions so at least she can drive home afterwards. I have had a number of strange feeling / experiences whilst having Reflexology which thankfully have all been nice ones although I know you can also have the opposite too, I’ll have to stay away from them!! I actually had one this week. We were probably half way through the session and I was very relaxed with my eyes closed and I guess bordering on the edge of falling asleep or staying awake when all of a sudden I felt this like very fast spinning at the base of my spine, somewhat like a small Catherine Wheel, it was really warm too. Then in a matter of milliseconds it shot up my spine and felt like it had just disappeared out of the top of my head. I think I might have startled Judy a little as I sat up bolt upright with eyes wide open ha ha ha!! It was a really nice feeling all warm and somewhat tingly. Most of the other feeling I have had in the past have been quite similar as in they have felt either warm or comforting or even the one time made me shout out with laughter much to the surprise of the poor woman treating me at the time. Next week I am going to have a bit of a day trip to get to the session. I am going to get there by train on the scooter which is something I have never done; well in fact I think it must be about 15 years since I even went on a train. I have looked into it and it is all possible such as access etc and besides that I can stop off in Cardiff on the way for a little retail therapy as I will have to change trains there anyhow. I’m quite looking forward to it now, I know it sounds really sad but it’s like a whole new exiting adventure for me. I was thinking of maybe taking pictures along the way to prove that I have managed to do it by myself so I may well be posting them next week so keep a look out.

Okay then I is off to watch “Dragons Den” and maybe a Bacon Sarny or two.

See Ya!!

The Good Old Bacon Sarny!!

There have been a lot of references recently both on here and on Peters Blog too. Its one of the great British dishes that is pretty much loved by all and I think if a poll was done of Vegetarians the one thing that would make them return to eating meat would be the Bacon Sandwich at least the ones I know would anyhow. It has started me thinking of all the many ways of cooking and therefore eating one.

I guess there are huge varieties of various Breads ect in which to serve the Bacon, although my particular favourite is a nice warm fresh baguette with lashings of naughty Anchor Butter, the Full Fat, Loaded with Calories version obviously. As for the Bacon there are so many different flavours along with the obvious Smoked / Unsmoked argument there are hundreds of forms of smoking treatments available, most of which I have probably eaten at some time or other over the years. In this respect I don’t quite have a favourite really. Then there is the minor point of “How To Cook It”. This is purely down to individual tastes I guess although for some I suppose there is the health implications that frying food may cause. So, do you Fry or do you Grill?? I used to Fry all the time and still occasionally still do, although I have recently discovered way of cooking the Bacon that really enhances the flavour of the overall sandwich to an amazing level. The other advantage of cooking it the way I do is that it is works better with the cheaper range, you know the stuff that’s usually pumped full of water to increase the profits.

Have you guessed what it is yet??

Give In??

Okay, I’ll tell you. I put it on a smallish plate and Microwave it. “That’s not exactly that unusual” I hear you cry and yes I agree to a point but let me continue. If you use a cheaper type of Bacon that’s “Full Of Water” what happens to all that water when you microwave it?? You guessed it, it comes out and stays on the plate. Okay, following so far?? Okay then, after micro waving your Bacon for just around 1 minute for 3 slices then removing and turning over and cooking for a further 1 minute you are left with 3 slices of nice cooked juicy bacon and if you are lucky and have followed the advice and bought cheap Bacon you will have a load of deeply flavoured Bacon Juice. What I do is spread the Anchor on the Warm Bread which obviously melts in, then, this is the thing that makes all the difference, I pour all that lovely juice onto the bread and then place the bacon in and Munch away in a heavenly bliss, savouring every Bacony mouthful. You really ought to try it, you won’t be disappointed honestly. I just had a thought for those that like their Bacon a little crispier than I do, you could always cook it this way first to suck out all the juicy goodness then pop it under the grill to crisp up.

All this talk of Bacon has made me really hungry I’m gonna have to go and make one now to alleviate this urge. Sorry!!

See Ya!!

(I can’t believe I just wrote a blog on Bacon Sandwiches, I really must get out more)

WOW!!!!! Check out this ground breaking thinking by “The Man Who Can” Mr Blair. The story’s HERE. He has used the single brain cell that was left following his Lobotomy Operation in the George Bush Memorial Hospital last year to come up with an amazing idea to get the NHS to work more efficiently. The idea is to use things like the Operating Theatres in the evening and weekends to try and cut down waiting lists etc. Now you may call me “Mr Cynical” or quite probably something much worse, but I was thinking this very same thing when I first popped my head out into this cruel world all those years ago. It has always seemed senseless to me why operations are only more or less done Monday – Thursday 9-4 and some occasionally on a Friday, that is obviously apart from emergencies. As you know I have ranted on about this on quite a few occasions as I think it is such a waste and with no real excuses why it can’t be done, well apart from the darling Consultants beauty sleep being disrupted or more like reducing the time they have spare to see to their Private Patients. If you think of it mind you, the consultants Private Patients are mainly NHS Patients that are not prepared to wait to sometimes months or even years to have the treatments needed, so it is in the consultants interest to not push this longer, more efficient use of services forward is it? Why should they think they have this overall power over how the NHS is run just because they are the ones doing the things like operations etc as the way I see it they are only another cog in the wheel along with all the others like nurses, porters, cleaners, catering staff etc and should have no more clout.

The main problem I can see which will almost certainly stop this revolutionary thinking going ahead and that’s the funding from the Primary Care Trust as at the moment they are having to cut back on some non emergency operations etc due to lack of available funds, so where the money is going to come to pay for all this extra work etc is a complete mystery. Maybe a huge hike in Income Tax or there is always the route of Private Insurances being used to contribute towards the cost of operations, at least that way the fairness will be that the people actually using the service will have to pay for it and if you don’t use it you don’t pay for it. I admit this will cause all sorts of other problems but you show me a system that will not cause any??

Ah well!! On a lighter note my appetite appears to be well and truly back much to the Local Tesco’s stores delight. They were beginning to worry about the loss of takings resulting in my not buying much food of late. They don’t have to worry no longer, it’s my turn to worry now as I have to find the money to pay for it all. You don’t think of things like that until you come across them. I recon that all people on Steroid Treatments ought to receive an allowance to use towards the extra cost of food needed to satisfy the maddening rampant appetite you get whilst on them. My ailments are all behaving themselves too at the moment which makes a change, so not a lot to report their either. I’m not up to much this week either as Jude is on a first aid course all week and so getting out and about becomes a bit difficult to say the least if not impossible at times. I am going to another session of Relaxation tomorrow which will require me having to try and put my scooter together when I get there which although I have seen done a few times I have never attempted it on my own so that should be lots of fun. At least if I get stuck there should be plenty of people around in the centre to lend a hand if I need it.

Okay off to try and hassle the Social Services again, wish me luck!!!

See Ya!!

That’s Quite Strange!!

Do you know what, I just looked through the blog and it confirmed my thoughts that I have not actually mentioned my, to all intents and purposes failing health at all, nought, zilch, zero in fact!! Now I guess your thinking that this is not that much of an issue in the grand scheme of things because hey, yeah, global warming is still a reality and yes whether we agree with it or not we are still invading Iraq and loosing as well as killing innocent lives every day, I suppose my pretty much minor problems such as struggling to breathe and standing up straight and actually even playing an extremely tiny role in life’s rich tapestry are quite trivial. I would say I would probably be thinking exactly the same but seeing as I am talking about me and actually having to live as me I am beginning to see this as maybe just that little step closer to actually returning to some normality.

Now I am what might be called a realist, especially in matters concerning my health and also know that after speaking to all the many professional people involved in the many various areas of my over all well being such as all the consultants including obviously Merlin as well all the nurses etc not one of them has ever given me or will ever give me, the assurance that this will one day all get better. It is sadly the case that this is it for life, which obviously, hard as it was, I, along with many hundreds, actually thousands of Leukaemia patients have had to deal with it in my own way. In saying this though there have been times such as now where I have in all honesty not had any major health problems to talk about and then start to question whether this really is it and maybe there is hope on the horizon??

I know those of you who follow fellow Blogger Peter will know all about the recent turn of events in his condition and treatment etc and if you read back through previous post you will also see the extremely windy road he and his loved ones have been on for quite some time. It actually makes me feel very much like I’m a trainee at this whole thing as yes, I have been left with a few medical complications after having the Stem Cell Transplant from my Little Sis which you all know about but he has had to endure numerous Stem Cell Transplants and Donor Lymphocytes etc which each time you will believe will actually do the trick and get you out of this once and for all. Then when it all sadly goes wrong and doesn’t have the desired effect you are left to deal with the consequences, which must be so hard. I do hold the utmost respect for them all for being able to deal/cope with this as if I am completely honest I don’t think I could be so strong.

I know when Judith and myself were told that I had come out of Remission following the first lot of Chemo 3 years ago, which seems a lifetime away now, we were devastated and I remember feeling then, that all was lost and actually had to fight damn hard to stop myself from just totally giving in and accepting the inevitable. Thankfully I had a lot of very supportive people around at that time who basically convinced me to fight this bloody thing and not give in. I suppose from there it snowballs in a way because if your anything like me, a stubborn bugger, I have the attitude that now I have fought this thing and put so much energy into doing so and put my family and friends through so much there is no way I can give up now. I had my chance 3 years ago when I was faced with the Red And White Doors and made my decision then to fight to the bitter end and that is what I intend to do.

I guess though I can’t help having the odd feeling that maybe it will all just disappear one night while I’m asleep and it’s all actually been a dream although as the years go on this feeling I admit is growing a little thin!!

See Ya!!

Viagra Trial!!

Following on from the last posting I couldn’t quite believe my eyes when I saw this latest news item from the BBC. Find it HERE.

It’s all about a Trial by High Street Chemists “Boots”, to dish out up to 4 Viagra tablets to all and sundry without needing a prescription. They’ve decided on a good day to start this trial which happens to be Valentines Day, How appropriate hey? Now maybe I’m just a cynical old git in thinking that by launching on this day people will look more at the Romanticism in it and not the much more serious matter of dishing out Prescription Only pills to one and all. Yes I know that hey have stated that they will attempt to do some basic tests at the store on patients obtaining these but you and I know that these will either not be done because of busy staff etc etc and even if they are they will nowhere near replace the experience and knowledge of a Trained professional i.e. a Doctor/GP. After all if this medication was safe enough for it to be given out “Over The Counter” so to speak, then it would have always been this way as in not needing a Prescription. Viagra is a pretty powerfull medication whose whole purpose is to increase blood flow via changes in the heart rate amongst other things and so is not to be played around with without caution.

There are lots of strong arguments I know in making a number of medications that are at present “Prescription Only” into “Over The Counter” administered and rightly so too, but I strongly believe that this one is most definitely not one of them!!

They state their main intention is to try and promote the treatments available for Male Sexual Dysfunction as it’s a bit of a Taboo subject that a lot of men will not go and see their GP about. But do they really think that someone who is not prepared to face say a 50yr old Male GP in a Private Consulting Room to obtain these pills but they will however go into a High Street shop and talk to, what might be a young Female Pharmacist about it?? I can just picture it now. A man finally gets to the front of the queue and asks the pretty young Trainee counter assistant for some Viagra. She shouts out at the top of her voice “Betty, this man want some Viagra, shall I send him over to you?” to the Pharmacist on the other side of the store. If this is truly their intention then maybe there is a better way of using their Branding to promote the issues I think.

See Ya!!

E Doctor.

I don’t know if any of you saw the short documentary on e doctors and online prescriptions etc the other day. It was one of those Tonight with Trevor McDonald programmes.

It threw up a lot of quite startling information on such things as how easy it is to get more or less any “Prescription Only” and even drugs that have been banned from use in the UK and all without the need for a Prescription, not even a consultation from any sort of Medical Professional. All that’s needed is a Credit Card and a Mouse and a wait of maybe around 10-15 days for the actual drugs to arrive from their foreign destination, quite often Canada or India and of course the good old USA, who have to have their share. One of the most frightening facts that came out, and I really cant believe this is right but it is, and that’s , it is NOT ILLEAGAL to buy or be in possession of these only its Illegal to sell them. Think of this example, you are only allowed to purchase 2 boxes of Paracetamol (around 24 Tablets ish) from Tesco’s but you can go Online and buy 1000s of say Prescription Drugs used to treat Heart Disease which if not controlled will actually KILL YOU!! Is This Right???

In this day and age where almost everyone has access to the Internet and it is pretty quickly becoming the favoured place for people to purchase whatever they want, this is obviously where people will come to get their drugs especially when the Prescription Charges keep going up and up, although I count myself lucky in that respect as living in Wales, I have the benefit of currently only having to pay £3 per item and from April this year the Charges are being scrapped all together so it wouldn’t be any cheaper for me.

I know that since the onset of widespread Internet availability the huge resources available for searching out information on such things as Illnesses etc has been a god send and even I have often used it to try and find out a little more about my condition etc and yes, it has helped a lot, well at least once you’ve trawled through the first 50 or so entries on Goggle which all seem to be American Based Web Sites and all tell you that you are going to die within a few months. Where it is helpful I guess is where you may have a rare condition as I would think that information if there is any available would be out their somewhere I suppose if you know where to look.

There were a number of cases featured on the documentary of people with I guess what you would call common illnesses/diseases, such as Lung Cancer and Breast Cancer as well as a few more rarer things too. Some of these people have seen remarkable results after using treatments bought for often £1000s and not available on the NHS, there is obviously a down side to all this in that sadly a lot of people will die experimenting with these as well.

I know I have mentioned the lovely people of NICE on here occasionally and fellow Blogger Peter has written a few interesting articles on them now and then and I cant help but feel that they are somewhat responsible for a lot of people having to resort to the Internet and the drugs available there. I do understand and also agree to a certain level that there needs to be some control when introducing new drugs to the public etc but cant quite understand why they insist on taking so long over doing it, sometimes years and years. There is the obvious pressure from the Treasury to control spending, unofficially of course which tends to rule out a lot of newly available, take for example the recent Tamoxifen cases for Breast Cancer. Tamoxifen is just one of the millions of drugs Freely Available Online with Prescription. On the other hand there is obviously the recent case where there were some pretty fatal complications whilst trialling a new drug, so yes there is a very good reason for the cautious approach but I cant help but feel that we are too cautious in this country after all even to be able to sell in the countries that are selling them they have to meet certain standards before they are allowed to sell them don’t they?

In some ways I don’t want to make such a big thing out of the fact that it is Illegal to buy this stuff as I understand how desperate people can become to get treatment for there conditions when the NHS turns their back on them etc and would not think twice of doing exactly the same thing myself if needed, however I think it is worth trying to shout loudly at NICE and possibly the NHS in general to pull their finger out and come up with a better approach to this than is currently used so that maybe more lives will not only be saved by the positive interactions from these drugs but also from being monitored whilst taking them and obviously prescribing them properly.

Ah Well, that’s the rant over for today. Pretty serious for me I know!! It does take a lot at times to rattle my cage so to speak but this has been on the back burner for a while now so has had time to mature/fester etc.

See Ya!!

p.s I do like the Bacon Sarnies on prescription idea from Peter, I will have to start a campaign for that one. Any Takers??

Well that wasn’t supposed to happen!!

I’ve not been on top form of late as you all know, and to be honest I was heading I think to another stay at Heath Towers sooner rather than later. My main problems were, loss of appetite, feeling sick and also dry sore eyes. Well over the weekend the sickness got pretty bad and actually resulted in me more or less spending the day Saturday looking down the Big White Bowl calling for Huwie, not a pretty picture I know. It didn’t help that I had run out of Anti Sickness pills and the local chemist was shut all weekend for a change, so I couldn’t get any more. It did get so bad later on that I eventually had to call out the out of hours GP. What an experience that was, and not a blinking good one either. After continually calling them up when they said they would ring me straight back, well straight back to me means 10-15 mins at the most and when 45 mins goes by what do you expect me to do?? The doctor actually got out to me 5 ½ hours later and then he was here about 2 mins just to give me some replacement Anti Sickness pills and off he went. It’s all down to this new service they have had to join for out of hours coverage which is a central call centre and an area to cover of around 50 miles covering 3 boroughs. I know when our own GP practice used to share the on call amongst themselves the service was super efficient and the fact that they knew you made all the difference in the approach to your treatment and not just the what appears to now be, care free approach by this new service. It does in all honesty look like it’s an accident waiting to happen and that sadly someone will end up dying because of them.

The cause for the lack of appetite and also sickness so I found out was the withdrawal of steroids. Well I know that they would cause the lack of appetite but not the sickness. I have been reducing them over the last month or so under Merlins watchful gaze, but I actually started back on the original dosage Sunday and it’s Wednesday now and the sickness has gone and the appetite is on the way back too. So I will be back on the Bacon Sarnies and dare I say it T-bone steak. Following a visit to see Merlin yesterday we have decided to still try and reduce them but much more slowly than before, this way my adrenal glands won’t have such a shock trying to deal with the additional work.

The sore eyes on the other hand are a different thing. They have become extremely sore and quite mucky too, so much so that I can’t open them for long periods of time instead just a few seconds really as its too painful, and I need the help of a JCB in the mornings to get them open. He gave me some antibiotic eye drops yesterday to take for a while which as it happens have started to work pretty quick thankfully. So much so that I have been able to sit and write this, although it has been a bit more, stop, start than usual and you’ll have to excuse any spelling mistakes that the spell checker hasn’t picked up.

My chest problems thankfully seem happy at the moment to take a back seat and just watch while all the other buggers try their best to get to me, nut you can be rest assured it’s watching and learning and probably even planning it’s next Battle Plan. “C’mon Big Boy Give It Your Best Shot, I’ll Be Waiting For You”

Okay that enough punishment on the eyes for one day, I’ll try write again soon.

See Ya!!!

I’ve spent some time recently reflecting on where I am and also the path I have taken to get where I am too. Some of this I know is very likely because of reading Peter’s blog as those of you will know he has had to face up to some pretty serious issues of late. I do though tend to do this sort of self analysis occasionally and actually find it quite useful and inspiring.

Do you know the feeling like, when someone says to you,” You look well”, or “You’ve put on weight” when you cant see it in yourself though? Well that’s happened a lot over the last few months, mainly the “You look well” one instead of the “You look fat” one thankfully. Well maybe I do look well to other people but seeing as I never look in the mirror I guess I haven’t noticed the change. Its kind of “Seeing is NOT believing”. I’ve had this problem almost from the initial diagnosis and subsequent Chemo in that I honestly do not recognise the person looking back at me in the mirror as showing any resemblance of me prior to all this. This may not sound like much of a problem in the grand scheme of things, lets face it children wont starve because I look different etc but to me it is quite an issue. You see I sometimes take this as if, okay, it’s just one more thing this illness has taken away from me, but other times I feel like this illness has completely stripped my identity away which is quite scary. I can understand that drugs such as the steroids will make my face all puffy etc but I think it isn’t just that that has made a difference, my whole facial appearance is completely different. There is nothing I can do about it I know, nor would I want to anyhow I think, I suppose I could always have one of my photo’s prior to d day blown up and replace the mirror with that therefore I will see a friendly face when I look in the mirror anyhow.

Okay then. Let’s update the sickness situation. Yes sadly I am still feeling a little sickly but in saying that it is nowhere near as bad as the last few days, so things are heading in the right direction. My eyes on the other hand are really getting on my nerves. They are really dry and sore and despite putting on copious amounts of eye drops they are having no effect at all. I think a trip to the eye clinic will have to be done soon as I can’t keep on like this. Surprisingly my chest is not causing me any problems at all at the moment, apart from the obvious breathlessness when I do anything strenuous like drinking a cuppa etc etc. I must say it is highly unusual for me to not be in and out of hospital this time of year so maybe the Immunoglobulins are actually doing what they are supposed to be doing. I’m sure the nurses are pleased to not have me back on the ward to pester them. I am hoping that the next visit to the Wizard which I believe is next week, will have some more news on starting this treatment in Birmingham. Fingers crossed!!!!!

Right I’m off to investigate why it is that Russia is planning to spend 180 Billion Dollars over the next 5 years on re-arming itself with things like Subs, fighter planes and even nuclear warheads. Sounds dodgy to me.

See Ya!!