Tuesday, 13 November 2018

Yea to the Sutent

I think its around 9 months now that I have been on Sutent, my last scans a couple of weeks ago were very positive, all the various lumps and bumps seem to be under control. although as a contrast agent can't be used with the scans due to the poor state of my Kidney the detail is a bit limited and not much can be seen around the Kidney, but still its all going in the right direction.
I have now been able to drop my daily dose of Sutent to 25mg, this is half what I started on, to be honest I have no idea how I coped with 50mg, its been really hard going recently, I don't like to moan because so many people are have a far worse time than I am, but I think it has all gradually built up, apart from maybe the stomach pains, I don;t think there has been any major side effects, its the gradual wearing you down that is the problem, there are so many small problems that added together start to grind you down.
As soon as I new I could drop the dose I felt more positive, I have had a big problem with eatingf the last month or so, I just could not be bothered to cook, so have been eating quite a lot of rubbish, because my taste has been shot apart food all tastes the same, so this past week I have made a conscious effort to eat sensibly and its been ok, I have cooked most evenings and have felt better for it, the next thing I need to sort is exercise, I just have had no energy or inclination, I now have some energy I just have to crack on and do it.


Really pleased with the garden I have pretty much finished it, just need to see what is going to grow and keep on top of it.


Yup Pickled Onions are almost ready to taste, I don't expect I am probably supposed to be eating them but hey ho you have to have the onions.

Charity

I am now walking five dogs for various lengths of time each week, this is through the Cinnamon Trust who help people who are unable to walk their dogs anymore, great scheme and it stops me getting to serious about having a dog of my own.




Saturday, 21 July 2018

Not quite another August

Ok so the bad stuff first.
I don't smoke and I don't drink. The stop smoking was forced on me by Angina but it was something I have wanted to do ever since I started!! Unfortunately because of all the other health problems, I have  not gained any benefit from it other than saving money and  not having the smell and the mess and of course making my health worse. The drinking I just don't enjoy, like anything else I drink and most foods thanks to the drugs I now take they mostly taste pretty rubbish, the Sutent leaves you with this horrible Metallic taste that effects most things you eat or drink. Talking of Sutent I am now in my sixth month of the drug. I had my first CT scan since I started, a couple of weeks ago, this was all very positive showing a reduction in the various lumps and Tumors I have, to be honest every time I get a report I seem to have extra lumps in different places, Kidney, Lungs, Chest, Face,Neck and now Abdomen, anyway they are all smaller, yes it is great news but I am a little wary as two years ago the Clinical Trial showed a reduction in the first year but after that everything started growing again, but the idea of the Sutent is to give me more time which it is doing.
Ah the side effects! Yes I am very lucky, many people are literally going through Hell I am only on the Stairway to Hell! Unfortunately I thought as my body got used to the Drug the side effects would get less but it seems to be the other way round. It is getting a bit predictable, I am two weeks of taking Sutent daily then I have a week off then two weeks of taking drug etc. Second half of  week off not too bad, sleeping ok fair bit of energy but food and drink a bit grim, first week on Sutent much the same second week on Sutent it goes to pot, no sleep, no energy, everything aches, food is rubbish, covered in spots, skin is sore and itchy,spend half the time on the toilet, horrendous stomach pains and nausea to name a few, once I am on the week off this all improves very quickly so in general half the month is ok and the other half a bit rubbish.


Singleton Station


Singleton Station last saw regular passengers over 80 years ago after a lifespan of little more than 45 years, it is amazing anything has survived and now recent clearance of the trees has exposed the derelict platforms for the first time in several decades. All to do with an extension of the Centurion Way a cycle/pathway which runs north from Chichester in West Sussex, hopefully the site will not be sanitised to heavily.  

Clydach Station

Clydach Station on the Heads of the Valleys route between Abergavenny and Brynmawr is up for sale 325K. The fella who lived here did so from when his parents bought the station from British Rail in 1958, one of his brothers who has inherited the station was born here 60 years ago but sadly won't be moving in, so the whole history will end. Apparently a railway enthusiast interested in purchasing the station wanted to move a train of sorts to the site until it was pointed out it would be rather difficult with the local roads the only way would be to relay the track to Aberavenny!

Just to show that the big C isn't stopping me getting out and about, another explore has been a little closer to home, Dingle Station on the Liverpool Overhead Railway, although in typical railway confusion, Dingle Station is actually underground!

Dingle Station

The letters LOR can still be seen above the passenger subway to Dingle Station. The station site and part of the tunnel was used for many years as a garage, but a serious collapse in the tunnel closed it a couple of years ago, a large concrete wall has been built to support the houses above but its days as a business are over. 


Dingle Tunnel

Dingle Tunnel is home to a fascinating collection of old cars which are in a varying degree of decrepitude. 



Wednesday, 28 March 2018

Sutent for Easter

Three weeks of taking Sutent and it has not been a good experience. it is obviously working as the lumps on my face had started to get smaller within a week but at what price. I now there are many cancer drugs with much worse side effects and people are suffering way more than I am but bloomin eck!  The first two weeks were fine then almost over night everything started to go wrong, sores over my face, horrendous burning in my mouth when I try to eat anything, permanent nausea, awful stomach cramps, complete lack of energy to name a few, I even get out of breath just climbing the stairs!
I saw my consultant yesterday, and have now dropped the dose from 50mg to 37mg and have gone from 4 weeks on 2 weeks off to 2 weeks on 1 week off, and this is now my week off yipee!! I also came home with a bag of lotions and potions and creams and pills to help with the side effects, hopefully the change in the Sutent dose will make a difference, as I really couldn't have gone on like that, it was starting to make me think is it worth it. My Heart seems to be holding up after the operation so that is good news, I have a Pet scan in Manchester next month just to check over the Heart to make sure there are no left over problems, sadly with all the other problems I have I am not able to take advantage of the healthier condition of my Heart and to be honest at times I don't feel any better than before the operation, but the reality is that without the operation if the Angina hadn't killed me the stress and strain from the side effects of Sutent would have finished my Heart off.

Despite all the problems I have been out a little and went up to North Yorkshire when we had the second lot of snow and very wild it was too. In some ways it was just as well I was feeling so ill and didn't go out as it would not have been wise for me to be out in that cold.

 Goathland Station

Goathland

There was neither trains nor Harry Potter at Goathland and the Moggie seen in the car park is apparently used every day by a local farmer and has been for the past 50 years!

Yellow Peril

The yellow Capri belongs to a great friend of mine from Bolton and he uses it as his daily car, I have to be honest and say I would not want to rely on either and while the Morris Minor is historically interesting, 1970s cars do little for me as I was brought up driving them and was not impressed in the 70s let alone now, but each to their own and the best of British to them both.

Duke of Lancaster

I did have a day out on the North Wales Coast, mainly to photograph the remaining railway Signal Boxes before they were taken out of commission and as it was such a nice day I had a look at the ship 'Duke of Lancaster' which is moored at Mostyn, originally a railway ferry used on various routes to Ireland, after she was laid up she was bought to Mostyn to become a local attraction but years of legal wrangling and disputes has left her with an uncertain future.

Sunday, 25 February 2018

Trains Trains Trains




So how many model trains does one person need? Obviously very many if I am anything to go by. 




Another display case should join these this week and as I already have two display cases in another room I think that will be enough for the time being, apart from new releases, quite a few of which are planned for this year.



Gorgeous day today although just a little on the nips side, I managed to paint some planters and the garden gate, erm, the colour was supposed to be red but it looks a little pink to me but no matter I think I can live with it at least its a bit of contrast.




Finish painting the fence some brown on the small fence in the front garden then its get the soil dug and all the debris removed put some plants in, bit of pruning in the front garden next month when the worst of the cold weather has gone, small bit of decking in the back garden when I have a mind for it and that will just leave painting the garage door, amazingly apart from what I decide to do in the loft that will be the whole house and garden finished. Woo hoo!


Thursday, 22 February 2018

Nice bit of Dereliction




Manchester Mayfield


Courtesy of https://www.jonathanschofieldtours.com/ I spent a very enjoyable couple of hours walking around Mayfield station, it was nice to do it without all the agro of climbing fences and dodging security. Mayfield is a very popular destination for explorers, unfortunately it is getting harder these days to get into sites as exploration is frowned upon by the powers that be, and often buildings are demolished as soon as they become empty to stop Arson and other stupid acts. Mayfield was going to be demolished a year or two back and sadly most of the Canopies were cut back but it gained a reprieve, the latest developers have plans to incorporate some of the building in a regeneration project with the usual apartments ,shops and green spaces. While this is all very laudable, the site should never have been sold and should have remained in railway ownership, something akin to selling the family silver! 
Piccadilly station is hopelessly over crowded, by both trains and passengers, especially the two through lines which form the main Manchester-Liverpool services, if anyone has had the misfortune to travel on the Trans Pennine Express trains they will know exactly what I am talking about, incredible that today's Health & Safety regime means that you can't sneeze without someone ready to take control and whisk you of to hospital yet train operators are allowed to force passengers to use platforms and trains that are dangerously over crowded. This is in 2018, what will happen in 10-20 years time? Mayfield could have been the safe guard for the future, through platforms built to ease the congestion at Piccadilly, dedicated platforms for London trains! Of course this would all have cost a colossal amount of money but so will the proposed development, unfortunatey a railway station would not generate vast wealth for a handful of people. 
This country puts profit before anything else and the powers that be are incapable of looking at the bigger picture and to the future, but then politicians and developers are not interested in the future as that will become someone else's problem, funny really as that's exactly the way it was in the 1950s 1960s.......



Tuesday, 6 February 2018

Cycling

After over four months I have been out cycling, quite a big achievement and quite pleased with myself.
Nearly a month since I had my Heart operation and the stents inserted in my Artery, a bit grim at the time, I spent a night in Manchester Infirmary, not the nicest of hospitals, way to big and too many people trying to do too many things and then forgetting to do many of them. Of course I managed to pick up the fly bug while I was in there so the next couple of weeks when I should have been recovering I was in a very bad way feeling very rough, the worst part about it was I had no idea if the operation had worked or not, as I was so short of breath presumably from the flu that it was a good couple of weeks before my breathing settled down and it became obvious that the operation had been worth it. I still get a little short of breath but nothing really to worry about and I have had no feeling that I might get an Angina attack, hence why I started cycling again, it will take some while to get reasonably fit as I have no strength in my legs but its a start.
My Kidney functioning has been gradually deteriorating, quite a noticeable difference between November and January, unfortunately the Angiograms and Scans put a lot of pressure on the Kidney as the various contrast agents that are used do not do it any good. I have a CT scan in a couple of weeks time but it will be without contrast agent, it will be the first CT scan since I stopped the treatment back in August and I am not very optimistic about what it will show, the Clinical Trial treatment may have stopped shrinking the Tumours but it had stopped  them growing, the lump on my face that I had Radiotherapy for last month has grown quite considerably since August so much so that I am very wary of being seen around people as it really is gross now and I certainly can't go out without trying to cover it up, I am told that thanks to the Radiotherapy it should just drop off, but it is taking its time and its not nice to see it in the mirror each morning, it looks like something out of a horror film, and I have to be very careful now I am on blood thinning meds as once it starts to bleed it wont stop and it gets very messy.

Liverpool Cathedral


Liverpool Metropolitan Cathedral


Chester Cathedral

My sister came to stay with me the other week, it was probably the longest we have spent together since we were kids and we had a great time, she has been so good to me since I have been ill and we get on so well and have a lot in common that I think neither of us realised. Her visit was very well timed as I was just starting to feel almost human so we were out most days and the walking and fresh air has done me a power of good. She is very into churches, so we visited a couple local that I have never been in and also managed three Cathedrals in two days. While obviously the buildings themselves are fascinating we also got a very warm welcome, Patsy has a habit of talking to anyone and everyone so we met some lovely people and while I am not particularly religious I do have a very open mind and enjoy talking to new people about their experiences.
I have to say I do feel the best I have felt for a year or more so I have many plans for the near future and quite a few expeditions planned, a few days in North Yorkshire this week a couple of trips to Glasgow and some local explores. My camera has been rather underused this past few months.

Tuesday, 9 January 2018

Hospitals

Day five done of my seven days in a row Hospital visits. Six days of Radiotherapy for the cancer on my cheek and a Heart Operation on Thursday in Manchester. The worst part of the Radiotherapy is the two hour round trip in the car, twice I have been on my way home before the time of my appointment. It is a little odd the treatment, i'm sure the equipment cost's thousands but there is no sensation at all, the equipment comes down out of the ceiling and is directed at my cheek then everyone leaves the room for a couple of minutes and then it is done, no sound, no vibration or feeling of any sort! I think the staff are just sitting outside playing cards and it is a big scam haha. Joking aside I hope it does work, as for the last couple of months I have a permanent plaster on my cheek as the lump looks hideous and is growing quite quickly and it is a very odd feeling to look in a mirror and actually see my cancer.
Thursday I am off to Manchester Royal Infirmary for an operation on my heart, along with thousands of others I got a call the other day to cancel it until 15th February but very fortunately when they read up on my circumstances it was reinstated, the thought of having to wait yet another month really knocked me sideways, a horrible position to be in, those poor people who have had their operations cancelled have my heart felt sympathy.
Lots of talk in the press about people at risk in the cold weather and the Flu that seems to be sweeping the country. The cold weather has caused me a lot of problems with my breathing and it is easy to see how things could go very wrong if I was not careful, I have been lucky and avoided the Flu, again I think I would be in a lot of trouble if I caught it, its only over time that you learn how vulnerable you are when you are ill.
This time of year I would normally be very busy with my exploring around the country and with some of the gorgeous frosty days we have had recently I have looked on rather longingly, its not so much that I wouldn't be capable of getting out and walking etc, I would with a bit of care but its more psychological, to properly enjoy something you have to be at peace with yourself and the world around you, something that I am not at the moment, I have a horrible premonition of the future, I am very restless and have this constant need to be doing something, which is great in one respect as I have finished all the DIY jobs around the house that needed doing, but it feels like all I am doing is trying to put off the inevitable.





Amazing to think it is nearly a year since I was in Hawaii, with a lot of luck and everything crossed I will be there again in a few months.