A Dairy Of A Mesowarrior. Living With Mesothelioma No Internet for over a week.


The journey to the Marsden was the worse journey we have ever had.

3 hours of dark at 6am, heavy rain, lorries and spray, and stopped traffic.

You arrive as a nervous wreck. 3Hours later

I hope we never have it like that again but with a bad winter being forecast I bet it was the worse.

We relaxed in the waiting room and was called for bloods very quickly so we felt we were all caught up.

The nurses were all cheerful and we were soon laughing again.

Saw the doctor and everything was good with my bloods but the Biological ones were not done yet.

So we had a walk and bought our sweets as I love to buy things there as the profits go to the Marsden Charity. The shop is run by volunteers.

We went back to the waiting room where a mesowarrior had arrived.

Richard and Me relaxing

I had already told a nurse that they have a warrior coming for assessment to a trial. She was amazed I knew and and that we are so together with this disease.

We are as there is nothing like our groups as Mesothelioma.

We share so much info and we are getting recognition with in the NHS. They now come to me to share info with the Mesowarrios. Very proud of my friends’ as we are now helping in giving our opinion on trials and I share surveys for the NHS to collect info Or British Lung, or Mesothelioma UK they are learning from us all the time here in the UK.

Its good that something good can come out of something so bad. The curse of Asbestos.

Anyway we had a long chat in the waiting room with our friends so the time went by better.

They went after chatting to the doctor and Ray and I fell asleep. This waiting and waiting grrr.

The Nurse kept popping in and saying that they had tried but there was nothing yet.

At 1pm she said the Doctor came and said the bloods had been passed. So he ordered the drug to be made up.

I finally was called in at 3.30 to sit and wait in the ward and made us a cup of tea. As there were 3 of us in the same position it became a tea party and Ray became the waiter. The lady sitting next to me was playing bridge on her iPad so I gave her Rays puzzles to do but the signal was bad so she couldn’t play, she has them for home.

4pm my drug was up and they checked it in and weighed the bag everything has to be checked. Weight, quantity and all the numbers. Its very thorough, 4-15pm The drug was going in. HOORAY!!!!!

It was explained to me that the results didn’t come through all together on the computer so they had to wait for when they did. I didn’t know why that happened but Oak Ward is just as frustrated with Pharmacy. They have the worry everyday. I only have every 2 weeks to worry about.

Then on top of that the ward is so small and space is tight. Everything is moved about to get room for each patient as they attend to them. Its a constant battle and I sit there and observe and watch.

They really are marvellous as they work in such closeness all the time. And they always smile and are so cheerful. When I wanted to use the loo we had to move a stool and a trolley and then when I came back I had to re move them –Crazy.

Well I was finished so I said goodbye and it was wonderful to get into the fresh air as the sun had come out.

We left at 5.15 at the M25 was running well so we kept on the move, sometimes slowly, until the M20 and then congested but moving again. We arrived home 6.45pm gosh what a long long day we were exhausted.

I couldn’t believe the road to our Park. It must have been raining again very heavy as drains had waterfalls coming out of them, spraying up high in the air and water pouring out of gardens. Thank goodness it was if it was on flatter land they would have really flooded. The roads were and we slowly drove through the water. Through the hedge we could see the Marshes were flooded.

So much rain and its like a monsoon when it pours down.

We got in and Ray had to take Louis out for a walk —more like a swim. I got the dinner on.

They the Internet went down. We have a fault on the line -Great the end of a perfect day.

Thursday and still no line mended so no Internet and of coarse no land line.

They know where the fault is so we are waiting for an engineer to go to the Exchange and work on it.

We have an Old exchange at Whitstable and we have had many problems over the years. Last time this happened a Engineer from the Midlands was transferred here and he was brilliant. After years of dropping out and slow signals, he found that the cards where not man enough for the increased traffic. The Internet whizzed along when he had finished. We have since been slowing down again though and now a final stop. So many people have super fast fibre optics after having the roads dug up to lay the cables. That all stops just out side the Park as they say we come under rural. Crazy really when people across the road are on the super fast and we are on super slow old fashioned cable.

I have been trying to work on our dongle but the signal for that is poor and I drop in and out. Grrr

Anyway Lynne has just phoned Rays mobile to say Richard has passed for the new Verastem trial which is great news and so we have another Mesowarrior at the Royal Marsden.

We will only meet now and again as Richards visits are every three weeks so we go out of sync.

His is a tablet trial and I have seen there cancer patients on the trial and they are having good results so I wish Richard a great success.

So our day is waiting to get back on the computer and talk to the outside world again. Gosh you feel so lost my whole life is waiting on a signal.

Friday and still no phone or internet getting very cross now. The housework is all done Ray has finished painting the bathroom we are now looking round for what else we can do.

We found we had a Lounge last night to watch telly as we are always in the Den with the computers and hobbies.

You realise that everything is on the computer and up in the cloud.

What did we do before computers.

We have had computers in our house since the one with little rubber buttons. I would google to remind my brain but I cant google. No internet

Ah yes ZX81!! We didn’t have a Commodore but we had a Spectrum and the Amiga and gradually worked through the years with what ever came out as Ray loved all new Technology.

I will get on the phone soon and ask where or Job number is today. I’m getting very cross. I did get my laptop out but nothing is passworded in and my password seem to be muddled where I keep changing them to keep spammers out. That was meant to be me as well. So when I’m back on line I will be writing all my pass words down and making sure my lap top and iPad have all my programs on them in case this ever happens again. You learn lessons.

We need a better Dongle as well.

I have a phone but I never use it so another thing I must sort out.

You see I thought my life was over. Survival was never spoken about 6 years ago. I realised that this is going to be the basis of my speech at the Mesothelioma UK Conference next week. We can now talk about Survival.

So with the freezer defrosted I can go and shop for a reload something to do rather than planning what I could do to BT ha ha !!

Chased the BT Engineer but although the fault was found so fast there has been no news on the fixing. Might be today.

We have been shopping to fill the freezer and parked in B&Q car park but as we arrived there a huge lake of water confronted us. The car park is still flooded after all the rain Tuesday.

We diverted around it but a man in in a four wheeler dived straight through it with a wave each side going high into the air. I laughed and said to him “ What would you have done if it was deeper than you thought.” Oh I have had water higher than that.” But he didn’t know if it was a hole that was causing the flood. It could have been one of those sink holes and he could have disappeared. My mind imagines to much I think.

I went and did our shopping and Ray walked Louis.

When we got home I looked in the den and wanted to see all the lights on the Modem alight but know just 4 flashing and trying to connect still.

I cant believe this. We pay for a service and now we have had no phone since Tuesday and no one is saying when we will be back on line. 6.30pm Friday and not a happy bunny.

Saturday

Still no Internet

Its is a lovely sunny day and we should be away but once again the rally has been cancelled due to soggy camping site.

We have an appointment for the flu jab anyway and guess what? Its between 5pm and 6pm at the GP’s Where is this not working 7 days in the NHS that Jeremy Hunt keeps on about. The NHS is working 7 days right through from Hospitals to GP surgeries. I wonder if Mr Hunt is working today ??

So we have got the washing on and housework done, dog walked and maybe get into the garden. Ray is trying to find a human in BT as everything is push 1 push 2 extra extra and you come back to the beginning again.

We have a feeling we are being left to last as we are not actually a BT customer but a Pop Telecom customer so you have no contact within BT at all. They say our phone number isn’t even valid ??

When we are back on we will have to go back to BT as this is not on. I’m on a Phase 1 trial and I have to be in contact with the Royal Marsden. OK we have a mobile but its not the point. Not everyone has a mobile, but we pay for a phone line and it should be working.

I hate non service when you are paying for it.

I hate the fact that no one is in contact with us to tell us what is happening, or not.

The Engineers should be in the area so they could pop round and let us know. Or a card in the post but just leaving us so we don’t know what is going on is so frustrating.

So the saga goes on and on.

10 am Ray has found a human and only because he is switching back to BT. He has been very helpful and we are now know we are going to have the Super Broadband, as they are going to put our park on it soon, but at the moment we have to make do with 2 meg. We have never had that as 1.5meg is our highest so we will be whizzing along when we get the fibre Optics.

The only thing is he said that when you need engineering work for a fault it is given a time of 2 weeks depending on how busy they are. We didn’t know that so we have been wasting our time looking at winking lights and hoping they will come stable and a phone line back.

Open Reach are not BT as we had thought anyway so we still have not got to a human about our fault.

But we will be back with BT on 16th October.

Sunday and we have finished tidying the garden and everything is looking good for the winter. Feel really pleased with ourselves. The weather was just so lovely.

Dog walked and watched several films so a pleasant day passed.

Right Monday today we will be on that phone and blasting that we need the BT engineer to sort the fault on the line. A week is just not on.

I did wake up at 3.30am and saw the super moon and it was blood red. A fascinating thing and I was seeing it all from my bed. We must be facing the right direction. If only we could see the shooting star shower so easy.

Gosh by the time I copy and paste this into my blog it is going to read like a story I do hope I haven’t bored the reader.

Must admit my ribs were very painful last night, on the left hand side.

When feeling around I have a very misshapen rib cage on that side.

A couple of paracetamol and I did sleep though.

We have to get ready to go to the Mesothelioma UK Conference so will travel up on Thursday to Stratford on Avon and Im looking forward to meeting old and new friends. Louis will be dropped off at his favourite place and stay with my Son and DIL. He is severely spoilt there.

So now we are sitting around and waiting to hear if we are going on line today.

Wednesday The Open Reach man has been and we did have a phone and internet for 5 mins then it went off and now on so will post before we lose it again He found that the heavy rain had got to a cable joint.

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