Hello Titus.

Hi

Gragon.

Thank you for your interest.

Although I was in hospital for four months I was  probably only conscious for about two weeks. This last couple of weeks at home has allowed my wife to fill in her side of the story.

I was being treated with Opdivo and the primary was stable.The small met on my spine was causing increasing pain in my hip.

I think the decision to treat it surgically was unusual.

Atop spinal surgeon from Switzerland flew in for the op and I am not exaggerating there must have been double figures in his team.

The plan was to hollow out the vertebrae , remove the met and then secure the vertebrae with a titanium plate and nut/screws.

That went well and I woke up in ICU. A few days later I was transferred to a ward and awaiting discharge to home.

And then;

My temperature and BP plummeted and i collapsed. I was diagnosed with meningitis fairly quickly and started on antibiotics . My wife was told the next 48 hours was critical. Im glad I was unconscious for that bit.

To say my wife was unhappy with the standard of care and cleanliness is an understatement but i don't want to go into that here.

It then progressed to ventricullitis. Apparently this meant that the clear liquid circulating in my brain had turned to ’custard’ They drilled a hole in my head to drain it off. my wife said i had tubes in every orifice in my body and they still  drilled more.. I woke up terrified in an underground ICU. A bit like a nuclear bunker. I was confused and frightened so I phoned 999 to call the police to say i had been kidnapped. They took my phone away after that.

various other hospitals on the long road to discharge and home.

My balance is not good and I get very confused but Thank God I am alive.

I will see the Onc on Tuesday so find out what the next step in the cancer treatment is. The realisation in how lucky I have been is just beginning to sink in. Meningitis is horrible.

i have had to retire so life is taking a new path. GP reckons it will take up to three months to get back to near normal.

Hi Titus,

What a nightmare but I'm pleased to hear that you are making some progress.  When I was first diagnosed it was because I went into hospital suffering from dizziness and as a result was nauseous and dripping with sweat.  It went away gradually but for about a week everything around me looked like it was rotating slowly anticlockwise and drifting slowly down at the same time.  I had to use a Zimmer frame to walk to start with and remember how frustrating it was when I tried to stand up but couldn't work out where vertical was and kept pushing myself sideways so I sympathise with your difficulty in finding your balance.  Despite loads of tests they never did find out what caused my dizziness but in the process discovered the tumour in my kidney.

I took the decision to retire a while ago now and don't regret it.  In my case I could retire on virtually the same income as I was taking home from my work so the decision had no negative financial implications only social and emotional ones.  I remain in contact with my ex colleagues, meeting one for lunch most weeks and going out on a Friday "after work" on occasion for a drink with a group of others.  Since I have left about four others have retired as well and we all keep in contact via a What's App group.  I hope your retirement is as pleasurable as mine is for me.

I see my oncologist on Thursday but fully expect to be put back on my meds after a three month treatment break.  I hope things go well for your appointment on Tuesday.

It is good to hear from you again and best wishes to you and your wife,

Gragon 

Hi

Effectively they have put the cancer treatment on hold for a while.

I am having an MRI scan tomorrow and then a meeting with the spine docs on Wednesday. They tell me that the titanium they used for the implant doesn't cause any problems with MRI. fingers crossed.

This will tell them wether the infection in my back is surface or deeper into my spine. My wife has been bathing and dressing it for the last two weeks and although a lot of puss has come not still not cleared so I am a bit concerned it is deeper and closer to my spine. Two weeks of AB’s haven;t touched it either.

i am getting stronger and now my appetite has come back expect that to continue. Still in pain but the Morphine patches and Oromorph help to control it a bit.

Morphine and whiskey do not mix (make me sick) so I switch to whiskey in the evening and keep the morphine for the morning 

The last two weeks have been hectic. It was our golden wedding anniversary last weekend. We went to a local hotel and all the family came. We had a great time. The biggest achievement was just getting them together. They all travel a lot with their jobs. I swear my son in law would spend less time in planes even if he was a pilot. Flew back from Hong kong on Friday and off to Dubai on Monday.

I am, No ........was a podiatrist in private practice so I will miss my patients. some have been with me for twenty years and have become friends. However if my balance comes back then i can spend more time on the canal and visiting my son and his family in Spain.

There may be something to this retirement malarky after all.

Best wishes and good to hear from you too

Titus

Hello Titus,

Congratulations to you and your wife on your golden wedding anniversary, quite a landmark.  My wife and I reach our 20th wedding anniversary next month and it seems to have flown past.

I hope all goes well with your medical appointments this week and they can get on top of the infection.  It is pleasing to hear that apart from that you are recovering well.  I had to chuckle about your evening whisky.  My dad unfortunately died as a result of oesophageal cancer about 14 years ago and as he deteriorated he was prescribed the high calorie build up drinks which were so sweet that he hated them.  At least he did until he realised that a generous measure of alcohol turned it into a rather palatable cocktail.  He managed to drink one every night after that experimenting with different flavour and alcohol combinations before settling on chocolate and rum as his favourite.

I used to work for the Probation service so not the sort of job where you were encouraged to make friends with the people you supervised.  However, I was luck enough to have lots of work colleagues and keep in touch with them.  I am meeting one of them for lunch today and on Friday will be attending a 50th birthday party for another.  I have a thirteen year old son so he occupies quite a bit of my time but I have found since retiring that I am rarely stuck for something to do and do have time to do things that I enjoy.  I'm sure that you will soon your days filled as well.

All the best,

Gragon

Hi

Not the best of news. i have to go back into hospital tomorrow for a week to have the infection cleaned out.

They are keeping me in for a week so they can make a culture  from the infected tissue grow it in the lab and then target it with a specific anti biotic.

However in a weeks time I could be pain free.

Thats good news

Hi Titus,

Sorry to hear that you are having to go back into hospital but hopefully they will get the infection sorted soon.  I delayed responding a little bit as I was not fully sure what treatment you would have and it brought to mind a treatment I once had.

Many years ago I had a pilonidal sinus which is effectively an abscess over your coccyx.  I had to go to hospital to have it drained under general anaesthetic and it left a cavity about three inches long and over an inch deep.  They needed the wound to heal from the base upwards to prevent a scab forming under the skin so they packed the wound with gauze soaked in fluid which removed the top layer of new skin to allow it to heal slowly in a controlled manner.  This was without doubt the one of the most painful things I have had to endure, made worse by the fact that I could not flinch.  The length of gauze was about ten feet long and obviously needed to be sterile, if I flinched as they were packing it in and it touched the bed they had to remove it and start again.  I was in hospital for about a week before they let me go home but the district nurse had to come round and change the dressing daily.

She used a different technique which was much gentler.  She mixed a couple of chemicals and poured them into the wound and they formed a porous rubbery cast which exactly filled the cavity.  She could them remove this, re-sterilise it, put on much milder chemicals to prevent scabbing and reinsert it into the wound.  It compressed as the wound healed and when it got too small she cast another one.  This was much gentler and I wish they had used this technique in the hospital.  I suppose as an individual it was much easier for her to try new treatments than in the hospital where there will be a whole process to go through before they change how they do things.  Hopefully your treatment is at the gentler end of the spectrum.

The good thing in my case was that as soon as the abscess was drained most of the pain went away.

I hope that the hospital have sorted out your antibiotics now and you are on the mend.

All the best,

Gragon 

Hi ,

Just wondering how you were getting on now.  I hope that all went well in the hospital and you are feeling better than you were.

All the best,

Gragon 

Hi  Titus,

Haven't been on here for a while. Been reading through your recent updates. Hope the infection has improved.

Congratulations on your 50th Wedding Anniversary.

Sparky

HI

Gragon and Sparky

Thank you the Golden Wedding was everything I hoped it would be. I had joked with the family that we wanted our weight in gold.I then go and lose thirty kilos over the last six months! Joking aside what they did I thought was quite clever. They filled a cardboard box with “Golden products”  Golden syrup, Golden Marigold gloves, Rice etc etc We had a great night.

Home again.Thank God I do think the Onc knew how important to me the GW was and arranged the hospital around it

Apparently the CSF, Cranial Spinal Fluid was preventing the wound from healing so they ran a tube from the wound site on my spine into my stomach. This is allowing the fluid to drain away and hopefully the wound is healing.

Sadly i am still in a lot of pain. Got to wait till the end of next month for a CT scan and then an appointment in early June. Spend most of my time in bed or on the sofa. Had a bath today. My first in six months. Feel good. There is some improvement but recovery is slow

Hi Titus,

Glad you had a great Golden Wedding celebration with the family. Sounds like you had a wonderful day. Great for lifting spirits and also giving yourself a boost and hopefully your immune system in your recovery.

Are they able to give you anything to help with the pain? I will keep you in my prayers that it will start to ease soon and your healing process will start to speed up.

Look after yourself,

Sparky