I know a lot of you wonder how Tony is doing since he has been quiet lately. Due to his struggles with extreme pain, doctors have fitted a drug pump which ensures a continuous flow of opioids. Good news is, the pain issue is under control for now. However, this solution is a lesser of two evils, as the pain killers also affect the mind. It is very difficult for Tony to focus and he is unable to read and reply to messages. He is under 24/7 care at home.

We are working hard towards an alternative solution which allows for continuous local anesthesia instead of drugging the entire person. Hopefully we can achieve this next week. Until then, I will keep checking your messages to Tony and take care of any urgent and important matters.

Linda Mills

I spent seven days at Kalnes hospital, being treated for severe pain in my right leg. Despite all efforts, the medical team was unable to find a combination of drugs that would work satisfacory, even though my regular dose of morning pain killers is enough to kill a regular person. Consequently, I have been on large doses of morphine which eliminates the pain by numbing me completely, including my head. This made it difficult to focus, in fact it has caused quite a bit of confusion and hallucinations. For instance, I have been certain I have woken up in South Wales, and I have been hearing strangers’ voices next to me – just snippets of mundane conversation. I drift in and out of sleep, too. All in the name of pain relief. Of course, this has also made it challenging to follow messages and comments on Facebook. I normally enjoy communicating on Facebook with friends, fans and family, but lately it has been frustrating.

My wife has been with me day and night, only taking breaks to drive home to look after our animals. I also had two close friends over to keep me company. Tony Forsythe was with me several times as he is not only a good mate, but he also lives in the same city as the hospital. I also had a lovely visit from my brother Victor Cito Smaavik Borge which put me in good spirits.

The hospital staff has been caring and understanding. My palliative doctor Elin and my main nurse Åsa have been absolutely fab. They are working on different pain relief options for me which will allow me to get off the morphine and get local anesthesia in the nerves in my back. Best case scenario, I will have a fairly normal life again. Worst case scenario I may lose the use of my legs, but as it is now, I am still wheelchair bound and I can only take a few steps with support due to the pain. I am unable to stand up straight for the same reason and sleeping in a bed always includes a risk of waking up in terrorising pain. Still, I am not letting it deter me from having goals in life, both in everyday life and in the longer term.

I should mention here that the pain itself is, while quite disabling, not the end of me. I still have time left. If it hadn’t been for the pain, which is an unfortunate by-product of the pancreatic cancer which has metastasised to the spine.

I was allowed to go home on Friday. I have been fitted with a morphine pump which is attached to me through the skin. Unfortunately, the very same night, the pump malfunctioned and we had to return to the hospital the next day (yesterday). But I am now back at home, trying to catch up on everything. I now have a hospital bed in the dining room, transported and assembled by my wife and my wonderful brother in law Jon. We have rearranged everything so that I have a bedroom and workspace in the same room. My pal and best man Jon Løvstad came over yesterday and helped me set up my simple studio setup opposite the bed. I am excited about starting working again!! It may be a bit challenging as long as I am on morphine, but hopefully that’s just one more week.

My wife surprised me yesterday by giving me a Kay bass guitar, the exact same make and model as my very first instrument which I purchased from a catalogue in the late 70s. Few things make me happier than nostalgia from my own childhood and teens!

I know some of you have been worried about me this past week. With this blog, I hope to create some understanding of my current situation. Apart from the pain, I am still quite well, considering the cancer, but because of its intensity, the whole pain relief situation has been quite dominating lately. I have hopes this will change soon so I can get back to work. I just want to stay a working class lad, and I want to work for as long I’m still alive.

After a good nights sleep last night (which we achieved after the right meds), we awoke with a firm plan for the days activities. With 185mph winds over Florida and Tornado Dorian hammering over Bahamas and the Florida and mass shootings going on in Texas, my little tragedy seems very small. We had to negotiate and understand whether we had a blockage in the bladder at all, by measuring the waste, for the sake of the information, which we don’t. So that is good news. I don’t need a catheter to relieve myself of the waste. I only need one, to be able to have meds injected into my system, into my spine, after all, which is the plan. A catheter into the spine with the drugs that we shall feed in. A spinal catheter. We shall be here all week, just trying to figure out the logistics. Tony

Cancer blog SUNDAY MORNING / DAYTIME 25th AUGUST –

I’ll make this the last of the hospital BLOGS, because my memory is hazed with drugs and recollections are hazy.
I’m now effectively, resigned to a wheelchair, a shopping trolly, two crutches and a walking stick. That is it, for now. I am pretty much a crippled man with a broken spine, just waiting for the results of radiotherapy to have made some effect on me after the previous weekend.
Well, after a hazy Saturday night, I realised that when I woke up, kind of properly, I had fallen asleep all night in the wheelchair in the hospital room. And I mean ALL NIGHT. I went outside to smoke a pipe of Sweet Killarney, Irish Vanilla tobacco and then returned to my room for a wash and to think what on earth to do today on a Sunday, being away from home etc.
Anyway, I have medications to take all today AND the crew guys are coming from TNT to take me out to lunch. God bless them. So, I will hopefully get a push out somewhere for lunch. They are on their way here now, at 12.30pm, so
now, I’ve said ‘Goodbye’ to some hospital patients for the last time (because they are leaving) , then I wll sit outside in the Sunday sunshine and wait for the Crew guys to come and just relax.
Speak later.
Well, they came, they saw and they conquered!!! What great friends. And crew members, as working class men, were always people that I felt on an even keel with. Not rock stars, or deva’s, just hard working men. We were assailed by a drunk who took target to my English accent and insisted on bringing up the Germans. Eventually, the barman threw him out of the front beer garden. He came back ranting about how he was not anonymous and then disappeared altogether.
Lars and Bernt had been dedicated TNT crew for some years and I had spent many a long year journey in their van travelling to TNT shows, rather than just sit and become anonymous myself, on a tour bus enveloped in Norwegian conversation.
We talked and laughed for a few hours until late afternoon, when the wind picked up and I was getting tired. They ordered a large cab to get my wheelchair in, and took me back to Ullevale hospital and joined me in my hospital room to settle me in, before they left themselves an hour or so later.
It was pretty obvious, even after such a short time that my health was not what it had been, although I was not leaving the hospital for another 36 hours as such. The evening meds were the only things to consider really and all nurses were on the case with the ongoing upgrades in the medicine strength.
I did not do much in the evening apart from socialise with other Norwegian patients and then fall asleep in the hospital bed under the influence of sleeping pills and wake up the following morning.

Monday /Tuesday morning.
I knew I was leaving Tuesday morning, so all I had to do, was get the final RADIOTHERAPY sessions done and out of the way, both early sessions, which i got were done. The pain has grown steadily in my lower spine with the effect of the therapy swelling the cells on my lower spine and they told me it would get more painful than anything else during the final sessions. This is definitely the case. We had some logistical transport trips yesterday, to collect wheelchair etc, shopping trolley aids, crutches etc. All done. My wife was brilliant and I couldnt have done anything without her help yesterday.
She is spending her day today, getting me ready, to start running a farm full of new born puppies and handling all my own handicaps. Amazing.
We are going to the post office this morning after she has got my body coping with all the seemingly impossible things, so that we can catch up on posting merchandise to people for the new album promotion.
So, we will write again, after the post office/town trip when we get back this afternoon.
Tony

Wednesday afternoon.

IT was quite difficult in town.
Not the driving, that was the easy part as I have an Automatic gearbox in the car, but the parking and getting out of the car and negotiating the parcel sending of merchandise to fans of the music was very hard.
And getting home and getting back into the house, was particularly difficult,
Because of the amount of leg pain. I thought it would be easy, but it was not.
It was very painful, with a broken spinal vertebrae in the spine. It affects my
Legs a lot.
So, we are, effectively crippled with just a wheelchair, (a shopping trolley (which are both great designs and i would be lost without them – thanks to the Norwegian medical authorities) . I have lot to learn, still, about my own capabilities and what I can do and what I am not capable of.
Thank God for home.
Tony

CANCER BLOG / FRIDAY 23rd AUGUST / OSLO HOSPITAL

Opening weight – 83-.3 Kg

Fresh cool autumn morning; the right leg, slow to wake but I made
It ouside the hospital by wheelchair; I did not try and walk.

‘Wolf’, the night nurse, suggested earlier I try walking the wheelchair to the outside of the hospital, to see just how far I could reach on foot, then, if it was too much pain or discomfort, then I could get in the chair and complete my journey on four wheels. It was a clever suggestion.
I reached the front exit of the hospital exit doors, then I had to give up, because the pain in the right knee, was just too much to cope with.
By the time I got back to the ward, he had looked at the private wheelchair market with what was available for me to see what could be purchased in addition to the push around wheelchair that I will be supplied with from the governmnet/state. That was very good of him.
Of course, the price gets a lot higher with an electric motor in it.
So I am very lucky, to have a singing voice to rely on and to be able to carry on singing and earning money, which will pay for that. We all need money to pay for our essential items !!!
Now I wait for my morning nurse and my 0900 morning medicines before the radio therapy at 0930, this morning.
Speak soon.

I’m having another social meeting with Lars and family from the TNT crew tonight, which I am very happy about; I’m through another meeting with the hospital team at Oslo, reassuring me that I am really in ownership of a few more months of life and not a few years, and all of the relative signs I should be expecting during this eventual time.
I am glad that the team are made up of real people and not just blank faces, it makes a real difference to me. My own mother passed away from this disease and she was ten years younger than I am when it took her, so I have been very lucky to have an extra ten years. It being the weekend now, there is no real activity in the hospital going on at all now. I was awake at 06.10 and unable to stand on my right leg, due to the pain in my right knee again. So, we have maintained the medications and will continue to do so for another 36 hours until I see the Doctor again on their Monday morning round.

Tony

Thursday 22nd August / Oslo Hospital

05.15 – Up with great desire for large coffee in a big new mug, all the way from my friend, Brad, from Colorado!! (He knows about my BIG SWALLOW !!!
Hits the spot, with one clear shot!!!)
Pins and needles, very large this morning, so that they bite me whether I am stood up or sat down. So, the Oxynorm pain relief is pretty constantly needed. Mainly for around the right knee and the upper right thigh.

09.30 – Heading down for today’s radiotherapy session.

10.15 – All finished. I felt very vulnerable and sensitive about the session as a whole. I felt I had to be careful. Everything changes every day, feelings, outlooks, etc. I have felt optimistic anyway, since the moment I got in here, I certainly haven’t been depressed in anyway.
I was kinda surprised that any dependancy on a wheelchair has appeared at all, so that’s something completely fresh to think about. It certainly has been a clear choice, since yesterday, between walking stick or wheelchair; things have been completely obvious to me. SO, I took the stick to the radiotherapy and I was glad i did.
It seems that life will change a lot when I get back home. It is lucky that the
focus is on my right hip and leg because my left foot has always been my anchor. So anyway, that has all ‘landed’ well.

.
The drugs have led me to the usual gentle hallucinations and hearing things that are just not reality. So I’ll keep a low profile for an hour or two now and give the staff a break.
It seems that difficulty in urination – ln the capability, could be placed in the hands of an Ultra Sound test which we will shortly undertake. Let’s see what is going on, exactly. Sounds like a bit of common sense, or if its something else more complicated, let’s figure that out, then, shall we? Test coming up right now. Chop, chop, eh…..??!!!!
Well, its been a miserable eye opener tonight.
If the remaining fluid inside me was 300-400ml, then I would have had to have a permanent catheter fitted according to the nurses here. But it wasn’t. It was only 140ml. So, I didn’t have to have that fitted.
HOWEVER, attempting to walk tonight, was more trouble than it was worth.
The pain connected from my left colon, across my stomach, down through my right hip and down my right leg into my right ankle. Enough.
So, with a pathetic attempt to get back to my hospital room, I called the nurse
And she doubled the pain killers and we called it a night.
I don’t have any good feelings about the aftermath of radio treatment today, other than, my wife. How brilliant and sharp and supportive she is. The people, fans, supporters and my own damn sheer determination.
Cancer may well kill me. But it won’t kill the spirit of people. That’s a fact. And I’m glad for that. Because that constantly creates hope and keeps us going. Otherwise, there’s nothing. It will take me, but it won’t take all of us; not at the same time and not all together. I think that’s what I’m trying to get out.
I get the distinct impression, that days are numbered for me, but it aint the end of the world.
This is really probably as much about you, as about me, simply because in one way or another, we all get to this point and and it’s then about how we face it.
With some self respect and dignity.
And even at this hour, phone sales companies are calling me.
Closing weight, 84.5kg.
Goodnight.

Wednesday 21 August.

Well, I woke up at 07.40 with the hazy sun fighting it’s way through the far windows, and as I turned over, the cramp bit me right in the ass. And it didn’t stop. i tried to shake it off, but it was persistent. I had to jump clean out of bed and arch my right foot and stretch my toes and twist myself in all the opposing directions I could think of, before it relented and faded away. Hell. It’s a shocking way to wake up in the morning, calling the emergency bell, simply because you didn’t use your common sense when you are still half asleep. The nurse came pretty quickly with the Oxynorm pain killers and they took the sting out if its tail.

TNT crewman Lars Bogen visited me, before the session and I have to say, it was so nice to see him again after such a long time. We always got on great, amidst such a whirlwind of a crazy rock n roll band.

It was another early radiotherapy session this Morning at 09.45am. I also, fully expected it to be painful as well, after such an acidic opening to the morning and I was right.

Climbing onto the table, hurt as much as the process of lying down. The session ached like hell all the way through and lying still really is a requirement; it was hard to do that.

I was very relieved when it was over today. Another medical meeting ensued afterwards, this time with relation to ergonomics and whatever the system was going to allow me to use in my endeavours hand in hand with the officer of occupational therapy. Very smart and ‘clued up’, she was too. Grete, came armed with a list of my allowances and a very fruitful meeting.

The full and personal use of a wheelchair, an ergonomic and electric, fully adjustable work chair, an electric high tec, BED (!!!!) ., and inflatable top market body sculpting cushions !!

When it comes to things like this, the Norwegians go unsurpassed and really do pass with flying colours in the medical arena. I felt like she had really covered any and all of the angles, when she topped it off with the old paraphernalia of shoe horns and sock clamps. 😉 I included a random picture or two, of the radiotherapy staff here somewhere, so you get an idea of the situation etc. They really do make you comfortable and there is a radio playing somewhere in the background etc., along with the low hum of the equipment as it grows to a much louder buzzing when the apparatus spins and stops at certain angles for a different shot at the offending cancers it is trying to focus on. But I will reiterate; you don’t feel a damned thing.

Two more times until 1700, I required the intervention of extra pain killers/Oxynorm, (another increased dose in my case) to relieve me of pain around the right hip and right knee joints, which the staff quickly administered. Being honest and straight with them, gets a quick and efficient response accordingly.

Weight up to 84.6kg.

Yet another visit from the gracious nurse, Elias, triple checking on my well being; what a great guy.

Day 5. Sunday 18th August

I returned to the hospital on Sunday night, tired from the travelling of only a couple of hours and settled back in to my room whilst an electric storm brewed up outside.
33 channels of shit on the TV to choose from. Pink Floyd were always right about that one.
My right leg persists with the full blown pins and needles from top to bottom, telling me there is something happily trapped around my lower spine, or just plain squashed, as is more probably the case. A nagging ‘bite’ of cramp is ever there, waiting for one wrong twist or turn, should I make it. The physiotherapist did educate me on how to get in and out of bed without a ‘bite’ happening and that is indeed valuable information, because this pain will allow you to scream the walls down. And all embarrassment goes out of the window, just blind pain.
My painkillers and associated medicines / (meds), amount to 45 tablets per day with three other large paracetamol doses in between as well as any necessary sleeping tablets, because, as I have found, sleep is not easy to get right now, and to get more than two hours a night is very gratifying.
Stomach pains appeared tonight, down my left side and were most unpleasant. I am also constant with the pins n needles, so after a couple of bites I had had enough of trying to walk around, which is getting more and more difficult and just went to bed.
The last of the evenings drugs landed and I had forgotten my sleeping pills, so I spoke to the nurse again and the regular shift sister came back and gave me more Oxynorm to calm me down and some sleeping meds. I dont remember the time then, but I think its fair to say that I have been out for a good ten hours.

Day 6 – Monday 19th August

After ten hours, I could see the night nurse standing at the door, probably saying farewell for the day, but I never made a response. I lay there for another half an hour, pretty motionless, before coffee demanded otherwise. It was a struggle to get dressed and get a wash and toilet, but I got through that carefully, although the pins n needles were very heavy this morning. The lunchtime doctors visit took a slightly new turn which we can only be grateful for, and that was after the drugs review, I made it fairly clear, that clarity was something I would like a little more of, especially from the specialists, as with regard to my decline and what sort of timescales we would be estimating, with regard to my permanent goodbye from this planet.
I have tried several times to broach the subject with the various heart and cancer specialists that I have encountered during these episodes, to no real effect or great result.
And I understand that. These estimates must be the most difficult thing to ask of someone else. It must be so much more easy/simple to say, ‘I don’t know’. However, after a consideration, my normal doctor on the ward, said that as far as such an estimate could be figured, she would have to go through a lot of the CT SCans etc that are back at the the regular hospital, but she would endeavour to see them before later in the week and that we could sit down and discuss my longevity and other associated factors that involve my family etc. I felt this was a good response from the doctor. She’s committed herself to a lot of information and time on my behalf. Something you can only be grateful for.
When I was formally and clearly diagnosed with terminal cancer, I remembered the consultants in the hospital said, ‘Do you smoke?’ and I replied, ‘Well, I enjoy a pipe with some cherry and Irish vanilla tobaccos from time to time, yes.’ They gave a positive response to this and told me to enjoy it from now on, because there was no reason not to, anymore. I guess I was surprised by this, but even today, they said if you smoke, make the most of the area outside across the road, because it is a, ‘good stretch of the legs and it will do you good. Have some dinner first as well and then a good long walk before you smoke your pipe.’
The staff at both hospitals talk the same language and by all accounts share the same expertise regarding my disease and thats nice to know; the youngest doctor, I have seen, Elias, took blood samples from me before breakfast/frokost; I never felt a thing. It just shows you, it can be done.
My radio therapy is at 13.15 today, which is in about 30 minutes. I will check back in, then.
Weight is down to 82.4kg.

Radiotherapy session #4 done.

It hurt me more to get on and off the machine today, I’m pretty sure the swelling of the cells around the spine has something to do with that; it reminds me of twenty years ago, when I had this pain relieving surgery to stop the discs moving and why I had it done in the first place. Waking up of old memories of old pains. Anyway, that’s it for another day, really. More meds to come and who knows what else.

Day 7 – Tuesday 20th August

Not much happened last night, the night staff swapped over and I opted for another sleeping pill, which gave me another eleven hours sleep and I woke up at 08.30 this morning.

My overall understanding of the growth of the cancer cells became a little clearer again this morning, thanks to another conversation with the nurse, Elias. He will be a doctor, for sure; he knows how to communicate properly with people. I put a lot of stock in that. My dad has been telling me to make sure I get the PSA levels checked in my blood to tell me regarding whether the cancer has spread or has become dormant again. But PSA means Prostate Specific, so that has nothing to do with me. But what Elias did tell me, is that generally as an indicator of pancreatic cencer, there is a definite sign of advance, if and when the cancer cells show themselves up, by appearing in the liver, as their nearest available host to jump on. He checked my liver readings yesterday and my liver remained clear and that is bloody good news. FOr now, at least. As much as I could hope for at the moment.

So, it is on the 7th day that we continue our blog, my radio therapy appointment is at 13.00 today and my wife is coming for the day with some cake. I will talk with the doctor and nurse again on the morning rounds this morning (right about now) and get ready for the radio treatment, which my wife will attend with me at lunchtime. – Speak later.

Tony.

August 17th, 2019

TEN DAYS of RADIOTHERAPY in OSLO Hospital.

Three days ago, I fairly bounced into the cancer treatment ward in Oslo, with work in my travel case and spare pop in my suitcase, thinking it was the same as any other day apart from a few pains in my thighs and pins and needles with my afternoon coffee. Today, I feel very different. I’ve had a lot of hospital treatment in Norway hospitals in the last ten years, since the heart attack. Everytime, the person standing above me, has either been singing 10,000 Lovers or telling me all about who I am and having great fun in the process. This has been no different. The radiologist for sure, was a big TNT fan and new all about it. But being well known, doesn’t make you, ‘well’. Far from it.

After the first radio appointment I was very surprised that the actual sensation was nil. Nil. Nothing. I felt nothing at all. And I think it’s important to tell people that. Because I was filled with dread that a laser beam was going to tear a hole in my guts and leave me feeling like hell all night. People don’t get told about these things, apart from the ambiguous, ‘Oh, it’s painless, you won’t feel a thing’; let’s face it, no-one believes that for a minute, when you are up against something battling with your mortality. I actually thought that turning down chemotherapy, because of its revolting side effects that I saw with one of my colleagues relations back in the 80’s and just opting for the ‘radio version’, was probably a cleaner experience and more high tec into the bargain. Less puke and more go-fast stripes.

The first and second morning sessions left me without any real opinions about any kind of pain or nausea at all, other than the vicious biting cramps that have left me screaming blue murder and that had been happening weeks before I got to this point. Wrapped around the pancreas and my stomach’s blood supply, this growth I have, seemed to have found its way to my nerve centre in my gut and to be squeezing itself against my spine, purportedley cracking my lumber L3 vertabrae. This in turn, started affecting my right leg, causing further discomfort and incapability to the right leg and consequently, my left as well. So, out of the blue, a phone call, following up my last CT Scan, called me in pretty sharpish to Oslo hospital for a protracted stay and lengthy appointment scedule. The first three ‘zaps’, as we call them, went morning after morning, then I opted to come home for the weekend as there were no doctors or therapists working over the weekend. So, I came to today. After this afternoon, and my memory failing to recall some of the actual early moments of checking in etc., I thought I would write it all down, to preserve the experience.

So as far as people should be concerned, radiotherapy is certainly pain-free. If I felt the tiniest tingling sesnsation, that would be the most I could explain, but I put that down to my own furtive imagination, which has been far too active for its’ own good, for too many years. Having an X-Ray. That’s what it is. Nothing more, nothing less.

My wonderful mother in law brought me home to Sweden and I was glad to get out of the hospital and to be with my wife again. It wasn’t until today, that anything out of the ordinary kicked in. After a trip to town, I sat back down at home and rapidly went downhill, with extreme nausea, if that is the meaning of the word/description. This was surely it. The weakness of classic flu, but with the pains, sharper and down to my right ankle. I thought i would be sick, but wasn’t, but the suggestion of going and lying down in bed, was something I couldn’t better. I felt truly awful. It’s fair to say that I think my wife will make a great nurse. Albeit not her chosen vocation unless you count animals with four legs and more of a Lassie disposition.

Now, it’s bed with what feels like a strong dose of the flu and I’ve basically passed out. Two hours later, I’m up and about for fresh coffee but with little strength to make it myself. After this, I started writing. This is the end of the fourth day. My wife will transfer these writings to a proper blog based format now, rather than it take up the front of a FB based news feed.