Blog 26 - Phew

Blog 26 – Ultrasound - phew

I only mentioned it to a couple of people: I had an ultrasound scan done on my neck yesterday. I’m more than happy to say there was nothing of consequence to be found. I’d noticed a very small lump under the left side of my chin, no corresponding lump under the right side. I had a vague notion that I’d come across the lump before, but you know I then began to imagine that I was false remembering it so as to make it unimportant. But over the week my hand kept making it’s way to my neck to see how it felt. Some days I could almost feel that it was larger. So on my last checkup on 10^th April, I mentioned it. A finger of shock pinged my heart when the consultant said he wanted a scan done and he wanted to see me again for the results in two weeks time.

The ultrasound department in Lister hospital has moved up from the cellar to the main floor and is now clean and bright and, well, clinical. With a bright orange reception desk. It could be Ryanair. It has six ultrasound rooms. I wondered if there was Jazz in one, Classical in another. Perhaps White Noise in the third (Anyone remember the late 1960’s, cough, experimental band). My dad hated that music. I went into room 4. It was dim, and quiet. The nurse was welcoming. The doctor stood playing the keyboard of his laptop on the work counter. Like Rick Wakeman. But with the sound turned down. Pity. 

You lie on the couch and he squirts lubricant on your neck. Then uses his ultrasound wand to rub over the skin and watches the images on a screen that you can’t see. Every so often he presses a button and a still image is captured. “That’s fine” he says “Nothing to worry about”. But continues to check around the ear, across to the other side of the neck, down to the Adams apple. And back to the lump. “It’s your salivary gland that you can feel”. “Nothing to worry about”.

The question that formed would not come out.

Ah well, I can write it down and take it to the consultant next Thursday.

Do salivary glands change size?

I had another question about ultrasound. But the ultrasound doctor didn't seem particularly engaging. See the end of this tract to see how lucky I was not to ask it.

As you have come to expect, I've done a bit of reading....

Salivary glands (in humans) secrete stuff. Mostly the stuff just lubricates: Without lubricant you can’t swallow. But some stuff (amylase) begins the process of breaking down starch – so you can eat chips! Amylase is also used in home-brewing, converting starch into sugar, which is then converted into alcohol. The third stuff, from the Von Ebner glands on the tongue, dissolves food particles so that you can taste them. There are three pairs of main glands, by the ears, under the tongue and under the chin and up to 1000 further glands in the mouth.

The salivary glands of some species, however, are modified to produce enzymes; salivary amylase is found in many, but by no means all, bird and mammal species (including humans, as noted above). Furthermore, the venom glands of poisonous snakes, Gila monsters, and some shrews, are modified salivary glands. In other organisms such as insects, salivary glands are often used to produce biologically important proteins like silk or glues, and fly salivary glands contain polytene chromosomes that have been useful in genetic research.

Many anti-cancer treatments may impair salivary flow such as chemotherapy and radiation therapy. Radiation therapy may cause permanent hyposalivation due to injury to the oral mucosa containing the salivary glands, resulting in dry mouth or xerostomia, whereas chemotherapy may cause only temporary salivary impairment.

What is ultrasound. I hear you ask. Tee-hee.

Courtesy of Wikipedia.

Ultrasound is an oscillating sound pressure wave with a frequency greater than the upper limit of the human hearing range. Although this limit varies from person to person, it is approximately 20 kilohertz in healthy, young adults. Ultrasound devices operate with frequencies from 20 kHz up to several gigahertz.

Ultrasound is used in many different fields. Ultrasonic devices are used to detect objects and measure distances. Ultrasonic imaging (sonography) is used in both veterinary medicine and human medicine. In the non-destructive testing of products and structures, ultrasound is used to detect invisible flaws. Industrially, ultrasound is used for cleaning and for mixing, and to accelerate chemical processes. Organisms such as bats and porpoises use ultrasound for locating prey and obstacles.

My ultrasound question?

I remember having ultrasound treatment when I was recovering from a dislocated ankle. 6 weeks after my plaster came off. I was fortunate (I thought) to have private health care and so BUPA provided the physiotherapy. They used ultrasound to break down the internal scar tissue that formed when the torn muscles and stretched tendons repaired themselves. So I was going to ask the doctor if ultrasound should be used to break down the scar tissues in my neck that formed when the muscle, lymph nodes, nerve and vein where excised.

I've just been doing some research into ultrasound and physiotherapy. Here are a couple of quotes.

The frequently described biophysical effects of ultrasound either do not occur in vivo under therapeutic conditions or have not been proven to have a clinical effect under these conditions. This review reveals that there is currently insufficient biophysical evidence to provide a scientific foundation for the clinical use of therapeutic ultrasound …

There is nothing a cold slimy prickling ultrasound wand can do that a pair of warm hands can’t do way better.

So a masseuse it is then. You lie on the couch and she squirts lubricant on your neck.

Blog 25 - Cancer and sunburn

Blog 25 - Chemotherapy and Radiotherapy fall out with Sunshine

Sunshine is radiation. Radiotherapy is radiation. What’s radiotherapy for? To damage cells. Sunshine damages cells. If you’re having radiotherapy, you need your energy to repair cells, so avoid sunshine. (Cancer turns off cell repair in those cells that it has attached to, so irradiated cancer cells die, which is how we get rid of cancer, and the body replaces cells with new ones where it can, which is how we recover, after a while). Overexposure to the sun causes sunburn which is when cells in the base of the skin are killed (basal cells). When these cells rise to the surface of the skin, the skin turns red. If sunburn continues, more cells die and rise to the surface, which will flake, or blister or suppurate.

Why can some people take more sunshine than others? Because of the level of photo-sensitivity of the cells in their body. The repair rate of damaged cells and the tolerance of cells to damage (photo-sensitivity) – is governed by the number and quantity of up to 30 different proteins in the body. The more the better. If you are photosensitive, you probably have fewer proteins. You need to know your own tolerance to sunlight, measured in your own garden on a sunny day. 5 minutes to burn or 20? The SPF factor of a sun-cream tells you how many times longer you can stay exposed to the sun. (SPF. Sunburn Protection Factor, actually UVB protection factor – see later).

Chemotherapy, short term, and radiotherapy, longer term, can increase the level of photo-sensitivity of cells, and so you will not be able to spend as long a time in the sun as you used to. You should increase the SPF factor of your sun-cream accordingly (what the heck does accordingly mean!) – or experimentally if you want to try getting sunburn first.

Chemotherapy drugs that cause photosensitivity are dacarbazine, fluorouracil (by injection or applied to skin), masoprocol (applied to skin), methotrexate, mitomycin, and vinblastine. Alitretinoin applied to the skin may make your skin sunburn more easily.

Radiation therapy can cause radiation enhancement or radiation recall with some chemotherapy drugs, such as bleomycin, dactinomycin, daunorubicin, liposomal daunorubicin, doxorubicin, liposomal doxorubicin, fluorouracil, hydroxyurea, and methotrexate. Radiation recall can also occur with etoposide, idarubicin, interferons, paclitaxel, or vinblastine.

(Other literature also include tamociten, femara and arimidex)

Other factors related to cancer may cause or heighten photosensitivity including:

      Changes in your physical appearance because of cancer or cancer treatment. Hair loss can make it easy to sunburn the top of your head.

      Medications -- ganciclovir, some nausea medications (chlorpromazine, haloperidol, promethazine), quinolone antibiotics (ciprofloxacin, levofloxacin, ofloxacin, sparfloxacin, and others), sulfamethoxazole, and others

Here’s a fascinating and informative publication on the way skin reacts/recovers during and after radiotherapy.
http://www.ycn.nhs.uk/html/downloads/ltht-managingradiotherapyinducedskinreactions-oct2011.pdf - According to this document, Cisplatin is bad, too.

Sunshine is electromagnetic radiation made up of, inter alia, three groups of Ultraviolet wavelengths. UVA suppresses the immune system, damages the eyes and may lead to indirect DNA damage: UVB may lead to direct DNA damage and sunburn: UVC has the highest potential for biological damage, but can’t get through the earth’s atmosphere. (UVB is partially blocked, depending on the level of ozone above you). (The bodies defense against UVB is to produce melanin, which has a dark pigment and this diffuses UVB into safe radiation – i.e. heat – so if you've not got sun-cream on you’ll feel hotter than if you have!). (Yes, UV radiation has benefits, but that’s not for this article).

Ultraviolet (UV) light is so-named because the electromagnetic spectrum consists of waves with frequencies higher than those that humans identify as the colour violet. These frequencies are invisible to most humans except those with aphakia. Near-UV is visible to a number of insects and birds.

UVA, UVB, and UVC can all damage collagen fibres and, therefore, accelerate aging of the skin. Both UVA and UVB destroy vitamin A in skin, which may cause further damage. UVA is immunosuppressive for the entire body and is mutagenic for basal cell keratinocytes in skin.

Physical sunblocks reflect UVA and UVB from the surface of the skin. Chemical sunblocks prevent UVB penetration by absorbing it, they generally don’t absorb UVA. Each chemical within the cream absorbs a different range of UVB radiation.

UVA sunblocks typically contain either titanium dioxide or zinc oxide.

When buying sunblock, avoid synthetic chemicals that can further damage your skin and weaken your defense systems: Including 4-Methyl-Benzylidencamphor (4-MBC), Oxybenzone, Benzophenone-3, and Octyl-methoyl-cinnamates (OMC). Or synthetic preservatives like parabens and synthetic fragrance.

If you've got this far, read this http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3263051/
and find out about herbals and sunshine – flowing into some other fascinating herbal information.

Blog 24 – Sunshine

Blog 24 – Sunshine

You’ll not have read my last two blogs, because I didn’t tell you I’d published them. Actually there are three. The one about pain is quite interesting in a QI sort of way.

In Blog 23 I moaned a lot. I said I want to be well. Well now I feel well well. Row and I had a really good holiday in Spain at the start of this month. The weather up in the mountains wasn’t great, so that meant a lot of just chilling in the cortijo and some casual, drive thru birdwatching. Then we had a day at the seaside. 23c. And then to the golf resort at Desert Springs where 28 of us played in tee-shirt and shorts weather. It was a health giving boost bringing back positivity through partying and putting. And sunshine.

The soreness I mentioned has reduced. The range of movement has improved. The mouth is not so dry during the day. I like coffee and wine again. So bring me sunshine.

I said I want to be fit. Now I feel well fit. Whilst I haven’t done any exercise yet, I have been doing a lot of physical stuff around the house. I played three rounds of golf in Spain (I had a buggy) and two rounds of golf at home without buggy. I will get back on the bike when the weather improves. So bring me sunshine.

I said I want to be healthy. I do feel well healthier. I’m managing to eat most things now and have an appointment with the dentist in two weeks time. I did two and a half days at work last week and three full days this week. Whilst not there yet, I think my brain is getting up to speed.

And finally I said I expect more of myself. Well not now. I feel that I am exceeding my own expectations which is a huge, moralely uplifting, boost to my self-esteem; that has banished depression. So bring me laughter, all the while.

And it's goodnight from him.

Bring me Sunshine, in your smile,
Bring me Laughter, all the while,
In this world where we live, there should be more happiness,
So much joy you can give, to each brand new bright tomorrow,

Make me happy, through the years,
Never bring me, any tears,
Let your arms be as warm as the sun from up above,
Bring me fun, bring me sunshine, bring me love.

Music by Arthur Kent
Lyrics by Sylvia Dee
Published Bourne Music, 1966
Recorded by Brenda Lee, Jack Greene, Liz Damon's Orient Express, Willie Nelson, Chet Atkins, Mickey Gilley and others
Performed by Morecambe & Wise – conducted by Peter Knight

Blog 23 – Stalled recovery

Blog 23 – Stalled recovery

I think, perhaps more so, I feel, that this should be an uplifting, celebratory blog. I finished treatment, I’m not on medication, I haven’t got cancer, I’m doing a phased return to work, We’ve got a holiday booked for March and August and there are lots of other things booked or planned for the year.

Except that’s not how it is for me just now. “You’ve been through a lot”. I know, I’ve been through it and now I’m not going through it, so I want to be well. “That’s what you should expect”. No it isn’t. It might be how it is, but I expect more.

What’s wrong isn’t so terrible. What’s strangely wrong is that I’m complaining and depressed now when I was so positive through the bad times; after I knew that I had cancer and during the treatment and all its real misery.

So what’s wrong?

I want to be well.

There’s still some soreness in the head, neck, ear and throat. But that’s ok, it doesn’t need medication and is improving all of the time.

There’s restricted movement in the neck and throat. Apparently that could increase over time as the scar tissue continues to form and then afterwards when it starts to shrink. But that’s ok, physiotherapy exercises can help maintain and increase movement.

The saliva glands often stop working leaving a very dry mouth during the day and a very, very dry throat during the night. So carry a bottle of water everywhere.

The taste buds aren’t back to normal. For example, I don’t enjoy coffee any more and I can’t drink red wine. This together with the saliva problem, which means I can’t eat peanut butter or bread or cake or cheese; and the absence of teeth, which means I can’t eat crispy bacon or chew gum; means I don’t enjoy eating: And so I’m not putting on weight. It’ll be May when work begins to get false teeth.

The shoulder is now permanently sore, the soreness you get with stiffness after too much exercise or sawing oak beams with a handsaw. I don’t think this will improve. I hope to get so used to it that I stop noticing.

There’s restricted movement in my arm. Not as bad as I thought there might be. Although it will get worse over the next year. I’m not sure what the implications of this are. It’s not stopping golf, but I haven’t tried swimming yet (apart from anything, my trunks no longer fit, and the last time I swam with loose shorts they came off when I dived in to the pool). I’ve got physiotherapy exercises to counteract this.

And here’s what’s wrong. I’ve lost my motivation to do the exercises.

I want to be fit.

Three weeks ago I got some motivation and got on my bike. I quickly saw some improvement but then my motivation disappeared.

Three weeks ago I set up the wii fit but the batteries were flat and my motivation disappeared.

After a few tries, I did manage a full round of golf on Sunday, which was a great boost. So there is some light.

I want to be healthy

In the run up to treatment, I changed my diet and added supplements. This resulted in cleaner healthier skin, no dandruff, no athlete’s foot and increased well-being both mentally and physically. Now that my diet is poor things are deteriorating.

I did half a day’s work last Monday. My brain barely worked. It took ages to do the simplest of things – like working out my remaining holiday entitlement. And completely failed to do ordinary stuff, like booking a meeting.

What’s wrong?

I expect more of myself. I don’t want to take it easy. I want to tackle the things that I can and want to do, not avoid the things that I can’t or don’t want to do. These two might seem to be the same thing but the first is motivating and second is depressing. At the moment, I’m thinking the second. But I want to be the first.

Sorry about the rant.

Frank

Blog 22 - two parts: Belief and Pain

I’m not religious. I used to be. I was an altar-boy when I was 9. I went to priest training college for 3 years from the age of 11. But then I begin to think. And the belief in someone/something unseen that is interested in me doesn’t make sense.

It is a cause of great disquiet when people tell me that my cancer was God’s will. The belief that God could wish me ill would drive me insane.

I have no problem with people praying to their God for my well-being: Knowing that people are concerned about me adds to my strength of will. When I wish people well, I send positive thoughts; it is my equivalence to prayer. I believe that the energy output by our bodies is available for use by other living things. If you spend time with happy people, you become happy. If you spend time with bad people, you become bad. You can use positive thoughts to create positive environments. Prayers work in this way.

I have no problem with people rationalising their anxieties for my predicament through ‘blaming’ it on something else – even blaming it on my ‘sins’. But personally, I refuse to blame anything for my cancer. It happened. It is a natural occurrence.

The dichotomy of life is that cells both try to reproduce precisely and strive to change their existence – in case there is an advantage – although evidence points to the fact that most changes fail. When a cell divides in a different way than that type of cell usually does it can have one of three outcomes: It can make no difference – the cell continues to perform in the same way, it can fail (and so the cell dies) or it can work (the cell survives). In this last case there can also be three outcomes: It can make no difference (there is no change to the overall organism’s performance), it can work (the organism becomes better), or it can fail (the organism becomes weaker). The things we eat, drink, inhale, inject or otherwise absorb or ingest can change the make-up of cells. Another thing that causes change is radiation. Random radiation from the solar system is bombarding the earth at all times, man-made radiation is also penetrating people: Each ‘bit’ of radiation can cause any cell that it hits to change: That cell might die there and then; it might cease to divide; it might live and mutate.

Some of these changes in cell characteristics are good – they improve, say, eyesight or memory, they increase height or strength; some are so bad that they can be described as malignant – they cause damage; some can be described as cancerous – they both cause damage and prevent repair – Clever? Blessed? Sinful? Evil? No, nature. The changes mentioned here are not intentional – neither by me, by anyone hexing or blessing me, nor by any other outside agency having a concern for my welfare. As I said earlier, I do believe that positive thoughts can influence welfare - how, well I can't tell you - I suppose I better try to find out.

And the way I dealt with cancer? It was my choice. It was my determination. Bolstered by your prayers and best wishes and belief in me. This hasn’t been a test of me. This has happened to me, that’s all.

My recovery has been successful due to our positivity and the knowledge, experience and determination of the medical teams who looked after me – and crucially who managed the after effects of their treatment through pain control. 

Which leads me neatly into the second part of this blog:

Pain.

The 4 types of pain.

•         When cells are damaged, they produce large quantities of an enzyme called Cyclo-oxygenase-2. This enzyme, in turn, produces chemicals called prostaglandins, which send pain signals to the brain. They also cause the area that has been damaged to release fluid from the blood to create a cushion so the damaged cells don't become more damaged.
•        Pain also comes from physical pressure and from sensory stress. Probably both the same pain caused by reduced blood flow to muscles in the affected area.
•        Neuropathic pain:  E.g. neuralgia, is caused by dysfunction of the nerve cells. (This pain can also occur in cancer patients and more so following chemotherapy).
•        In women, menstrual pain is caused by the body deliberately releasing pain causing chemicals in order to cause muscular contraction of the uterus.

6 classes of pain treatment (apart from removing the source of the problem!)

• Opioids partially block pain messages getting to the brain, but also change the way the brain perceives pain. And also increases tolerance to pain.

Opioids are usually divided up into two groups:

·        Weak opioids - these include codeine, dihydrocodeine, and tramadol.

·        Strong opioids – these include buprenorphine, methadone, diamorphine, fentanyl, hydromorphone, morphine, oxycodone, and pethidine.

•        Salycilic Acids (natural and synthetic versions) affect the source of the pain by binding to the cylo-oxygenase-2 enzymes and stopping them from producing prostaglandins. Prostoglandins in the bloodstream can cause clotting, so Salycilic acid can reduce this. The acid also reduces the production of thromboxane, a chemical that makes blood platelets sticky which can block an artery.

There are over 20 types. They include: aceclofenac, acemetacin, aspirin, celecoxib, dexibuprofen, dexketoprofen, diclofenac, etodolac, etoricoxib, fenbufen, fenoprofen, flurbiprofen, ibuprofen, indometacin, ketoprofen, mefenamic acid, meloxicam, nabumetone, naproxen, piroxicam, sulindac, tenoxicam, and tiaprofenic acid

(Aspirin and ibuprofen can also reduce temperature).

•        Paracetemol: affects the volume of pain and lowers a high body temperature. Prostoglandins are also produced in the brain to enhance the perception of pain – paracetemol reduces this production in the brain but not at the source of the pain and does not reduce inflammation.
• 
  
•        Anti-depressants and anti-epileptics: For neuropathic pain.
•        TENS machine (transcutaneous electrical nerve stimulation).
•        Psychotherapy. Change perception of pain or reduce some sensory stress.

NOTES:

In medications, drugs can be single or combined. Usually an opioid with one of the others.

Aspirin: (From willow bark. First used in 1899. Salicin also occurs in myrtle and birch) Reduces fever and inflammation and blocks messages to the brain.

Morphine: (Opiate, from opium poppies.) Mimics bodies pain defences (see Endorphins). Relieves pain, relaxes muscles and causes drowsiness. Addictive.

Endorphins: (Discovered in 1970s at Aberdeen University). The body’s own painkiller defence mechanism.  Exist/released in the brain. Especially during exercise and acupuncture.

 The information on pain is my interpretation of literature: Do NOT rely on it: Seek the advice of experts if you are in pain.

Regards

Frank

Blog 21 - Some people are on the pitch

Some people are on the pitch.

They think it’s all over!

It is now!!

By March I will have come full circle. And I will have ended up somewhere very, very different.

It started and finished the same way: Back in June and then again today 19^th December 2013: I had a tube stuck down my nose with a light and a video camera on the end of it. A bit of lubricant to make it easier. Breathe normally said the doctor! (After all you are normal now, I thought today!!). “All looking good” he said. Back in June he didn’t mean that as one tonsil was inflamed. This time the tonsils and the cancer were no longer there! Simples.

Then he felt my neck. A bit sore. Back in June there was a lump. This time. An absence of lymph nodes, muscle and vein and an absence of cancer. Simples.

Parking was easy at Lister Hospital today. Just like in June. That’s why I chose to be treated there. Poetically on the opposite side of the same stretch of road almost outside the main entrance, in bright sunshine – although 20 degrees cooler. Full circle, but somewhere else.

Another snippet: I’m allowed to drive again. The meaning behind that is I’m no longer on strong painkillers – in fact I’m not on weak painkillers either! That’s not a snippet that’s brilliant. It means I’ve not got cancer, I’m not even in remission, I’m not even in recovery any more. I’m just in follow-up – the term the doctors use. They want to see me just every 6 weeks to look down my nose at me (literally, not figuratively).

I had my first MRI scan at QEII hospital in Welwyn Garden City last July and less than 6 months later I’m having my FINAL scan in the same hospital. Just one for the record. On Christmas Eve. No more needed. EVER. Full circle. We’ll hear the results on 9^th January.

I had my teeth out in August, sadly they won’t be coming back. But neither will dentures for at least 3 more months. Ah, well.

Hands up if you’re gonna get fit? I got fit back in July. I can’t ever remember being as unfit as I am now. Dizzy just standing up and staying still. Enough strength to hold a putter, but not a bowling ball. But you just wait! I’ll be running circles round yous before the summer is out.

Skinny as a rake, too. Making all the blokes jealous. Lost 42 lbs in 50 weeks. Maybe not honed yet.

I still felt fit in September after the surgery and when the treatment first started. In October I wasn’t too bad, although deteriorating towards the end. November was the pits with pain all day until eventually my medication was corrected. But there was a sting in the tail of that month when the fever hit and I didn’t think I’d make it. I said in the last blog that I felt the demon leave. This month, on Saturday 14^th December I felt Frank return. My eyes turned from ashen remains to bright flames. My future became mine again.

I’ve got a sick note still. I must applaud Row’s boss for allowing her the flexibility to look after me. I did thank him at the time. I must also praise The RSPB for their sickness policy. My sicknote is to the end of January after which I can make a phased return to work. Super stuff.

There are a few minor inconveniences to do with muscles and nerves that may clear up or get worse over the coming months, but hey, who cares. Now, where’s my 3-wood. Fairway Frankie has some golf to practice.

Row and I went to Spain in June when this journey began, to be with friends to celebrate big birthdays: We’ve already booked to go to Spain in March now the journey is ended, to be with friends – deeper friends. There’ll be a party atmosphere – I love a party with a happy atmosphere! www.youtube.com/watch?v=RFPLk5mJ1D4

And there’ll be one or two more parties in 2014. Perhaps one soon-ish to thank you all, and especially my Rowena for the love and support since the journey began, perhaps one later for me to celebrate life and a new decade when I’m 60 in October.

Full-circle? In 1966 I watched the World Cup competition unfold before childlike eyes of amazement. I saw Brazilians on the streets of Liverpool. I saw colour inside Goodison Park. I saw black and white images as England won. In a different place? What dreams will come true in 2014?

May your friends be with you. Thank you everyone. I didn’t know how many friends I had when this journey began – I am in a different place now.

And here’s to my best friend. Row.

Blog 20 – Helter Skelter

Helter Skelter* – Beatles white album

I was feeling hopeful in the last blog – and I know I was right to be – but then I got sick. Very sick.  I lost another half a stone – so now down to 10st 8lb a full 3 stone down from when this began in June to a weight I last knew back in 1975 – have a hunt for a pretty cool former Facebook profile photo. The sickness was probably a virus and took hold in a number of ways. First it gave me a temperature – sweating, shivering, listless – although the thermometer said I lied at 36.4c. Second it took away appetite. And this, together with the Third – it made everything smell like burnt rancid stable straw –coated my mouth, gums, throat and nose so I couldn’t eat a thing and couldn’t face an overnight feed after failing to keep one down. The fever kicked in on Friday morning and lasted until 3.30am on Sunday morning – I felt it depart – like a demon, done or defeated –defeated I guess, ‘cos I’m not done.

What a difference a week made: By Thursday Liverpool had returned to winning ways with a truly fantastic 4-goal feast from Suarez and Row & I ventured out for 10-pin bowling with the fun-loving section of the RSPB’s Information Systems team. I was still weak and managed to drop one of the heavier balls, scoring just 6 after two turns– but then I turned it round and finished with 92, 2^nd in our lane of 5. But that was enough and we went home before the second game started – thanks Bev for organising it!

But what you probably wanted to hear was that my appetite had returned to such an extent that the dietician refused to give me any daytime liquid food (Ensure) and so we had to go shopping for jellies and yoghurts and rice-puddings. And a week later I’m on proper vegetables (well, boiled until they fall apart) and jacket potatoes (topped with lashings of butter) and fish that falls off the bone. And thick soups and porridge. And puddings, yes, puddings! I don’t do puddings. And tonight I’m having a go at making a roast chicken dinner. So I hope to be ready for Christmas.

And when the dietician heard about my exploits they also reduced my overnight feed by 25% - although I was so full the last two nights I didn’t bother. I’m still waiting for that first glass of champagne and the pint of Thwaites.

Now there follows a piece of news: But first: I’d intended to discuss next clinical steps with the doctor – you see something was starting to nibble at my consciousness – something I, as project manager, knew I should consider – a dark question; A question which I don’t want answered yet. Which I’d managed to keep away – I guess it came in with the demon. It is deeply buried inside another question – like a palimpsest – the question for the doctor could be faced and was a natural next step. So first, the piece of news that prevented the question escaping.

They’re sending me for a scan on 19^th December. That is truly stupendous news and caused a dropping of jaws. I wasn’t expecting that until February. We jumped straight to the conclusion that was “When the scan gives the green light, I’ll officially move out of treatment and into remission.” Which is precisely what we want to hear. The question it flanked was “So how will I know that this treatment has worked?” The darker question is “The scans that you do won’t detect the presence of cancer – just heat and lumps. It won’t tell you that treatment has worked. So. What should I look out for?”  It might give the wrong answer – Treatment hasn’t worked and so - the darkest, project manager, question will need to be answered – “What contingency plan would we follow?”

But hey! I get knocked down, but I get up again! (You’re never gonna keep me down**)

Since radiotherapy started ulcerating my mouth in October, I’ve not slept much as my mouth clogged up every half hour - an hour at most – but recently the amount has reduced and I managed 2 2-hour stretches both of the last two nights – whehay!

Treatment at Mount Vernon has been excellent and I’d like to give something back. I give a fair bit to charity (both hours and money). I’m not up to doing direct work yet, but I’ve decided to make the Paul Strickland scanner centre my charity for the next 5 years. http://www.stricklandscanner.org.uk/ They provide and run and maintain the machines. Yes, they’ve just supplied a new one costing almost £1.5m but it costs £800k pa to run. If you want to join in, you can either donate anonymously using the methods on their website or send it to me and I can keep a tally – Bank sort code 20 74 81 – Account number 13113310

I guess a word of warning is needed to finish. I went to the barbers on Saturday, for the first time since treatment began – and was dismayed to see how shaken the hairdresser was at seeing me. She wasn’t prepared for how I looked – gaunt, undernourished, cold, with a chunk missing from my neck. I don’t mind her reaction – but I hate to think of causing any distress – so be prepared – I look 21 again - except for the pink cords.

Oh one more, to finish on a good note: Pain relief is massively down from its peak of 87mg patch of Fentanyl and 4 doses per day of 15mg of Oxycodone hydroxide to just 12mg of Fentanyl and only 2 doses all week of 5mg of Oxycodone. **Chambawamba!

*When I get to the bottom I go back to the top of the slide / Where I stop and I turn and I go for a ride / Till I get to the bottom and I see you again.

(Sorry about the font changes)

Blog 19 - Light

I must admit to forgetting how many people read this and how many people think about my journey.

I was sat at home last week feeling really sorry for myself when the phone rang and then an email came through and a text and the mobile phone rang and a facebook message popped up. Wow. No time to feel sorry for myself when so many of you are doing that for me. Thanks everyone.

But that didn’t take the pain away; it gave me just enough determination to get through the next couple of hours. That got me through the next two as well, and the next, and then overnight and a morning at Mount Vernon. Then the doctor explained properly about the pain relief strategy. So we’ve changed the plan and things are looking better and there’s light.

Gosh, my last blog was on 26^th October. Since then I’ve had my final week of treatment – brown week – and the two weeks of things getting worse – and they did – and now, after a few more days of no improvement, there is light. Yay!

I’d said a couple of weeks ago that I would investigate the role of the various painkillers – pity I didn’t follow that through. I’m now on 87mg of Fentanyl patches – up from 50mg last time I wrote. What this is doing is controlling the background pain; The pain of generally combating the chemotherapy and radiation effects. What the doctors call break-through pain is those periods when further painkillers are needed. To combat those occasions when the body is off doing something else and not fighting the main pain source. The first doctor suggested that this breakthrough pain dose should not be substantial – so I tried to keep it at 5mg. The second doctor, two weeks later, explained that the further painkiller also had to break-through the Fentanyl before it took effect, and so the minimum amount should be 15mg. Now that I’ve done that, I’m not in much pain – Yay! And crucially, my hallucinations aren’t too bad.

The second doctor also gave permission for me to use paracetamol for headaches. Headaches caused by the opiate based painkillers. So yay to that too!

Row and I have Yay’d so much we have
1) Booked 10 days in Spain in March
2) Booked 3 nights in Liverpool and 1 in Warwick for Christmas
3) Started the ball rolling on getting a new kitchen.

And in the next blog I’ll tell you what I intend to do to give back to Mount Vernon for the excellent treatment I’ve received.

Blog 18 – All request time, pop pickers.

Blog 18 – And some mental re-alignment needed now.

Another huge dollop of touchy-feely stuff in a minute. But first it’s question time. I didn’t take you lot to be shy – but no-one is asking any on-line questions about the topic. Next week is my last week of treatment – which means I won’t need to research anything more – so if you want to know why veins turn black and blue or strawberry red when you inject them, or why my mask is green rather than white or purple, now’s the time to ask.

So what’s this about pop pickers?

I was about to have my final glass of Dunton Waterworks water – not quite the same ring to it as Echo Springs, Heaven Hill Distillery Black Bourbon – but sure tastes nicer at the moment – before putting on my coat to head for Mount Vernon last Sunday, when the door-bell rang and there was Julia with ANOTHER pressie from the Potton and surrounding villages crew. A professionally produced CD of 17 tracks that they’ve lifted from an extraordinarily eclectic set of juke boxes. Each track prefaced by a message from the person who chose it.

Recognising the massive emotional explosion about to happen – the love of my friends sent forward as I was about to endure another night of torment in the hospital – I would have soon been reduced to quivering tears if I hadn’t just dashed out, got the said water and dived into the car – I am sorry Julia for such an abrupt exit.

I hadn’t figured on the following week being such a tough one and so it has taken until today to be able to say “thank you” friends, for your CD. You’ll have to see the facebook photos for the track list and the CD cover art – thank you Jules for this treasure. If you don’t do facebook, I’m sure you know someone who does who will be able to show you – otherwise pop round and I will.

Mental re-alignment. 

People have said that they think I’m brave. My way of dealing with this condition is to understand it, to consider what the worst might be, to consider what the best might be, to place myself along that journey at a point where I would suffer but not too much. To think that I was fit enough and strong enough to be able to get through it. To trust the medical staff in their judgement about my illness, my treatment and my prospects. And last but not least with your support, to face this head-on. 

This week saw some light shed on the worst. And I am now in the process of shifting my view of where my journey will take me. It is time to be somewhat a-feared – but I will work out, over the coming days, how not to be.

The latest bunch of needles left me bruised. 

On the good news front, the top up of blood needed to increase the haemoglobin count done half on Monday evening and half on Tuesday morning was a success – well, in terms of the procedure – I had a fresh blood sample taken yesterday, Friday, and will know the result on Monday.

The latest game of golf left me exhausted – it was warm and windy on Wednesday with some very steep slopes on the Rickmansworth Pay and Play golf course – Bill and I had a dreadfully poor game. By the evening I was feeling very unwell – could not eat – and next day was much the same – but also feeling nauseous and flu-like – indeed it was just like having sunstroke. When I weighed myself on Friday I’d lost quite a few pounds, and when they fitted my mask they were worried by the amount of room there now was – they may need to do a refit next week.

The latest food and drink taste sensation is truly awful. Luckily the Ensure two-cal drink is palatable and at 400kcals per 200ml bottle (2 kcal per ml), I should be able to get that weight back on over the next few days.

One of the things I did fear seemed to come a bit nearer -  my hearing reduced on Friday when about to get in the shower. It seems to have returned now. But the frequency of tinnitus bouts is increasing.

I’m now on 50% more Fentanyl pain-killer patch – and so have been able to reduce the morphine from 4 times a day to one or less.

But I think some strange things are creeping in – I suppose it is a form of hallucination.

If I close my eyes when working on the laptop (often!) A second-long bright light flashes on in my head. 

If I close my eyes – or just blink slowly – when being driven to an appointment, the car in front suddenly appears to be just a few feet away – but the scariest is a kind of Pop-Art effect that pops up momentarily on a surface – so it might be a picture of a postcode appears suddenly on top of the curtain or newspaper or tee-shirt that I’m looking at. Or a page from the beano might replace a piece of pine-panelling in the bathroom. 

Mostly this has affected my sense of sight, I suspect it has popped up in my hearing but haven’t isolated that yet, but the chilling one is the sense of touch. 

When on the radiotherapy bed on Friday I could swear that someone was touching my arm and then my leg when I dozed off momentarily – and again yesterday when I was laying on my Easy-boy chair listening to the CD it felt like Lexie was nuzzling me even though she was in a different room.

I don't think I'm turning psycho, though. Visitors are still welcome. Especially after next week when I shall not be going out once my treatment stops - apparently this is the loneliest time when it appears that all medical support just drops away.

Cheers

Frank

Science v fiction and week 3

Blog 17 science v fiction and week 3

After last week’s touchy-feely blog and the brilliant video from my friends, I thought a return to hard-nosed facts might be to some people’s taste.

The week before I mentioned the carbon-fibre bed that I lay on (and have the mask bolted to). I’d told people that it was there to absorb the radiation as it left my body. Pure fiction. Today I happened to be reading the Journal of Applied Clinical Medical Physics (ooh, er) the organ of the American Association of Physicists in Medicine (ooh, I say) and I now see that it is there so that radiation IS NOT absorbed and DOES NOT bounce off but that it passes STRAIGHT THROUGH and therefore does not increase the amount of radiation behind my back (literally, not figuratively*).

http://www.jacmp.org/index.php/jacmp/article/view/2247/1282

IMRT is the regime that is being used to treat me. Reading the Institute of Physics on-line journals, I find that there are different types of IMRT and different computer models used to deliver the dosage to the right places in me. Two of which are named PEREGRINE and CORVUS. So I will be questioning Dr. Russell Moule, my consultant, next week.

Anyone know what a moule is? être fait au moule
Henry Moule invented the dry earth closet.

Reading the British Journal of Radiotherapy - http://bjr.birjournals.org/content/76/910/678.full - I now understand the inverse planning process needed for the type of IMRT used at Mount Vernon for my treatment. They’ve worked out how much radiation is needed to kill off my cancer sites and working backwards, they now know how to modulate the beams in order to put more in some places – like the area containing the removed affected lymph node – and less in other places – like my spinal chord. Working further backwards, they know the angles that the radiation needs to hit me, so the planning programme knows how to move the machine around my body and where to slot in the lead leaves to prevent some rays getting to me.

Enough of that. This is the end of week 3. They said that the effects of radiotherapy would start to kick in. On Monday the consultant prescribed for me a lot of different pain relief. Codeine for everyday pain, aspirin to gargle with, some liquid to coat my throat and, in case things got bad at the end of the week, morphine liquid. She was right – or she cursed me! I needed the throat liquid later that day and I needed the codeine before bedtime. By Friday I also needed the morphine. The searing pain in the throat got worse and worse as the weekend went by. So much so that I eventually capitulated and pulled out of the Silverado golf event taking place in Maidstone on 13^th/14^th.

What they also said was that I’d only lose my facial hair, ha! The fluff on the back of my neck lined my polo-shirt collar today like a ruff. And a handful of proper hair between my neck and my right ear came out before tea.

My tongue has turned white. My saliva has turned green, speckled with red and stringy like gruyere in a fondue. My nose is running. My hands and feet are often cold and white. My taste buds are shot and now even water tastes like it came from a month old vase of dahlias.

But it was nice to be driven in each day. Thanks to Dave, Alan, Row, Keith and Maxine. The petrol money paid for three new members for Dunton Community Garden and a donation for Cancer Research as part of the Gamlingay Zumbathon on Friday.

And the radiotherapy technicians enjoyed the cakes I took in on Wednesday for my birthday, and the music for each of the sessions: This week’s choices were, erm, varied. Nigel Kennedy’s rendition of Vivaldi’s Four Seasons. Simply Red. Queen – they wanted to keep that one as they danced around the computer screens. Jools Holland. Blur.

My sister enjoyed Sam Cooke – well after seeing in last week’s blog that I’d played it, she’d put on facebook that she loved it – so I sent her a copy. One of those Random Acts of Kindness that’s so much fun to do.

You don’t need me to tell you that the weather has turned. On Wednesday I cut up some more wood and on Thursday I lit the wood-burner and settled down to watch the last of the Harry Potter DVDs from Keren on the big telly. On Friday the big telly made England win. Talking footie – one of the technicians is an Arsenal supporter and her husband is a Liverpool supporter – so I wore my Liverpool shirt on Tuesday. But as Arsenal are ahead on goals scored, she wasn’t too annoyed. We laughed.

I think week 4 will be tough – so it’s Blue week. Really looking forward to Tuesday, though – it’s payday and England will beat Poland.

Love to you all

Frank

*A literal usage is the "normal" meanings of the words. It maintains a consistent meaning regardless of the context with "the intended meaning corresponding exactly to the meaning" of the individual words. Figurative use of language is the use of words or phrases in a manner where the literal meaning of the words is not true or does not make sense, but "implies a non-literal meaning which does make sense or that could be true"