A Lymphoe……. What??

The three shots above are the before treatment, after RT and after surgery, let's play spot the difference.

I had my weekly “Drain the NHS of funds” meeting on Thursday this week. (I’ve had someone who I thought was a friend accuse me of being a drain on the resources of the NHS in the past couple of weeks!). This time I rocked up to the Duchess of Kent Hospice close to Prospect Park to see a Lymphoedema Nurse as my scars have been giving me a bit of yip of late and I’ve been suffering from some additional swelling which has made sleeping a challenge. I presumed that I’d be seeing a nurse who could show me how to massage the scars and get on with things. I didn’t realise I’d be entering (yet) another stage of the recovery process. I was slightly concerned initially to be getting an appointment in a Hospice, I was surprised that they thought I’d gone that far downhill, but it transpires that the Lymphoedema treatment is partially funded by the utterly brilliant Sue Ryder charity. The feeling of the place is totally different to the Royal Berkshire Hospital, as befits a hospice I guess, very quiet, very peaceful.

We started off by going through a detailed description of my medical history, I’d completed an online form a couple of weeks ago where I thought I’d answered everything to the best of my knowledge, but my nurse had also been in contact with my GP, so she had the details of when I broke my legs at age 19 which I hadn’t bothered to list….. I knew at this point that I was going to like Jan, she had a sense of humour and the ability to get me to speak about things that perhaps I normally wouldn’t. Questions were asked in such an easy manner that it just seemed natural to answer truthfully.

Q - “How do you feel about your body after the surgery?”  A - “I’m not really bothered how I look.”

Q – “What are you worried about?” A – “I’ve the rest of my life to live with a Lary, it’s starting to be tough.”

Q – “How are you sleeping?” A – “Badly” ……

…………. You get the picture.

I found that she was so easy to talk to, when I had to strip to the waist so that she could look at the way my shoulder was reacting to movement,  she commented straight away on my #Shoulder2Shoulder tattoo, asking what it meant. Normally I’d give a bullshit answer, but this time I gave her the full story, going back to when it was originally mentioned by Graeme Cook as a mantra for the treatment I was going to face. After a brief examination of my shoulder movement and a poke and prod at the scars she confirmed my thoughts that I was in slightly more trouble than perhaps I’d realised I was. She confirmed that I was suffering from a condition called Lymphoedema. Perhaps the clue was in the fact that I was being seen in the Lymphoedema clinic!

Here’s the definition from the MacMillan website - 

Lymphoedema is swelling caused by a build-up of lymph fluid in the surface tissues of the body. This may happen as a result of damage to the lymphatic system because of surgery or radiotherapy to the lymph nodes in the neck and surrounding areas.

Considering I’ve had both RT and Surgery it’s hardly surprising to find out that it’s had a go at me. The worrying thing, initially, is that there isn’t actually a cure, all that can be done is to manage the condition. Again, this is where our wonderful NHS comes into its own. The treatment to manage the condition would be painless (well mostly) and easy. First up was the application of Lymphoedema Taping, developed by a Japanese chropratror, Dr Kenzo Kase in the 1970’s and first widely seen in the 1980’s Seoul Olympics when it was used by athletes, it’s commonly known as “K Tape”. Basically the tape lifts the layers of the skin allowing the pressure to alter around the small lymphatic channels below the skin, like a massage.

The effect of the tape, if it works, will be to dissipate the fluid that’s currently building up in my neck. As well as the tape I’ve been given some exercises to do, some massage techniques to employ and some breathing exercises.

My drain on the NHS will continue to increase as the nurse has referred me to a) A Physio to work on my right shoulder * b) A massage specialist to work on the scaring c) A reflexologist to do some sort of Cat Fagg White Witch magic on me.

*older readers may remember that just after I escaped from Churchill Hospital in July last year I was lucky enough to get some Physio from Vicky at Redingensians RFC, for various reasons, mainly down to me being a lazy so ‘n so the sessions stopped in August.

The condition I have isn’t that serious, well it isn’t for me as I’m quite fit, comparatively young and not overweight. However, as it is a Head and Neck issue it means I go to the top of the waiting list without passing go or collecting £200.00. I probably won’t be seen much before April, but bearing in mind this is a free service that isn’t too shabby. Whilst it isn’t serious, it isn’t what I originally thought it would be. I suspected that the scaring hurting, the swelling increasing and my increased lethargy was just an impact of the surgery. Knowing that it isn’t and it’s a new condition brought on by the surgery and RT is somewhat comforting. The SALT team spotted the symptoms, referred me to the specialists and a plan to control the conditions has been put in place, all within a two months period.

"Taking one step forward, falling two steps back, can't you get inside your head, I'm tired of dancing, so very tired of dancing."

In other news……………… Neville has been fairly challenging at the back end of this week, quite bitey and not overly keen on doing what he’s told, a bit like your average adolescent. We knew we’d have our work cut out at times, but perhaps we’re finding puppy ownership harder than we’d envisaged. And then, he’ll turn into the sweetest, most beautiful dog you could want. Maybe the visit to the "Doggy Dentist" will help to calm him down a bit. 

The weekend will be spent trying to keep warm if the weather forecast is to be believed, possibly a couple of rugby matches thrown in for good measure.

As always, thanks for reading.

To be continued………

#Shoulder2Shoulder

Money

Just when you thought I’d left you alone on your Friday evenings…………………. Sorry folks, I’m back, but don’t despair, this isn’t a long post. I thought long and hard about whether to post this update or not, it probably won’t be to everyone’s taste or agreement, but hey ho.

Some time ago it was mentioned that I used a fair amount of acronyms or technical terms when I’m writing my blogs, so to start with here’s a key for what is likely to come up this week.

·         HME – Heat and Moisture Exchange – this is the filter I use to regulate the air into my lungs.

·         Stoma – The hole cut into my throat to allow me to breath.

·         SALT – Speech and Language Therapists.

·         CNS Nurse – Clinical Nurse Specialist.

·         OBR – Old Bath Road.

·         RTFM – Read the F**king Manual.

·         LUNA – A specific base plate designed for use at night.

·         LARY Club – the few poor souls who’ve undertaken a laryngectomy and who meet up to chew the cud.

In the couple of weeks since my last update I’ve been feeling pretty good as far as my health is concerned. I had my monthly consultants meeting at the hospital, which went well, albeit with a Dr. I’d never met before and who hadn’t actually got my notes to hand. I then saw Susan in the SALT team to discuss my stoma feeling a bit sore and the bone around the area feeling a bit bruised. We discussed the types of base plates I wear and how long I’m wearing then for with the HME’s. Susan’s advice was that really I should be giving my skin a rest at least twice a week and just wear a protective flap over the stoma when I sleep. Now read on and bear in mind the italicised text was written when I was feeling a bit pissed off with the way I felt I was being treated by a key supplier………….

On Thursday I was invited by the company who make the vast majority of the kit I use on a daily basis, to allow me to breath, to attend a presentation at Reading Town Hall to discuss ways of making sure your Stoma and HME are working as well as possibly during the winter. I did think that the middle of February was perhaps a bit late for the subject, but decided to attend as I’d missed their last presentation. I turned up with no real expectations, other than perhaps I’d learn some tricks of the trade to perhaps help me next winter. I’ve suffered quite badly since November, the cold air really plays havoc with my lungs, and being outdoors for any length of time in the cold weather is really to be avoided. Scarfs don’t work as when the HME is covered I really struggle to get air in properly. On entering the room in the town hall I was greeted by two other Lary users, one whom I’d met in my Lary Club meeting last September, the other I didn’t know. The only other person in the room was the Rep. from the manufacturers who looked relieved to see another willing victim of her presentation.

I’d hoped that the session would be a “Meet and Greet” type affair, a cup of coffee, chat around the water cooler and then make excuses after 30 minutes or so. I was to be disappointed. The Rep. explained that she’d be making a two hour PowerPoint presentation on the benefits of wearing some form of HME 24 hours a day, my heart sank.

The HME is a nifty bit of kit. I’ve got three different types I use. The FreeHands, which as the name suggests means I can speak without covering the filter. A normal “Push Filter” system and finally the “Luna” night filter. They all work in roughly the same manner. The filter will have salt covered foam behind it, this works in two ways. When I breath out, the filter catches heat and moisture, when I breath in the cold air is caught by the expended heat and moisture and warmed up before hitting the lungs, stop me if I’m being too technical. Basically air needs to be at around 37 degrees and 100% moisture before it hits the lungs to allow them to function properly, too cold or not enough moisture will result in a chest infection at best.

Of the three Lary users at the meeting, one was a 20 year veteran, the other over 10 years, and me at 8 months, but an educated 8 months. The first 20 minutes of the PowerPoint really was teaching your Granny to suck an egg. It was around this point that the lightbulb clicked on in my brain. The Rep. kept mentioning about how her Company spent so much on research and development and that their competitors were cash strapped so couldn’t do the same. At this point she introduced the Luna system into the conversation, almost seamlessly. If we’re wearing an HME filter then we also need to use a base plate to keep in in place, don’t worry, there will be photo’s at the end. Wearing a base plate over the Stoma all day, every day, can be a bit tiresome as it will probably irritate the skin and can cause painful sores. The Luna system is designed to keep any irritation down to a minimum by having a sort of soothing effect on the skin, it’s probably witchcraft for all I know. 

I’ve been using the Luna system since the end of October, not every night, but probably four out of seven nights. The other three nights will either be flapping free or a slightly softer base plate then the one I use daily. The Rep. was adamant that research, undertaken by her company, who supply the kit, had proven that HME’s MUST BE WORN 24 HOURS A DAY.

My Consultant, who I trusted with my life, and my CNS Nurses who’ve seen me smile, cry and all emotions in between, have both said that giving the neck and Stoma a rest from a base plate is a good thing and will cause no problems whatsoever. And as previously mentioned, my SALTs had also said the same thing the previous week. Now, who am I going to trust on this one? Someone who’s paid by a company to sell their products, or three (+) Healthcare professionals who have no financial investment in the product? I’m a cynical old Hector at times.

The Luna system is ok, but in my mind it has its flaws. The HME’s are a slightly smaller size than all others, despite the four different manufacturers agreeing to make them all a standard size. When I questioned the Rep. about this she claimed it was so that the users didn’t use them in the day time, well that’s just bollox as you can hardly speak using them so they’d be pointless, maybe they’ve been designed to be smaller so that the Lary user has no choice and has to use the bespoke HME? It’s also a pain in the backside to put on. I mentioned this to the Rep. and her initial reaction was that I must be doing it wrong, well thanks a bunch, I’ve been following your employers instructions. She gave me an example to show how I was using it, and conceded that my way of application was exactly how it should be done. She couldn’t explain why to apply this base plate you need to complete three actions, when on the other base plates you only need to do one. That cynical old Hector in me just kept coming up with the same answer “Price”.

Throughout the whole meeting she kept reiterating that the NHS / GP can’t deny us any of the kit that her company supply, we can DEMAND that it’s given to us. After about the forth or fifth time she said this my hackles started to rise. Her pitch smacked of raising as much profit for her employers as possible and sod the actual needs of the patients.

I’m on my sixth different type of valve thanks to the dedication of the SALT team who look after me, they’re not thinking of the cost / profit margin. No one is questioning the kit I have to order each month. I’m costing the NHS a bloody fortune each month, but I’m not a patsy, I’ve got a brain and I can easily see when someone is trying to play the three card trick on me.

Two of us left what was supposed to be an informative presentation, but what turned out to be a “Timeshare” sales pitch early, I suspect that neither of us will bother return for next month’s sales pitch. Throughout the 90 minutes of so I was there, the only mention of protecting the stoma from winter weather was to wear a scarf, which is pretty difficult to do when you breath through your neck.

Now this update may just appear to be me sounding off, after all I do use the companies supplies and apart from the God awful delivery problems (yes, the suppliers are owned by the manufacturers!) I’ve generally been happy with the products. What’ got my goat is the blatant way the meeting was just an excuse for a sales pitch for a new piece of kit which would have a far higher profit margin than most people’s current choice and held no relevance to the proposed subject of the meeting.

 LUNA Base Plate

Xtra Strong Base Plate

Standard Base Plate

Protective Foam Flap (To cover the stoma at night)

As I said at the beginning of this update, I’m feeling quite chipper. My weight is on the up, I’m over 83kg for the first time in over two years. My appetite is probably at an all-time high. Porridge for breakfast, cooked lunch and full dinner supplemented by snacks seems to be doing the trick. Carol and I went to Nino’s in Pangbourne earlier this week and I managed to clean the plate and have room for a pudding too, I’ll have to buy 34” jeans soon if I’m not careful. I don’t want to tempt fate, but my valve is now going into its sixth week, a record for me, with no sign of leaking. Maybe the time and effort the SALT team have put in is beginning to pay off.

In other news, Neville is getting to be a slightly calmer dog and is certainly benefitting from the puppy classes he’s been attending for the past four weeks. He’s also got an appointment at the “Doggy Dentist” for the end of next month when he’ll be losing a couple of bits and pieces, not from his mouth though.

Finally, the rugby season is beginning to come towards its conclusion. It looks like Rams will finish either third of forth in National 2 South, a superb performance for this young side and a great result for Seb Reynolds in his first season as Head Coach. Tomorrow I’m off for the long trip down to Barnstaple to watch the boys play and no doubt be on the end of another rib breaking hug from Verity.

As always, thanks for reading.

To be continued……

#Shoulder2Shoulder

Flash Bang Wallop, What a Picture.

I mentioned in a previous post that I was asked just before Christmas to take photos of some the Rams Sirens Ladies side “Baring All” to raise funds to help their injured colleague Dani Watts. Well, better late than never, the calendar is now available to buy online from the Redingensians Rams website - Rams Sirens Calendar you do have to join the website, but that only takes a couple of minutes and is entirely painless. All profits from the calendar will helping Dani in her long road to recovery. 

I was very pleased with the final results of the calendar shot, it was the first time I’d done anything like that, but the edited shots turned out to be pretty darn good, even if I say so myself.

Anyone who has read this blog for a while will know that photography plays a large part in my life. I promised myself that when the big C came to play that I’d still take photos. I managed it more or less most of the way through my first treatment, with one spectacular failure at Old Bath Road when I left in an ambulance before the game even kicked off. The second treatment was obviously a bit more of a challenge as lying in bed in the Churchill for two weeks limited my chances with my camera, other than the iPhone which is fine for snaps or Instagram, but pants for decent photos in my opinion.  

One of the wise old owls of the Ramily reckons he can always tell when I’m feeling ok as my photo’s from the Rams matches are on point. If I’m feeling rough they’ll be ok, but nothing special. I know exactly what he means. Sometimes it’s easy to just go through the motions on a shoot and take pictures without putting too much thought into it, especially if I’m not 100%. I’ll give you an example. Last weekend Rams took on Tunbridge Judians at Old Bath Road. The weather was awful, drizzle, lowlight and cold, just the opposite you’d want for good photos. But, I was feeling good. I sussed out straight away that long lens shots weren’t going to be great as I’d pushed ISO up to a fairly high number to compensate for the light. Walking around the pitch and almost following the action produced some cracking shots. They took a bit of editing via Lightroom, and it probably took me an hour or so longer to get the results published, but I like to think the time and effort was worth it. 

I bought my first SLR camera when I was 17, it was a Russian built Zenith II with a 50mm f1.8 screw fit lens. It weighed roughly the same as a baby elephant, which had the advantage of making camera shake non existent. It was an entirely manual camera which meant I had to use the light meter, judgement and a fair deal of luck to get the correct shutter speed and aperture settings. I loved that camera, in fact, I think it’s still up in the loft somewhere. That rock solid beast of a camera saw me through to meeting and marrying Carol. One year, for Christmas, I was convinced she’d bought me a budgie and wrapped it up in a nice little box. In fact it was a 125mm lens for my Zenith, nice bit of glass, but not a budgie.

I eventually decided I needed a bit of a better camera as I was starting to get more and more keen on the hobby. So my next purchase was a Praktica BX20 twin lens outfit purchased from Station Camera’s (Long since gone) in Reading. It was quite a nice bit of kit, but prone to jamming on the manual film wind. It was also about this time that autofocus cameras really came into play. So, after a couple of years of the BX20 I upgraded to a new Canon EOS100. Still a film camera, but with autofocus, auto wind and all signing bit’s ‘n bobs. This started my journey with Canon equipment. Next followed a film EOS5, then my final film camera, an EOS3 which was a truly wonderful bit of equipment and my first foray into what would be classed as Pro Spec Kit. However, film was losing the battle against digital, so with a degree of reluctance it was bye bye to the EOS3 and hello to a Canon EOS20d. I’ve still got 5 rolls of film in the fridge in the garage, over 10 years old now and way out of date. I’d love to run one through the old Zenith and see what the results would be. The next thing to concentrate on really were the lens’, very early on I was told that the glass is just as important as the camera body, so as soon as I could afford it I went for a 70-200 f2.8 and a 17-55 f2.8, to this day they are still the lens’ I use. The 70-200 is ideal for sports photography

 and the shorter lens is perfect for portraits, landscapes, or of course Neville.

Three years ago I upgraded from the EOS20d to an EOS7d which is still the body I use to this day. One day, when the 6 numbers come up I’ll buy that EOS1ds………

Once people find out that you take your photography fairly seriously you’re bound to get the “Could you do my wedding?” questions. Stupidly, four times I’ve responded positively to that question. Three were done for gratis for friends or family, one was a paid job for a friend of a friend. The free shoots were ok, but still stressful. Asking if Auntie Joyce could possibly put down her dry sherry and join in the “Family Shot” isn’t so daunting when you know that Auntie Joyce is a game old bird. Doing the same when you don’t know who the relatives are and don’t know if they have a sense of humour is more of a challenge. The one “Paid” assignment I took on was down in Sussex, I think I left home at 7am and got back again at gone 10pm, I didn’t charge enough for my time, especially as I had to use my day job professional skills to actually get paid for the job. The highlight of the day for me was probably when I was taking a group shot fairly close up with a wide angle when some wag from the shot commented that “You’re too close, you won’t get us all in”. My response of “I don’t tell you how to clean the toilets, don’t tell me how to do my job.” Didn’t actually go down as well as I’d hoped, matey boy seemed to take objection to be called out for being an idiot J

Nowadays my photography is limited to pleasure only, rugby, Neville, and anything else that takes my fancy. I’ve done the odd shoot for friends in specific subjects but not for cash, there’s too much pressure to produce results that justify the fee, that’s not me.

I was lucky enough to get great photography advice from a Pro Photographer who had strong links to Redingensians RFC. I did a couple of days work for Gareth when in all honesty I was probably still too inexperienced to know what was expected. The 7 a side Football festival was a real eye opener, not only in the way that no one seemed to respect the players or refs, but in the way the ball pinged about all over the place. At least with rugby you’ve got a fairly good idea how the play will work out, unless of course Max is on the ball, then it’s anyone’s guess!

My advice to any budding photographer out there would be to shoot as many shots as you can, use as many different modes as possible so you can get any idea of the differences between Sutter Priority, Aperture Priority, Manual. Take the camera off Auto and play about with the settings, be brave! Finally, spend as much time as you can with whatever editing tool you use, don’t fall into the trap of publishing quickly to satisfy the demands of others, they’re your shots, show them some love before showing them to Joe Public.

This was another “Not really about Cancer” post, I’m enjoying this sort of writing. My current valve has lasted over three weeks, which is a record, I’m enjoying this sort of health. Sunday 4^th February is World Cancer Day, I’m enjoying this sort of still being here to contribute. The Six Nations are about to start, I’m enjoying the annual banter.

And to close off this post about the wonderful ability to simply capture a moment in time, indulge me, here are some of my favourite photos I’ve taken in the digital age.

#1 - Steep Hill in Lincoln, aptly named - 

#2 - Max at Porthcothan Bay, learning how to use a camera - 

#3 - Red Kite flying low over the house - 

#4 - Rams winning the Championship - 

#5 - RAF Tornado at Fairford Airshow - 

As always, thanks for reading. 

To be continued……………..

#Shoulder2Shoulder