Funny how you can be thankful & greatful for mud

 A great deal of us just take for granted being able to go out and carry out our day-to-day lives. Whether that be going out to work or to do a spot of shopping, meeting friends for a chat over a cuppa, or carrying out some form of outdoor exercise. With what has been happening with this pandemic, all of our lives have been turned upside down and many of the things we used to do or take part in have either changed drastically or we are not at the moment able to do them. It is generally only when you cannot do something that you realise "I really would like to do that".

The 3 Stones at the top of the Black Path

Sandman Hoggar Ti

 

It's quite strange as way before this pandemic going back to 1995 when I first took ill with my leg I experienced what felt to me looking back a certain social isolation. This went on for many years as I fought to keep my leg, however we all know how that turned out, and when I eventually elected to have my amputation, well instead of disabling me it actually enabled me to do more. So I guess now that I am shielding, for me, it has not been so bad, as I have experience of being "stuck in" somewhat and can always find something to do. On the odd occasions I cannot find something to do I am pretty good at hiding under my quilt and switching off from the world entering into my imaginary world, with thoughts of my dream home and the things I will be doing in Scotland.

A memorable day...What a laugh

Wow! My second outing of the week with my good friend John. Following on from Tuesdays adventure we had decided to meet up for a ride somewhere on Saturday morning. John almost always leaves the route planning to me and with us both living in Stanley all our lives we kind of know pretty much every trail, so it can get a bit tedious riding the same old places. Saying that due to this whole covid situation anywhere other than in the house is an exciting prospect for me.

I amazed myself by having everything pretty much ready before John arrived or so I thought. As when I went to grab my Specialized ebike and connect the bike to my phone, the bloody bike just wouldn't turn on. Well by that I mean when I pressed the button on the top of the top tube, the battery power meter came on flicked up, then flicked down and then the bike switched off. I could feel a bit of "Tourette's coming on" and the words beginning with "F" "Hell it's every time I plan to go out". I called for back up "Ern, Ern what's up with this bike?". "Well I don't know" he replied. I had already bollocked poor Ern in the morning, actually waking him up and dragging him out of bed, not literally mind you, more figuratively. No you see Ern had been up to his usual tricks and was playing "hide the bike lock keys". Turns out he had hid one set and locked the other set in his car. Naughty Ern!.

Anyhoo Ern saved the day,  he simply came along and said "what does this button do?" to which I replied "Huh what button?"... Hey presto my dad had discovered a special button and my bike started working.

Just then John rocked up, he had ridden down the bank carrying my dads electric plain which he had borrowed to carry out some DIY.

After a very quick discussion we came to the agreement

Farmers trail it is then!

Farmers Trail

John at the start to the Farmers Trail

 

When you just don't feel like going out!

The lads had been going back and forth with messages upon Facebook arranging a ride out for Saturday morning. I only sent a few short messages, saying I didn't feel like heading out, but hoped they enjoyed themselves. As the days go by I just feel weaker and weaker and everything feels like a chore.

Well Saturday morning arrived I hadn't set my alarm like I usually would and was awakened by our doorbell ringing. Thoughts ran through my head 'aww just ignore it, who ever it is will go away'. I  then thought I had better go and see who it was. As I hopped down stairs using my elbow crutches as i couldn't be arsed to pop my leg on I saw though our kitchen window that it was my friend John. I went to the back door, opened it and John came in while I made a cup of tea and had some toast. 'You not up for a ride out' John said, to which I  replied 'I'm just not feeling it mate'. Soon after our other friend Lee arrived. When Lee saw I wasn't ready he asked 'You not coming'?, again I just repeated my earlier comment to John, saying I wasn't exactly feeling good. Lee was gutted, well so was John as they love hanging with me and going for a ride. Lee always says 'I always have an adventure or something happens when I am with you'. This is pretty much true, it's very rare we go out and something either funny, interesting or bizarre happens. As I was just finishing up my toast I spotted our other friend Al pull up in his car. At this point I was feeling a bit guilty, here were all the lads and me being a pussy just because I didn't feel too good. Before All got his bike unloaded off his car I hopped upstairs and popped my bikey gear on and got ready to head out with the boys.
              

Up the mucky farmers trail with Teflon Lee

Got to love the mud

Sometimes not planning a route, turns out to be the best route.

It's been ages since I last rode with my good mate Lee. What with Lee working shifts and me never knowing where or what I am going to be up to and like everyone stuff just gets in the way from time to time.  Anyhoo Lee had given me a shout on Facebook Sunday night saying 'Hey I'm off tomorrow you up for a ride out?'. 'Sure' I replied as long as it's not an epic as I have been feeling really tired over the last week or so. In fact I hate to admit it but 2 days running I had hardly gotten out of bed. It wasn't the fact I was like sleepy tired, no more of a bone weary tired. After I had rode the 38 miles or so the other week when I went down to Tynemouth and back with my other friend John I just felt absolutely knackered and it must have lingered on. I am pretty stubborn and for me feeling like this is just not on, though I am learning sometimes I do need to give myself a break and rest and take it easy, other wise it takes even longer to get myself put right and this causes me to become even more anxious and frustrated.

Down the leafy trail

Lee

Cycle 3 sessions 5 and 6

It's that time of the month again, where I have to go for my chemotherapy and antibody treatment. Wow the time is flying by. Once this cycle is done I'm half way through. This will be cycle 3, sessions 5 and 6.

Yesterday I visited Shotley Bridge Hospital for my treatment. Now it's been established I have not got an allergic reaction to the Ritixmab the antibody drug I'm currently on I am allowed to go to a smaller hospital. It's a lot easier for me as getting parked at Durham's UHND can be a bit of a nightmare. I am sure glad I didn't have a reaction to the drug as apparently it can be quite nasty and scary, the nursing staff comparing it to something like anaphylactic shock.

The treatment took around 5 hours to all go through yesterday, it's a bit uncomfortable sitting in one place that long as you get all stiff and the time drags. Not complaining though as I always meet some very pleasant people who are also getting various treatments. It's very nice to hear of their stories and experiences and in turn tell them some of mine. The McMillan nurses are also amazing, oh and I can't forget the McMillan volunteers who provide assistance and a warm welcome, they do a sterling job.

Following my treatment my dad, Ern, treated me to a Big Mac at MacDonald's. I was Hank Marvin, even though I had had a chicken sandwich at around lunch time very kindly given to me by the hospital.

I have noticed as time has gone by and after each session of treatment it's effecting me just that little bit more. Last night for instance I felt really sick. I know it's a common side effect of chemo, however I haven't really experienced it on my other two treatments until around 4 to 7 days afterwards. When I awoke this morning I felt a bit better and I'm now just waiting for 2 O'clock to come around and my next session. If I'm honest I'm feeling a little intrepid about these next sessions as I know physically I'm feeling just a little more tired and uncomfortable after each one.

Recently I had to go back and see my haematology doc as I have been getting really itchy areas of skin. It appears I am having some sort of a reaction to some of the treatment or drugs I'm taking. My friend Amanda researched general side effects of the chemo and stuff and it looks as if I have what are called "Hives". Boy when they flare up they are so annoying and rather sore, painful and very, very itchy. When I go for a shower and they are there, it's like when you have a bad sunburn, you know that burning sensation as the water cascades over your skin.

All in all I don't feel I have to much to complain about, my lumps and bumps have all but gone and so far I have been able to continue in my physio assistants role. I was gutted I had to quit my other new job. It just came at the wrong time and I felt myself getting stressed over being over committed. I have learnt that I have to do what is right for me and having undue stress in your life is no good at all.

So on a physical level I am feeling guilty about not getting out, but do realise I have to give myself a break. I haven't turned a crank in weeks. Yesterday I walked up 4 flights of stairs I hate taking the lift and boy was I knackered by the time I got to the top. Mentally I'm in a fairly good place and proud of how I'm coping with stuff. Yeah I'm real annoyed with my self for my lack lustre motivation in wanting to head out and ride, or even swim, but like I say I have to listen to my body and not over do. I mean it's not like I have anything to prove.

I felt quite proud yesterday and hopefully don't come across as being big headed when I say I get this often, when a fellow patient commented on my positivity. I don't know if you would class my analytical mind as a downfall and a hinderance or if it is actually a postive aspect of who I am, but it does allow me to think deeply about every situation and nine times out of ten put things in perspective. One of the best things ever for me is being able to work on a busy ward with some people who are very ill. This gives me focus and everyday I count my blessings as I realise just how lucky I am to have the life I do.

Well I guess I've wrote enough on that subject for today. "No pics" I hear you say.
   

Baxter an I

 Ahh well I went out in the garden this morning with Baxter and my son Kyle and we got a few so here they are. Baxter has just had his second set of shots so this coming Tuesday can go out for his first walkies out side of our garden. I'm very excited to be able to take him out and show him so of our local haunts where we used to walk Mr Hink's. When he is a bit older and I'm well I am looking forward to see if he will attempt a swim with me up at Druridge Bay.

Baxter and Kyle

Baxter is an amazing little lad. So far he has learnt "where's he at" and comes running. He responds very well to the training clicker. Baxter now can have a treat put directly in front of him and be told "Leave" and will follow command. I'm very impressed in how quickly he has picked up all these commands. We are currently on learning "Down" and "Paw". Oh and trying to get him out of the habit of chasing feet and undoing shoe laces as well as picking up everything he isn't supposed to pick up in our garden, including twigs, leaves and attacking the flowered bushes.

   

Eyes on the prize

Ain't he cute

Baxter loves ears

Baxter

Scuffed nose off the bushes

Have I got  to get my pic taken

Fun fights

What's going on with me and quite possibly you may learn something new....

Wow the beginning of this year has been a real mixed bag for me and my family. My son Kyle has been feeling unwell for sometime now with an upset tummy. This resulted in him having to go for 2 colonoscopies and he has now been diagnosed with Crohn's disease. And me well I fell ill with a virus on the 19th of January and ended up being off work for 6 weeks, going off work on the 22nd of January and not returning until early March. Man the virus really knocked me for six, it took well over 2 months to sort myself out and really I still don't know exactly what I had. I just know it was painful, really tiring and very stressful. I hate being off work and letting my colleagues and of course patients down.  I don't really write about work as there is a lot of policies in place about confidentiality, so it safest just to write nothing. On this occasion what I will say is everyone within the Newcastle Upon Tyne Foundation Trust were awesome and I couldn't have asked for better support.

Of course there has also been good news this year. I started my new job for Durham and Darlington NHS Foundation Trust as a Health Trainer. My first day being the 7th of April. No sooner had I started and a week later I was visiting my haematology doctor as I was experiencing really painful and swollen nodes in my neck. For those of you who do not know I have what is known as Non Hodgkin's Lymphoma.This "is an uncommon cancer that develops in the lymphatic system, which is a network of vessels and glands spread throughout your body" I was diagnosed with this in October 2008, roughly a year after having my leg amputated. At the time being diagnosed with the NHL had more of an impact than loosing my leg. I will readily admit not once have I ever said "why me" concerning the whole leg thing, but when I got the news about NHL for some reason it really knocked the wind out of my sails. On reflection I think it was because after years and years of pain and frustration, social isolation and feeling like a complete burden, having my leg off gave me a whole new lease of life. I was able to go out and do things and re-learnt how to ride my bike which took up a huge amount of my time. So to be hit with a new illness and then discover it was going to be with me for life, well at the time it just didn't feel fair, so in the early days I really struggled.

So getting back to this new episode and my painful and swollen nodes. My doctor suggested I have a scan within the next 2 weeks and we discussed possible treatments. These include chemotherapy for a 6 week period, which will be twice per week and also antibody treatment with a relatively new drug named rituximab. This treatment is over 2 years and is given once per week. Is it a shock? Well no not really I have been living with NHL about 7 years and as I understand it it was inevitable that I would require treatment, it has just come at a very inopportune moment, not that there is ever a really good one.

Once again I have been blown away by the support of work colleagues both over at Newcastle and within my new job for Durham and Darlington. Friends and family wise well I have always been very lucky and everyone rallies around. My poor dad (Ern) never complains he is one of the kindest, most reliable, stubborn old goats I know.

Now all that is left to do is await this scan, get the results and take it from there. If I do require treatment then all it will be is another challenge to complete as best I can. I aim to write about my experiences, hopefully other people can take something from it. For me my Blog is not only a way to share what I'm doing, but as I have said in the past allows me to reflect on what I have achieved or what I could do better or even in some cases just to fill a little time, though of that lately I haven't had much.

In ending I will leave you with a couple of links about both Crohn's Disease and Non Hodgkin's Lymphoma.

Crohn's Disease

Non Hodgkin's Lymphoma NHL

Treatment for NHL

Take care

I haven't cut anything as it's a great blog,by Michelle Sheridan

Hi Glenn, here's my attempt at writing something for your Blog.  I think its too long but feel free to cut from it.  Wow I've just read it - and its an epic !!!  Let me know what you think. 

xxxx
My name's Michelle and the below is a snapshot of my life since 23rd March 2014 (the date that I refer to as the 'Fate Date') to today (10 May 2014). 

Going back (briefly to set the scene) to about last Spring or Summer Lee (my husband) and I were in Stanley Front Street when Lee ushered to me to check out this bike heading our way.  Lee is a keen cyclist and always commenting on bikes and their components.  I could see the bike had really big tyres and my thoughts were 'yeah its a bike with unusally big tyres'.  As it neared us Lee remarked that it was a 'Sandman - a Fat Bike' and the tone of his voice and look on is face assured me without any doubt that what we were looking at was something special.  As it drew closer we were both staring, then as the bike and rider flew passed we noticed that the rider had an artificial leg.  Simultaneously we turned to look at each other and in silence we knew exactly what each other was thinking.  I could read Lee's mind as he thought 'That's one hell of an amazing bike' whilst at the same time we both thought 'Bloody hell that bloke's got a false leg and yet he's riding that bike like a pro !'.  We both then exchanged words to the effect of 'I hope he didn't think we were staring at his leg'.

Anyway Lee talked about this bloke on his bike all the way home, all afternoon and all night.  Lee reckoned that such a bloke riding such an amazing bike couldn't possibly be from Stanley but he pondered why this bloke was riding through Stanley Front Street.  Lee was convinced he must have been lost !

Anyway months passed and Lee saw this bloke a couple of times whilst out riding, but had never been close enough to stop and have a word.  Then one day, googling and youtub'ing Bike things, Lee came across a video of Glenn Johnstone and Lee recognised him and the bike.  He was amazed especially when he saw that Glenn had posted loads of videos.  When Lee started watching them he started to recognise loads of local areas.  We then found Glenn's blog and was amazed to see that Glenn actually lived in Stanley.

All of this resurrected Lee's fascination with Glenn.  His videos were really great quality and superbly edited.  Lee produces some of his own home videos, is a total perfectionist and the two clearly shared more than just one passion now - bikes and producing great home videos ! 

(In the style of Glenn .... this is going on longer than I had anticipated - so stick the kettle on !):

OK, cup in hand ?  Good ... I'll continue .....

Lee had always hoped that there would be someone local to him that he could go on bike rides with.  I have a bike and like the occasional ride out, but Lee and I are at opposite ends of the scale when it comes to cycling, stamina, endurance and fitness.  He really needed someone more in keeping with his own ability.  I therefore suggested that, via Glenn's blog, he send Glenn an email.  Lee isn't exactly pushy when it comes to some things - like this.  So kept finding excuses (Lee is adamant they weren't excuses and he was genuinely going to contact Glenn) but I was tired of waiting for this to happen.  So, in keeping with my own personality, I just jumped right in there and sent Glenn an email one evening when Lee was at work one night.  The email explained how Lee and I had seen Glenn (infact having read his blog and watched so many of his videos regularly in the preceding days - some might actually call it Stalking !), and how we had admired him and tried to explain how inspirational he was.  I ended by suggesting that he might like to go for a bike ride with Lee sometime.  I worded it carefully to make it easy for him to refuse in case he wasn't interested.

This was the Fate Date - 23rd March 2014.  Within an hour of sending the email I had received a response !  With anticipation I opened it, wondering what Lee's response might be when he found out, especially if Glenn had told me to naff off thinking I was some weird stranger.  Anyway I opened the email and was thrilled to see that his response was fantastic - he was thrilled at my email and was definitely up for a ride out with Lee.  I exchanged another email saying Lee would be over the moon but that he was at work and that he'd be sure to email Glenn when he was back home.

That was it - from us all meeting each other, and Glenn's friend John, we instantly hit it off and from that date to this - they've all been out on loads of bike rides and had some amazing fun (and perhaps some not such fun times .... reference:  Pickles (watch the video and it'll all make sense)).  Mostly though, they've had a great time in all weathers.

Happy days ahead.  Glenn was such an inspiration to us and as we found out more about him, we really wanted to help in any way we could.  Lee had met 2 local lads with likewise enthusiasm on cycling and general philosophies on life.  Perfect.  (In fact Lee and Glenn are so alike its uncanny .... their habits, their perfectionist idealism, their interests and the list can go on).

Well that was it - life couldn't be more perfect - or so I thought ......

Time for another cuppa ?

Now since January 2014 I had complained of a stuffy nose and congested head - exactly the same kind of symptoms you get with a head cold.  I didn't feel shivery or ill - just had what we up in the north would describe as 'a right snotty nose'.  By mid February it hadn't shifted and by now I had a blocked ear too (I'd describe this as that kind of blocked ear when you go swimming and you've got water trapped in it).  I tried all ways to release the water (as I had been regularly swimming too - so naturally thought it was trapped water).  As neither my congestion or blocked ear were improving I decided to visit the Docs.  He told me to go and take more decongestant tablets (I'd already taken a few courses) and if it hadn't shifted in 2 weeks time to return to the Docs.  Before 2 weeks was up I went back - it obviously wasn't going to shift.  The Doc referred me to a local ENT clinic.  I had to wait over 4 weeks for this appointment.  When it came the examining Doctor stuck a camera up my nose, had a good look round then into the back nasal cavity where he found 'a growth'.  He tried to reassure me and said that often these things amount to nothing but that it was important to have it checked out quickly just to be sure.  So he made a referral to a local hospital for a biopsy.

Within 2 weeks I had this appointment (23rd April 2014 - exactly 4 weeks after Fate Date) and with a little bit of nervous tredipation attended hospital for the procedure.  When I was awake from the anaesthetic and back up on the ward, feeling OK considering, and drinking lots of water the Consultant came to see me at my bed side.  He confirmed he was 'very very concerned' with what he had found.  I instantly filled with dread and he stated that he wanted to see me in 1 week when he would have the results back and he advised that my husband should be in attendance with me.

Lee was on annual leave this next week and together we spent a worrying time waiting for the results.  Whilst it was worrying, though, we somehow managed to spend that week with not one tear and filled with fun and laughter having little visits here and there - garden centres, shops and pubs (though I should make it clear I didn't drink - Lee however, clearly felt the need for a few tipples that week !).  It was a very loving time (actually it is always very loving), and I had told Lee I didn't want to spend the week in tears, moping around and feeling sorry for myself.  In hindsight we have both acknowledged how we found it hard to use the word 'Cancer' during this week.  I imagine this is something many people affected by cancer (patients and their families) find at first.

The week passed quickly and it was time to visit the hospital and receive the results.  We arrived on time and unfortunately the clinic was running late.  About an hour after our appointment time we were called into a room with the Consultant and what I now know to be a MacMillan Nurse - Kelly, who is absolutely lovely.  The Consultant asked me how I was feeling and I described this in both physical and emotional terms.  He then talked a bit (it's all actually a bit of a blur and I just don't recall any of it) other than him confirming that I had a malignant tumour - ie, cancer.  I engaged in conversation back with him and then it hit me there and then and my head fell into my hands.  Lee immediately wrapped his arms around me whilst I had some tears - actually not many - just a few - enough to release the shock of what was now confirmed.
 

After more discussion (again I don't really recall much of this) Lee and I left the hospital.  I had planned to meet my son that afternoon to update him on the results.  We wanted to do this before we told anyone else.  So we met Brynn and then made calls and sent texts to both of our families, apart from Lee's Mam who was in Cyprus.  I was adamant I didn't want her to know until she returned as I knew it would just spoil her holiday.

Around this time, we had become aware of Glenn wanting to raise money for Arctic ONE, a charity who supports abled and disabled people who have been affected by cancer to get into sport regardless of their ability.  They are keen to contribute to research that looks to identify the correlation between cancer prevention and sport and treating cancer related disease.  Glenn is being sponsored by them to receive a running blade and in return Glenn wanted to raise money for them.

So, again in my kind of way (and I suspect to the distaste of some people), I decided to announce my condition to others via facebook and wanted to use this as an opportunity to start and raise funds for Glenn and Arctic ONE and all of the other people that they support.  So in one breath I was telling everyone I had cancer and in the same breath asking them for donations.

Some people have commented how inspirational this has been and how amazing that I'm thinking of others when facing this horrific news myself.  The truth is though, that if I didn't have something positive to focus on and someone as inspirational as Glenn to admire, then psychologically I'd be in a very dark place with constant tears, feeling hopeless, pretty much alone, and desperately worried.

I had considered therefore that perhaps I am inanely selfish ! but have quickly (and thankfully) concluded that I'm not - because the truth is that Lee and I had very much wanted to help Glenn anyway - even before this disease was diagnosed.

However, I cannot emphasise enough how important it is to me to have something as positive as Glenn and Arctic ONE to focus my attention on.

So who would have known that when I sent that email to Glenn on 23rd March 2014 for nothing more than Lee to have a cycling buddy that all along I had cancer and the real fate was not in Lee having a local bloke to go on a ride with but was actually to bring us all together to help support each other in what all 3 of us are going through. 

As I type this up, Lee is out on a ride with Glenn and John and I'm encouraging Lee to do as much cycling as he can, because I know that this will help him through the emotional roller coaster he's about to embark upon and there's nothing I want more than to ensure Lee gets every bit of support he needs.   He is an amazing man that both myself and Glenn will benefit from hugely.

So I ask of anyone reading this to do just one very simple thing .............. please give £1.00 by clicking on the below link.

Proportionately speaking your donation is worth far far more than the £1.00 that will leave your pocket.  It will help, directly and indirectly:

Me

Glenn

Lee

and the 100s of people that Arctic ONE will be supporting over many years - adults, children, able bodied, disabled, parents, carers and the list goes on.

Thank you so much for donating.

Glenn's Virgin Money Giving on behalf of Arctic One

Going back to my first paragraph ...... when I said that (referring to Glenn) we were undoubtedly looking at something special .... then we truly were and only now can we see just how special !
  

Thanks Glenn for all of your support.  This friendship was just meant to be. 

XXXX

Thank you for writing this fantastic blog and also for all your kind words. I'm so glad to have met both yourself and Lee and my friendship and support will be there always.

XxX

Things aren't too bad

Just a quick update for those who read my blog about my current concerns relating to my Lymphoma.

Well today I visited Shotley Bridge hospital for my arranged appointment. I had my blood taken and waited 15 minutes or so before being called in to see the nurse who works on the cancer/haematology side of things. The team who I  see are always so friendly and supportive and today was no different. I was allowed to voice my concerns and it felt very nice to have someone listen then provide feedback in a positive manner.

The nurse then went on to give me an examination,basically the area's where you have lymph glands, so around my neck, under arms, tummy and groin area. I have a rather large node up in my left hand side groin area. The nurse said with the type of lymphoma I have,which is follicular lymph nodes will enlarge and present themselves. There was no abnormalities in my blood so apart from this stoopid lump I seem ok.

After the nurse examined me she asked the doctor to come and check me out so again my lump was examined and the doctor recommended I go for a precautionary CT scan. I'm not worried about the scan as I've had a couple previously, mind you I don't much care for the horrible stuff you have to drink before you have the scan, it tastes horrible. To me it tastes like really and I mean really diluted orange. Not quite water but definitely not pop.

So it's business as usual, continue with my new voluntary job and getting out as much as I can on my bike. Oh and I have arranged a time and date for my interview for the physio assistant's job at University Hospital Durham, so will see how that goes.