Watch & Wait

 It has been 13 years since I was first diagnosed with Non Hodgkin's Lymphoma. I can remember clearly when it first kind of started. It was upon a ride out with my friend Carl, and coming up through Beamish and No Place. I just was not feeling quite right and at the time had terrible stomach cramps. Strangely enough these cramps would come and go, however upon each episode they got increasingly worse.

Anyhoo Carl and I had been on a day out riding up at Kielder Forest, we had had a brilliant day however at some point I had snapped the bottom bracket of my brand-new carbon fibre bike. So upon our return I had contacted the bike retailer,  Stiff who were based down Leeds way. My dad and I took the bike back to Stiff and upon inspection they agreed that the frame would be replaced under warranty, however I would have to wait around 6 weeks for a replacement from the USA.

Back in 2008 and being silly

Great memories of a day at Kielder

 

After roughly 6 weeks, my bike was back together with a new frame and my dad and I went down to pick her up. This is the part where I can recall feeling proper poorly and knowing something just wasn't right. I was doubled up in our car with the most horrible stomach pain, on the return journey, so once near home, my dad took me straight to A & E at the Queen Elizabeth in Gateshead. I had had my leg off there in the September of 2007, so we thought going there was probably better than going to Dryburn at Durham, which would have been my local hospital.

After spending hours at the QE and being poked and prodded, and very friendly doctor who had examined me came in and informed me he had discovered an unusual lymph node in my neck. It was near my collarbone on the Left. He advised he would be making an appointment for me to see a consultant near home, so Durham, and that they would take it from there.

A few weeks later, I met a friendly consultant called Dr Keenan. What I liked about her was not only her voice, as she sounded a little like Mrs Doubtfire, but her candid approach. Dr Keenan said to me "I have some good news, and some bad news"... "Oh here we go I" thought. "So, what is the bad news?" I enquired to which she replied "Oh, you have cancer". "So, what is the good news?" I asked. "Oh, it is the best one you can get". This left me a little perplexed, however as I look back on it now I just kind of thought "Huh Ok".

In 2015, I had to undergo chemotherapy, which to be fair wasn't too bad compared to some poor folk. The worst bit was the additional antibody therapy, which totally had me wrecked and lasted almost 3 years.

As time went on I was armed with information and supported through the Non Hodgkin's, the consultant and specialist nurses always on hand if I needed someone to talk too. I think the hardest thing to deal with and this is where I am leading with this particular post is the "Watch & Wait". I find it very difficult to deal with this and at times don't particularly know what I am waiting for.

I am very good at going each day without ever thinking of this thing attacking my body. I have a dark sense of humour, so find it ironic that even my own cells don't like me LoL and from what I know that is what cancer cells are. I have heard them called "eternal cells" as unlike normal cells they don't die off, they just duplicate and spread.

So to last week, upon getting up on Wednesday morning I had an upset tummy. I went to work, however as the morning went on I felt increasingly unwell with an upset stomach, and I was sweating and felt all clammy. The girls at work are all very supportive and immediately noticed I didn't look good so were fussing around, checking my obs, opening windows and popping a fan on. I then became freezing cold and just thought I had some sort of bug. I booked a Covid test and then went home, having booked the test for 1 PM down at Chester -Le- Street.

Anyhoo the test came back negative, however I haven't felt well all week and this is that part of Watch & Wait I hate. Once I am feeling unwell with my tummy, it always brings back memories of that first time riding up through Beamish and the start of that period of my life and well it sucks.

After speaking to a G.P over the phone, although he was very kind, supportive and friendly, it has still left me not knowing exactly what is going on. The doctor came up with a few thoughts, yes it could possibly be a flare up of my Non Hodgkin's, however I don't really have any other symptoms. It could be a bout of gastroenteritis, or after the doc read my notes, he thought it could be stress & anxiety.

It has been hard going back to work after 9 months of lockdown, however I don't feel particularly stressed, but hey that is the thing with stress and mental health it can kind of sneak up on you. Sometimes you can ask yourself the question and your mind lies to you, however your body reacts in a different way. I will admit, a good few months ago I was going through a low period, however using some strategies like being kind to myself, meditation and exercise buoyed me again, and have kept me afloat. Of course, I am still a little down that I keep seeing "dream houses" in Scotland and know in a perfect world where I would be and what I would be doing. I enjoy this imagining, it can take me away and well if something does come about I will already be prepared and have a plan of action.

Going back to feeling like crap, I decided to test myself today and have a ride out with my friend John. I figured if I could get a few miles in and feel relatively ok I would be ok for work on Sunday. We rode a local loop of just over 12 miles down Beamish. I was quite impressed with myself as I didn't use any power all the way up the farmer's trail and actually for a fair amount of other sections. The turbo trainer is continuing to give me a good workout. I have been switching the resistance level up just to make things interesting.

And so as I write this, almost finished, I continue to have a dicky tummy and not feel 100%. I guess time will tell what is up.

I'll leave you with a few pics from today. I have put them at the end as I can't be arsed to slot them in to my story, Lol

Ok off to dream about a cottage I have seen in Argyllshire...

man I feel worn out...

As the title to this particular blog post states "man I feel worn out". It's not just a case of being or feeling tired, nope I just feel completely fatigued and no amount of sleep appears to do the trick. I go to sleep at a reasonable hour and awake feeling wrecked. 

As I have viewed my blog seeing if anything needs tweaking or I can add anything interesting I noticed my blog posts had dwindled over the last couple of years. I mean it's not just a case of not having anything interesting to write, as there is always something or other to tell you. I mean isn't that the whole point of a blog, allowing people snippets of your life, or I guess in some peoples cases "their whole life"...."Today I ate a Jaffa Cake" sort of thing.  No I can see a down turn, both in my interest to write about my adventures and also in how I have been feeling. Basically things have just not felt great since having chemotherapy back in 2015. 

Now as far as chemo goes, the 6 months treatment I had whilst I was on a drug called bendamustine was not too bad. This particular drug, meant I had no hair loss and apart from a dicky tummy now and again I was pretty much ok. I mean my bloods did drop to 0.5 at one point and I became neutropenic, which basically means I was very susceptible to infection as I had a real low immunity, however I did not catch any nasty bugs, meaning I did not require any hospital over nights stays to be monitored.


The combination of bendamustine and rituximab has been very successful, as my non Hodgkin's lymphoma appears under control and the horrible large nodes I had in my neck have shrunk right down.


Following the chemotherapy I was informed I would get 2 years treatment of the rituximab, this is called a maintenance dose. The treatments are supposed to be given every 2 months. Unfortunately I have been experiencing some issues and this can really only be put down to the rituximab. Things like a low white blood cell count, more infections and picking up bugs easily and the biggest one to date for me this lingering feeling of fatigue and just not wanting to do anything.

It has taken me ages and I mean ages to put my finger on why I have been feeling so crap. I mean most people think "Yeah I will feel shit during, then after my chemo, but give it a few months and once I am in remission I will start to feel a lot better". Yeah I thought this, so to be 2 years on more or less following my chemo, well I just thought "Glenn, you are a right lazy sod, who needs a kick up the arse"...."Come on pull yourself together".

Anyhoo after going in to work today and feeling absolutely wrecked and asking if I could take a half days annual leave. I came home and researched the drug rituximab. My findings are from the Cancer Research UK site and you can follow the link if interested. The top 3 common side effects I have had, which are feeling sick, being at a higher risk of getting an infection. I have had a terrible couple of years picking up stuff and the biggest one for me fatigue and tiredness.

I now kind of realise that may be I shouldn't be so hard on myself, as it just piles on additional stress. I have just had my treatment on the 7th December. I will now wait 3 months before my next one which I am pleased to say will be the end of my course of treatments. There have been a few delays so I have crept into my 3rd year. From there I hope I will start to get my Mojo back, recover my strength and start living again.

Never sure who reads my blog, but hope anyone reading this who may be going through the same thing can take something interesting or informative from the information.

Why Me?

Well as the title to this blog says "Why Me?", well why not? I mean yeah I have suffered my fair share of bad luck and ill health, but hey illness and diseases are in the main quite indiscriminate (unlike certain people). You can try to eat healthy, not smoke or drink and take all your vitamins, but in certain cases if it's meant to be then it's meant to be. It could be a case of bad genes or just plain bad old luck.

I have to admit when I lost my leg after fighting for around 12 years to save the dam thing I never once said "why me". Sure I was devastated when I got the diagnosis, however after years of suffering was relieved to wake up with it gone.  A year after having my leg off I was diagnosed with NHL or Non Hodgkin's Lymphoma and although I thought I was dealing with it ok in the first few months of my diagnosis I can sort of remember having a meltdown as time went on and asking "Why me ?". Weird as in reality my NHL wasn't the worst cancer I could have got  and really other than a few lumps and bumps and the odd upset tummy, which in hindsight was more due to stress it wasn't that bad. It was at an advanced stage so incurable, but on a positive low grade and really slow to progress. 

Which brings us to 7 years down the line. And the slow progression of my NHL. Of late I have been feeling really tired. At first I put it down to taking on an additional job and maybe over doing it in my free time. You see the problem with me is that if I just sit at home and chill I then have a proper go at myself for being lazy. This I think stems from years and years of inactivity due to having a buggered leg, where my daily routine would be lying on a couch or bed with my fixed leg, leaking horrible gunk and hurting from getting up till I went to bed. Now I just feel if I take any "Me Time" well that's just not on. I mean what would people think. Seriously these are the sort of stupid thoughts that float around my brain. I have a responsibility to maintain this perception of what people actually think of me. Like I'm some superhuman or something. Obviously these thoughts are in my deluded world and of late through chatting to very caring  and supportive friends I have come to realise that actually who gives a stuff what other peoples perceptions are of you. What counts is looking after yourself, learning to love yourself, because if you push yourself to far and break, then how the hell can you support anyone else.

Errr where was I? Ahh yes, so 7 years on and feeling tired. Well I also had these painful node in my neck. So I visited my consultant, who sent me for a CT scan. The results showed my cancer had progressed and that brings me to today. Upon visiting with my consultant she went over my results, explaining the progression and what she thought would be the best option at this point. We both agreed it was possibly a good time to commence treatment. This is to be in the form of chemotherapy alongside antibody therapy. The chemo drug is called Bendamustine (Levact), whilst the antibody drug is called Rituximab (Mabthera). Both drugs although they won't cure my NHL have proven successful in keeping the disease at bay for a period of time. My consultant was very optimistic too explaining that cancer treatments have come along way and with further research and development well things can only improve.

I now have a few dates for my diary, an appointment to chat with my cancer specialist nurse this coming Wednesday, then my treatments will start on the 28th and 29th of May. I have never had treatment like this before so I'm not entirely sure what to expect. In trying to look at this in a positive way I guess I can say this will be a new experience which I can share. It is a means of feeling better, even though I may feel pretty unwell for a period of time. And who knows I may even get some super human powers from the freaky drugs, yeah I know that's highly unlikely but hey I can dream. Growing a new leg would be a start lol.

I'll be continuing my blog and try and write my thoughts from a personal point of view. Be wonderful to hear your comments or words of support.

In ending I would also like to point out I was hoping to take part in the Arctic ONE Triathlon this coming June. Unfortunately I don't think I will be able to take part now. I'm gutted as both Matt and Bex and everyone involved with the Foundation has been ever so supportive of me. I don't want anyone to donate money because they feel sorry for me. I would like to leave a link to my Virgin Just Giving so that if you can spare a few quid you can help other people out to achieve their goals.

Virgin Just Giving

Thanks guys

Short ride in Beamish Woods

Over the past few months things haven't been going exactly how I would have liked with regards to getting out and about and maintaining my fitness levels. There has just been something amiss. At the beginning of the year I was struck down with a mystery virus and this had a huge impact on my whole well-being.

I have now been living with Non Hodgkin's lymphoma for around 7 years. I'm fairly lucky in that my NHL is classed as low grade, however it was diagnosed at a late stage, stage 3, so it is incurable. It is treatable however with things like chemotherapy and anti-body treatment. I think the biggest problem I have encountered with the NHL is like comparing it to having a dark cloud constantly over head. Your never quite sure when it's going to start thundering and lightening and splash down on your parade. When I  go to visit my haematology doctor or nurse I'm asked "How do you feel?" and here lies the problem, as I don't know how I'm supposed to be feeling.

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

Don't know if I'd class this as an adventure

On Friday quite out the blue I received a call from the University Hospital Durham from one of the consultants secretaries. She informed me an appointment had been made for me to see a surgical consultant on Ward 13 Surgical Admissions at 13:00. At first I didn't know who it was or what she was talking about, it wasn't until she mentioned my haematology doctor (Dr Keenan) that I sort of put two and two together.

So after finishing my voluntary work early at the RVI (12.00pm) and getting picked up by Ern (my dad), we headed off too Durham and the University Hospital.

On arriving at the hospital and getting up on the second floor and the ward, we didn't have too long to wait until I saw the consultant, Mr Baine. He gave me a quick once over and then hurried me down a corridor explaining, he was going to get to work on the large node I have in my left groin area, saying I was to come in on Wednesday and he would "chop it out". 

Mr Baine didn't come across as your usual consultant surgeon, he was quirky and I found him quite funny. I like his straight to the point way of going about things.

So what a brilliant start to 2013 huh? Two days into the New Year and here I am having more bits removed. Granted it's just another node and not a leg lol.  It will be similar surgery to the biopsy I had on my stomach in 2009 I guess.

Once the nodes out they will investigate it and I'll have to wait for more results to see what happens next.

So as soon as I know I'll up date everyone... This is all very weird to me as I'm still not entirely sure what Non Hodgkin's Lymphoma is, how I'm supposed to feel or what I'm supposed to do. Really I'm just trying to stay positive and go with the flow.