Saturday, 18 April 2015

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

1 comment:

  1. Now I usually put a tick against "Funny" "Interesting" and "cool" when I read Glenn's blog, but this time I find the "funny and cool" boxes will have to be left blank.
    Being a parent no matter what age your offspring is you will worry about them and have sleepless nights .Our household consists of 3 blokes my son Glenn,my grandson Kyle ,and me "The Old Goat". We try each to live our own lives but as a family I suppose we worry about each other especially where health issues lie .What gets to me though is the fact that there is not a damned thing I can do to ease the pain both Glenn and Kyle are going through and knowing that this pain and the mental stress it will cause are going to be long term.
    All I and every other parent,family member,lover,or friend can do is give support when needed and understand that there will be times when we need to stand back and bite our tongues, as sometime though "We" may think we are being helpful we are just exasperating a situation
    But as long as I draw breath I will be here for my kids