About Me

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My name is Samantha, Sammy to many of my family, Sam to my friends. My blog describes the journey I have undertaken so far and the journey I continue to make having been diagnosed with Follicular Non-Hodgkin Lymphoma Stage 4 in December 2009. With the exception of surgery at point of diagnosis I have been actively monitored under a "watch and wait" approach and achieved 5 years without treatment and monitoring only last December. My prognosis is approximately 10 years but for every year we watched and waited I have felt positive that this would be extending that prognosis. I am very happily married to Roy and celebrated our 10th wedding anniversary last October and we have a beautiful 9-year old son Callum. My Step-Daughter, 20-year old Hayley who lived with us is now at University. Our house is awash with my beloved pets, our 2 Cavalier King Charles Spaniels, "Amber" and "Saffy", "Caboodle" the cat and "Elliott" the Rex rabbit. The opinions on this blog are my own and based on my personal experience.

Sunday, 8 March 2015

This Is It.....It's Time Part 1

My usual Consultant was on holiday so I saw another member of the Team that he works with closely. This made me more anxious than I already was as I had become reliant on the continuity of a Specialist who I had become to trust, literally with my life.

My husband and I where called through. The usual greetings and pleasantries over with I was asked to lie on the consulting table for my usual physical examination. Everywhere was looking OK, but my groin; that was a different matter. The Consultant looked at me and confirmed the growth. We sat down.

My bloods where on the whole stable but my LDH has risen to 712; this was in line with the growth of the lymph node.

An urgent CT scan was arranged with a follow up appointment 1 week later.

2 days later I received a letter confirming an urgent appointment for a CT scan that Friday. For those that have never experienced a CT scan the type I had involved an iodine contrast. After booking in, a member of the X-Ray team explained that I needed to drink an 800ml fluid which contains iodine, over a 45 minute period. You are given a choice of blackcurrant, orange and lemon. None of them are particularly appealing so I reluctantly requested blackcurrant to which the lady sat opposite me then gave her feedback on this delicious drink by advising "the lemon is the best". Too late, but as this is the only flavour I have yet to try, I shall try to remember her advice for my next scan.

Having drank the fluid in 45 minutes as requested I was called in to change into a gown before being taken to a waiting area where I sat with a Radiographer to undertake all the paperwork. After I gave my consent to proceed a cannula was then inserted into my vein and flushed through with saline to ensure it was working. I was given a further moment to compose myself before being taken through to the scanner, and settled on the scanner table as best as I could be.

Once the scanner was set and my cannula was hooked up to the scanner the staff advised they would undertake a further saline flush and no sooner had they finished speaking I felt incredible pain in my arm. My vein had blown. From what I can understand a vein can blow due to too much usage and too big a cannula being fitted. This was no-one's fault and I suspect my vein was throwing a tantrum due to all the piercings it was getting through the various tests. Another Radiographer came through to explain when the vein blows the saline has no-where to go and therefore leaks under the skin, which causes the pain. She then proceeded to massage my arm to help release the saline from my skin and to reduce any probable bruising as a result, whilst the other Radiographer inserted a smaller cannula into my opposite arm which flushed successfully and we where ready to start the scan.

Again if you have never experienced a CT scan with iodine contrast, the iodine is flushed through intravenously as you move in to the scanner. It's a strange sensation where you are warned of as they begin, which I can only describe as a very warm sensation through the arm and body, which also makes you feel like you have pee'd yourself. Of course you haven't, it's just the sensation.

A few deep breaths, hold your breath, and reversed back through the scanner and the scan was complete.

Saturday, 7 March 2015

Lenny Awakes

Lenny (my attempt at befriending the enemy by giving 'it' an identity) my Lymphoma appeared to progress towards the end of January. The signs where not B systems (night sweats, fever, 10% loss of body weight over 6 months etc) as you would expect and are advised to keep watch for, no, it was the enlarged lymph node in my groin which seemed to be growing. This was almost a replay of 2009 when my Lymphoma was first discovered.

Over the course of February I monitored the area myself but when it started to become uncomfortable (the sensation I can only describe as the aftermath of getting cramp) and shooting pains down my leg I knew that Lenny really was on the move.

My 3-monthly review was scheduled for the last week in February, just 1 week away, but I decided to make the call and after discussing the situation with a very helpful Clinical Nurse Specialist, who then referred it to one of the Consultants, it was agreed that I would go in early. Between then and that appointment I had my usual blood tests performed.

A whirlwind then ensued.

Has It Really Been 3 Years Since My Last Post?!

I just cannot believe that time has flown by so quickly but you could have assumed that was a good sign as it could mean that my Lymphoma has been stable, and you would be correct in thinking this. As of last December (2009) I achieved 5 years on watch and wait!

An interim scan showed that all was stable yet I continued to be monitored 3-monthly and all has been well.

I shall not lie, at times I have found it hard going, as I have been plagued with various viruses that seem to attack my immunity before the current one has left the scene. Psychologically the concept of watch and wait continued to leave me anxious but as time went on this did get much easier, so if you are on watch and wait, I can offer some assurance that over time this will become easier. A positive outlook really does work wonders but ensure you draw on your support network as and when you need to; you are not expected to be a hero, just focus on being you.

Friday, 6 April 2012

Come Visit Me on 21 April!!!

I've finally got everything arranged and agreed for a Lymphoma Awareness Day on Saturday 21 April at the Basingstoke Discovery Centre (library).

You will find me in the centre of the library with awareness literature and collection boxes, hoping to increase peoples awareness of the 5th most common cancer.

Please do come along and say hello. Would be nice to see some smiling faces supporting the cause!

Patient & Carer Conference

I attended the Lymphoma Association & Leukaemia Care Patient & Carer Conference last weekend at the Marriott in Swansea. I felt priviledged to hear from the patient speakers who spoke about their first hand experience of Lymphoma and Leukaemia. It was endearing and very touching; brave people indeed.

I met some lovely people and I hope those touched by cancer continue to fight their disease for years to come.

The presentations from the medical professionals were excellent and I was encouraged to hear of some new treatments for Non-Hodgkin Lymphoma first line treatment that are coming down the line and hopefully available from 2013.

I look forward to the next one.

Wednesday, 29 February 2012

Another Reprieve!

I had my 4-month check up today and all was well. The Lymphoma appears to remain stable, no obvious progress or spread and my bloods are looking very good, so I am reprieved a further 4 months until 29 June when we go through the process again.

If I can get through the next checkup and a further one later in the year then I will have achieved 3 years of watch and wait without treatment. Considering my fears of watch and wait at point of diagnosis and thinking my life was about to come crashing to it's sombre end, Lymphoma has not overcome me; there can be life beyond a cancer diagnosis. OK so my cancer remains incurable; it's always going to be there and it is going to worsen and I will need treatment, but life is about the here and now; so relish in the moment. We cannot change the past, we cannot predict the future but we can make the most of our here and now.

On the Colonoscopy front, despite the January procedure coming to an abrupt end due to equipment breakdown, my second Colonoscopy went without a hitch 2 weeks ago (Piccolax and Klean-Prep both remain on my hit list! - dreadful medicine) and I got the all clear today. An outpatients appointment on 24 April should ascertain the next way forward for the ongoing abdominal pain, but I'm relieved to find there's nothing serious that can be attributing to the cause.

Write again soon.

Tuesday, 24 January 2012

Northern Lights?

I understand that the Northern Lights might be seen as far away as South London this evening. I'm in Hampshire so not sure if I will be fortunate enough to see anything but I will be looking out anyway in eager anticipation. This has been a wonder I have always wanted to see so if tonight does not yield anything I think I may have to consider formulating a "bucket list".