I Can't Stand Feet!

Well today I had the day off and had my first appointment for complimentary therapy at the Hospice.

I was very dubious about going to the Hospice as I had expected to see lots of very poorly people, and the use of the word Hospice sounds so final, but the Turner Centre was a separate building to the rest of the premises, so I was almost segmented and guarded from seeing the reality of what the Hospice stands for.

I did meet a very nice lady who was clearly very unwell and it does remind you of the seriousness of the situation; she had a great sense of humour particularly when a member of staff forgot to put sugar in her tea, as her volunteer driver sat quietly by her side.

I was very impressed with St Michaels, the staff were lovely and the surroundings were very nice and calming.

Off I went to the treatment room for reflexology. I have a natural affliction for feet but I gave it a go, with every muscle tensed I lay down ready to laugh out loud as I am so ticklish but actually it wasn't like that at all. Infact it was very nice indeed.

I now have an aromatherapy sniff stick (!) to help me relax whenever I need it and after the treatment was completed I was escorted back to reception for a nice cup of tea and as long as I needed to drift back to reality before making my next appointment. And that I did as I watched the rain bounce on the ground outside.

St Michaels Hospice do an absolutely fantastic job, of that I have no doubt. Just one visit made me realise just how important the pallative care offerings they provide really are and with only 30% of their funds provided by the Primary Care Trust and the remaining £1.8 million required to continue to run the Hospice per year being raised by charitable donations their achievements are substantial and it's a Charity I would be honoured to support.

Similarities of "Biscuit" the Goldfish

When faced with a life threatening condition a number of things change. For me, life has been reprioritised, and as an existing “heart on the sleeve” wearer, I have become even more emotional as has been demonstrated this week as I watched the Boyzone programme about Stephen Gately and Eddie Izzard's incredible marathon of marathons as I sat there quietly with only an occasional sniffle to break the silence. I watched Children's Hospital last night and was in complete awe of those children's fight and courage. If there was ever a demonstration of hope and determination it comes from those beautiful children.

My view of death has also changed. It's something I have always been incredibly scared of, and that hasn't changed. I have had my fair share of dreams of being locked in a coffin alive and hovering above myself lying on a bed as my family are all sat around me saying their final goodbyes. I know I'm not alone on that. As we speak, death is around me, not for myself or a friend or family member but for, (now don't laugh, go with me on this one and all should become clearer); our pet goldfish.

We lost 1 of 4 goldfish last week. It happened very quickly and there wasn't much we could do. As I explained to my 4-year old Son that Jammie had gone to heaven (via the toilet), Callum remains convinced that we will be reunited with Jammie in “Devon” on our holiday in a few weeks time. It's hard to explain the concept of heaven to a 4-year old, especially when he refers to it as a holiday destination!

On Monday, our second goldfish, Biscuit, and one of our oldest at 3.5 years old started to act unwell.

Biscuit, looked and seemed well until then. You would never have known Biscuit was suffering a life threatening condition nor do I know for how long. No obvious markings, and until yesterday, no strange movements. To the onlooker all seemed to be well. All of a sudden Biscuit lost his / her balance, his / her control had gone and Biscuit looked on with a glazed expression, breathless.

I found Biscuit's inability to control his / her balance and his / her abnormal rolling unnaturally distressing yesterday morning and found myself to be first in the queue at opening time at Pets at Home to hear a diagnosis of swim bladder in complete panic. I took the treatment home, but sadly it was too late for Biscuit.

As I lifted Biscuit out of the tank he / she took a breath, was this a breath and a small sign of life or a bodily / chemical reaction when lifted from the water? I do know the answer, but Biscuit remained in his / her tank until I found the courage to accept it was time to take a trip to “Devon”.

Biscuits condition may be similar to mine. You just would never have guessed, until one day it showed itself.

May Biscuit and Jammie RIP in “Devon”.

Time for Change

There comes a time when life has to return to some kind of normality or you are just going to go out of your mind and Lenny Lymphoma will drive you insane - and for me that transition to normality feels like it maybe starting.

This week feels like a turning point. I feel more positive and can see beyond next week. The good days are outweighing the bad.

Registering to participate in Cancer Research UK's Race for Life in June 2010 was the first stepping stone; to give some good back to those vital Organisations who have been helping me; but it was also a diversion, a “feel good” factor.

Counselling from the lovely Ros is starting to help me to understand, to rationalise and to accept the feelings I have.

Continuing to review and absorb information is a powerful tool. If you can understand your condition you find more strength to fight. Knowledge really is power. Some find my constant review of the Web unsettling, but I only take note of information from reputable Organisations; I really do not need horror stories or glimmers of false hope.

I am about to register for a Reiki Healing Course; not only to learn a new skill, but a great opportunity to seek self-relaxation and help those around me; heal the healer as they say.

This evening I have some pampering of my own, with an appointment at my favourite salon for a new hairstyle and colour ready for Spring – thank you R & C; it's a lovely Mothers Day present. As I walked my dogs this lunchtime I also saw the first Daffodils emerging, so Spring really is in the h..air!

I have also become a MacMillan Cancer Voice, using my experience of Cancer to date along with many others to help shape the future of Cancer care and to assist in making life better for everyone affected by Cancer.


I do believe I have started the next stage of my journey; taking back control of this situation.

Lymphoma - The Celebrities Cannot Escape Either

I read today that Andy Whitfield, star of "Spartacus - Blood and Sand" has been diagnosed with Non-Hodgkins Lymphoma. I wish him well as he starts his treatment immediately.

When you look around there's a wealth of celebrities that have my condition, some are here to tell the tale, others sadly are not.

To name just a few:

Paul Allen (Co-Founder Microsoft)
Gene Wilder
Jackie Kennedy Onassis
King Hussein of Jordan
Mr T (A Team)
Gabriel Garcia Marquez (Nobel Laureate)
Sir Menzies Campbell (Liberal Democrat)
David Rocastle (English Footballer, most famous for his time at Arsenal)
Anon. Colleague of mine

It's a small World of Lymphoma

Happy Mothers Day

Happy Mothers Day - and what a beautiful sunny day it is.

I love my Mum deeply, more than she realises, we have gone through some "tough" times and now I'm here in this place and I wish I wasn't causing her so much heartache. A child, whatever the age, never expects to place this kind of burden and heartache on their loved ones, life can be so cruel.

For my Mum:

If I could give you diamonds
for each tear you cried for me.
If I could give you sapphires
for each truth you’ve helped me see.
If I could give you rubies
for the heartache that you’ve known
If I could give you pearls
for the wisdom that you’ve shown.
Then you’ll have a treasure, Mum,
that would mount up to the skies
That would almost match
the sparkle in your kind and loving eyes.
But I have no pearls, no diamonds,
As I’m sure you’re well aware
So I’ll give you gifts more precious
My devotion, love and care.

Have a lovely day xxx

The Search for Serenity

Another cancer counselling session has passed and I found I had more to relay this time.

It's been a difficult week emotionally, with some highs and some real lows, some of the worst so far, but I'm starting to understand why. It's a slow process and life feels Jekyll and Hyde. The black and white Sam can no longer predict, no longer control. My analogy to my Counsellor was “it's like someone has pressed the pause button on SkyPlus, you're waiting for something to happen, but no-one presses start or fast forward. Let's rewind this nightmare, but the pause button is well and truly holding it's own”. Life is literally left hanging out on a limb.

But it would seem that those wide range of emotions, of which I have had every single one, are perfectly normal. Shock, disbelief, denial, awkwardness, panic, anger, guilt, frustration, fear, loss of control, terror. These feelings never leave me, but some days they go a little easier on me, and other days they like to offer a hard time. What's normal you ask, I'm not sure, you're definitely asking the wrong person, but I'm reliably informed these feelings are to be expected, they are not wrong and I am entitled to feel each and every one.

I'm not a particularly religious person. I attended Church through my Church of England School and through Girl Guides, weddings, christenings, funerals and so on, but since this journey began I've had an urge to revisit the Church. I have always liked visiting Churches and find them incredibly serene places but I'm not a regular Church goer.

It started at diagnosis with a request to my Husband to buy me a cross pendant for Christmas. No other gifts where important, just the cross. You will see me now bearing this cross most days and if you are a little more attentive you will see I have developed a habit of rubbing it. I now understand this to be comfort. I also realise this urge is a subconscious grasp at finding peace and serenity. So I stopped by at the Hospital Chapel. Not a place I had visited before but I did feel calmer for those few moments and it did permit for a quiet tear in the corner.

A prayer now resides on the prayer board – I haven't asked for a miracle or a cure, merely a helping hand as I continue down this path and as I was leaving I came across this Prayer left by the Chaplain. Particularly apt I thought:

A Dream

One night I had a dream, I dreamed I was walking along the beach with the Lord.
And across the sky flashed scenes of my life.
For each scene I noticed two sets of footprints in the sand,
One belonged to me, and the other to the Lord.
When the last scene of my life flashed before us,
I looked back at the footprints in the sand,
I noticed that many times along the path of life there was only one set of footprints.
I also noticed that it happened at the very lowest and saddest times in my life.
This really bothered me, and I questioned the Lord about it.
Lord, you said that once I decided to follow you
You would walk with me all the way,
But I noticed that during the most troublesome times in my life there is only one set of footprints.
I don't understand why in the times when I needed you most you should leave me.
The Lord replied “My precious, precious child” I love you and would never leave you during the times of trial and suffering.
When you saw only one set of footprints,
It was then I was carrying you.


With sincere thanks to BNHT Chapel and Wessex Cancer Trust

How This Journey Began

My Lymphoma journey began in September 2009.

I discovered a small lump in my left groin area and was sure I had never noticed it before.  It took a few days before I saw my GP to have the lump checked.  I was told not to worry it was likely just muscle hardening, but if I felt any real discomfort or pain then I should make my way to A & E as it could be a strangulated femoral hernia!  Hmm, what options I have.

I put the lump to the back of my mind, and other than an occasional check and becoming convinced it was enlarging, I did nothing further until December.

My Sister came to stay and at this point I was in a little discomfort, mainly because of it's size.  She convinced me to get a second opinion which I did a few days later.

It was a Thursday, and a different GP arranged an urgent scan and urgent referral to the Hospital. The lump had trebled in size since my last GP appointment.  We intervened with private health cover that same evening and by Monday I was at the Hampshire Clinic for an appointment with a Consultant Surgeon. I just couldn't wait for the NHS.

I came away from that appointment slightly concerned.  I needed an MRI which took place the following day and the rest of that week ensued with further tests, CT scans, ECG's and the outcome was surgery to take a closer look.

Tuesday, the day of surgergy came, I went in under general anaesthetic for a biopsy. An hour or so later I came round to find a drain in my leg which seemed odd for a biopsy but I didn't have to wait long.

The Surgeon came to see me and a sizeable tumour had been removed.  When pushed, the first ever reference to Lymphoma came and my world immediately somersaulted.

A week later, pathology confirmed the Lymphoma and on 23 December 2009 Follicular Non-Hodgkins Lymphoma was the official diagnosis.

My world now did more than somersault, it turned upside down.   Right on top of Christmas.  I hadn't done much in the way of shopping as life had gone on hold for the 2 weeks prior however Christmas went to plan and we ensured a good time was had by all.  But Lymphoma became and has become my every waking thought and never fails to dissapoint in my dreams.

29 December saw me back in hospital for a bone marrow biopsy - a necessary procedure to help stage and grade the Lymphoma. An unpleasant procedure and a wealth of emotions flowed immediately after.

On 13 January 2010 it was confirmed I had Stage 4 FNHL.  The FNHL had reached both of my legs, abdomen, chest and bone marrow.

The next few days and weeks became a blur as I quite honestly struggled to cope.  The whole range of emotions overtook my day-to-day life...life stopped.  I couldn't look at my Husband and Son without my premature life flashing before my very eyes.

It was agreed that as I was not feeling ill, and as the B symptoms they look out for where not showing themselves, that I would go on a watch and wait approach which I continue to be on now.

Lenny Lymphoma will progress - my Haematologist was very honest in telling me due to the advanced stage I was not curable, but symptoms can be treated to provide a good quality of life.

I spent 2 months away from work and did very little.  Most days I sat and stared at the television but "no-one was home". I couldn't speak, I couldn't think.

My first 6-weekly checkup has been and gone recently and the Lymphoma has now reached my neck... we continue to watch and wait.  In the meantime I battle with Fatigue.

I have returned to work amongst the uncertainty of organisational change but it focuses my mind on another topic and life must go on.

So here I am, I watch and I wait.

The Blogs Rationale

I finally find that I can start to talk. It's taken some time and it's extremely hard but I have set up this blog to not only help me document what I am going through and capture my thoughts as an outlet but for my family and friends to understand how I'm feeling on those difficult days when I just can't find the right words.