Life really does go backwards at 40

Always look on the bright side of life…

on February 4, 2014

As bits of the song goes….
Some things in life are bad
They can really make you sad
Other things just make you swear and curse

And to be honest… Life can be a very big pile of poo no matter how you dress it up
So why is that, I hear you ask
They say life begins at 40, really, why and more to the point, why did mine feel it needed to go backwards a month before I had hit the big 40?

One afternoon on a sunny ish November afternoon in 2008 I was bumbling along the twisty hilly Kent lanes in my lovely convertible Mini otherwise known as Boris the Minji, an early 40th birthday prezzie from my rather lovely better half, when I came across an accident in front of me.
I left a car’s length in front of me and in my bumbling mood was considering ‘should I to do a u-turn’. Putting the Minji into first gear and about to do a ‘u-ey’, I noticed a green Clio come flying down the hill hurtling rather fast towards me, unfortunately said green Clio was hurtling rather too quickly and one was unable to shift one arse out of its way when…bang!
When they say your life flashes before you it’s very true, I could see the car hurtling towards me almost in slow motion and could do didly squat to avoid it mounting me Minji.
The other thing they say is red mist and adrenaline doesn’t mix, that’s also true as the young lady driving the Clio soon found out…
Flinging open the door of the Minji, bouncing, I say bounce as this is probably the best description for my behavior. I bounce round the back at lightning speed to assess the damage and yup its clearly broken and looks rather expensive, I turn and face the Clio driver and you guessed it…red mist!
I would like to point out before I go on I am not usually a person that swears, I favour the alternative swear words like, fudge, flipping ying yang, feck and so forth however, I can say my Mother would have been ashamed of me…
Before she had time to get the words ‘I am sorry’ or terminate the call that she was on causing her to not pay attention to the queue of stationary traffic in front of her, I started…
Look, what the *&@(&^%&:@) have you done to my @&^%$* car you $%$^&* bimbo, you do know you shouldn’t ^%&**& drive and use a mobile phone you *&^%^&.
Not really giving the Clio driver a chance to respond she started to mutter and I heard the word “sorry”
Sorry, what the *&^*^**. I’ll give you %$*&^% sorry and with that she started to hobble up the hill away from me, to be honest this only made me worse…..
Striding after her and shouting, Get *%^$^& get back here, Im not $%^**&^ finished with you yet &*&^&(((*&*^%^.
Fast forward 1 hour, the Clio driver is taken away in an ambulance with a suspected broken leg.
Me, I was given a lift home in a Police car by a rather sympathetic officer as there was a shortage of ambulances and everyone thought that it wasn’t a sensible idea putting me and the Clio driver in the same ambulance, I gave the ambulance man my assurance I would attend A&E or at the very least see my GP.
Boris the Minji was taken away for assessment and was never the same again…
Had I known then what I know now I would have probably sworn more, perhaps thrown a few things at the Clio driver or even placed a curse on her, you think that’s a bit harsh? Believe me a broken leg, a careful driver awareness course and 3 points is getting off lightly in comparison!
I escaped the accident with whiplash and a prolapsed disc however I now realise the trauma from this accident was the catalyst of where it all started to go wrong.
Fastforward to Jan 2013.
Prior to the Clio mounting the Minji incident I hadn’t been someone that got ill or visited the Doctors.
In the period between Dec 2008 – Jan 2013 I had everything going, flu, migraines, sciatica, rashes, back pain, neck pain, tired all the time, lost weight and put on weight, in fact you name it and I probably suffered with it, I even had my own chair in the Doctors surgery.
I woke up one morning in Jan 2013 and my right foot was swollen, not thinking much about it I went off to work and carried on for a few weeks as you do until it got to the point it started turning blue. So off I go again to the Doctors, I am sent for 2 lots blood tests and x-rays to test for arthritis..Oh the joys of getting old.
All the tests come back clear so I was referred to an orthopedic surgeon.
Unfortunately he didn’t really have a clue either but booked me in for a scan and told me to wear an aircast boot, the boot was to stop me walking, working, driving, actually it was to stop me doing anything, however I carried on whilst waiting for the scan.
I was fortunate to have a scan and see the surgeon at the same time, the scan didn’t show anything apart from fluid, possibly blood but he wasn’t sure and due to the pain and swelling he suggested I have steroid injections to see if that helps.
Oh my days I thought giving birth was painful…jeez I cried like a baby….
Needless to say I went through the pain of have 6 injections in my foot for nothing; back I go to see the consultant in March who suggested another blood test, what am I a pin cushion.
A week later a letter arrives from him which I read, re read and re read again…
The letter tells me that I need to see a haematologist as the blood tests show I have a high platelet count, high HB, red cell count is high and HCT is also high, armed with the letter off I go back to see my Doctor.
This time I manage to see my usual Doctor, I hadn’t been able to see her the during the foot episode, she reads the letter and checks the 2 lots of blood tests taken at the surgery, shock, horror (sarcasm) it would appear no one checked anything other than the results for arthritis, platelets, HB, RBC and HCT had been high for some time.
Having trained as a nurse when I was a youngster and hearing I was being referred to the local hematology/oncology/cancer center for further testing I was slightly alarmed.
The day of the appointment arrives and there I sit surrounded by cancer and leukemia patients still trying to figure out what the fudge I am doing here. Blood is taken and I am told to sit and wait for around 20 mins while they wait for the results. 20 mins, wow it normally takes a week to get the results as the surgery…
My name is called and I am taken into a room, I hear some words and have to ask the consultant to repeat what she has just said.
I think you have essential thrombocythemia ‘ET’ she repeats, what’s that I ask….
It’s a form of blood cancer, quite rare but a chronic illness which has the ability to turn into terminal leukemia she states.
In these circumstances it’s normal to spout utter complete rubbish and in my case I state, I only went to the Doctors for a swollen foot!
I am reassured that at the moment it’s not conclusive and I shouldn’t Google ET, a further sample of blood needs to be sent to Cambridge for genetic testing, I will need to have a scan of my spleen and then a bone marrow biopsy.
Off I go for a scan of my spleen, then I go for a bone marrow biopsy which quite frankly flipping hurts and wasn’t on my list of things I must do when I reach 40+!
2 weeks later I am back and this time see the head honcho who quite frankly has the bedside manner of the grim reaper.
So in April 2013 I am told I have a faulty gene called JAK2+ and the ET is closely related to and considered by many to be a type of cancer. I am told some consider it to be a chronic leukemia, others consider it to be a preleukemic disorder. Either way the disorder closely mimics what happens in cancer or leukemia with the copying and spreading of damaged or immature cells. Oh great what chance do I have if you can’t make your mind up what it is…
I am told I can look forward to, headaches, vision changes, weakness, fatigue, numbness, freezing hands and feet, nose bleeds, bleeding gums, memory loss, TIA’s, blood clots just to name a few joys of having ET, oh well at least it explains the last 5 years.
I am given some aspirin, handed a leaflet on leukemia, given a telephone number for the cancer nurse, told to come back in 4 weeks and am still quite confused as to whether I have cancer or leukemia….
Four weeks later back I go, bloods taken and I wait to see which happy smiley faced Consultant I get. Oh they joys it’s the grim reaper again…

My blood isn’t behaving, my platelets are on the up and told I will have to start chemotherapy tablets to try and eradicate the excessive amounts of platelets, it’s explained as though it’s an inconvenience and feel I need to have a stern talking with my bone marrow telling it to behave, or, actually I am not sure what I should threaten it with!
Armed with a bag of chemotherapy tablets I am told, not to let anyone touch them, if a capsule should happen to explode..What the fudge!, basically I have to don a boiler suit and adopt cleaning procedures for cleaning of bio chemical hazardous waste. If that is not bad enough I am told to expect the following, hair falling out, tiredness, sickness, say good bye to my immune system and so on.

Oh the joys, remind me again why I need to take this because at this moment in time I feel pretty pants without adding to the list, the final blow I am given by the grim reaper, the medication I have been given can cause ET to mutate into terminal leukemia.

If I were a horse I would be put down…

4 weeks later back I go everything is still on the up and my foot is still swollen so I am referred to yet another specialist, this time it’s a vascular surgeon to check my veins.

Various scans, tests and it appears I have a blood clot in my toe, thankfully not a DVT just a clot in the small veins, oh well that’s okay then. Warfarin is suggested and more blood is sent off.
Back I go again and it appears not only do I have ET, I have autoimmune issues, Raynaurd’s is diagnosed, possibly Lupus or something similar too but further tests need to be done.

So here we are in Feb 14 a year after I went to see my Doctor with a swollen foot, I now have ET which could be cancer or leukemia depending on who you ask, it’s not terminal, its chronic however has the ability to morph into a terminal illness, I have a clotting disorder on top of ET which is still being investigated, I have Raynaurd’s caused by another autoimmune condition which has yet to be identified and will be on chemotherapy for life be it tablet or injection form.

Every day is a struggle; I have gone from being extremely independent to relying on everyone around me for the simple things in life.
I long to do the things I took for granted like, walking the dogs, go for a ride, spend hours wandering round the shops with my Emo’s, write a few chapters of the next book, read a few chapters of a book or just wake up and not feel exhausted before the day has even started.

In my head I am not ill, I do not look ill, if you met me in the street and didn’t know me you wouldn’t guess I was ill.
I have a brain/body conflict going on, some may say its denial, my brain tells me I can get up and go to work every day, come home and do the normal things everyone else does, the reality is I get up, go to work and by lunchtime I am exhausted but I push myself on because I don’t want to be ill or dependant on anyone.

I want to be me, the old me.

I don’t want people feeling sorry for me, I just want people to understand that sometimes I can’t do things, won’t be able to reply, spend time and if it bothers you then its time you found a new friend.

So for me the car crash was the start of life changing and going backwards, but as they say life is what you make it and I am not quite finished yet.

Today is world cancer day and I wanted go public and tell my story to highlight there are many forms of cancer.
I remain hopefully that a cure will be found for not just the type I have but for everyone suffering so please show your support in whatever way you can.


Frazz x


16 responses to “Always look on the bright side of life…

  1. Jenny says:

    Oh good lord – what a load of, well, poo. I can’t offer wisdom or reassurance because I have no authority to offer them at all, what I can say though, is that the head/body conflict is something I really recognise. I too have raynauds and some other autoimmune thing that they’re not quite sure about plus some genetic hoo ha which makes my connective tissue all too lax. I don’t look ill on the outside either. Oh, I’m rambling. Gentle hugs, respect and determination to you xx

  2. agedteenager says:

    I dont really know what to say other than to keep you chin up lovely. My thoughts with you, massive hug from Devon xxx

  3. dick says:

    Puts so many things into perspective. Big hugs, love you x

  4. optie says:

    What an awful situation to be in, do hope that in some way things will get better for you. Hang on to your sense of humour, therein llies your strength.

  5. kymlucas says:

    Oh, my word! I don’t know you and can think of nothing else to say except that sucks. That really, really sucks. My favorite part of this post: ” … life is what you make it and I am not quite finished yet.” You just hang in there, and keep on giving ‘em hell!

  6. Sorry I haven’t dropped by your blog in a while. I had to read your post three times to take it all in. What a time you’re having. Sending Boxer dog hugs your way x.

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