Back to square one

Yesterday I finally made it to Sheffield. I had been waiting for seven months for this appointment and we set off on the eight hour round trip full of hope. What we got was unexpected bad news.

I know I have long bored you with the inadequacies of the NHS administration, but I think in this instance it bears repeating:

Diagnosis             12 July 2010
Referral to Sheffield’s Gamma Knife Centre        26 July 2010
Decision to operate rather than have Radiosurgery at Sheffield 28 July 2010
Surgery                7 August 2010
MRI Scan at JR   1 November 2010
MRI Scan received by Sheffield 14 January 2011
Visual Field Test at JR     12 January 2011
Visual Field Test received by Sheffield    4 March 2011
Consultation at Sheffield              17 March 2011
Gamma Knife Radiosurgery scheduled for            24 March 2011

You will see there is one defining moment in this timeline. The day I became a private patient.

Sadly before Christmas I had to leave my lovely company Realia. They have been remarkably kind to me throughout and continue to be incredibly supportive.  But by December I had been on sick leave for six months. It is only a small company and I felt it was unfair to continue on sick leave when I had no idea when I could return to fully discharge my duties as an Account Director. So I resigned and resigned myself to living off family and on benefits.

In the New Year my old employers Quantel got in touch and kindly offered me a part time contract for a few hours a week. I accepted and when I started I was handed a pack containing details of their private health insurance and was told to call them. I did. And within seven days I saw the specialist Neurosurgeon I had been waiting seven months to see on the NHS.

At this point I had very mixed feelings; elation that I was finally getting the treatment I needed, but also sadness that we have a two-tier health system. I am extremely lucky to have this insurance, but what about those who don’t? How was I ever going to repay Quantel’s kindness?

So on 17th February, St Patrick’s Day, Adrian and I head up the M1 to see Mr K. The only appointment we could get was 4:45pm but we were not in a position to argue so we arrive in plenty of time and wait in the waiting room. All the feelings come back, we are apprehensive but happy that we are seeing the right person and confident that this is the final phase in Tarquin’s demise. I should be healed and healthy in plenty of time for our wedding, which is 9 weeks away.

We go in and meet Mr K who shows me the MRI scan taken on 1st November. And there he is. Changed but not diminished; Tarquin, my tumour, is back. As big and clear and life threatening as ever.

After my surgery Mr G had informed me that he was able to remove 90% of the tumour. Mr K informs me that this is either not the case, or that we were mistaken in thinking that Tarquin was a slow growing tumour. Tarquin is back to 3cm in size, he resembles a broccoli floret rather than a plum but he’s there. And now he’s managed to grow around more nerves and as well as taking the sight in my right eye, he now threatens the sight in my left eye. Surgery is now not an option as any resection would damage the nerves and would cause me to lose my sight completely. All we can do is Gamma Knife radiosurgery.

Adrian and I look at each other in disbelief. How could this happen? How can Tarquin have grown back in just three months? And this scan is four months old – what size is he now? How can anyone have looked at my scan in November and ignored what is plain to see (even with one eye)?

Mr K continues with the news that my visual field tests which took six weeks to get to him, are worthless as they were done by two different methods and therefore cannot be compared. He  also explains that when he does a pre-operative MRI scan on Thursday,  it may be that the tumour is too large to treat in one go and that I may have to come back in a couple of months for a second procedure. But doing nothing is not an option; we must act and act fast. He schedules my surgery for next Thursday. One week’s time.

The Gamma Knife Surgery will cut off the blood supply to the tumour. There will be no immediate effect, but over a number of years Tarquin will turn from tumour to scar tissue and eventually be absorbed by the body. Mr K is confident that he can apply the Gamma radiation to most of Tarquin, but he will have to leave the part nearest my optic nerves in order to safeguard my sight.

As we leave his office Mr K tells me to “cheer up”. An odd thing to say, but as we know Neurosurgeons are not known for their people skills. And I really should cheer up. He could have told me to go home and put my affairs in order. He didn’t. We have an opportunity, a chance and that is something to be grateful for.

On the way home we find it hard to talk. We stop for something to eat and a pint of Guinness (well it is St Patrick’s Day and I can’t let a little thing like brain cancer get in the way). Once at home we sit and hug and cry. It’s just like getting the diagnosis all over again. We feel like we are back at square one, only this time it is worse. I am still recovering from brain surgery which will leave me with lifelong side effects. I am now permanently visually impaired, have reduced cognitive function and epilepsy. It feels like the last seven months have been for nothing.

For the first time I feel angry. I’m not sure who my anger is directed at. Adrian’s is directed at the inadequacies of the NHS. In particular the temporary staff member who has consistently lost letters, MRI scans, Visual Field Tests and just giggles inanely when I phone to chase things up. He considers her to be negligent. I just blame Tarquin.

Phoning my parents was so hard; they too had such high hopes.  But when I check in to hospital next Wednesday I know I will finally be getting the treatment I need. Tarquin will be banished and die in exile like his namesake. But I can’t help wondering whether this could have all happened sooner, and indeed when I would have been treated if my health insurance weren’t paying a significant sum. But you can’t live by ‘what ifs’, it will drive you crazy.

Now then, where did I put all those modest nighties?

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About tarquinchronicles

I have recently been diagnosed with a brain tumour which I have called Tarquin. Tarquin was a Roman emperor who was inordinately cruel and vicious but who was eventually banished and died in exile. This is the chronicle of the rise and (hopeful) fall of Tarquin the Tumour.

19 thoughts on “Back to square one

  1. You know, you’ve really got to stop making me cry at work. It’s looks really unprofessional and kinda undercuts this whole ‘manly man’ thing I’ve got going on.

    As always, you are in my prayers and if there is ever anything more concrete I can do, please just ask xx

  2. Sweetheart, they will stop Tarquin, you will live a happy life with that wonderful man of yours and your lives together will get better and better xxx
    The ***kwit admin assistant however will remain a ***kwit, to the detriment of mankind, forever!
    Big hugs to you xxx

  3. Hey You….
    Sorry not to be closer, so you could listen, laugh, and comment on my escapades.
    So you will have to make do with the most enormous transatlantic D hug (tee hee), which will be replaced with a proper one once I am released from my 44th floor NYC open prison suite!

    laters… xxx
    TD & Me

  4. I am sending you the most enormous of hugs and Mr Scarlett has visions of you in the red underwear again….you know we love you both and are here for you (and Daisy & Lily) xx

  5. If anyone has the spunk, sass, and gumption to conquer this one, it is you my friend. I miss your sweet face. I’ll will be sending you lots of love and keep you in my prayers. Miracles happen every day. Bless your heart, your soul and your family. We’ll be riding bulls again some day.

  6. Sending you a MASSIVE sequinned Dancing on Ice hug and letting you know you just need to shout if there’s anything I can do.

    Lots and lots of love xxxxxxxx

  7. Have you thought of publishing this? of approaching a newspaper and writing an article?
    It may help others or highlight this issue even a little?

    I am very glad you are now booked in to have the treatment that you need.


  8. Nothing that i or anyone else, thinks or says can make Tarquins growth any better…. however i’d still like to give you and Adrian all my best wishes and hopes for this next stage.

    I started reading a new ‘self help’ book this past weekend, which seems appropriate it the circumstances. It’s simply called ‘Fuck It’.

    My love and best wishes

    Bruce T.

  9. Hi Justine, will be thinking of you on Wednesday and raising a glass to the procedure going well. Beyond lies marriage to an amazing bloke and summer tarting brawlers lunch with Miss Laws. Love Ringoxx

  10. Just!

    Dad just called to tell me know the horrible Tarquin is back. I can’t believe it. He’s a persistent bastard isn’t he?! The new treatment sounds promising and I am so glad to hear your consultant did not tell you to go home and get your particulars in order!

    Your blog as ever, is moving and this time, quite disturbing, even having experienced the inadequacies of the NHS first hand, I am shocked to hear that all because of a temporary staff member (who probably has no concern for her job) life changing information has been held up from your doctors….What is this country coming to when the people most in need are neglected and let down by an archaic administration system, It’s ridiculous that this is still happening even though we have the technology to prevent it.

    I so am angry and frustrated for you but at least you are in expert hands now!

    Good luck on Thursday and if there is anything I can do for you, shopping, lift to town, booze run! etc etc. Please let me know.

    Lots of Love

  11. Hi Justine,

    Will be thinking of you this week as you go for the next stage of Tarquin bashing!! Really hope that this treatment will do the trick and banish him from your lives for good.

    Take care and keep keeping positive!!!

    Lots of love Jo

  12. Oh Justine, when you emailed me only this morning saying let’s get together for a ‘drink and a proper catch up when all this horridness is over’ I really wish I’d read your latest contribution to the Tarquin Chronicles before I responded with my chipper comments……. but then you would have wanted upbeat anyhow.

    I can see from the comments above how many people love, admire and are inspired by you. You’re a ballsy woman, Tarquin is a big girl’s blouse – now go gamma him!

    My love (and the prayers of my mother and her church) are with you, Sheila

  13. I’m so sorry to hear this Justine . I haven’t checked this site for a few weeks since starting the new job. I’m shocked and gutted that twat is back, doesn’t he know when he’s not welcome. The last time I saw you, you looked so well and I’m sure you still look that way now ;). I can completely understand what you have been through when you talk about the NHS and it’s good to read that by going private the difference in time is just amazing. In February Paul’s parents came to tell us his mum has lung cancer. I told her about your story and he’s Tarquin she we’ve decided we’ll call him Bugger (the reason is in the name). Bev (paul’s mum) went to the doctor at the beginning of January because she didn’t feel well and had a cough that just wouldn’t go away. Bev thought maybe she was going through the change but instead of been tolding it was her age and the end of a cold she was told it’s lung cancer. Bev has had FOUR biopsy and probably every kind of scan thats around and yet we’re still waiting to be told what stage and exactly what cancer she has. We’ve been told after every biopsy we’ll know the result the following week but when the following week came they still don’t know. We’ve been told it’s just a matter of time for her, then told it’s not what they thought, then it was that it’s untreatable to it’s treatable. After 3 months we still don’t have any clue what exactly we’re dealing with, bloody NHS. Thankfully Bev is a very positive person and won’t let bugger beat her. I want you to be like this as well. I do believe that the mind is a powerfull thing and that things changed just by the way you think. Although I know Bev’s bugger is different to Tarquin, you can beat him just like Bev will. I’ll even supply a broom or a bat to do it, lol. I hope you don’t mind me sharing my story with you. Your being looked after now in a better place and by more professional people which is lovely to hear. Things are always sent to try us. Both you and Adrian will come out of this better and closer and at the end you’ll both be able to deal with anything that life throws at you as husband and wife. I’m thinking of you and I always did as soon as Sarah told us what you were going through. xxx

  14. Justine

    I have no words. You are just simply an amazing person. Banish the twat Tarquin. Kick his head in.

    I think of you every day and your blog is the best thing in Cyberville.

    Anything you need, just ask.

    N x

    PS: Sorry for the language.

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