Kate G
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Diary of a "Fake" Cancer Patient - Got to be in it to win it

Kate G
Posted by
22 Aug 2014

One of the greatest challenges since my diagnosis has been to stop looking ahead too far when by nature I’m a bit of a planner. Some have called me a control freak with which I totally agree since I really do like to have all my “ducks” in a row with my life (it also makes me good at system testing, which is a bit useful in my job). I didn’t even realise I was good at planning until I organised my wedding & I suddenly discovered this previously well hidden skill set which I have subsequently put to good use. So it was a bit of a shock to realise that something was happening with my body that I couldn’t control, where in fact the control was completely wrenched from me & even worse, that others were making decisions about what to do with my body !!! I remember thinking that I should be at the multi-disciplinary team meeting where all these cancer specialists would be talking about my cancer diagnosis (amongst many others) & making decisions that would have a far-reaching impact upon my future quality of life. This was both by degrees infuriating & worrying & to a certain extent even 4 years down the line; I haven’t really got over it...

In terms of patient care for those of us in watch & worry/wait this poses certain key questions such as who really decides when my symptom burden is such that I need to start chemotherapy. I would like to think that I have some say in the matter, after all it is my body, & I’m pretty well read on what chemotherapy actually does to the body. Conversely, & if the decision is predominantly clinical, does that mean I don’t have any say when/if I think I need to start treatment? It’s all very well someone telling me that my tumours are fairly small, but to me they are big & in my mind they are getting bigger all the time. So who decides whether a tumour is large or whether my “B” symptoms are severe enough to require treatment? In my overly simplistic mind symptoms sit on a sort of sliding “scale” & at specific “checkpoints”, treatment will be needed but I’m not convinced that there is consistency. I was on-line recently & we were comparing notes about bone marrow biopsies & I was stunned to read that different consultants treat differently as far as pain mitigation went. My recollection of my own biopsy was that I lay down on my side, that pain relief or local anaesthetic was neither offered or provided & that my young baby (15 weeks old at the time) screamed throughout until the needle was removed from me.

Different health boards & different consultants operate different practises & there is SO much inconsistency, which also means that I can’t help wondering if all treatment decisions are primarily based upon cost, which is of enormous concern. I also recently saw a poster by one cancer charity that provided statistics in respect of life expectancy based around the county in which you live. I don’t think it’s right that a health board’s ability to balance its books may have a direct impact upon treatment that I or other patients may or may not receive. Maybe we need full transparency on treatment options alongside consistent standards of support? It is inconceivable that cancer patients, who quite frankly already have enough to worry about, should have to be part of the postcode lottery for health that exists in the UK.

Comments

Anonymous
22.08.2014

Totally agree with you! It is scary that we do not get more information up front. Once we hear the words "You have cancer" our life is forever changed not only with treatment but with the lasting side effects and qualtiy of life. Very well written! Thanks

Anonymous
13.09.2014

Hi kate
may I ask where in the UK you are? I was also diagnosed in 2010 though a variation in the type of leukemia to yours. I was started on treatment immediately, even before the bone marrow biopsy. however, whilst my blood levels are good I continue to suffer the same excruciating pain throughout my body that took me to the GP in the first instance and nobody seems to take any notice as to how unmanageable my life is becoming, it is all about blood counts. There is no psychological support at all.

Anonymous
15.09.2014

Hi Mia,

I'm based in South East Wales - I'm so sorry to hear about your experiences. If you get in touch with Andy Jackson in LLR, please ask him to pass on my contact details to you & get in touch with me directly - one of the reasons that I write this blog is to raise awareness of the differences in treatment for cancer patients across the UK & I'm doing what little I can to get that support that people so desperately need. Hope to hear from you soon love Kate xxxx