It has been about three weeks since I was last an inpatient in hospital. Every day that passes by with me being at home is an achievement in my eyes. Despite being of a medical background I am not shy to admit that I absolutely fear the idea of having to spend another night in hospital… and will do anything i can to avoid it..
Fear.. a word I now probably use more often than ever before.. you may judge me and say I should have more faith and be more strong.. because those who are don’t fear anything.. but this is it; i have no fear from death, i have no fear from cancer.. I fear being in hospital.. being in a hospital bed.. being tied to a drip.. loosing my autonomy. However i know it is a small price to pay for better health, something I have to just accept and deal with in my own way.
I have now completed my last cycle of chemotherapy.. and yesterday I had a PET scan, the results of which I nervously await.. its just a matter of time now.. a waiting game thats bitter… whatever the outcome of my scan I wont be a free lady.. my scan will show that I either haven’t responded enough to treatment meaning another drug has to be tried.. or my cancer has responded enough for me to move on to the next stage of treatment.. which is having a bone marrow transplant..
This situation is very different to the one i was in last year..because regardless of the outcome i know i am still not at the end of my journey.. having said that i pray and pray my scan shows i have responded enough to have a transplant, as ultimately that is what i desperately need.. even though i fear the idea of being trapped in hospital for weeks (when having the transplant).
I really don’t know what my scan will show.. I don’t have a gut feeling or any inkling.. The main symptom i have at present is night sweats.. really really bad sweats whereby my clothes stick to my body like tape and i have to literally peel my clothes off.. despite the weather being colder now in London i sleep with my fan close by. These night sweats can be because of the cancer or because of the injection i am on (zoladex – which puts me into artificial menopause). I haven’t had night sweats which are this bad for months, and I honestly don’t know which of the two is causing it, or whether it’s a combination of both. I can only stay positive and hope for the best!
Today I came across an article about a doctor (who happens to be GP), her young child was diagnosed with a rare cancer of the kidney, shortly after her daughter was given the all clear, she herself then develops a rare and serious autoimmune condition. In the article she talks about how she felt that even though she is a doctor, she wasn’t treated any differently, and in fact her daughters diagnosis was delayed as her concerns were not fully explored.. and at one point she was called “neurotic”…. You may be wondering why i shared that story.. well its because something about it resonated with me.
There is this misconception that if you are a doctor you automatically get special treatment.. that really isn’t always the case.. I admit when i was a patient in the hospital I worked in most the doctors treated me as a colleague and that was nice.. but i clearly remember how on one occasion, minutes after i was told my scan had shown I hadn’t responded to treatment, i was upset and the nurse who was present when i was given the news told me “your always anxious” in a really patronising way.. she then immediately apologised and tried to reword what she had said. I was too shocked with the news of my scan to reply back.. but i wish i had told her “you try going through what i am going through, then tell me i’m anxious!” In the hospital i am currently being treated in i feel like an outsider.. the annoying GP trainee who can’t keep out of hospital.. everyday a new admission and drama.
As a patient I have observed that no matter how good a medical professional is at their job… or how empathetic they may try to be.. they will never ever fully understand what a patient is going through unless they have had a similar personal experience.. I also have seen how desensitised medical professionals can be.. a patient is just a disease.. a number. I can’t blame them as its human nature… if your repeatedly exposed to something, you will eventually become desensitised to it. I just wish healthcare professionals were more understanding and caring. When i had my latest dose of chemotherapy, i began vomiting before the drug was put up “anticipatory nausea”.. something that has never happened to me before.. but due to my recent bad reaction to a chemotherapy drug, which I ended up in intensive care for, i was understandably very nervous… the nurse who was giving me the chemo told one of my family members that next time I should ask my doctor to give me tablets to “calm me down”.. now what he said does make sense and is common practice, but had he been empathetic and more caring when treating me I wouldn’t have walked away that day feeling upset…
Wow i feel i have moaned a lot today! Despite all the above rants.. i am really happy and truly thankful to God because i am in the comfort of my home and room.. to me this is heaven.. being close to my family.. i have this strange happiness in me.. being at home has really lit a spark.. i know it sounds strange to say this in my circumstances.. but deep in me I am content and at peace.. I feel i am connecting with God in a non traditional way, and that is helping me. I know I am not alone.. whatever news the coming days hold.. i will be prepared to face the next battle.. i’m not ready to give up…
Time for me to sleep.. but before i click that ‘publish’ button.. i wanted to thank everyone who remembers me in their prayer and to everyone who messages me and asks about me.. i have a backlog of messages and i am really sorry for not replying.. some people take the time and effort to write long messages which truly touch me and brighten my day.. if I don’t reply i promise its not because I’m a rude person. I wish i could thank each and every single person individually.
There is one person i have to mention.. Aya Al-Assadi.. I don’t know you in person.. we have never met.. but the letter you posted was one of the most touching letters.. it arrived on a day when I wasn’t feeling great and it uplifted me and had me in tears… thank you so so much and thank you for your beautiful gifts! (I also have a backlog of pictures to post!)
Praying the next time I write a post I will have good news to share..
So much love and positive energy from me to you all.. in a world full of darkness let your smile and love of God light the way xxxx