Good days and bad days

I cannot begin to describe my struggle.. Unless you have experienced this illness you won’t be able to understand how distressing my symptoms are..

My main symptoms are fever, night sweats and itching (pruritis). In a previous post ‘My story’ i mentioned i have ‘B symptoms’, these are symptoms which occur in some people who have lymphoma, it refers to weight loss, nights sweats and fevers. I have 2 out of the 3 B symptoms. Unfortunately B symptoms are associated with a worse prognosis.

I have what i call ‘good days’ and ‘bad days’. The good days are when my symptoms are manageable and i am able to function to a reasonable extent. On a good day i may even be able to go out for a few hours, im more cheerful and positive – the old me.

Today is what i describe as a ‘bad day’, i am bed ridden with limited energy. My symptoms can be so distressing that it leaves me broken and i am close to loosing all will power. 

Where shall i begin and how can i explain to anyone what i am feeling. My fever is by far the most awful symptom i have, it is like no fever i have experienced before. I feel my skin is being roasted on a barbecue, the burning stinging sensation of heat radiating from my skin leaves me worn out. I take paracetamol regularly, i use ice packs, a fan and drink cool fluids – none of which help. I wear minimal clothing made of 100% cotton and take regular cool showers – any attempt to bring my temperature down. I have reached a point where the only temporary relief i can get is by pressing my bare body against my cold bathroom tiles.. It is unbearable.. I would not wish this upon anyone.

Along with my fevers come my night sweats.. Or shall i say my any time any day sweats.. The sweating people get from a workout in the gym i can get just for existing.. Dont get me wrong i am not saying i am dripping with sweat every minute of every day, but there are days when i have to keep wiping my sweat away. It can be humiliating going out and always having to be conscious checking to see that whether i have left a damp sweat patch behind me when i get up from a sitting position.. Yes it is true, i have no reason or need to exaggerate.. When i went to the hairdresser to get my hair chopped off i was sat in a leather chair, when i got up my clothing felt damp but to my relief i had left no mark behind. At night i can be drenched in my night sweats this can easily wake me up resulting in a disturbed sleep pattern. It is not fun waking up to find your clothes and bedsheet wet from the sweating, it makes me feel dirty and fed up, its just so exhausting.

Some days my predominant symptom is itching.. Intense itching which leaves me wanting to rip my skin apart.. I have tried all kinds of tablets to help control my itching but my body seems resistant.. I try to moisturise my skin and yes i have tried all kinds of creams, lotions, you name it.. Wearing tight clothes makes my itching so much worse that i now wear 2 sizes bigger than my usual size. I can no longer wear materials other than cotton, and if i do wear another material then beneath it i will wear a cotton layer.

When all three symptoms occur together i feel so sick that i forget about loosing my hair, being infertile and having no life.. 

Now all i want is treatment.. I am desperate to start my chemotherapy.. I know it will leave me feeling unwell, but my symptoms are a constant reminder that my cancer is active.. I feel helpless.. I need treatment.
My symptoms are getting worse each day and now have become more frequent.. I need help..

Fan, paracetamol and ice pack.. Trying to stay cool

5 thoughts on “Good days and bad days

  1. Hi
    My sister is also diagnosed with Hodgkins lymphoma in the mediastinal region.
    We can understand the pain n stress
    Inshallah u wil get well soon.
    Iltemase dua

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  2. I lost my mother to cancer.
    After a long battle she died when i was 21 and at a time in my life when i needed her the most.
    I cannot begin to imagine what u’re going through but if its anything like what my mum went through i pray to allah to ease your pain and get u through this asap.
    I cant do much to help other than pray for u but i’ll leave u with words my mother told me once over the phone in what felt like a goodbye speech to me:
    She heard me crying over the phone and she calmed me down and said at anytime u feel sad or u feel the weight of losing me just remember what lady zaineb lost for i am nothing in comparrison to the people she lost and yet she was the rock for everybody, she stayed strong in the face of everything she’d been through so let her strength inspire u and keep u going.
    I am happy to hear u have a good support system even when sometimes u have to be strong for them u still know that ur loved through the good and bad.
    My thoughts and prayers go out to u in ur time of need, god bless u my dear. R.

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      1. We are family, a few kind words is all i can do right now without feeling helpless even if i dont c u often ur in my heart dear cuz.
        I wasnt gonna say anything but i noticed rami has reached out so plz keep in mind we love u and wer praying for u wer all in this with u so plz fight and dont let cancer steal away another jewel from this family luv u hun xx

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