Thursday, 18 February 2010

It's a family's battle

Just with any other chronic disease, I have my good and bad days. During my good days, I'll feel energetic, the itchiness will not be as bad and I look perfectly normal in the eyes of others.

However, when things aren't too good, it doesn't matter how much rest I have, I'll still feel lethargic, my neck aches, and my itchiness flares up.

The frustrating thing is that I can't dictate my good and bad days. There is certainly no clear pattern to it. I can't safely say that if I eat the wrong food, my itchiness will flare up more, or that I will have a good day if I sleep well the night before.

My family are certainly trying to adapt to my circumstances. Plans laid out for the day may have to be cancelled or postponed if I don't feel up to it. We'd understandably not go out as often as in the past and spend more time at home. This is when having an understanding family is pivotal, where each of them acknowledges the unpredictable nature of the disease and thus compromises on a lot of things.



One of our family trip during my good day


The lovely thing about having a supportive family is that you know each and everyone of them wants to play a part in helping.

Mom is certainly making big adjustments to her daily cookings, paying extra attention to how much salt and sugar she uses, opting for olive oils most of the time, and cutting off on foods that are 'cancer-feeding'. Diet certainly has its own part in preventing or causing a cancer, so it certainly does not do harm to be more particular with what we eat especially nowadays, where additives and preservatives are found in so many of the foods and drinks we consume.

Dad and my siblings are certainly training themselves into becoming excellent masseur and masseuse with me being their regular customer. Body massages help to slightly relieve my itchiness and neck pain, as well as relaxing any tense muscles. I am not sure whether they enjoy having to do it on a daily basis, sometimes more than once within a day, but they certainly never complained.

My medical case has been reviewed by the clinicians in HUKM and they have stated their opinion on my condition. And they believe that there is still one treatment possible which could cure the condition, but one that poses a lot of significant risks along with it, and one that even they admit only carries a very, very low percentage of success.

We therefore feel that our main focus at the present moment is certainly on alternative treatments, with hospital treatment possibly being an adjuvant therapy to help relieve my symptoms.

The battle will keep on going, insya Allah. Pray for us.

18 comments:

JeP said...

Wokeh, nnt tunggu aku balik and kita pasang air-con plak! :D

Raden Galoh said...

Hang in there strongly brother!

Always doa for you...keep up the positive spirit ya.

akak dah email you.

Johanna said...

doa untuk afzal.. InsyaAllah.

yatibahar said...

Salam Afzal,
We are in the same boat except that you have completed your studies but I'm not - I'm fighting 2 battles now; cancer & PhD :-)

I found out that I've made a good decision returning to M'sia. There are lots of things that can make us better here. If you have kampung, stay in kampung with lots of fresh air is much better. I can't do it now coz' my husband is working here in Shah Alam and kids are still schooling. So, every morning I'll breath in deeply infront of my garden with plants that I let them go bushy :-) Lots of oxigen eh.. And for your itchiness, that extra virgin olive oil will do the trick. It works well on me :-)

Stay strong,
K Yati - ex-notts

mimosa said...

caya lah mas..sy doakan anda..
luv u...

rhapsody LiN said...

im so glad to see ur smile. ikhlas ckp ni. hehe..

this morning i look at ur previous en3. then i let my sis to read it too then we cry together.

i know nobody will understand how we feel when we have to face the disease in our body. u have portray it best. lin x reti nk bagitau ape yg lin rasa. lin nmpak ok je.. orng x tau yg lin sakit. kalau lin sakit i just keep my mouth shut because i dun want they to worry bout me.

when i read ur blog then i know that bukan lin sorg je yg pernah rasa all the difficulties, sadness, sedih sangat dengan apa yang jadi. but i feel glad because i know that He loves me. that's why He gives me this disease as a present for me to keep remember Him as the greatest creature.. iA..
doctor pun ckp macam tu cz my disease ni bukan sebab keturunan. doc pun belum jumpa penyebab sebenar SLE..

so, i hope u'll keep strong. i r my hero. now and forever.

salam
:)

rhapsody LiN said...

sorry typing error
**u r my hero

:))

|arieza| said...

dear fren, be strong. saya mendoakan anda dilindungi Allah yg Maha Adil. :) be strong, which i know u are! :)

Anonymous said...

Assalamu'alaikum Warahmatullah Wabarakaatuh Wama'rifatun Waridhwan to u Mas and your family.

My prayer to Allah SWT are always for your speedy recovery. I know you are very determined and strong and I pray you will win this battle soon.

Please continue update this blog because your writings since Dec08 were very inspiring that many people become more aware that we are Allah’s servant and need to be a good practicing muslim . It's surely an excellent amal jariah. I will share your blog with as many people as possible to get a share of amal jariah too. I hope other people will also share your blog with their friends.

Rabbana la tuzigh quloobana ba'da idh hadaytana wa hab lana milladunka rahmah innaka antal Wahhab. Our Lord! (they say), Let not our hearts deviate now after Thou hast guided us, but grant us mercy from Thine own Presence; for Thou art the Grantor of bounties without measure
[3:8]

And lastly from me:

Rabbana wala tuhammilna ma la taqata lana bihi wa'fu anna waghfir lana wairhamna anta mawlana fansurna 'alal-qawmil kafireen. Our Lord! Lay not on us a burden greater than we have strength to bear. Blot out our sins, and grant us forgiveness. Have mercy on us. Thou art our Protector; Help us against those who stand against faith
[2:286]

Akhukum Fil Islam.

Mohd Shahnom Ismail said...

Fighting :)

ummuNaim said...

semoga sembuh mas..insyaAllah..

arsaili said...

salam mas afzal...keep fighting, may ALLAH grant you shifa....take care yea

munamuni said...

semoga Allah selamatkan kamu dan kita semua..Amin.

Anonymous said...

shahnom sengal...

Sherzamm said...

Hi mas, I just want to say that your battle has been an inspiration to me and others from my batch and that we pray that no matter what, you will be calm and carry on bersyukur - sebab u mengajar I utk bersyukur selalu....

Sherliza

Kamal (The Netherlands) said...

As salaamoe alaikoem wa rahmatoellaahie wa barakaatoeh akhie,

May Allah bless you and your family with djannat al firdausoel a'laa. Inshaa Allah you will stay firm and persist these trials and tribulations my brother fiel islaam. I love you for the sake of Allah brother. Inshaa Allah I'll see you one day in Malaysia and otherwise in djannah inshaa Allah.

Your brother Kamal from The Netherlands,

And Allah knows best

Khazinatul Asrar said...

salam..

Allah tidak membebani seseorg itu melainkn dgn kesanggupanny. (Surah Al-Baqarah, ayat 286)

tabah ya!

Anonymous said...

assalamualaikum....

this is random but maybe it might helps :)) A man with an almost hopeless case of Hodgkin's disease
(cancer of the lymph glands) who was completely incapacitated. Within
1 year of starting the asparagus therapy, his doctors were unable to
detect any signs of cancer, and he was back on a schedule of strenuous
exercise.

* * PROCEDURE:
1) Place the cooked asparagus in a blender and liquefy t make a puree,
and store in the refrigerator.

2) Give the patient 4 full tablespoons twice daily, morning and evening.

Patients usually show some improvement in from 2-4
weeks. It can be diluted with water and used as a cold or hot drink.
This suggested dosage is based on present experience, but certainly
larger amounts can do no harm and may be needed in some cases.

who knows kan, it might work! takecare.