Tuesday 15 July 2014

Few doa that I always read for him..

Assalamualaikum & good day peeps,

Ramadan Kareem to all Muslims out there.

I'm so sorry for this long silence. There are a lot of things going on, and I am also busy traveling here and there causing me with no choice but 'accidentally' abandoned this page.

Hubby has been asking me to share doa that I always recite throughout his treatment up to now. I know many have shared a long list of surah and also doa to be read for cancer patients. You may refer to that list, and addition practice these ones. These doa are actually very short and easier for me to memorize them.

Here it goes:

1) Selawat syifa'
    - I first go to know about selawat syifa' 
      during my high school.
    - I always recite this selawat whenever 
      I'm in pain (stomachache, delivery 
      time!!)


2) Doa untuk menyembuhkan penyakit rumit
    - This doa was given by a friend of my 
      friend; who actually learnt about 
      alternative treatment method 
      (at Darussyifa').
    - This doa can also be read by visitors 
      for the patient.
    - I recite this doa while preparing 
      hubby's food & drinks, also while 
      feeding him.
    - Can also be recited at any point of 
      time while rubbing the area that 
      causing the pain to the patient.


3) Doa untuk merangsang selera
    - This doa is to ignite 'appetite' in 
      general. I always recite this doa with 
      the intention to improve hubby's 
      eating appetite.
    - I recite this doa while preparing 
      hubby's food & drinks, also while 
      feeding him.



May our sharing here benefits others who are in the same situation. May Allah ease our journey in fighting this tough challenge. Aaminnnn.

Cheers,
Intan & Naim
17-Jul-2014
Shah Alam

Friday 3 January 2014

His first cycle chemotherapy...

Hello everyone..

Hope everybody had a blast holidays. Sorry for the long delay of this post. Today we are going to share our experience during hubby's first cycle of chemotherapy.

Chemo start date:
06th Feb 2013

Chemo completion date:
09th Feb 2013

Chemo drugs:
Day 1 > Epirubicin 1000ml + Ifosfamide 1000ml
Day 2 > Epirubicin 1000ml + Ifosfamide 1000ml
Day 3 > Ifosfamide 1000ml
Day 4 > Ifosfamide 1000ml

Additional medicine(s):
Maxolone (anti vomit #1) 
Emend-Aprepitant (anti vomit #2) 
Nexium (gastric)
Anti vomit #3 *cannot remember the name (via IV) 
Mesna (to avoid internal bleeding-via IV) 

Method:
Via IV

06th Feb 2013, Day 1:
We arrived at PPUKM around 8AM plus. Being first timers, we didn't know much about the procedures, the admission process, people and places.

We went straight to 1st floor Oncology Clinic, asked the staffs there where day care is. Confused between day care and in-patient oncology ward, we went to in-patient ward instead. We were then instructed to enter a door next to the ward.

Surprisingly the day care was full of people. We thought we were early; we were wrong! There were many other people came earlier than us.

I passed hubby's appointment book to the admin lady. We were new; she was aware of that.

After few minutes, hubby was called into treatment room. His weight was measured; 69kg. A nurse asked whether hubby has a chemo port. We said no, and she straight away setup an IV port* for him. Blood sample was taken and we were asked to wait at waiting area.

*Sorry if I got the term wrong.. :-)

There were many files on the counter. 2 MO were on duty. Me, being a newbie, failed to guess which file belongs to hubby :P. Well, I thought hubby's file was thick. Actually there were many more thicker files there!!!

After sometimes (couldn't remember how long we actually waited), hubby's name was called by one of the MO. Blood test was fine, so hubby could start with his first cycle chemo. The MO gave hubby free trial anti-vomit pills @ Emend to hubby; free for the first 2 cycles. We had to buy the pills for the remaining cycles. The admin lady issued an admission form and I did all the paperworks at the registration counter (located hospital's main lobby).

At the day care, hubby booked a bed. Since they hadn't started anything, we had lunch first. A nurse came and said, "Yes, better to eat first", leaving us with question marks. Cannot be the symptoms will start that very soon, huh?

It was around 1PM when the nurse came back and told hubby to take the first Emend. Anti-vomit jab was also given and hubby was put on drip for around 30 minutes. Emend had to be taken at least 30 minutes before chemo starts.

1.30PM nurse came and switched the drip to Epirubicin. It's a red color fluid. There was a machine; set as a timer to alert when chemo drug has finished.

Around 3 something PM, nurses at day care were already busy transferring patients to inpatient ward. It's sort of 'handover' process. Day care is open daily from 8PM to 4.30PM. Patients that are admitted in the morning or haven't completed their daily chemo; will be transferred to inpatient ward between 3.30PM to 4 something.

Hubby's first bed at Wad MAKNA HUKM was bed 25. Next to his bed was an uncle; who obviously was another cancer patient (Al Fatihah for this late uncle). I became quick buddy with his wife, Kak Maimun.

It didn't take long for the most common side effects to appear. Late afternoon, hubby started to get tired, sleepy @ drowsy, nausea and thus, losing his appetite. He didn't take much for dinner. And due to the color of the drug, his urine also turned into red color.

Around 5.30PM, nurse came to take off the empty bottle and changed it to normal drip. After half an hour, next drug chemotherapy started. First, nurse injected Mesna (purpose is to avoid internal organ bleeding - esp bladder irritation). Then Ifosfamide intake started; this one took 4 hours to be completed.

In between of the 4 hours, a doctor came and passed to me brochures on side effects of 'Epirubicin' and 'Ifosfamide'. Well, the OLD and IGNORANT me just went through the brochures and kept them in the drawer. The doctor also asked whether hubby is taking any supplement at that moment. To which, I nodded. At that time hubby just started taking 4Life Transfer Factor. Doctor told me to stop the supplement intake to avoid any interference with the chemotherapy. I didn't really plan to follow the instruction though.

Hubby didn't ate much for dinner. I prepared Milo for him and sort of forced him to take TF. However, the strong smell triggered his nausea. I tried to put 1-2 capsules; removed the capsules and just poured the powder into his mug without his knowledge. Hey!! His could even smell it!! I rest my case, had to stop TF so that he won't vomit.

Around 10PM, the Ifos finished and nurse gave him 2nd Mesna injection. The 3rd injection was given around 1AM.

Hubby on his 1st day chemotherapy
Date: 06th February 2013

07th Feb 2013, Day 2:

Same cycle was repeated; Epirubicin intake for 2 hours + Ifosfamide intake for another 4 hours. Hubby's nausea became worse. Yellow plastic was always on his side; in case he vomited. He didn't much and slept most of the time. New side effect, hiccup. It's not common for us to hear about this side effect, isn't it? But, it's true. Hiccup is one of chemotherapy side effects; I'm not sure which drug was causing the hiccup. Doctor said sometimes it can happen. It could be due to Epirubicin, Ifosfamide, Emend or maybe Nexium?

08th Feb 2013, Day 3:

On the 3rd day, only Ifosfamide was give to hubby. He slept most of the time due to side effect of the treatment, causing him feeling drowsy & sleepy, thus resulting in lesser food intake. But sleeping helps him a lot from feeling nausea. He had slight fever early on the day, which gratefully went down afterwards.

09th Feb 2013, Day 4:
Hubby's condition was better than the 3rd day. Lesser drowsiness, lesser nausea (except when he smells something too bad/too good!!), better appetite compared to the previous day.

The fatigue was still there. And he had slight temperature in the afternoon. The on-duty MO was reluctant to discharge him due to his fever. We put cool fever on his head and I wet his body to lower down his body temperature. We really wanted to go home after 4 days being away from the kids.

Summary:

Here, I list down side effects for both Epirubicin and Ifosfamide:

Epirubicin
  • Low white blood cells count
  • Anaemia
  • Bruising and bleeding 
  • Feeling sick or being sick
  • Sore mouth and throat
  • Loss appetite
  • Taste changes (suddenly chilli sauce taste TOO SPICY)
  • Hair loss
  • Skin changes
  • Discolored urine
  • Fatigueness
  • Diarrhea
  • Nail changes
Ifosfamide
  • Almost all from Epirubicin's side effects
  • Bladder irritation

I will continue with summary of each cycle (and post chemotherapy treatments) in next coming posts. After that I will share tips on how to boost up the patient's energy and immunization.

Cheers,
Intan & Naim
Shah Alam
03-Jan-2014
 

Sunday 1 December 2013

Chemotherapy...

Hello everyone,

We are sure many of us have heard about 'chemotherapy' before. Due to increased number of cancer patients; this treatment has becoming more popular and familiar, hasn't it?

So that everybody will be on the same page, we will briefly explain about this treatment.
"Chemotherapy is the treatment of disease by the use of chemical substances, especially the treatment of cancer by cytotoxic and other drugs"
(Source: http://en.wikipedia.org/wiki/Chemotherapy)

There are two ways of giving chemotherapy. Depending on the type of cancer, chemotherapy may be administered orally or intravenously (directly into the vein).
  • Oral chemotherapy (swallowing tablets)
    These will be in the form of tablets. If the patient's health allows it he/she will be able to take them at home. However, regular hospital visits will still be needed to check on the patient's health and response to treatment.
    It is vital that the tablets be taken exactly when specified. If the patient forgets to take one at a specific time he/she should call the medical team immediately.

  • Intravenous chemotherapy @ IV (straight into the vein)
    Intravenous chemotherapy may be given as:
    • An injection straight into a vein.
    • Through a drip (intravenous infusion).
    • Through a drip or pump.
    • Through a pump that the patient wears for several weeks or months. This is called continuous infusion, protracted venous infusion, or ambulant infusion (meaning the patient can walk about while receiving the medication).
There are many types of cytotoxic drugs used to treat different cancer types. One drug might be useful for MFH, but not for lymphoma (another type of cancer); and vice versa.
It is VERY IMPORTANT for the cancer patient (and the caretaker of course), to get to know about the drug(s) to be used for the treatment and also the side-effects.

Below are some information related to hubby's chemotherapy:

Used drugs:
Epirubicin + Ifosfamide

Final dosage: 
Day 1 --> 500ml Epirubicin + 1000ml Ifosfamide
Day 2 --> 500ml Epirubicin + 1000ml Ifosfamide
Day 3 --> 1000ml Ifosfamide

Additional medicines:
Nexium (gastric)
Maxolone (anti vomit #1)
Emend-Aprepitant (anti vomit #2)
Synflex (control of tumor fever)
Lactulose (anti constipation)
Difflam (gargle for sore throat)
Anti vomit #3 *cannot remember the name
Mesna (to avoid internal bleeding)

Method:
IV using chemoport.
**During the first 2 cycles, chemo was done via IV drip on either hubby's right or left hand. It was a total nightmare for him. There is still side effect up to now. 

Snapshot taken: 01st Dec 2013

Can you see lines in between of his hand's bones? The veins are blue black since early of Mar'13. It was worst back then.

How does a chemo port look like?
Chemo port is inserted on top of hubby's right chest. It was implanted under the skin. 

Image of standard chemo port location:



Hubby's chemo port

OK, that's all for now. We will be sharing hubby's chemotherapy experience in our next posts.

Till then, take care peeps!!

Cheers,
Intan & Naim
Shah Alam
01-Dec-2013

Wednesday 27 November 2013

Big-C has gone up to his lung...

Good day everyone,

To those who do not know, my job requires me to travel a lot. I spent more than half of 2012 outside from the country. Unfortunately, due to this, I missed a lot of possible hints on hubby's health condition.

Hubby had started his lectures (he was on study leave from mid 2008 until mid 2012). So it's normal for him to have fever and cough every end of semester. Hubby has quite a big tonsil; therefore it's quite easy for him to get sick.

[End Dec 2012]

Me and my kids returned home on 28th Dec 2012. Hubby had bad cough and on & off fever. He already went to DEMC to get some medicines + antibiotics.

[Early Jan 2013]
Hubby was still coughing badly. Until one point, the cough caused him backache (he felt like something pressured his back bone every time he cough). He told his oncologist; whom then instructed for ultrasound. The ultrasound was clear.

Hubby went back to DEMC; and he was given another set of medicines + antibiotics.

[Mid Jan 2013]
We went to DEMC again. This time the doctor gave hubby stronger medicines + stronger antibiotics. She said, "After one week if you still haven't recovered, come back and we will do chest xray".

Hubby took the med and finished his antibiotics; but his cough was still there.

[22nd Jan 2013]
** Not related to hubby's condition **
As I mentioned earlier, my job requires me to travel. My return was supposed to be for 3 weeks plus (home trip). I had booked for my flight to Melbourne on Friday, 25th Jan 2013. Accommodation also had been arranged.

On this day, I received email from a project manager to cancel my trip back to Melbourne and support the project from Malaysia. At first I was startled. C'mon, how come he gave me such a short notice. Anyway, given no choice, I cancelled all booking arrangements and made a booking at Grand Lexis PD instead :D.

[26th Jan 2013]
Syasya was not well and since doctor had told hubby to return if his cough is still there, three of us were at DEMC since morning.

I brought Syasya to meet her paed, Dr Koshi at the 1st floor. Hubby went to outpatient clinic alone. Syasya was done before I got a call from my husband, asking me to come down to outpatient clinic.

Hubby had a chest xray and we were called into the doctor's room. The doctor, my husband and I looked at the image. The first question from the doctor, "Are you a smoker?". Both of us shake our head and said, "No". The doctor then referred to a specialist and hubby was advised to go for CT scan.

In the meanwhile, I sent Syasya home and hubby stayed at outpatient resting area waiting for CT scan. The CT scan was done around 3 PM. The result came out few hours after that. It was confirmed that A MASS was found on hubby's left upper lobe lung.

I went home and realized something. Allah knows better than us, indeed it's true. Allah has planned our life and things that happen for reasons. Then only it hit my mind that my Melbourne's trip was cancelled because of this. It's better for me to be home instead of thousands miles away from hubby.

[27th Jan 2013]
Hubby was discharged around noon time. Since I had made prior booking at Grand Lexis, regardless with the recent shocking news, we headed straight to PD.

We didn't really think about the tumor. We tried our best to enjoy our short vacation before meeting hubby's oncologist on Thursday, 31st Jan 2013.

[29th Jan 2013]
Today was the day when I started to panic. How come I was so calm for the past few days since we first got to know about the lung mass? Because I thought there was ONLY ONE!!! I didn't cross my mind that two smaller tumors were also found in hubby's right lower lobe. How did I got to know? On this very morning, hubby asked me to take a copy of the report for him to submit to his faculty. And only today I got to know there was a report provided inside the CT scan envelope

CT scan date: 26th Jan 2013


I had a colleague in Dubai who had removed part of his lung in order to get rid of cancer tumors. So, my mind was thinking, "OK, there is only one on his left upper lobe. Maybe he can go for surgery to get the tumor removed, or worst case surgeon will remove part of his lung". But with the most recent news, one huge on his left upper lobe and few more on right lower lobe; my mind went blank.

Many possibilities came to my mind...
"Previously I thought surgery is feasible, but now left and right. How can he go for surgery in this case? Can chemotherapy help to kill the big one? Is chemotherapy safe for him? Can hubby go through chemotherapy towards the end? How will we cope with me working and him undergoing treatments?".
Looking at the devastated me; hubby said, "You have to be strong. If I am strong, you ought to be strong". From that very moment, I pulled myself together and started changing my plans.

If you still remember in my previous post, I mentioned about 'the abandoned 4life brochure'. This moment was when I regret my action the most. Being me, I didn't want to waste my time regretting on things that couldn't turn back. On my way to the office, I asked my younger sister to contact her 4Life upline (his name is Zizan) and tell him to meet me at my office.

After meeting Zizan (+ Qaiyum), I bought few bottles of 4Life Transfer Factor Plus (TF Plus) and 4Life Tranfer Factor Advance (TF Adv). TF Plus is for hubby and TF Adv is for Irfan & Syasya (and also myself). I was hoping TF Plus could help to kick out cancer cells from hubby's body and TF Adv could help to boost up my kids immune system.

**I'm not going to explain here why I decided to get hubby TF Plus. Certain people might think I'm trying to promote products here. You can google about 4Life Transfer Factor and cancer on your own :-)** 


[31st Jan 2013]
For the very first time, I accompanied hubby for his oncologist appointment. We brought with us CT scan images and report.

Dr Nik Muhd Aslan, hubby's oncologist said, "OK, then we will plan for your chemotherapy. Can you start on next Wednesday, 06th Feb?" That was fast, wasn't it? I asked about alternative treatment @ surgery. Dr Aslan said surgery would be complicated due to the size of the tumor (the biggest one) and also multiple spots. We agreed with Dr Aslan's suggestion.

One minor issue (or maybe it's major); there were not many MFH patients being treated at PPUKM (or maybe hubby is the only one?). Dr Aslan couldn't give us details of the treatment until he discussed it with other specialists. There are several drugs can be used for MFH, and they have find one that is the most suitable for my husband.

[01st Feb 2013]
We first shared with families and friends about hubby's latest condition. Alhamdulillah, prayers and unconditional supports were given by everybody since the beginning.

Few actually shared alternative treatments for cancer; including sabah snake grass (SSG). I was really interested in SSG and straightaway looked for it.

[02nd Feb 2013]
We went back to hubby's hometown. We broke the news to his family. Mum was shocked and afraid. We convinced her to stay strong and insyaAllah together we will fight the big-C. Although it was not easy, we managed to stay calm and not to over think about the future.

[03rd Feb 2013]
On the way back to Shah Alam, we stopped by at YPL Herbal Farm, Negeri Sembilan to get supply of sabah snake grass.

**Again, I'm not going to explain in details about SSG. Maybe we will have dedicated post about it sometimes later**

OK.. enough flashback for now. So little information with such a long story, huh? Let's summarize the important points..

What are the signs? Please pay attention of the following symptoms, especially if you are a cancer patient:
  • Always feel sick @ feverish (on and off)
  • Have cough for long time
  • Chest pain while coughing
  • Back pain while coughing
  • Cough with blood
  • Loss of weight
  • Losing your appetite
What were among our first actions:
  • Straight away put hubby on supplement (4Life TF Plus) to boost up his immune system
  • Get supply of 'air zamzam' (holy water from Mecca)
  • Stay calm, positive and strong
That's it for now. Till our next post.. take care!!!
 
Cheers,
Intan & Naim
Shah Alam
27-Nov-2013

Tuesday 26 November 2013

Medical reports from the past 2 years...

Dear all,

In this post, we are sharing few reports for your reference. Most of the terms are actually aliens to us; except to doctors of course. Important information from each picture are all listed underneath.


Discharge summary: 08th Aug 2011

  • Biopsy date: 03rd Aug 2011
  • Discharged date: 08th Aug 2011
  • Tumor size: 8.4cm x 5.9cm x 6.4cm **from MRI done on 30th Jul 2011.

 Biopsy result: 09th Aug 2011

  • Biopsy date: 03rd Aug 2011
  • Diagnosis: "malignant tumor" and "probably pleomorphic MFH"
  • Malignant tumor: A tumor that is malignant and tends to spread to other parts of the body
  • Malignancy: The tendency of a medical condition, especially tumors, to become progressively worse and to potentially result in death
  • Pleomorphism: In microbiology, is the ability of some bacteria to alter their shape or size in response to environmental conditions
  • MFH: malignant fibrous histiocytoma


Discharged summary: 19th Aug 2011

  •  Operation date: 16th Aug 2011
  •  Discharged date: 19th Aug 2011


  • Actual tumor size: 10cm x 7cm x 6.5cm
  • Removed margin: 14.5cm x 12cm x 9.5cm
  • Final finding: Malignant fibrous histiocytoma (MFH), pleomorphic type
  • Grade: 3 (Poorly differentiated - high grade). The cells and tissue of Grade 3 and Grade 4 tumors do not look like normal cells and tissue. Grade 3 and Grade 4 tumors tend to grow rapidly and spread faster than tumors with a lower grade.
  • Stage: **we didn't know**
  • What were in our head and our initial actions?
    • OK, it's cancer. It's a type of sarcoma.
    • The tumor was removed, insyaAllah (if Allah permits) there would be no recurrence and would not spread to other spots.
    • Hubby since then is banned from taking red meat, seafood and milk.
    • Hubby started taking apricot seed and fresh sour-soap juice.
    • We did not care about the stage. For us, regardless of the stage, if aggressive treatments were needed, then we would go for it.
  • What were MY mistakes? 
    • I DID NOT properly digest the final lab report.
    • I MISSED/OVERLOOKED on the grading information. ** I got to know hubby's initial grade while writing this post :'( **
    • I SELDOM asked any questions to doctors.
    • I only knew MFH as malignant fibrous histiocytoma. I knew that it was soft tissue cancer; but didn't really look into the details. 
    • We relied 100% on doctors' advice and plans. Hubby went for regular check ups with orthopedic surgeon and oncologist. And hubby did all scans (MRI/CT/bones) scheduled by his doctors.

Discharged summary: 08th Mar 2012

  • Biopsy date: 07th Mar 2012
  • Finding: normal liquid **I have yet to search for the lab report**
Lessons learnt:
  1. Grading is MORE IMPORTANT than the stage. The grade will actually tell you how aggressive the cancer cells are.
  2. Read, go through and DIGEST all reports (lab reports, discharged summary, refer letters, xrays/scans instructions).
  3. Keep on asking questions (A LOT) to doctors. DO NOT BE AFRAID.
  4. Keep on looking/googling/searching for latest modern treatments as alternative for typical conservative treatments.
  5. Be more observant; alert on patient's health conditions (regular fever, cough, etc).
  6. Do not rely 100% on conservative treatments. Start taking supplements to boost up the immune system IMMEDIATELY. **To which, we didn't. No point of regretting our past mistakes. We look forward and started correcting what we did wrong at the beginning**
Plenty enough? Overloaded with information? Not to let everybody dozes off; let's keep this post up to here. Wait for our next posts which will be more interesting (hopefully). We will share our stories on:
  • When did we know hubby's cancer spread to his lung?
  • What was the first action?
  • How did we cope?
Till then... take care!!!
Cheers,
Intan & Naim
Shah Alam
26-Nov-2013

The first time we got to know...

Dear readers,

Among many questions that are always address to us;
  • How did you first detect about the cancer?
  • What was your reaction?
This happened almost 2 & 1/2 years back, so we would not be able to tell the exact date on how we first found out about it. We are trying our best be as accurate as we can...
[Mid May 2011]
Hubby first complained about pain behind his left thigh. I still remember at that time we were at IKEA Damansara. We thought it was just a minor muscle pain; which as most people normally do; we just ignored it thinking that it would go away after awhile.

[Early July 2011]
Somehow the pain was still there (on & off) until July'11. First week of July we went back to hubby's hometown because my late father-in-law was not well. Since one of hubby's uncle is good in alternative treatment (or most people called "cara Melayu" - Malay style), we asked his uncle to give hubby a massage. His uncle said, "Owh.. this is just muscle pain (salah urat)".

I flew to Algeria somewhere on 11th July'11. Without having me next to him, hubby went to clinic to check on his pain. At first he went to nearby GP that we normally go, the doctor said, "It's not liquid" and advised hubby to go to the nearest hospital for further check".

[29th Jul 2011]
Hubby went to see Dr Luqman, a general surgeon at DEMC Shah Alam, whom then referred him to Dr Mahamud; orthopedic and trauma surgeon. Dr Mahamud did an ultrasound and found lump on hubby's left thigh. He then instructed for MRI (magnetic resonance imaging) to be done on the very next day. Since the scan was covered by medical card, hubby was admitted at DEMC for one night.

[30th Jul 2011]
MRI result came out on the very same day the scan was done. The result showed a sign of 6cm X 8cm tumor on hubby's left thigh, which unfortunately was located near to main blood vessel. Because of the tumor size and location, Dr Mahamud told hubby that DEMC was unable to take his case (if we wanted the tumor to be removed there) due to the fact that they did not have vascular team and sufficient blood bank to cover in case of any emergency during the surgery. Dr Mahamud gave two options; either we wanted hubby to be referred to PPUM or PPUKM (formerly known as HUKM). We chose PPUKM.

[02nd Aug 2011]
It was also 2nd day of Ramadhan (Muslim's fasting month). Hubby went to PPUKM with abah to see the orthopedic team. Hubby's case was referred to orthopedic specialists, Ms Hazla & Dr Yazid. They straight-away arranged for biopsy to be done on the very next day.

[03rd Aug 2011]
Biopsy was done at PPUKM. Doctors had advised that the result would only come out one or two weeks after. If the result came out with no alarming findings, there was no need for immediate surgery to be done.

[10th Aug 2011]
Hubby received call from PPUKM a week later. The biopsy result was out stating that the tumor is a type sarcoma. I couldn't recall the full details of the result (will try to post if I managed to find the report from hubby's file). Hubby went to PPUKM and specialists instructed for immediate surgery. Since I was thousands miles away (I was in Algeria), we asked the surgery to be held until my return. I managed to catch my flight on Friday, 12th Jul 2011 and reached home on Saturday, 13th July 2011 late evening.

[14th Aug 2011]
Hubby was admitted to PPUKM on the evening. I was planning to stay with him; which then denied by the staff nurse saying that I could only stay after the surgery.
Today was the day when orthopedic specialists told hubby on the complications that might arise during the surgery and what actions would be done to save his life. Since the location of the tumor was very close to the main blood vessel, there was a chance while removing the tumor, his blood vessel might be ruptured. If this incident happened, bypass would be performed on his left leg. The ruptured blood vessel would be replaced with blood vessel taken from below the left knee.

[15th Aug 2011]
Hubby was ready for the surgery. Around noon (or was it after lunch time), we were informed that the surgery had to be postponed due to unavailability of vascular team (another urgent case).

[16th Aug 2011]
The surgery went smoothly. Since I was aware of the possible complication; first thing that I did was to check on his left leg. "Syukur Alhamdulillah", I recited when I saw only one bandage on his left thigh; means no bypass was done.
Hubby was in the hospital for another couple of days. Orthopedics, nursing lecturers, physiotherapists, etc etc were among many visitors that came to check on hubby.

[19th Aug 2011]
It was my 33rd birthday, and the best birthday present for me (and him of course); hubby was discharged from the hospital. Next follow up with orthopedic was arranged few weeks (or a month) later. Next treatment would be planned based on the biopsy result done on the resected tumor.

[In between of August until January 2012]
The lab report came out very late (maybe it was due to festive seasons). Hubby was referred to oncology based on the biopsy done on 04th Aug 2011. Oncologist then started to plan for follow up treatment @ radiotherapy (RT). At the beginning, 24 rounds of RT.

Hubby went back and forth to PPUKM for checkup with RT team, molding and etc. RT was officially started somewhere mid of Oct 2011. Hubby went to PPUKM daily from Monday to Friday for his RT. Somehow after 1-2 weeks, hubby had chicken pox. His RT was put on-hold until he recovered. After hubby completed all 24 rounds of RT, doctor added another 12 rounds to make it in total 36 rounds.

Overall, RT was OK except when hubby had his chicken pox. RT made his skin very very dry; hence making his chicken pox scars worst. Staff nurse at RT gave him some iodine and told him to apply on his left thigh. But the iodine somehow make it worse :'(.

We went to nearby GP, our doctor told us to use saline (the one that is used to clean contact lenses) instead of iodine. That's how I started my 'career' as a private nurse (errrkk.. only to clean his wound daily).

Hubby completed his RT mid of January 2012.
Aside from hospital treatments, people might wonder whether my husband took any supplements, medicine, herbs as alternative treatments.
The answer is yes. My husband took:
  • Apricot seed (not B17, only apricot seed)
  • Sour-soap juice
Hubby religiously took both of these for at least 6 months. Then only left apricot seeds; which was also being abandoned from time to time after one year.

There was one time after hubby had his surgery, one lady came and passed me 4Life Transfer Factor's brochure. Unfortunately, unwise Intan (yours truly) took things for granted. My thought was, "Certain people just want to take advantage of others' less fortunate situation and try to make money out of it". The brochure was left on the side table after hubby was discharged.

[In between of January 2012 until January 2013]
There was no treatment. Only regular checkups and scans (MRI/CT/bone) alternately. Another biopsy was done on hubby's left thigh in March 2012 after a capsule was found from latest MRI. The biopsy result came out clear; only normal liquid found.

So, that was a long history huh? We let the story stop until January 2013. We will have another post to tell how and when we found out that hubby's cancer has spread to his lung.

If you also notice, there was no where up there mentioned about sarcoma, MFH, etc etc. Why do you think nothing was mentioned? We just realized it too. You will get your answers soon.

What was hubby's first reaction? And what about me? Frankly speaking, because I was far far far away from him, hubby didn't really talk about his feeling to me. Maybe he didn't want to make me worry. I was worried sick of course!!! But since it was happening too fast. I was in Algeria and frantically in hurry to get my flight ticket changed to the earliest date. I was not allowed to over think about it until I got the plane.

Whatever it is, everything happens for a reason. Until now, we are trying our best to stay calm and face the fact that the cancer is there. We are leading our lives as before; with extra precaution of course. Being sad, depressed and frustrated (with our fate) lead us to nowhere.

OK.. it's quite a long post we have got here. We will share more information in coming posts.

Till then... take care!!!

Cheers,
Intan & Naim
Shah Alam
26-Nov-2013