Eid in Sheffield..and unconditional love

* Honoured I am to have my mom being the first invited guest to share an entry in my blog, Not the primrose path.

It is an honour to be invited to write in this blog...but I'm new at this, so please bear with me if I sound biased..I have no other excuse other than that I'm Afzal's Mom:

It wasn't an easy decision to make, but when I decided to spend Eid in Sheffield, it was because I can't bear the thought of Afzal spending Eid alone, tired and nauseaus after his second round of Eshap chemo. But eventhough the chemo was postponed,I still went ahead and took the trip....It turned out to be quite a celebration, one that brought me up close n personal with people who have touched Afzal's life in so many ways ever since Sheffield became his second home in 2003.

When he met me at the Sheffield train station at 11.20pm, 18th September, 2009, he looked tired,was coughing occasionally and complained of hair loss happening faster than usual. He also seems to have lost a bit of weight and my heart breaks looking at his tired smile welcoming me.

The next morning I started the task of preparing for Eid just like I would have done back home, just so I can bring a bit of cheer into Afzal's Eid celebration...He was just as excited, helping out in the kitchen and making open house plans, naming postgrads and undergrads he would be inviting. This year's Eid was made extra special with the presence of Pak Tam n family.

Actually we only went to one open house - that of Ezarad, a third year medical student, whose father, Tan Sri Elias Omar, helped clear a few things with JPA so that Afzal could remain in Sheffield to undergo treatment for his Hodgkins Lymphoma.

Tan Sri, a humble and charming man, told Afzal to go ahead and seek treatment in the UK and to just concentrate on getting well. He proudly introduced Afzal as DR.MAS AFZAL to his other guests and I couldn't help but admire his sincererity in helping my son. I have always also admired him as a man of principle, back during his PTD Officer serving days. And being a PTD Officer myself, made this meeting a lot more meaningful.



Us with Tan Sri Elyas' family


And then there were postgrads and wives of postgrads who testified as to just how helpful Afzal has been to simply everyone throughout his stay in Sheffield, that everyone was crushed when they learned of his predicament. They say he has such an amicable personality, its not difficult to like him. He helps other students, both undergrads and postgrads get settled in, put them up temporarily in his own rented house if needed, and is always very much involved in activities that matters.

What amazed me was that not only was he known throughout the Malaysian community but also among British citizens and other foreign students. One parent of a third year Yemeni student called him "an asset". I do not know exactly what he meant but nevertheless my heart was bursting with pride.

Occasionally throughout that 20th September, I asked Afzal how he was feeling and he said..."I'm running on reserved battery "..meaning, actually he is still feeling tired, but the wonderful feeling of Eid, surrounded by family n friends has made him forget the tiredness, nausea and hair loss....he even coughs less!

Alas, I am so lucky to have all these strangers looking after my son unconditionally ..thank you all and I leave it up to Allah to reward your kind deeds...Amin. This year's Eid in Sheffield is one special celebration I shared with Afzal and remain in a special in my heart......


KAMI.

Yet again I stumble...

In the Name of Allah, Most Gracious Most Merciful.

Assalamualaikum wbt and Hi everyone.

I was back in the anonymity again for the few days after I posted my last entry. As most of you might have figured out by now, my body seemed to have grown fond of ward P3. I was back in it again just as quick as I left it.

It was Friday evening and I was joining my housemates for the breaking of fast when I started to feel very shiverish. The temperature just rose gradually from there on, that by the time I put a thermometer under my tongue later that night, my body’s temperature has reached a high of 39.5 degrees. As 2 tablets of paracetamol didn’t do the trick, I thought it was probably wise ringing the ward and they agreed I should come to P3 as soon as possible.

Post-chemotherapy patients are immuno-supressed, ie they have weaker immune system than a normal person and thus making them more susceptible to catching infections, even from bugs that normally do not cause much harm. One of the classical signs of infection is a raise body temperature, and if not treated immediately in these group of patients, can prove to be fatal. Which is why my consultant has engrained this saying to me over and over again; “In case you have a temperature Mas, don’t wait. Ring us.” And I did just that.

The night I was readmitted, my vital signs were rather worrying. My pulses were racing so fast even I couldn’t keep pace with, my body was just boiling hot and my blood pressure plummeted to very low levels. At one point I even thought to myself, hey, is my body shutting down?? Except that I wasn’t feeling too unwell, though I reckon similar vital signs in a frail 70-year old person would probably make that person feel very poorly. For the first time since I started chemotherapy back in December, I have ventured into an unfamiliar territory. One I’ve never experienced thus far.

I was given 2 bags of gelofusine on top of my normal saline to help with the crashing blood pressure. I also had plenty of intravenous Vancomycin and Tazocin (both are antibiotics) as cover whilst they figure out what causes the infection. After 24 hours of close monitoring, alhamdulillah, my body started showing positive response and I was almost back to my normal self. In fact, I was really progressing well that the doctor gave the green light for me to return home that Wednesday afternoon. That good news was certainly what I was hoping for, as at least it will give me more time at home and prepare for my next ESHAP chemotherapy the coming Monday. But Allah certainly had different plans for me.

Remember “not the primrose path”?

Just as I was about to leave the ward for home, the nurse came to my room and broke the bad news. They have just received the results of my blood culture (which was taken during admission), and they have found a bug called Nocardia as the main culprit of my infection. As a result, I had to be kept for longer in the hospital to allow doctors to treat the bacteria. Gosh. I was that close to going home. It’s just not meant to be, is it?

Nocardia is a bacteria I’m not used to hearing. Not to say that I’m a bacteriologist, but having read my Infectious Disease textbook over and over again back during my medical-student times, I’ve never once came across it. Nocardia can be very difficult to treat, and it can pose detrimental effect on the central nervous system as well as the lungs. I was started on an antibiotic called Septrin, which is expected to deal with the bacteria and they have also arranged for a CT scan of the head and body just as a precautionary step. I’ve been coughing a bit more since yesterday, which my Consultant felt could possible be down to the bacteria. But his further management plans were one that rather shook me a bit.

Due to fear that the bacteria may pose effect on the Hickmann line and thus affect future procedures especially when it comes to harvesting my stem cells, my Consultant feels that it needs removing sometime soon. Yes, you heard me well. Removing the Hickmann Line and putting a new one.

As a consequence of the infection, my next chemotherapy which is due to commence this Monday has also been postponed to at least another week, to allow time for recovery from this infection, to remove the current Hickmann line and putting in a new one. I’ve also being told that I need to be kept in the hospital over the weekend to further monitor the infection. What I initially thought was just gonna be a few days of hospital stay has now turned into yet another week or longer visit.

Mom, you’ll always be my special friend

Verily, in every hardship there is relief. Although it’s been yet another miserable week, at least I look forward to next week. Several very important people in my life are coming all the way to UK and I don’t think it could have come at a better time. Mama has sacrificed yet again her money and time in Malaysia to spend Eid with this chemoboy. Just for the sake of this chemoboy. I don’t know just where does she get this strength to perservere travelling for 12 hours on quite a regular basis to come down to Sheffield. Mothers are truly remarkable creation of Allah, a miracle that Allah has blessed onto humankind.





It’s therefore sad to hear that a mother can look after so many of her children, yet so many children failed to look after their one and only mom when she needs the tender love and care. I pray to Allah that He gives me the quality of Uwais-al-Qarni, the noble person who lived during the time of the beloved Prophet Muhammad who is promised a high position in Jannah solely for his undying love and care for his mother.

And oh, by the way, the other important person to arrive in UK soon is PakTam and his family, as MakTam is due to start her one-year study in London. Pak Tam has always been an admirable person I look up to, he just cares for us as lovingly as he cares for Ainul. I’ve always seen Pak Tam as more than just an uncle to me, his fatherly qualities are so reminiscent of Mom’s motherly. And to have him around in UK will without a doubt provide me with the strength I need to keep me going in this uphill battle of mine.





We’re now in the last 10 days of Ramadhan. How time flies. It’s a shame I’m stucked here in the hospital knowing the mosque is literally 5 minutes away. Macam nak lari je pergi masjid, boleh tak?!!

Ramadhan Kareem everyone.

Room 3, Ward P3.
Royal Hallamshire Hospital.

ESHAP - My new nemesis

Assalamualaikum wbt and Hi everyone,

I’d firstly like to apologize to a lot of people who had been trying to get in touch with me over the past one week but failing so. It was certainly never my intention not to reply messages or answer phone calls but rather I’d just been literally knocked down by the sheer effect of the ESHAP chemotherapy. My last 5 days had just been what I can simply summarize as dreadful, to say the least.

Tired.

Nausea.

Add pain to the equation and what you get is basically NIGHTMARE.

Ever since I had the recent bone marrow biopsy, I've been getting regular nagging pains around the area of my right upper leg, most of which occurring at night. My Consultant played that down to an expected effects from tissue regeneration from the biopsy area, one that should calm down in a short matter of time. I don't think it's anything serious to go by (osteomyelitis is probably what most of you and myself will be worrying about), but I do wonder how long more will it take for it to be gone. The pain was at its worse three days ago when my housemates had to ring the hospital for assistance. I wasn't admitted for it, but M had to rush to the hospital at 1030 at night to fetch some tramadol (strong painkiller) to help with my pain.

It was a long, long night. One I wish I'd never have to come across again.



Osteomyelitis is infection in the bones. Often, the original site of infection is elsewhere in the body, and spreads to the bone by the blood. Bacteria or fungus may sometimes be responsible for osteomyelitis.


My longest stay in hospital yet


Never have I been in a hospital for this long in my life, as I was in since Monday morning and was only discharged on Saturday evening. The big delay is in part due to one of the chemotherapy, ie the Cisplatin, where a full 1 litre bag of it usually takes 20++ hours of continuous infusion. And there is usually a delay of at least a few hours before commencing on the next bag of Cisplatin. I basically need to have 4 bags of Cisplatin over the course of a few days, on top of the other drugs including Etoposide and Methylprednisolone which don't take long to be infused. They then give me a full bag of Cytarabine right at the very end of treatment for about 2 hours.

Apart from the ward rounds, meal times and vital signs monitoring (blood pressure, oxygen saturations, pulse, body temperature) performed by the nurses at regular intervals, my day routine in the ward was interspersed with frequent visits to the loo to pass water. By frequent I mean almost every half an hour at some point. Not because my kidneys are failing, but because they have also infused me with plenty of normal saline to hydrate my body, making sure it's not starved off adequate fluids. So you can imagine how difficult it was to even get a good few hours of sleep at night when every now and again you just have to drag yourself out of bed to make it on time to the loo.

It wasn't all terrible if I'm being honest. I am thankful to Allah that I was still perfectly able to perform my obligatory prayers within their stipulated times whilst in the ward. I've made some spaces by the side of my bed as my praying area, and the nursing staff were being thoughtful by making sure that I was not interrupted whenever the time was due for my prayers. I remembered during one of the morning when one of the nurses came to check my vital signs, she asked:

" Have you done your early morning prayers today, Mas?"

I smiled and replied, " I have indeed. At 5 o'clock this morning. Thanks for asking."

She took the blood pressure cuff off my arm and responded whilst filling in my observation charts, " No worries love, just making sure that you've not been a bad boy and missed your prayers, that's all."

We both smiled.





Just when you think you're the unluckiest


I know a lot of people dread staying in the hospital for any longer than a day, what more for one whole week. Lying on a bed with sick people all around you and with nothing much to do.

I wont go as far as saying that I love staying long in the hospital, but I've always been able to learn plenty about life whenever I'm in the wards, be it now or when I was in the O2 Day Ward Unit previously. Listening to other people's account of their diseases can only turn you into a more humble and gracious person in life.

Just when you think that no one can be as unlucky as you are in life, just think again.

James (not his real name) is a gentleman in his late 20s whose bed was next to mine in the ward. He has been diagnosed with Haemophilia since birth, and has had episodes of bleeding into his joints all his life.

He was in the hospital this time around for a left knee replacement, as the bloods pooling into his knee has destroyed the joints. He has had his right knee replaced for a similar problem a few years back. If I am fighting against feeling sick and lethargic, he was battling against pain day and night, surviving only with high doses of oxynorm liquid (a type of morphine, which all of us would know is a strong painkiller). He has never been able to play sports all his life for fear of internal bleeding, and needs to inject clotting factors into his body regularly for years now. Yet, his optimism and strong belief that nothing should stop us from aspiring big in life has without a doubt inspired me. I wish him all the best in life.

Quoting from the respected scholar Tariq Ramadan, suffering does not mean that we have made mistakes, nor does it reveal any tragic dimension of existence: it is, more simply, an initiation into humility, understood as a necessary stage in the experience of faith.

As Jep rightly says in his blog, Life is a long lesson in humility.

Take care everyone, and do remember me in your prayers.


P/s: Thank you so much to everyone who has been visiting me for the last few days, be it from the Malaysian community as well as my dearest friends from the mosque. May Allah reward each and every one of you, for fulfilling one of the responsibilities that is due from you. Barakallahu fik.