No cancer agenda on your manifesto, no vote from me

I was excitedly waiting for the reading of the 2017/2018 budget as I had great interest and good reasons too. I knew that from all the advocacy work we had been involved in as cancer survivors last year 2016, the cancer agenda would be highlighted in the budget allocated to the health sector. Alas, there was absolutely nothing standing out. Out of the Kshs 30 billion allocated to the health sector, I did not see anything specific to cancer. And I don’t mean cancer as a miscellaneous somewhere in the health sector budget. I mean cancer standing out with a relatively big budget just like HIV AIDS and malaria. I have nothing against allocation to HIV AIDS and malaria but I do have a problem that I do not see in black and white that Kshs xxx has been allocated to the fight against cancer. In my view, cancer is a national disaster that needs to be top on the agenda and to be addressed by the government, politicians at all levels and by everyone in the country. We need action now.

Now that the budget has been read, I would like to turn the heat on the politicians. Unless, I see the cancer agenda clearly spelt out on parties and individual manifestos, you telling me exactly what you will do for the cancer patients, you will not get my vote. As I speak, I represent the voice of millions of Kenyan men and women who have been affected by cancer either directly or indirectly. Families that have lost their loved ones. Families whose loved ones are ailing and they are helpless- the financial burden is too much. Families that went bankrupt because of cancer treatment for their loved ones. Everyday I get requests from people who need financial help to meet the huge financial burden that they carry from cancer treatment. Everyday we are being invited for fund raising to assist other cancer survivors offset huge bills. WE ARE SAYING, WE ARE TIRED OF FUND RAISING FOR MEDICAL BILLS JUST BECAUSE THE TREATMENT IS PROHIBITIVE AND VERY LITTLE IS BEING DONE BY THE RELEVANT AUTHORITIES.

I represent men and women who travel all the way to Nairobi from hundreds of kilometers to receive the much needed cancer treatment, yet they do not need to do that. I represent the voice of men and women who closed their businesses because they ran out of capital.
“Before I got cancer, I had a thriving business. I had two pieces of land that I wanted to develop”, says Mary (not her real name). When I got sick, I had to close my business. I sold my two pieces of land to meet my medical expenses. Today I have no business; I have no place to call my own. I rely on well wishers to help me…” she says as her voice fades away in tears. Mary is the voice of a cancer survivor. Her narrative is similar to that of many other cancer patients.

We are tired of this happening. We are saying enough is enough. We need something done and done right now. I need to see details of what the government or politicians have planned for cancer. Unless I see this, am sorry I will not give you my vote. You want my vote, do something and do it now. My vote counts.
For starters:
-The cost of cancer treatment has to be brought down
-Hospitals need to be well equipped so that patients do not have to travel long distances seeking for treatment
-NHIF should FULLY cover cancer patients
With about 40,000 new cancer cases annually and 27,000 lives lost yearly as a result of cancer, you will have no one to govern in a few years’ time if nothing is done. You need a healthy population, you’ve got to do something.

We all need someone by Wanjiru Githuka

Best wishes for the year 2017, my dear readers! My sincere apologies, I took a long sabbatical. Thank you all for your love, I have been getting enquiries on what is up with me. I have been well and was looking forward to coming back in the New Year with new developments which have taken longer than I thought. But hey, am back and I will definitely keep you posted as you are part of this journey.

In one of his famous songs, Michael Bolton crooned “….lean on me when you are not strong and I will be your friend, I will help you carry on for it won’t be long till am gonna need somebody to lean on……we all need somebody to lean on….. You can call on me brother when you need a hand…. I just might have a problem that you will understand; we all need somebody to lean on….. If there is a load, you have to bear, That you can’t carry I’m right up the road, I’ll share your load, If you just call me…call me, If you need a friend….call me….”

As you hum or sing this song, for a moment just think about these words and reflect on them. It is amazing how simple they sound but how true they are. Friends are always just a phone call away. They are constantly ready and willing to help- but how little we actually acknowledge to ourselves that we need someone to help us. Sometimes we are heavily engrossed in countless problems and carrying heavy loads, yet the burden would be lessened if we shared with a good friend. A listening ear will always be useful. However, if you are highly independent like me, you would probably feel as if you are bothering people too much by involving them in your issues or in seeking their assistance.

When I discovered I had a lump in my breast, at first I told no one about it and just went to the hospital alone. As they did the various tests including biopsies, I was still alone. My first few visits to the doctor I went alone. One may wonder whether I have no friends or family; but I do and supportive ones at that. My family is always faulting me for being overly independent and just wanting to do things on my own. During my journey, God gave me the strength and I went through many things on my own. Nonetheless, today when I think about it, I totally accept that was the wrong thing to do- not seeking support from my loved ones when I needed them most. I would not encourage someone to go through the cancer journey, or any other for that matter on their own.

From the onset, identify a care giver. It could be your spouse, one of your parents, child, sibling or a friend. This person will help you walk through the journey. As the doctor gives you results from the biopsy confirming that you have cancer, you need someone to be there to hold your hand, give you a comforting hug and a shoulder to cry on. After surgery, the biopsy results are further validated through analysis of the specimen. The results from the histology inform on the grade, stage and whether the cancer is hormonal receptive among others. Most people get into denial when the news of the positive diagnosis is communicated to them. Many of these are advised to see a counselor to help them come to terms with what is happening to them. If you are unable to cope with the news of the diagnosis please see a counselor.

Your oncology will discuss with you the results of the histology and other tests. As the doctor talks, you will hear little else of what he is telling you. It will be like an insect buzzing in your ears. At this stage it is critical to have someone with you. They will be able to capture most of what the doctor is saying and help in asking questions. You could also go through the results in advance so that you may know the kind of questions to ask, for example: what do the results mean, what are the implications, what are the side effects of the proposed treatment plan among others. I would advise you to carry a notebook with you during these hospital visits. Have your questions already written down because if you rely on your memory, sometimes you may forget to ask some. Ensure that you list down the treatment plan in the notebook. It comes in handy even many years down the line. I still refer to my notebook up to date as a follow up to my treatment plan. I am able to anticipate what is coming next, when and then bring it up for discussion during my appointments with the doctor. In this way am always on top of things. Even after you start treatment, please use the same notebook to write down when you undergo major tests and or start on new medication. This also helps you keep track on when a procedure is due.

When going to the hospital for your appointments, seek the company of your caregiver. For instance during chemotherapy, the caregiver will help run around for you. They will follow up on your drugs, your bills and anything else that you may need. This is because you will be tired, sleepy and unable to efficiently do many things for yourself. The care giver will also talk to you those moments when you are not sleeping. I was very blessed that I had my wonderful niece as my caregiver. (God bless her dear heart). She always ran around for me and constantly accompanied me to hospital during chemotherapy. I remember sometimes we could see patients who were all alone. My niece would go out of her way to assist them if they needed something to be done for them as they lay in bed receiving treatment.

If you need other errands to be done for you, reach out to your friends and family. With someone by your side, it makes the journey so much easier. I am still learning to ask, though it is not easy for me. If you are like me and you like doing your thing, I encourage you to learn to ask for help.

Join support groups too. Most areas and hospitals in the country have support groups. I belong to several of these. I am also a member and currently the chairperson of the Cancer Survivors Association of Kenya. This is a national umbrella membership body of all cancer survivors in the country. We have come up with 16 clusters spread across the country based on the geographical localities of our members. One of the things that we are doing as an association is to provide psycho- socio support to our members. You are never alone since there is always someone to encourage you and to walk with you. We also have a WhatsApp platform with all registered members where we share information and encourage each other. Cancer survivors who are experiencing challenges seek advice from the rest of the members. Members empathize with each other. Sharing experiences with people who have walked a similar journey gives you so much strength.
Always remember that a support system is critical on this journey.

Always have a close relationship with God. You will never feel alone.

Note: If you know someone who could benefit from a support group, please get in touch with me and I will link them to one of our clusters.

Believe me, you will get your groove back

When you are feeling unwell and go to the hospital they prescribe for you different treatment regime. Could be injection, drugs to take and even surgery depending on what the problem is. All treatments have side effects and some of it can be serious. Cancer has its own treatment which like most others has side effects too. Conventional prescription for cancer dictates that most patients have to go through – chemotherapy, surgery, radiotherapy and taking drugs. In most cases the side effects for any treatment are usually less severe in comparison to the benefits you would lose if you failed to get treatment. The effects of cancer treatment are varied and they can be serious. It takes quite a while for the body to go back to “normal”.

Imagine for a moment a city that has just gone through serious war. Visualize a town that has been struck down by bombs and rockets as they try to get rid of insurgents. While the motive may be good, the city gets destroyed. Innocent people including women and children are killed. Beautiful buildings are destroyed. There is wanton destruction everywhere. This analogy is similar to a body that has gone through cancer treatment. It is a body that has gone through a lot of pain and suffering.

While the side effects are different for everyone, allow me to give you a glimpse of just how much beating, the body has received. Your body is maimed during surgery and you are left with deep scars. Chemotherapy destroys both your good and bad cells. You may get mouth sores and bloated stomach. If you have received chemotherapy for breast cancer, all the hair on your body falls off…even your eye brows. Your nails and hands turn black, your face is blue black, and your white blood cells are at a low. The brain becomes slow and you keep forgetting things- One of the survivors I know calls it chemo brain. Radiation on the other hand literally gives you open wounds on the scar and the skin color darkens.

You also get Lymphedema which occurs even long after treatment. This is swelling that occurs in your arm and is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment. The Lymphedema is resultant from a blockage in the lymphatic system, which is part of your immune system. This blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling (mayo clinic).

You keep going to hospital and they have to keep on poking you with needles as they draw blood for different tests. Scans and X-rays become part of your life. It can be emotionally and physically draining. A friend of mine told me that she was tired of hospitals that after her treatment she would not pass near MP Shah Hospital again which is where she was receiving treatment from. This picture sounds horrific, right? Sadly that is the reality of the side effects from cancer treatment. However, I share this not because I want to paint a grim picture and scare you but to let you have an idea of what to expect and how to deal with it. Otherwise you could find yourself sinking into depression or doing unimaginable things. I also want to offer you hope and encourage you that things will go back to normal.

Before I started treatment, my doctor gave me a leaflet showing the various side effects of the different treatments that I would go through. They included some of the issues that I have mentioned above and much more. But there was also advice on what one could do to deal with challenges so as to avoid unpleasant surprises. Women love their hair, but regardless of this, one of the things that I learnt is that I should cut it. When I started treatment, I trimmed my hair short. When the chemo started taking effect after a little while, I was spared the agony of finding huge chunks of my beautiful long hair on the bed. I only got to see some few strands on the pillow and when bathing. At this point I went ahead and cut it all off. I aided the process.

Unless you want to go through the drama of seeing your hair falling off till you become completely bald, I would like to advise you to cut it. Do not be like the woman who was not aware of these effects and so when her long, beautiful silky hair fell off, she sued the hospital thinking that they had a role to play in that. I appreciated my bald head and realized it actually looked nice. Be encouraged that after treatment, your hair starts growing back. It actually gets better since it looks and feels like baby hair. Personally I have now developed a liking for short hair which I rock.

The black nails, they get back to normal too. But you could paint them. The discolored skin on the area receiving radiation and the surroundings  gets back its normal color too.  I was advised by my doctor that I should apply lotion that has Vitamin E as this would hasten the process. I did that and used Nivea Cocoa Butter. My skin went back to normal sooner than expected.

When the hand that went through surgery, gets lymphedema, go for physiotherapy. They show you exercises to drain off the fluid and to keep the hand fit. Aga Khan University Hospital normally has special physiotherapy sessions for lymphedema which are discounted. When you call to book an appointment, make sure that you tell them the physiotherapy is for lymphedema so that they can extend to you the special price. Avoid carrying heavy things with the hand that went through surgery since carrying heavy stuff also contributes to lymphedema. Avoid having a manicure on the same hand too. Exposing yourself to too much sun should also be avoided. Use sun screen as much as you can and wear hats when you have to be in the sun. You could also get a special sleeve and wear it on the hand. This sleeve encourage the flow of the lymph fluid out of your affected limb.

During chemo avoid crowded places to minimize the risks of getting opportunistic diseases. Take as much water as possible so that you pass urine and release most of the toxic materials from your body. I could take an average of 5 litres of water in a day. Try and eat a balanced diet with lots of fruits and vegetables so as to boost your immune system. All these will also make your skin glow and look better. There is always a solution to every side effect that you will go through. Take it from me, when the cancer treatment is over, you get your groove back and much more. Remember everything has side effects. It is only the degree that matters.

Take a step of courage, it could be a matter of life and death for you

It is October again, the special month dedicated to breast cancer where all and sundry are talking about it. The subject on breast cancer is hyped up by different media. The key message is screening, screening and screening. It cannot be understated.

Am an ardent believer that any month, any time is screening time and that cancer is not a taboo subject but one that should be discussed always. This is key especially now that there are many new cases of different cancers detected and reported every day worldwide. But then again am happy that a special month has been set aside to raise awareness on breast cancer and measures that need to be taken. In solidarity, I would like to join the rest of the world in stressing the importance of early screening for breast cancer.

For many women the thought of going for breast cancer screening or any other cancer for that matter, really scares them off. The fear of the unknown takes centre stage. I have talked to people who tell me that they do not want to know their status. They are scared and believe that “what they do not know will not hurt them”. On the contrary I stand on the principle that “people perish for lack of knowledge”. I would like to encourage you to go for it, it could mean a matter of life and death for you.

If you have never gone for breast cancer screening any other time, please take a step of courage this month and go. It is important to note that even men get breast cancer. Once you go for the breast cancer screening it can lead to early detection which means you are able to get treatment early enough. The good news is that if detected early, breast cancer is curable. This should be one good reason if no other that should encourage you to go for it. Ladies while you are it, ensure that you have a pap smear done.

Start with a self- breast examination which is recommended for any lady who is twenty (20) years and above. Most women do not know how to do it while some feel weird touching themselves. There is nothing to feel weird about. There is nothing peculiar about standing in front of a mirror and examining your breasts. Your partner could also play a critical role in feeling for any lumps.

It is important that you check your breasts monthly to ensure that they are healthy. Examining yourself regularly indicates that any changes can be noted early enough. If you are over forty (40) years, please go for a mammogram. I advocate for all to go for breast cancer screening regardless of whether there is a history of cancer in their family or not.

It is recommended that you examine yourself every month at the same time as the breasts change in shape and feel differently during the monthly cycle. For those that have reached menopause, the first day of each calendar month would be a good time to carry out the examination while for those that have not, following a period is a good time.

The first time that you do it, note the normal size and shape of the breast, the feel of them and the position of the nipples (Aga Khan University Hospital, Breast Centre, year unknown).

Some of the warning signs that you need to look out for include:

1) Unusual difference in size or shape of the breast

2) Alteration in the position of any nipple

3) Dimpling of the skin surface

4) Unusual prominence of the veins over either breast

5) Unusual discharge from the nipple

6) Unusual discrete lump or nodule in any part of either breast
(Adapted from the Aga Khan University Hospital Breast Center, year unknown).

Once you notice any of the above signs, please see a doctor. Early detection is critical in the fight against cancer.

Note: Please visit any major hospital for breast cancer screening. During the month of October some of the medical facilities offer free and or subsidized screening services. Agha Khan University Hospital usually does this. Check out the media for those that are offering free/subsidized services.

What has a “boobie” got to do with it?

A“boobie “(breast) is an important part of the female anatomy. In addition to other functions in the body, “boobies” make women feel feminine. For most people, the thought of losing any part of their body is scary. Mixed feelings go through their heads. You wonder how you will look without it, you think of the scars that will be on your body and wonder whether you will still be attractive, you imagine that you will not be able to perform some of your roles well. For a woman, the thought of losing a breast leaves many with fear. However, having a “boobie” or not does not define who you are; it should not. It does not interfere with your brain, nor your work. It should not interfere with your relationships whatsoever.

Most women who have been diagnosed with breast cancer usually go through mastectomy which could either be single or double- where they remove both breasts. When I went to see the surgeon after the biopsy results, he told me, “am sorry we have to remove your breast. We cannot save it”. I remember I told him, “Doctor, even if it means removing both of them, I am okay with it. If it will make me well again, please go ahead with it”. In my mind, I did not focus on my physical state – how I would look without it, only my treatment. I was ready for anything that would make me well again. If removing my breast was one of the ways, then so be it.

After the scars healed I got a breast prosthesis. At the time, the only place that you could get them was at Woolworths, Nairobi, mainly the Sarit Centre branch. They were going between Kshs 5,000 and Kshs 20,000 each (USD 50-200) depending on the type. Right now am working on getting prosthesis available and at an affordable price. (I will be posting this later). The prosthesis is simply put inside a special bra with some sort of pocket. When you wear one, no one will notice the difference unless you tell them. You will be able to dress in anything that you want, momentarily forgetting that you are lopsided.

As a person it does not bother me that I am lopsided. It should not bother you either. I would like to encourage that woman who is due for a mastectomy or who has just had one. It is okay my sister. Take it positively as the first step towards your recovery. The fact that you are lopsided or both your breasts were removed does not mean that you are less of a human being. Neither does it mean that you have lost your beauty. You are a beautiful person; fearfully and wonderfully made. The fact that your breasts were removed does not mean that you are less attractive. Personally I always feel good about myself. Losing a breast or two does not make you less of a woman. You are still 100% woman. Losing your breast does not make you any less intelligent. Your mental faculties are all intact, they are working just fine. You are as sharp as ever, possibly even better because you now look at things from a different perspective. You are equal to any task.

I encourage you to get a prosthesis. Granted most women would feel uncomfortable walking into a shop and telling a sales girl of their condition and that they need a prosthesis. They are self -conscious of their condition and are uncomfortable having their measurements taken. This is normal. Take it like you are shopping for a bra.

You could also have reconstructive surgery. The American Cancer Society defines breast reconstruction as a type of surgery that rebuilds the breast mound to match the size, shape and look of the other breast. If you are contemplating having reconstruction surgery, it is advisable to discuss with your doctor/surgeon before the tumor or breast is removed as it helps them plan the best treatment for you. Personally I did not have it. The treatment was too expensive for me to even contemplate anything like that.

Losing a part of the body can happen to anyone either through accidents or illnesses. You could lose a leg, eye, arm, appendix, your hearing or like me your breast. Husbands/ boyfriends do not desert your partners just because their breasts were removed. Love and accept them for who they are and not for what they have/ do not have. They are still the same beautiful people. Remember the vows you made and stick to them-“for better for worse, in sickness and in health”. Your partner does not need emotional stress from you through your desertion in addition to what they are going through. This is the time that you should support them more. Look at the scars lovingly. They should make you admire them more.

The scars typify the pain that this woman has gone through. The scars represent the strength of this woman who through it all has remained resilient. The scars signify the fighting spirit of this woman. The scars remind you that this is no ordinary woman, she is a special person.

My sister, the loss of a breast should not change who you are. The loss of a breast has nothing to do with your intelligence. The loss of a “boobie” has nothing to do with love. With or without a “boobie”, live your life fully and maximize on every moment.

It is not the end of the world

Iam a cancer victor. Iam a cancer care crusader. I am passionate about cancer and my message is on hope. In my journey I have learnt many valuable lessons which I hope will help other people overcome and emerge victorious like I and many others have done.

As the famous adage goes “no one is permanent in this world”. No one will live forever.  One day we will all leave this world. We just don’t know when. Sounds harsh, right? But that’s the harsh reality.

After cancer diagnosis, one is devastated. You imagine that you will die, you will leave your children all alone. You imagine the pain it will cause your loved ones.  In May 2014, I went through such emotions.I was devastated when I got the biopsy results. But I made a deliberate choice that I was going to fight, and fight I did. The thought of my children gave me a purpose to live and to overcome. Support from my family and friends made things bearable. My faith in God gave me hope and courage. Two and a half years down the line am still going strong.

In my journey I have  come to appreciate that even those who are seemingly healthy, don’t also know  when they will die . No one knows the hour, the minute, the second-no one knows the time they will leave this world. There are many causes of death. Recently,a friend of mine died through a motorcycle accident. Another one slipped in his bathroom while taking a shower, hit his head and died. The list is endless. This is a common phenomenon. Everyday, people are losing their lives through different causes. Of course cancer is one of them but there are many other sudden deaths caused by accidents. Death can occur anytime, anywhere .

However when faced with cancer, acquire a fighting spirit. Nay, get a tough skin. Have a purpose to live. Focus on your children, focus on your loved ones and on those things that matter to you. Have a reason to live. Have a purpose to go on.

Cancer diagnosis scary as it may seem, is not a death sentence. It is not the end of the world. Infact take it as a barrier in your life, which you could break through or walk around. So just take a pause, deal with the hurdles then fight on. GO for treatment which by the way is available locally, have a positive attitude, eat well and exercise . Don’t fret. Within no time, you will have your life back. You will live many more years. There is life after cancer diagnosis.