A little update and a helpful list

Hello Friends J

I thought I’d do a quick update about where I am and what’s going on at the moment and then share what I think is a very helpful list of tips for those of you who have friends or family who are battling cancer. I’ve seen a few examples of these lists floating around the internet but none of them have been spot on for me so I decided to make my own. I hope that it will be helpful to some of you and that you are able to understand things from the patient’s side!

Update

Since I returned from Pretoria I have been on leave from all this medical and painful- officially the longest period since last year March that I have not been poked or prodded on a daily basis, and it is GOOD! I now have to recover from my harvesting and avoid germs and bacteria as much as possible. This means constantly washing my hands, not touching my face, and avoiding sick people like the plague. I’m also not allowed to eat any meat, eggs or dairy at restaurants and when I cook, I have to make sure everything is clean and cooked to death. No rare steak or unwashed veggies in our kitchen! Other than that I am living a normal life- it truly is absolute bliss! I have pulled on my Bride pants and am planning up a storm, lists are running my life and I am having wedding nightmares at night… 12 days to go until I have my very own HUSBAND! I won’t be having any treatment until after our honeymoon so I am really enjoying this time off and trying my best to make the most of it. The chemo fatigue is still holding me back a bit but for most of the day I am managing to be active and get things done!

 

List of things a cancer patient wants you to know

1.       My family need friends

There is a saying that “when one family member gets cancer, the whole family gets cancer”. Please call my family members and check if they are ok, the emotional strain is huge and often a phonecall or message is needed just to get them through the day. Often grocery shopping or cooking is impossible for me because of the chemo side effects, but my family still need to eat. I have been so blessed with family and friends who have given us meals or invited Gav for supper when I haven’t been here, we are beyond grateful for this (you all know who you are- we are blessed to have you).  

 

2.       Please don’t ask me how I am

Rather tell me you are thinking of me or send a positive, encouraging message to me! Please don’t be angry if I don’t reply, I might be feeling absolutely terrible and unable to reply but I really do appreciate your thoughts and messages. Sometimes a message saying “I'm thinking of you, no need to reply” is the greatest message you can send. Let’s gossip and chat about things happening in your life rather than putting all the focus on my disease. I want compassion, not pity.

3.       I want you to be healthy

I would never wish this disease on anyone and would like you to reduce your risk as much as possible. Please quit smoking, excessive drinking, do some exercise and eat healthily- try and improve your chances of not getting this disease as much as possible!

 

Another very important part of this is financial wellness. Do you have adequate medical aid or a hospital plan to cover you if you get sick? Do you have dreaded disease cover or disability cover that will provide you with a salary even if you are unable to work? These are questions that most people don't consider important- especially if you are in your twenties and "healthy"!

 

I have always had a good hospital plan with Discovery and I have been incredibly lucky that they have an Oncology Benefit Programme which covers a huge portion of my medical expenses. There is no doubt about it- Cancer is expensive! I can't emphasise this enough. There are always shortfalls and money has to come from somewhere. In the past year, Discovery has paid over R400 000 towards my treatment, scans, tests and medicines. This is excluding the R380 000 for my stem cell harvest.

 

I have also been very fortunate to discover that I had a very good dreaded disease policy through my work , I have received a monthly salary even though I haven't been able to work- unfortunately savings don't last forever!

 

If there is one thing you do this year- please look into getting some sort of cover. It has eased a huge amount of stress and helped to cover so many unplanned expenses. I have the most incredible broker who has really helped me with all of my claims and things, I am so grateful for all of your help Mike! If you want to get some more in formation or a quote, Mike is brilliant and will help you from beginning to end. Contact him via email on mike@growingwealth.co.za

 

4.       I may not look the same but I’m still me

I may have thin hair, no hair, lots of hair, red skin, swollen feet, lose weight or put on weight, but I am still me. Please treat me the same and not like a patient - laughing won’t hurt me and neither will a hug, I need as much normality as possible. On the other hand I am always told that I look great, most of the time I feel absolutely terrible and I am covering it up with a smile and bright eyes.

 

5.       Pampering

Unfortunately, the chemo side effects make you feel truly unattractive and this is so emotionally draining, you feel like people are staring at your bruises, your scars, and your thin hair. Spoil your loved one with a pedicure or manicure, a massage or facial might be too painful as the skin is very sensitive while having chemo or radiation treatment.

 

6.       Spoil me

I have received the most thoughtful little gifts from friends and family when times have been tough and I can honestly say they have pulled me through some dark days. Some of these include: A new pair of pajamas, bubblebath, magazines, and flowers, a special blanket, silk pillowcases (to help with the hairloss process) and headbands.

 

 

Special spoilings from my precious Sister

 

 

7.       I’m trying to stay strong but sometimes I break down

Please let me cry and feel sorry for myself, I’m grieving in a way and trying to deal with the flood of emotions. Some days I will be angry, some days I’ll be happy, some days I’ll be sad. Please forgive me if I lash out at you or treat you badly, it’s not on purpose.

 

8.       Every cancer (and patient) is different

I know you are trying to help me when you offer advice about side effects, treatment or doctors but unless you have been through what I am going through, I would prefer not to hear the advice. This may seem exceptionally harsh but often the advice can be detrimental because you go into a situation expecting one thing and the complete opposite occurs. The best advice comes from your Doctor or Nurse.

 

9.       I don’t want to be labelled as a hero, I’m just doing what I have to do

Unfortunately the other choice is death and I won’t go down without fighting! The thought doesn’t even cross my mind. I will beat this, I will stand tall and take each day as it comes. I will get back up each time I am knocked down even if I need a hand to pull me up.

 

 

10.   Get involved in the cause

 

As someone who will be receiving a bone marrow transplant this April, I am deeply moved by my friends and family who have signed up to become bone marrow donors (a big shout out to Leigh and Brett – true heroes!) or taken the time to learn about my disease. Join the bone marrow registry, give blood, organise a fundraiser (Ashton and I will be climbing Kilimanjaro next year) or donate a sum (no matter how small) to cancer research or an organisation of your choice. It’s a gesture acknowledging that cancer affect communities of strangers as well as people you know.

 

Here is my choice - https://www.givengain.com/activist/113273/

 Curtis has beaten cancer twice and is such an inspiration to me, let's try and help him to reach his goal :)

 

Sadly I wont have time to blog for the next three weeks as our wedding has officially taken over my life but I will be back online when I get back from honeymoon :)

Be safe friends!

 

 

                                                                         xxx