Monthly Archives: November 2015

Immunity Issues

Many people think that with cancer you only have immunity issues when you are going through chemotherapy or radiotherapy etc. but many of us are on medications that affect our immunity all the time, with this is the fact that we are recovering from treatment.

It is a hard world when you have to explain years later that, you still can’t pat a dog. It’s hard when plants you have had around you for years suddenly affect you like hay fever. I tend to get rashes from plants perfumes and some foods. Or I get ill from foods. These are things that have never bothered me, but since chemo and changes in medication I am susceptible to them. I have to take off my crucifix on a regular basis as I get rashes around my neck from it. I have changed chains many times but still, if I sweat too much or if I am rashing from something else, I have to take it off and take out the earrings. I still have to be careful on what I use to clean the house, the dishes, clothes and me. One bad choice means I am covered in a rash.

I still get these weird sores, that are just an infection of the skin. They can be painful. But if you have never had these problems you don’t understand. If you have had a cancer then it was treated and you are fine, you don’t understand. But there are many of us out there who are still wearing the damage of the cancer, medications and treatments on our bodies. We suffer in silence or find excuses to not pat pets, or avoid wearing or going to things, because you just get tired of having to explain over and over again.

Not everyone has a happily ever after story about cancer. So many people are still fighting it and the effects of it for years. We have to battle against the media that shows people happy and glowing after treatment. No one wants to hear the story of people who are still dealing with the side effects, or even still battling cancer. We tend to have a belief that you get over it or you die. This is why so many people who still suffer effects, do it in silence. I must put in here too, that the mental health side of this has a huge impact. You feel isolated and cut off, you have no one to talk to about it, because if you do you feel like you are not feeling blessed enough that you are still here, or you have to deal with people who don’t understand why this is still a problem.

Why is it so hard? why isn’t there more done to help with these things? I know I probably sound all whingey  and whiney about this. Yeah yeah heard it all before from you lady, you have bone problems, you feel sick, what else are you going to whine about? I guess I will whine a lot about these things. Because it helps me, and when I get responses, I know I am helping some people. I don’t always publish responses to my posts, because some of them are too private, but they remind me why it is important that I keep doing this. This is to help those who need it. Especially my people we don’t talk enough about this and I still hope to set up some kind of advocacy for us to be able to help each other and share information with each other, so that no one has to go through this journey alone.

Thank you

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Out and about…I wish

You want to go out, you need to go out, you have things to do, places to go, people to meet. But you can’t. Taking that step outside the door can be overwhelming. What is going on?

I have reached that point a couple of times. I have been so ill or in so much pain, that I then start to worry about what happens if I am out and I get a pain attack, this then leads to an anxiety attack. I have spent so much time in hospitals and home that sometimes it’s way too much to contemplate doing something. I am set in my routine, but if I have to go somewhere different or travel further, it can lead to me stressing out and then this sometimes makes me ill that I can’t get out and about.

How did this happen? I am a bit of a home body, but I have always enjoyed going out. Loved just going somewhere with my kids, to a park or going on a bush walk. Just picking something new to do was fun and then we would do it. But all the health problems have eroded my confidence and I have lots of doubts about if I am doing the right thing. It doesn’t help when you do it with teenagers who want to do something, but show no enthusiasm when they are doing it, leaving me wondering if I did it right.

That is another realisation, teenage girls do have a huge impact on your confidence, when you are anxious already, there is nothing worse than, “Is that what you’re wearing” or “Don’t walk near me when we’re out”. This is normal teenage behaviour but, when you are suffering anxiety strangely enough anything they say, any contradiction to what you say takes on a bigger and broader impact.

I have to fight through the anxiety when it hits to get things done. I have to remind myself that, I need a job, or I have to do my studies. If I am anxious about traveling to a new suburb or driving further than I am used to I have my google maps and in my mind I break down the trip into small bite size pieces, I sing my anti anxiety song over and over again if I am going for tests, or doing something different. The song has been my nervous song since I was a kid. Whenever I felt unsure I always depended on Julie Andrews, I have confidence in me

 

 

But we all have to find our own strategies to deal with this and many of us suffer from anxiety from many different reasons. I am lucky that I can get over it and then eventually do what I have to do, okay well sometimes I have missed things because I have made myself ill with worry. But I am getting on top of it. I had no problems when I had to get up every morning and go to work, but not really having a purpose can lead to me being I guess a bit more slack. So when I am in pain, instead of fighting it, I have the luxury of being able to take pain killers and sleep. While this is helping me in one way it’s not helping in other ways. But I guess like all my demons, I will overcome. I have to as I have spent this year studying and next year I have to get a job again. I can’t sit back on the disability, I have too much to do and too many bills to pay.

One thing I think as I read through this that did help me, is that I am always willing to get in a help when it comes to my mob with cancer, I help people who need someone to be there and talk to others. This is therapeutic and lets me pass on what I have been through to others and to help them have a better journey than me.

Thank you


Dying my way

Did you see Q&A it was really interesting talking about assisted death and palliative care. I believe that I have the right to choose how I die. I know I am going to die. I know that I will end up in a lot of pain. I know that I will lose a lot of brain function and not be me.

So with this in mind I made up my mind long ago. I have talked to my children and family. I have said that when it gets to the end stage, I don’t want to be resuscitated, I don’t want machines to keep me alive. I want to die on my own terms. I feel very strongly about this, I am a Catholic and believe that suicide is a terrible sin, but I know the reality of life, I know many people have done it as they are in a black hole. I know of people who have done it as they didn’t want to die in a horrible way. I know that I risk my soul by doing this, but that is something that I am willing to do. Not just out of my own self idea of keeping in control, but I don’t want my kids have to watch me suffer. I watched my father suffer, I don’t want my kids to see me.

We put down animals and say its the only humane thing to do. But with people we don’t do that. If you are in palliative care you can go naturally which means that you can go without fluids and foods for days. One person on Q&A told the story of someone going for 14 days, now to me that is not humane, I know that they had pain relief, but really how do we let someone go like that? If a person on Manus Island goes on a hunger strike we automatically hospitalise them and force fluids into them. Am I the only one to see the irony in this?

Some doctors release pain relief a little bit faster to help a person along. But really this is not the only life we have. We have a soul and we are taught that the soul lives on, so is life just one stage on the journey of the soul?

I want to die on my terms I want to go with dignity and pride. I want to be able to talk to my children and say good-bye to them. I don’t want to be in a vegetative state or drooling. I want to go feeling the love of my children and being in a position to pray for them and to pray for my forgiveness as I pass.

Thank you


more crap on bowel cancer

I posted to events or meetings to discuss the promotion of bowel cancer. I was not alone in finding the kit that is sent out to you uninformative and not understanding of the realities of life. I mean who sends out a kit that has two strips of paper that sit in the bowl and then you poo, collect some, put it in a zip lock bag and place it in your fridge then do it again in a few days. After which you send it off.

At this talk the common complaints were that the paper sinks and what happens then? The poo should be in a toxic bag all yellow so it’s not sitting in the fridge for anyone to see or even little kids to see it and possibly think you have a stash of chocolate. No gloves in the kit, so yick you have to collect it bare handed.

As a group everyone thought it best to have a couple of extra sheets in the pack for sinkage or something going wrong. They need to be big enough if you are using  a self composting toilet, so it can hang down. Gloves a definite must in the kit, and yes having a toxic bag to put the sample in so that it’s not just sitting in your fridge.

Better instructions would be greatly appreciated. But also a bit more information as to why this is needed to check on cancer. Did you know that you can do the same test with your doctor and you only have to give one stool sample? So why not make it something like a pap smear where you do it at your doctor? Why not have it that the samples you send you can instead deposit at a pathology or at the doctors. Why not even give you two return post packs and send sample as it happens so that it’s not in the fridge.

Not every one has room in their fridge, if you are in a small unit or caravan you don’t have room to clear a shelf to hold it. What do you do if you don’t have a fridge? Well the advise is to keep it in a cool dark place, that to me just leaves the door open for flies getting into it and maggots.

Yes it is important to find out if people have bowel or correctol cancer, this is done in a way that really doesn’t make you want to do it. Maybe the government should do a bit of a campaign to show how important it is and to modify the kit. This would I think increase people screening and sharing the information.

I will end off with a wonderful jingle from Scotland

 

 

 

 


Bowel Cancer.

There are currently some more work shops and information sessions going on about Cancer for Aboriginal and Torres Strait Islander people.

If you are in Brisbane please come along to one of these two days, or if you are too far away, you can inbox me and I will take any stories and feed back you want. Thank you

 

bowel cancer InalaBowel Cancer