This blog has taken me almost five months to write. Writing is how I’ve always dealt with my thoughts, emotions, frustrations, etc. I started this just before Mom passed, and I’ve edited here and there when I was in the mood to do so. It always takes me to a sad place, so I couldn’t do it all at once. It’s been a bit of an emotional journey – a roller coaster, really. There is anger, sadness, regret, but there are also some suggestions and observations that I thought might help others. If you’ve lost a parent, you will understand where I’m coming from completely. If you haven’t, perhaps this will prepare you for when it does happen. I know I would have liked something like this to read before she passed; it would have helped me in numerous ways.
This doesn’t just deal with death, but death from cancer. Do you know someone fighting right now? Are they winning or losing their battle? I’ll tell you, the outcome will depend on two things – attitude and treatment. Conventional treatments will poison them and destroy their immune system. Holistic treatments are growing by leaps and bounds because more and more people are learning that there is a better way to fight.
As always, if you have questions, feel free to contact me. I always reply.
As I sit and look at a picture of Mom taken just two years ago on her 75th birthday, I remember the thoughts that I used to have, wondering how and when she would pass – I’ll be honest, even though I knew she wasn’t healthy, she didn’t have any major issues and she wasn’t on any medication, so I thought for sure I had a few more years.
Never assume you’ll have more time with a loved one.
Everyone hopes that when death does come that it will be quick and easy with no suffering and that all mental and physical faculties will be intact. Everyone hopes that their loved one will pass peacefully in their sleep after just another normal day in their lives.
If you or your loved one gets cancer & you choose conventional treatment, you can forget ANY of that happening.
When I began my months and volumes of research last July for holistic treatments and such, I would occasionally run across poems, sayings, sites, etc, that seemed to make light of cancer. I don’t mean that in a bad way, exactly – I guess they were just trying to focus on something positive when dealing with something so bad – but those things never really set right with me. Cancer is VERY serious; in fact, it’s probably THE most serious sickness/disease that we have to deal with in our age (and rivals other plagues from history – bubonic plague, smallpox and syphilis). The population already has the wrong idea about cancer – how it starts, how to avoid it, what treatments are best, etc – and trying to be “lighthearted” about it isn’t going to help. We need to be serious about it. We need to discuss how bad it is and how wrong conventional treatment is, not skirt around it because it’s uncomfortable or because we don’t want to think negative or because we think our doctor knows best (so we question nothing).
One of the first things I ran across was a poem, “What Cancer Cannot Do”.
“Cancer is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the spirit.”
If you have loved this poem, I hate to be the bearer of bad news, but cancer CAN, DOES and WILL do those things and then some. I’m not being a pessimist, either – I am a realist, always have been. I have seen with my own eyes what cancer does – I have seen all the proof I need. Again, I’m sure whoever wrote it had their heart in the right place, but cancer is sadly more powerful than they knew. Let me explain.
“It cannot cripple love.” – My parents’ 50th anniversary was September 2012. We never got to celebrate properly with a party like Mom wanted (and like I’d planned – made all the arrangements, mailed invitations, everything; they ended up returning to Florida the day we were to have the party). The pictures that we did take…Mom had hardly any hair. I’m sure that wasn’t what she had in mind when she pictured her 50th anniversary photos. My parents and I went through the motions, but no one’s heart was in it – the big anniversary was ruined…tainted forever. Their last anniversary together – their 50th anniversary to boot – and it will forever be a source of immense sadness because of the circumstances. What a way to end such a long marriage. Dad can’t discuss Mom’s death yet without tearing up and having to stop talking. Cancer cripples love.
“It cannot shatter hope.” When we had our very first appointment back in July – before any biopsies and scans and such – the oncologist told us (prematurely and inappropriately) that Mom’s cancer was 80% curable. He was wrong for giving us false hope; he did not know the extent of her cancer, and he was setting us up for a letdown. After the scans and biopsies, he told us that her cancer was 60% curable. That’s a hard blow, and whether you want to admit it or not, getting news like that WILL change your attitude as far as your chances of living, especially those who put so much faith in doctors. After unsuccessful chemo, we finally got around to radiation, which worked wonders. Mom’s cancer all but disappeared, and we thought we were in the clear. Then the tumors started growing in a different area, and it was in the moment of discovering them that Mom officially gave up. She’d already been so sick from the chemo…she’d been stuck by so many needles…she’d been in and out of so many doctor offices…she’d been so miserable…she decided right then that the fight wasn’t worth it and that she was done. Cancer shatters hope.
“It cannot corrode faith.” You’re led to believe that when you get sick, you go to the doctor, you do what they say and you get better. That’s what the doctors are for, right? To help you get better? It’s the same with cancer. You meet with your oncologist, and you rely on them to give you all the options available, to give you all of the information that you need, so that you can get better. Here’s the problem – our medical industry doesn’t want you well. Doctors are not properly taught about cancer and what causes it and how to reverse it or avoid it in the first place because Big Pharma won’t have it. Doctors are brainwashed from day one of med school into thinking that conventional treatment is the only treatment. (I’m sure the kickbacks help.) Instead of discussing nutrition and cancer fighting foods and other such proven and safe treatments, they call them quackery, won’t discuss them with you, give you a hard time if you tell them you’re trying something natural, etc. So, after you’ve been pigeon-holed into doing the conventional, poisonous treatments and they don’t work and you’re sicker than you’ve ever been, you know that the system that was supposed to ‘make you better’ isn’t. Cancer corrodes faith.
“It cannot eat away at peace.” Have you ever had chemo or been a caregiver for someone who has had chemo? There is NO peace. The list of reactions and side effects is astounding. Your hair falls out. You’re nauseous, often to the point of vomiting, and can’t eat, which is a good thing because you have constipation, anyway. You have no energy. You’re dizzy. Your fingers and toes are numb and tingly all the time. You can’t do something as simple as go to the bathroom by yourself anymore because you’re so weak. There are many, many more side effects. You feel so sick for so long, all you want to do is die. Cancer eats away at peace.
“It cannot destroy confidence.” Imagine you’re a cancer patient. You’ve been led to trust your doctor. The doctor gives you choices of treatment, but you’ve already had both chemo and radiation, so you know how you react to both. You choose to check with your radiation oncologist; after all, he’s your doctor, too. He tells you that he can do radiation without a problem, especially when you responded so well the first time. But then he says that he wants to wait, not because of a choice made by you to wait, but because your other oncologist argued with him to not treat you with radiation. How would that make you feel towards your doctors? The treatment that does work for you is taken away – your choice is taken away – and your trust is destroyed. Cancer destroys confidence.
“It cannot kill friendship”. My mom didn’t have a lot of friends over her lifetime; she was very much a loner. There was one lady, however, that was probably the closest thing to a best friend that she ever had. That friend fought a cancer battle, too, but she won her fight. She knew exactly what Mom was going through. Unfortunately, she lived out of state and only visited about once a year. A couple weeks before Mom passed, she’d been trying to get a flight to see her. She didn’t make it. Mom never got to see her best friend. Cancer kills friendships.
“It cannot shut out memories.” Mom’s memory had been pretty decent before the chemo. She certainly didn’t have any Alzheimer’s or anything. Chemo, however, affects your ability to remember. Look up ‘chemo brain’ sometime and you will find an explanation of what the chemicals do to the brain. Not only did she lose her ability to focus and concentrate on things, but she couldn’t remember simple things. Cancer shuts out memories.
“It cannot silence courage.” When you hear that your chances have dropped 20%, when you’re flooding your body with poison hoping to kill the cancer and it does nothing but make you sick and miserable every hour that you’re awake, when you think you’ve beaten it and then it comes back somewhere different, when you can’t trust your doctors because they’re arguing and making decisions about you behind your back and without your consent, when you’ve started taking another chemo treatment because you felt like you had no other choice, when it makes you sicker than the first one did, when you couldn’t have the treatment you wanted, when you have sat and cried for hours in despair – cancer silences courage.
The last two deal with religious aspects, and I will not address those for many different reasons.
Don’t misunderstand my intentions. I am not saying that if you are told that you have cancer that you should hang it up and start making funeral arrangements. Not at all. What I am trying to tell you is that if you or your loved one doesn’t decide to fight 110% – and not one percent less – and that if you rely on our corrupt medical system to save you or tell you what to do, cancer can and will do all those things. It is very serious business and needs to be taken just as seriously. I have more to say about that, but that will be another blog.
Let’s get back to Mom. There is a part of me that knew how this would end the day we got the confirmation of her cancer just because I knew my Mom and how she was. There is a smaller part of me that held onto the hope that we could beat it, especially since it was so curable – or so we were told. I made a decision right then that I was going to shield her from as much negative as possible, that I was going to surround her with as much positive as I could and that I was going to devote as much time as necessary to try every treatment that I could find. I begged family to send her pictures of grandkids (and other young ones in the family), to send her cards – anything that would put a smile on her face. I wrote positive messages on sticky notes and stuck them all around her bathroom mirror so she’d see them every day. I called our first oncologist and basically told him that we needed to keep things said to her on the more positive side. I lost count of how many hours were spent searching for anything and everything to help her. The effort was massive, let me tell you.
Sadly, I knew I was fighting an uphill battle. Some people who get cancer become determined to beat it – adamant about fighting. Others don’t. My mom never said she wanted to beat it, never said she was going to try hard to fight it. Despite all my efforts, I feel that she went through the motions when I would present her with something new in the arsenal, but that was it. She’d eat or drink or take whatever I gave her, but not to any degree of consequence (which you have to do). It’s as if she was only humoring me and my tremendous efforts to save her.
I’ll be honest – sometimes it makes me quite angry, and there is an awful lot of hurt that I now have to muddle through. Sometimes I feel like she should have tried harder and made more effort, especially when I was doing so much. I spent hours and hours (literally) on the computer, searching and searching websites for any bit of information that could help her, for a new protocol to try, anything. Almost every single night for months was spent scouring the internet relentlessly, from the time I got home from work until I went to bed. I can’t tell you how much money I spent buying foods and herbs and oils; again – anything that I thought would help. Ultimately, though, it was her life and her choice. As much as we’d like to, we’re not going to change anyone’s mind if they don’t want to fight. It’s an awful thing to have to accept someone’s choice to not fight, but who’s to say in the same situation that we wouldn’t do the same? That being said, I often do wish that Mom could have just told me in the beginning that she wasn’t interested in fighting, and then perhaps I could have concentrated on just being with her instead of trying to save her. But that’s another blog.
I also think Mom gave up in stages. Before the discovery of the lump at her neck, she’d been telling me for years that she “was probably eat up with cancer”. She’d also spent the last forty years of her life eating the worst food possible, so both primed her body and mind for the disease. She’d also watched her mother die from cancer, so she knew it well.
I believe the first stage of giving up was when she first felt the lump around March 2012. I’m sure she knew that it was more than likely cancer, and she submitted to it then.
The second was when the first oncologist dropped her chances of survival from 80 to 60. (He’ll be getting a letter about it, but that’s a different story.)
The third was when she started feeling so sick from the first chemo that did nothing but poison her. The desperation in her crying is what told me. There is nothing worse to me than listening outside the bathroom door while your mother cries because she feels that it’s hopeless, that she’s going to die, anyway. It absolutely destroys you inside.
Her LDH (cancer marker for lymphoma) had been over 1300 in the beginning, so I thought when we got it down to 200 that we were in the clear. She felt loads better. We’d been doing natural protocols for a month or so, and we did radiation which she responded well to (even though it’s evil, too). She ate better, moved better – I just knew we’d gotten it.
I was wrong.
The fourth stage was when she felt new lumps in a different spot. She knew it was back, and she knew what she’d have to go through, and it was just too much.
The fifth and final stage was when we wanted to do radiation again but found out that the second oncologist (that we thought would be better than the first) had argued with the radiation oncologist, essentially forcing us to go back to chemo, which Mom did not want.
And that is when her body began to die. Her mind, her body and finally her spirit were broken. There was no way to bring her back. She died a month after starting on a chemo pill – actually shy by a couple days. It had been a rapid descent.
I really wish someone could have given me some idea of what to expect – I’ve never watched someone die before. Seeing a body in a casket in no way compares with the events that lead up to that moment. I’m going to share some of my thoughts and observations – those of you who have ‘been there’ will sympathize; those of you who have not will hopefully gain some helpful information to remember for a later date. Also, keep in mind that everyone’s experience is a little different. Your loved one’s passing will more than likely be similar but not exact.
Looking back to a month or so before she passed, I noticed that she began to eat and drink less – she just wasn’t too interested. I continued our natural protocols, but she didn’t eat or drink much of that, either. Also, she was constantly dizzy and off balance. She could hardly sit up long enough to eat.
Two weeks before, she would fall asleep while eating and even using the bathroom. In fact, she had such a hard time getting around, just to get her from the couch to the bathroom and back to the couch was an hour. It was almost too much for her body to be able to do. She still wasn’t eating or drinking much.
The day we took her to her last oncologist appointment (also about two weeks before she passed), she was barely coherent. She fell asleep in the wheelchair. I had to pick up her feet and put them in the van – she could not lift them. (Her legs had been swollen for a month from tumors pressing on her lymphatic system, so they were heavy and almost impossible for her to move. She often dragged one foot when she walked.)
Mom stayed in the hospital for seven days, and each day was a little worse. She actually ate halfway decent, which was odd (though the last couple days, she ended up losing everything she ate). Each day, she had even less energy and slept just a bit more. At that point, she could not even move herself around on the bed. Every move she made was by someone moving her. We had to grab her ankles to swing her legs around and then pull her arms to lift her upper body. It was something, let me tell you. We had to do the opposite to get her back on the bed. Then we had to shift the pillow – and her – around for at least five minutes until she was comfy. Sort of comfy. It was awful.
She told me that she would die in the hospital. I told her that she would NOT, that I wouldn’t allow that to happen. We were going to get her home, and I got to work on that immediately. Both of her parents died in a hospital, but I was not going to allow that to happen to her. She wanted to be home, and I was going to get her home one way or another.
Mom had four visitors while in the hospital, and each time was the same – I’d have to leave the room because she’d start crying, saying how she wasn’t getting any better, and it was always a few minutes before she could talk to them.
My friends, there is nothing more heartbreaking or gut wrenching, than listening to your mother cry because she knows she’s dying. NOTHING. Just think about that for a moment.
Eleven days before she passed – the day that she came home from the hospital – was the last time that she ate dinner at the table. It was an ordeal to get her there because she could hardly walk, and she could barely keep her head up. Her upper body was bent over with her arms straight out with me holding her up basically as she walked, and it took Dad and me to get her in there. Her legs were so swollen, she could hardly move them. I fed her mostly, and she fell asleep a couple times. (I actually caught her head from falling to the table once.)
Days ten and nine found her only moving between the couch and the chair (about 2 feet apart). She slept in both, and I spent forever trying to keep Dad quiet so she could rest. (Did that in the hospital, too.) Food – what little she ate – was brought to her on the couch (we still had to move her). Using the potty chair took two people since she had no use of her body. That often took thirty minutes because she had to rest.
Day eight, she no longer sat in the chair. She was restricted to the couch and potty chair only. Each day she ate less and slept more.
Day seven and six, the eating less and sleeping more continued. It became a bigger ordeal to get her on the potty chair. She had about 30% use of her body. It was all Dad and I could do to move her. I think it was this day that she woke up from one of her naps and was actually frustrated because she wasn’t dead yet. Talk about feeling heartbroken. (I was also fighting with Hospice during all of this, trying to get some help and NEVER getting any.)
Days five and four were slightly better only because her son and grandchildren visited for a couple days. After the initial crying session when they arrived, she sat up a little more, ate a little more and even Skyped with her great-grandchildren. She did have to take a lot of naps.
Day three, she slept the majority of the day. She sat up a few times, but not for long. It was the last day that she ate, and it was also the last day that she used the potty chair. She was so weak, she could hardly stand, even with help.
Day two was the worst. She was very agitated. She couldn’t sleep soundly. We had an ‘episode’ every single hour from 6 am until 8 pm when Hospice finally arrived with some medicine to help her sleep. She’d wake up, call and yell for us to ‘get her up’, Dad and I would pull on her arms to sit her up, but it was impossible to hold her up and she’d just fall back down again. It was the last day that she drank water. She kept telling us that she wanted to use the potty chair, but that was impossible, too. She’d have these outbursts for a couple minutes and then go back to sleep, only to wake up within an hour and do it all over again. It was the last day that she was semi-coherent.
The day before she passed, she did not wake once. She moaned and groaned and moved her arms a lot. There was no food or water. I didn’t try to wake her, but I don’t think I could have if I had.
The last day found Mom breathing very evenly and very steady. She did not move. She made no sounds. Her toes began to turn purple in the afternoon, and around 8:30 that evening, she just stopped breathing. Dad called me at home to tell me, and while I wasn’t surprised, my entire world stopped. My mom was gone. It’s the most bittersweet feeling ever because you’re relieved that they’re no longer suffering, but you wanted them alive and not suffering, not dead and not suffering. And looking back, I feel like I should have known…that I should have stayed by her side every second that I could.
When I arrived, Dad was sitting on a foot stool beside the couch holding Mom’s hand. I joined him and put my arm around him to offer what little comfort I could, though I really felt like falling apart. The only time I’d seen someone who had died was in a casket. Let me tell you, it’s very different when they’ve just passed. I had stared at her chest for hours, watching it rise and fall – checking that it was, actually – but then there was nothing. No movement, no breath – just emptiness. With her mouth still open from her breathing and her eyes nearly closed all the way (I could see just a sliver of her eyes), it is an image that will haunt me forever; it’s painfully and permanently burned into my memories. The body that had once housed my mother was just empty, and I’ll admit that I felt a strange detachment. That detachment followed me all through the funeral process, in fact. It was not an unhealthy ‘try to be detached so it doesn’t hurt’ type thing, but more of a ‘well, it looks like Mom, but it’s just an empty shell’ type thing (and I don’t mean it in a religious sense). If you’ve been through this, you know exactly what I mean. If you haven’t, it’s one of those feelings that you have to feel yourself to truly understand. You just can’t explain it. You feel…empty…and lost.
I’m reminded of a conversation that I had with a Hospice worker while we were still at the hospital. She told me how she thought the process of dying was “beautiful”. It is NOT beautiful, folks – it’s horrible…it’s tormenting…it’s cruel…it’s confusing…it’s scary…there is not one single part of it that is “beautiful”. I think she’s watched one too many Hallmark movies. Trust me, it’s the most awful thing you can witness, especially when it’s your parent.
It’s odd. I’ve learned that when you travel out of the country, it changes you. It enables you to connect with others that have done the same on a different level than with those who have not. This is the same. You will have different conversations with those who have lost a parent than with those who have not. There is a deeper connection, a deeper understanding.
A word about Hospice – unless you need free stuff, they are useless. For years, all I heard about was how ‘wonderful’ they were, but when it came time for them to help me, they did nothing. Even in the hospital before we left, at least four Hospice reps came by. They told us over and over and over to let them know what we needed, blah blah blah, but when I did have a need and told them about it, they did nothing. Oh, a nurse came by to get Mom’s vitals, but it wasn’t necessary. What we needed was help with moving Mom the last few days (Dad is 79 with a defibrillator; he didn’t need to be pulling on Mom), and I asked repeatedly for their help. Sadly, you get either nothing or someone there 24/7, which is pointless. Do yourself a favor and hire a private nurse – you’ll get what you need that way. By the time we finally got a private nurse, Mom wasn’t getting up anymore. I’m still angry about it. (Yep. Hospice is getting a letter, too.) That does not mean that individuals working for Hospice are useless – don’t misunderstand. It’s the organization’s limits and laws that make them useless. I’m very disappointed in them, and I will have even less dealings with them in the future.
Once Hospice arrived after Mom passed (they have to be there to pronounce them dead and dispose of unused medications), we had to dress her. That was almost impossible. I’m still mourning and in shock, and now I have to help hold her and move her body around, and the nurse is trying to tell me why I need to be careful because of things that start happening when someone has passed. Very, very hard.
Something else damn hard was watching them put Mom on the gurney to take her to the funeral home. The guys from the home were nice – I had no issue with them – but I couldn’t watch when they got outside. It just destroyed me to know that she – not even her body – would be in the house again. That was it. She was now gone in every way.
Thirty eight years old is just too young to lose your mom. Too damn young. My paternal grandmother died before I was born, both of my grandfathers died when I was six and my maternal grandmother died when I was fifteen. Too young. I’ve been dealing with adult things since I was very young. When I was six, I had to be good and behave in the hospital waiting room while Mom went to visit Dad after the heart attack that nearly got him. Too young. My other friends’ biggest concerns were about the latest toy they wanted – I had to deal with being told by my parents that if something happened to both of them that I’d live with my brother. I just wanted to be a kid.
Let me tell you – funerals are expensive. I think the total between the two funeral homes (she was embalmed in Florida and buried in North Carolina) was $10,000. And we had no extras, nothing fancy for her. If you don’t have life insurance, GET IT. And if you haven’t started a pre-pay funeral option somewhere for you, START IT. I really can’t stress that enough. Prices are not going to go down, and when the family is walking around in a daze after someone passes, dealing with these costs is pretty harsh. The more plans you’ve made ahead of time, the less your mourning family members will have to do, and they will definitely appreciate it. Your family members just need to handle losing you, not trying to read your mind as far as what you might or might not want for your funeral. That’s a whole other level of stress.
Ironically, the day after she passed, we were pulling into the parking lot of the funeral home when my phone rang. I didn’t recognize the number, but I’d been dealing with so many people the past few days, I thought I’d better answer. It was the desk girl at the oncologist’s office telling me that he wanted to schedule a follow up. I couldn’t even believe my ears. I promptly told her that Mom was dead and if he’d not been ignoring us for the past number of weeks, he would have known that (our last number of appointments, he couldn’t be bothered with us and sent in his assistant). I told her a few other choice things and said that she could pass everything I’d said on to him since I knew she was the messenger. I definitely shocked her – she didn’t know what to say.
And no, even after finding out about Mom, he nor his assistant (that we saw more than him since he was avoiding us) ever called us or sent a sympathy card. Yes, I’m still seeing a lawyer about him.
I’ve done quite a bit of thinking over the past few months. Though I tried my best to do what I thought was the right thing at the time, I can look back now and see where I might could have done something a little different – or should have. Life must be lived forward, but can only be understood backwards, so it’s my hope that someone else will be able to make use of my insight.
If you have a party or celebration planned – like the surprise 50th anniversary party I had planned for my parents – don’t cancel it due to discovery of a disease, like cancer. Yes, the clock is ticking, but #1 – treatment will not start for at least a couple weeks, anyway, so you have more time than you think and #2 – better to have the party because it might be the last time they get to see their family. You’ll think it’s hard to ‘party’ when faced with a cancer or other diagnosis, but trust me – have the get-together. I cancelled mine, and I’ll hate that decision for the rest of my life. I knew I’d be damned if I did and damned if I didn’t.
The oncologist you choose needs to be AWESOME. Do NOT accept just anyone – do NOT settle. You must absolutely ADORE him or her. If yours is just ‘okay’ or ‘nice’, get another one. I don’t care if it takes ten. Keep looking. We had two, but we should have looked harder. And the very FIRST time he/she pisses you off, run away and don’t go back. Also, it’s your choice if you want to tell them that you’re doing ‘natural’ protocols (I really hate that term), but be prepared for repercussions. Doctors are NOT taught these protocols, they’re not taught about nutrition and how it affects the body (shocking, I know, but they’re not) and they WILL give you a hard time. Be prepared to stand your ground, or find another oncologist that will not give you an earful about it. Even those few that DO know about nutrition can NOT say much about it to you because the entire medical system is about MONEY, not healthcare. Doctors are only taught about drugs because that’s where the money is – they can’t patent fruits and vegetable. Just be aware.
When you go for the preliminary appointments, DO NOT let the oncologist give you a % curable until he has reviewed the scans and biopsies. Tell him/her specifically to NOT tell you a number. Giving you false hope like our first one did is unprofessional. Don’t talk odds until everything is reviewed, period, or you can set yourself up for a hard fall. When these appointments start, there is a lot of information that is given; it’s hard to remember everything, so feel free to take a small recorder so you can listen again later (and for possible legal reasons, as well).
The oncologist will usually push you towards chemo first. DO NOT be afraid to tell them that you want to try radiation first, especially if there is a large tumor already. Radiation can buy you some time. If we’d had it this last time, Mom might have lived another 6 months. Also, don’t be afraid to tell them that you don’t want to do ANY conventional treatments. Chemo is poison and destroys your immune system while radiation itself can cause cancer. Many are choosing holistic treatments, so if this is your choice, you tell the doctor so and be firm. Many will get downright nasty with you (because it’s money out of their pockets if you won’t do conventional) so you will have to be steadfast in your decision. Don’t put up with attitude from a doctor.
From the very beginning, start a journal. Write down everything. Every appointment. Exactly what they did. Every doctor and nurse’s name you come into contact with. Change in daily routines. Side effects. Should you or your loved one end up in the hospital, do the same thing. Record names, what they did, what time, etc. I kept some notes while Mom was in the hospital, but not nearly enough. You can NOT keep too many notes and they can NOT be too detailed – trust me.
When death approaches for your loved one, there will be more frustrating things for you to deal with – doctors, Hospice, private nurses, funeral plans, etc. Make damn sure that you don’t let them takeover because it’s easy for them to do so. On Mom’s last day, I spent half the time on the phone, and while I needed to deal with the issues, I needed to focus on my mother more. Let people leave messages, or turn your phone off for an hour. Don’t get so caught up in all of it that you miss the last days. You will regret it forever.
Spend as much time as you can just looking at your loved one, especially if they’re sleeping a lot. I know it sounds funny, but you won’t get to see them alive much longer so memorize everything. Sit beside them and hold their hand or rub their arm (as long as it doesn’t disturb them). You will wish that you’d done more – I do. I wish I could have the last three days back just to sit beside of my mom and hold her hand.
Tell them that you love them often because you don’t know when they will become incoherent. Supposedly they can hear you even after they’re incoherent, but why wait? Tell them while they can still look at you, hear you and respond. I don’t know the last time I told Mom that I loved her where I knew she heard me. I should have told her every day at the hospital and every day after we got home.
Prepare ‘final’ clothing ahead of time. What do you want them to wear to the funeral home? What do you want them to be buried in? Things will be crazy after they die, and the first few days will pass in a blur. I didn’t think about either until the last minute. Not good.
Keep track of clothing, pillowcases, etc that your loved one passed in. You might not want those particular items washed – I didn’t. I wanted those last items to remain as they were.
I’ve had brief moments where I almost forget that she’s gone. I’ve been so focused on her that it’s taken my brain some time to adjust. The first couple months after, when I was at the parents’ house, I’d continually look over at the couch like she’d still be there. When talking to Dad on the phone, I’d think to ask how Mom was, only to remember that she wasn’t there.
I know this entry has been a roller coaster; I suppose it’s indicative of my emotions and what this year has brought.
Bottom line, I wish my mom was still here.
As I sit in the hospital, watching my dying mother sleep, I can’t help but remember what the first oncologist said about her lymphoma – “It’s highly curable; an 80% cure rate”. Yet here she is seven months later, and it’s killing her.
Why? If it’s supposedly “highly curable”, then why is she dying from it? Doesn’t make much sense.
First, cancer is a type of virus, but it is also caused by much more; what we eat, cigarettes (including second-hand), in the toiletries we use, etc. When we think of cancer, we think of some foreign, alien-like object that grows inside us and takes us over. It isn’t like that at all. Cancer is cells that were already in our body that are not functioning properly. Cells function improperly all the time, but usually – if your system is strong enough – the good cells destroy the bad cells so they never grow out of control. Unfortunately, for the elderly, for children who already have a genetic weakness, for adults with an acidic and compromised body condition, those bad cells DO grow out of control. They divide and multiply just like the good ones, and then they form masses, which are the tumors.
Here is rule #1 when you get a diagnosis of cancer: after you get over the shock and disbelief, after you cry for a few days, you will have to make a decision, because this decision will affect your treatment and whether it works or not – so it’s fairly important. You will have to decide if you’re going to fight with every fiber of your being or if you’re going to give up. And let me be very clear on this; if you decide to fight with any less than 110%, you might as well give up.
I know what you’re thinking – all that “mind over matter” and “think yourself healed” stuff is a bunch of hippie-metaphysical mumbo jumbo. I assure you it isn’t – it is scientific. It has been proven by science time and time again. Talk to ANY cancer survivor, and I guarantee you that you will find a person that gave 110% and tried to have the best attitude possible.
Of course you can’t be happy and enthusiastic about having cancer, but I didn’t say anything about being “happy”. I said you have to TRY to have a good attitude and be determined to fight – those are two very different things.
Doctors and treatment. Here’s a fun topic. Let’s talk about doctors first – you’ll mainly be dealing with an oncologist and/or radiation oncologist. I’m going to put this in capital letters because it is THAT important: IF YOU ARE NOT 110% COMFORTABLE WITH YOUR DOCTOR, FIND ANOTHER. DO NOT UNDER ANY CIRCUMSTANCE FEEL OBLIGATED. DOCTORS WORK FOR YOU. THEY ARE YOUR EMPLOYEES. YOU CAN FIRE THEM AT ANY TIME FOR ANY REASON. YOUR VERY LIFE DEPENDS ON THEM SO THEY MUST BEHAVE EXACTLY AS YOU REQUIRE.
Got that? Read it again. Traits that you’re looking for are caring, professional, polite, respectful, honest (but not rude), thorough, open-minded and attentive. If ANY of these are missing, keep looking!
The best thing to do is shop around in the beginning. Yes, time IS of the essence, but choosing the wrong oncologist can be a death sentence itself. Ask around for referral’s first before choosing blindly (don’t forget to look up reviews online for help choosing). Make multiple appointments and take all of your scans and reports. (Always ask for paper copies of reports and copies of images from scans whenever they are done – will save you time.) Meet with AT LEAST five oncologists before choosing. No, that’s NOT too many, not where your LIFE is concerned.
Treatments. The doctors CAN NOT tell you what to do. DO NOT let them bully you or talk you into what THEY want to do. Their job as YOUR EMPLOYEE is to gather information, inform you of ALL options and tell you pros and cons of each so that YOU can decide. They are to remain neutral – and if they don’t, they could be in the back pockets of BIG PHARMA. Many are. AVOID THEM LIKE THE PLAGUE.
Chemotherapy is poison; don’t let anyone tell you otherwise. More often than not, it does NOT work. In fact, if you try it and don’t get results after the very first treatment, you might want to discontinue, especially with people over seventy. Again, it is not “medicine”. It is poison that may or may not get rid of the cancer. A few people will get instant and effective results from it. Most people will get nothing but a ruined immune system. Everybody gets poisoned, regardless.
Radiation is somewhat less toxic, but you have to keep in mind that while radiation will melt cancer away, it can cause it at the same time. It can also affect your bone marrow – and if you’re not a candidate for a bone marrow transplant, this can be a big factor. However, while often considered the second choice, do not be afraid to try it first. Doctors like to push chemo first (because of money), but sometimes shrinking tumors before the chemo is more effective. If you try chemo over a number of weeks and it doesn’t work, your cancer continues to grow and spread. At least, if you can shrink some of the larger tumors, you stop the spreading, and that could mean more months and/or years for you.
Thank goodness we have many natural protocols that can help fight these misbehaving cells. And this is not hippie-metaphysical mumbo jumbo, either. This is based on scientific research. (Sadly, the FDA and our government have confiscated most of it because they can’t patent something natural, but that’s a whole other story.) I strongly advise you to start these natural protocols the day after your cancer diagnosis, because like they say, there’s no reason to close the gate once the horse gets out of it. Attitude, again, plays a big part in treatment. You must give 110% or you might as well give up – anything less just will NOT cut it. You will need to drastically change your diet, and you must be diligent about it. You must overload your body with the good to fight the bad. There are many different things to try, and I encourage you to do ALL of them. Throw the kitchen sink at it, so to speak. The protocols are just foods and plant extracts and supplements and such, and they will not affect chemo or radiation – do NOT let doctors tell you otherwise. In fact, when you’re interviewing candidates for the position of your oncologist, you can ask them directly about natural treatments. Understand that they will NOT be able to encourage you (FDA/government rules), BUT they should NOT discourage you, either. If they do, send them on their way.
One other CRUCIAL element is to educate yourself about your type of cancer and cancer in general. DO NOT rely solely on your oncologist. Even the best one can not have ALL the knowledge. The internet is jam packed with information (just avoid any government related site), and if you can’t take the time, ask a family member. Fighting cancer is like fighting in a war – you wouldn’t run out onto the battlefield without being ARMED…you wouldn’t run out under the assumption that someone else was going to protect you. So don’t do it with cancer.
If you have the mentality that doctors know best, that you’re not going to do anything unless they tell you, you will probably die. I know that’s blunt, but it’s a sad truth. Doctors are there to GUIDE you and to provide you with information – they are not there to TELL you what to do. Only YOU are in complete control of your body and your healthcare. No one can force you to do anything. Remember, doctors are YOUR employees. They work for YOU.
Some odds and ends to remember:
In the beginning and during treatment:
- Take a recorder during appointments
- Keep pan/bucket close w/smelling salts
- Keep tissues on hand
- Make sure you have a thermometer at home
- Have hand sanitizer with you
- Get a heating/warming pad for pain
- Get some dong quai and maca (for you)
- Have some books/magazines (for you & patient)
- Take a big bag to chemo appointments to put magazines, snacks, DVD/CD player, etc in
- Keep your journal with you to record EVERYTHING
- Make sure to get copies of all reports and disk of all scans
Towards the end (if it gets to that point):
- Always have a primary care for backup because you might not want the oncologist to have anything to do with the patient
- Get sponge swabs for mouth and use room temperature water
- Lip moisturizer (in/outside)
- Bell or baby monitor
- Diapers (pull ups and tabs)
- Large pads (for moving, too)
- Multiple pillows
- Toilet paper/wipes for bedside potty (make sure to get a cloth seat cover because patient will stick to the plastic seat)
- Hand sanitizer
- Folded sheet for moving patient
- Loose clothes/socks
- Very important – If you sign DNR at hospital, you must keep the yellow copy – do NOT let hospital keep it; tell them to make copy. Paramedics will look for the yellow copy.
- If there is a hospital stay, get ALL charts, billing and scans
- When people give you business cards, write down on back what you discussed (because if the patient is dying, you will get many visits from many people)
- If you are a caregiver, make sure you have a power of attorney or you will have issues
- Bed is the best place in last days, but don’t force the patient if they prefer the couch
- Discuss a private nurse. Hospice is very limited. And very frustrating.
- Find out about any funeral arrangements ahead of time.
- If you don’t completely adore your Hospice nurse, demand another.
- Check your funeral attire – you don’t want added stress of shopping later
- Pick out what your loved one will wear to funeral home and for burial ahead of time
- Always be mindful of your nails, scents (perfumes), hair on clothes, cold hands; whatever little triggers the patient has.
Thanks for reading. If you think someone would benefit from any part of this, please feel free to share.
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