An unexpected offer of friendship and encouragement from another patient in Ontario....what a blessing.
Hi Priscilla
Teresa here, from the ACOR list. When I was needing help there were a couple of people on the ACOR list who offered to be my friend and help me along the way. Everyone needs different kind of help but the thing we all seem to have in common is there a times when we need to just vent. I am offering my hand in friendship, to be here for you in whatever capacity you want.
Perhaps I should start by telling you a bit more about me. I am 42 (just had my birthday), have been married for almost 22 years now, have 3 kids (girls 20 and 16 and a boy 9). My husband and I own our own business, a printing company. In my family I am the only one to have cancer so it was all new to us. My cancer started in 2003 when I noticed a lump in my belly and I underwent surgery to remove it before then even knew what it was. My cancer story is posted on the Sarcoma Canada website, www.sarcomacancer.ca, if you want to read more.
I know you have some tests set up and that is really good, you need those done before you can decide on a treatment plan. Do you have someone to go with you to the tests and appointments? How will you travel to Toronto? What hospital do you go to in Ottawa?
Email me back whenever you like.
Sincerely,
Teresa
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Hi Teresa,
My foster mother is coming with me to the initial appointment in Toronto on January 3rd. We decided to take the bus but it's costing a pretty penny. You were saying earlier that the cancer center helped you pay for VIA rail? Who would I ask that too? In Ottawa I was seeing Dr. Auer at the General Hospital Cancer Centre. She is the one that has pushed all the tests and referred me to Dr. Rebecca Gladdy at PMH. I had a CT Scan of my chest on Friday and I have a spine MRI next Friday. The initial MRI showed that the tumor was around my spine... I am honestly so scared and not ready for any of this. But I know that for my two little girls I don't really have a choice.. From what I have seen on here as well as reading your story and a few other stories, it seems like there is a high chance of this re-occuring. I guess it's normal to fear death at this point? My hubby is trying his best to be supportive... But from a man's perspective... I know he is struggling with the idea of me being so far away, as well as the fact that he wants to be there for me but also needs to keep working so we can pay the bills. I am currently on maternity leave until June so that helps a little. Doctor said depending on everything, if I am still not 100% she will put me on sick leave. I have so many worries and fears at the moment and find myself crying a lot.
Thank you for your support
Priscilla Kelly
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Hi Priscilla
It is great to see a message from you. Things probably feel like they are coming at you in all directions way to fast right now. When you chat with myself or others on the ACOR list you have to remember that we have all had time to get used to our disease and learning to live with it. You will be okay. There is lots to learn, consider and cope with but you will cope, heal and be okay.
Lets talk about facts and details first....
Travel costs...call the Canadian Cancer Society, it's 1 888 939 3333 and they can give you the office that is closest to you to pick up the forms from. They have a program to help get cancer patients to appointments. When appointments close by they provide a driver and car but when it is out of town they will reimburse you for the lowest travel method which in my case was the bus. I wanted to use train so they would reimburse me the bus fare rate when I submitted my receipt for the train ticket. It only applies for yourself, not your companion. But, then, if you can get your doctor to write you a letter saying you need assistance when traveling then you can likely get free fare for your companion. That is how it works with Via, you could also ask the bus company for their policy. The letter had to be worded specifically (I can give you a copy of mine) and it can be from any doctor (a specialist or your family doctor).
On the topic of expenses, it may seem petty right now, but you can use all of your medical travel costs on your income tax so keep track of your appointments and receipts for travel including parking and meals. These costs start to add up and getting a tax credit for it helps a little bit. I use a calendar to track everything, my expenses as well as my appointments. Of course I didn't at first but my accountant friend advised me wisely on this.
I know this is going to seem overwhelming but one last thing I want to stress to you that is really important - start keeping your own medical binder. You need to take charge of your health care and keeping a record of all your appointments, tests and results is not something your doctor will suggest but pretty much any cancer patient you meet on ACOR will tell you is important. You have a right to copies of all test results (it's a written report your doctor will have in your file) plus reports from each visit that your doctor writes about what happened at the appointment. My doctors in Montreal actually expect me to want these and they hand me copies at the end of each appointment however when I was a PMH I had to request everything. I also keep notes on conversations, I print out useful emails, I collect business cards, etc. I have used my own binder of information many times.
PMH - it is the largest Sarcoma center in Canada. It is a very large hospital in a very large city. I like to carry maps with me of everywhere I am going. Walking maps of the city, maps of the hospital, and so on. I went to PMH twice for consultation, once in 2008 and once in 2010. The good I thought was the expertise. The bad I thought was how hard it was to get replies back from doctors about appointments and results. My advice would be to ask for business cards from everyone, and contact information about who to call once you get home if you have questions. PMH, beyond the Sarcoma unit, has lots of resources such as childcare, social workers (yep, it gets pretty emotional and a good counselor can help), nutritionists and such so don't be shy about asking how to find these.
At this point I am hesitant to bring it up because you must feel so overwhelmed but I want to plant a seed of the idea of seeking a second opinion. When you read stories of others there is lots of recurrence and that can be the nature of the disease depending on what type you have but, and I say it again for emphasis, but, sometimes it is because the first treatment was not right. That is a lot of pressure to put on you right now. But its the truth. Because it is a rare cancer, treatment opinions may vary and you will need to decide what you feel is right for you. That's tough to hear isn't it? It was the case for me, a couple of times over. And others on the ACOR list will tell you the same. If you would like to seek a second opinion from the same clinic I go to in Montreal I would help you with that. It is a Young Adult clinic which I found had a bit of a different approach because it was focusing on people 20 to 40 who are raising families, and still have a lot of life to live. It's not to say you are choosing to have your treatment there, but it would mean another doctor looks at your case and gives you information which is always a good thing. And it is closer to you.
Other ways I can help you might be:
Sonia on the ACOR list, her Mom was treated by Dr. Gladdy so you might want to talk to her more about Dr. Gladdy and PMH.
Another person I met last year, Charlene, whose husband Angus had surgery for Sarcoma last fall at PMH, with Dr. Swallow would talk to you about how they coped. They had to travel and stay in hotels, go for tests at PMH and would probably have lots of experiences they could share.
Jessica on the ACOR list seems to be similar to you in a lot of ways and you might want to ask her specifically how she handled treatment and fears with her young children.
I met a woman last summer who was going to Ottawa for her Sarcoma treatment, I will phone her next week and ask her who she sees just for interests sake.
Now that I have probably overwhelmed you with things to think about let's consider you. How are you feeling? I still remember that deep in my gut fear when I had to tell my kids about my prognosis. How my husband and I felt, how we couldn't find words to share but would just curl up in each others arms at night and not be able to let go. Fear, such huge fear. It's natural to think about death, how could you not when you have been told you have cancer inside your body. Everyone finds there own way to cope. Find someone to write to (me, the ACOR list, yourself in a journal, a friend or family member) and share how you are feeling. I find it really helps to get it out there. No one is going to hand you the solution but by sharing openly and honestly we will help each other find the way. I like to find things to read too...I am a big fan of Kris Carr of Crazy Sexy Cancer www.crazysexycancer.com and the Cancer Crusade www.thecancercrusade.com. You might also want to search on Young Adults with Cancer as you have different needs at your age than someone older with cancer. I can lend you books too if you want instead of having to buy them. That long bus ride is a great time to do some reading. My husband does not go to all the appointments with me either, it's just not always possible, sometimes my sister or a friend goes instead. It's good to have someone with you always. I find I don't always remember the questions I want to ask, or I don't remember everything I was told so that second set of ears is important. And you need the support. Of course you will cry, and be scared or angry or a host of other feelings. Having cancer is complicated stuff. Be gentle and understanding with yourself.
If it gives you hope, my story seems complicated with lots of surgery, treatment and such in it, but currently I feel top notch healthy and am not held back in any way by my cancer. I do not take any medications, I have no side effects or impairments, I go 110 miles per hour living it to the fullest.
Sincerely, with kindest thoughts,
Teresa
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