Saturday 14 January 2023

Seven Months Later

Here is a picture of my latest library haul.


 I have other books on a waiting list that I specifically want, but so do a lot of other people. I am not 100% sure that I haven't already read the Elly Griffiths one, but since I can't remember, I likely should re-read it anyway.

I want a bunch of books because, seven months later, I am finally going to be having my radiation therapy for my breast cancer. Yes, you read that correctly. Seven months later. I was diagnosed in July of 2022. In two weeks I will be going daily to a hospital in a city two and a half hours from my home to receive five doses of radiation altogether. 

Here is what I am thankful for. My cancer is early enough  and a of a type that doesn't require more than five doses. Research has shown that five doses actually equals the old standard of three and a half weeks (you get dosed Monday to Friday with weekends and holidays off). So that is a definite plus.

I won't be driving (or asking husband to drive) this on a daily basis. That would be insanity. Instead, the hospital and the cancer programme has a deal with a hotel in the city where you can stay for a small fee during your treatment time and they also provide a shuttle service back and forth to the hospital. This is incredibly civilized and kind. It is also cheaper than having to build more facilities and outfit them to provide radiation therapy in smaller centres. Hence the reason for the books.

Here is what has caused me mental anguish (I am being serious here) for the last seven months. Initially it was hearing that I had a cancer that I never imagined I would ever have. But after absorbing that information, the worst part, even beyond the tests and procedures and needles and biopsies and surgery and all the other physical stuff was the waiting. Every test required a waiting time. Every test result required an unbelievable amount of waiting time. If "they" said it would take two weeks, it would take four, or five, or six. And each one of these waiting times was filled with doubt, fear, anxiety, and then self loathing that I couldn't just pull it together and put my big girl panties on and reassure myself that it was all going to be o.k.

The final test which was ordered by an oncologist in a town close to where I live kind of did me in, psychologically. He suggested that chemotherapy might be needed, even though the surgeon never once suggested it would be needed. The test results were not done in two weeks, as stated. In fact, it was discovered that the samples hadn't even been sent away, and they had to go to California for testing. So, the entire month of December (Merry Christmas) was spent waiting, wondering, doubting... and of course, as many of you know, agonizing over my sister's health scare (she is doing very well and making incredible progress considering her previous state). 

I finally found out the results this past week. No, I do not require chemotherapy. I know I am lucky. I know many, many, many people out there are not that lucky and do have to go through chemo. But to dangle the chemo possibility in front of me after seven months was kind of the last straw. But now I know for sure.

And here's what I also know for sure. Yes, we have "free" health care in Canada  (it isn't, of course, but I didn't have to pay for any of this out of pocket. Instead I paid with my taxes for my entire working life), but the lack of doctors, nurses, techs, proper facilities all contribute to the extensive wait times and lack of care. Heaven help a person who can't advocate for themselves, a person who is old and unable to make the phone calls (you can NEVER talk to anyone directly) and navigate the technology, a person who doesn't just have a basic support system at home to help them manage the fear and the anxiety. You may recall that when all of this happened, I didn't even have a family doctor (primary care physician), mine having retired and not replaced. I had to do the work to get a new one and the only reason that happened was because of my cancer diagnosis. 

So, this ended up being a bit of a rant, I realize. To end on a slightly more upbeat note, I will share with you that I am now officially "cool". I am sporting three tattoos! Nope, I didn't go out and get some meaningful life journey tattoo at the local tattoo parlour (of which there are many). In order to line me up perfectly and zap me with radiation, I got measured and triangulated and received three tiny dots of black on my body. This is so that each time I get my radiation, I can be lined up perfectly, thereby guaranteeing the best possible treatment. Yup, that's me, super cool!

It's a brighter day today, cold, but bright. I saw a snowy owl on Thursday, which gave me no end of joy. I do hope everyone has a nice weekend, whatever that entails for you. My one goal today is to put away all the Christmas mugs / cups and replace them with our usual, every day ones. This is the last vestige of Christmas in the house and it is driving me nuts seeing them. When Christmas is over, it's over for me. Feel free to chime in about any of the above books, by the way. 

46 comments:

  1. I'm glad your radiation treatment is scheduled now and that you can stay in the city while it's being done. I agree that waiting and uncertainty about the future are very powerful stressors. Wishing you good results with your treatment!

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    1. Yes, the hotel arrangement must be a big relief to a lot of people!

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  2. Before entering this comment, I stopped to write down the titles you've gathered. If you like Elly Griffiths, I figure I'll like everything else you've chose. (Good story, by the way)
    I've been your route and wish you didn't need to travel it, and for it to be such a production - traveling all that way.
    Good news - no chemo. Good news - they've learned to shorten the radiation period. I did the weeks-long version, although that was many years ago.
    Better news - it was many years ago! And here I am.
    Keep us up to date, and enjoy your reading.

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    1. Thanks for this comment! So very glad your experience was many years ago and obviously a success!

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    2. Should also add that I’ve only read one other Horowitz book and I can’t remember if I liked it! The Murderous Mayhem just looked like a “cozy mystery “, I have no idea about the author, and I’ve read all of Cornwall’s other books in this series.

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  3. My workplace provides various forms of charitable support for an accommodation 'hostel' close to a specialist hospital (in fact it is small family apartments with communal kitchen). An addition to money, volunteers go there about once a month to cook an evening meal for everyone staying there. We are told by tge people staying there that it is a godsend. I hope yours all goes smoothly and as comfortably as that treatment can be. (My nan had tattoos on her face for her cancer radiation treatment.)

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    1. Oh my gosh! On her face! Mine are just tiny little black dots, hope hers were tiny, too!

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  4. The waiting is the worst part. The best thing is that treatment methods are improving all the time. ((( hugs)))

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    1. Very true. My aunt died of breast cancer when I was very young ( not a blood relative). I wonder if things would have been different now.

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  5. Advocating for ourselves when dealing with the medical community is key. You did well to manage the process. That said, the stressors of the system are unacceptable (especially when you are not well to begin with). Sadly, the same happens in the US. Plus, the costs for the under-insured can bring financial troubles. I'm glad you got things sorted.

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    1. I’m actually surprised to hear that. I thought medical care was much faster in the States. Sorry to hear that.

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  6. My sister-in-law is awaiting a heart valve replacement. She's a 30-year diabetic with up to 6 shots a day so this is all serious. The information she now has is that the surgery needed (she's quite short of breath) won't happen until "sometime in February." (She lives in the U.S.) I guess what I'm trying to say is that one needs to be proactive and the advocate for oneself. That's what you have been doing and even though I can only imagine how awful the l-o-n-g wait has been through every step of your ordeal, you're doing great to have reached the state of being "cool!" Please do continue to keep us all updated. Hugs.

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    1. I sincerely hope things go well for your sister- in - law!

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  7. I am sorry you have had to wait so long and glad you will be having your radiation soon. I hope it all goes smoothly and you will be recovering at home before you know it. What a difficult road you have been on made worse by all of the waiting and complications. Stay strong!

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    1. This was a bit of a final rant for me. I’m well aware that things could always be worse. Thank you for your kind words!

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  8. Whew. That's huge. I am so grateful you are finally scheduled and do not need radiation. But you bring up some key points that I'm not sure people here in the states realize. It sounds like Canadian health care is fine if you are in good health and require minimum medical attention. But when you do -- and particularly when the need feels somewhat pressing -- it leaves much to be desired. This isn't the first story I've heard about serious issues and big delays around them. But seven months is such a long while and the agony of waiting is terrifying in so many ways. Sending all good wishes that everything goes well with the treatments, the hotel stay and that all is fully under control. You will be fine and you've got this. And it's almost over. Well done.

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    1. Ooops, you mean I don’t need chemo. The hotel stay will actually be very good. I love that they also provide three meals a day and the shuttle service to the hospital. I’m sure it’s not going to be the lap of luxury, but if I don’t have to cook, and there’s free wifi, I’m a happy gal.

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  9. What a journey you have been on a very hard journey. I do find even here in the states if you cannot advocate for yourself and keep track of things you get lost in the system. I used to read Patricia Corwell but I got to Blow Fly and I had to stop reading her. I dreamed about that for weeks ugg. I am reading Lousie Penny right now I was reading her one after another but needed a break from her, but I am back. I really like historical fiction. I find the mostly only fiction is the conversations that are written. Wishing you great success and peace when you are safely done and not reliving it daily.
    Cathy

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  10. Cancer journeys are not fun. I went through mine when Covid hit. I was diagnosed with "bad" cells in my cervix (not cancer but could lead to cancer). Was told that I would be in for surgery in 6-8 weeks. Then Covid hit and surgeries here in Saskatchewan were shut down. When they opened up again things were slow, and then the second wave hit and surgeries were once more shut down. Finally 18 months later I got called and in for surgery. That is when they found out the "bad" cells had turned malignant. It was caught at an early stage and all was gotten in my hysterectomy, but I still had to visit the Cancer clinic here in Saskatchewan. The clinic was going to see why it took me so long to have surgery and hopefully things are now changed. I do have to go in for the rest of my life to have a check up, but I can handle that (well getting pretty old to drive the 2 hours to have the specialist check me). We have a rather large building across from the clinic that people can stay in while receiving treatment which is a God send. The cost is minimal and they supply a bag breakfast and lunch. Supper is easily gotten as there is an eating establishment very close.

    Love your library books.

    God bless.

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    1. Oh my gosh- what a rotten time to require surgery. So very glad to hear it was caught and dealt with. Yes, yearly special mammograms will be a regular part of my future ( and infusions to help with osteoporosis which may get worse with anti- hormone medication). That sounds like a wonderful place where people can stay.

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  11. So glad you're finally getting started and will be able to put the radiation behind you. I don't know if you've heard of this resource, but http://www.cancerconnection.ca has been very helpful to me. I find the forums and people using the site very caring, supportive and knowledgeable.

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  12. I am always glad to see the support and Love you get here in the comments.
    They also give sensible advice.
    By the way, the books - that's quite a collection! Good for you !

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    1. I’m always grateful for the blogging community. I’ve not had a negative interaction with any one of them.
      I grabbed a bunch of books so I could make a couple of choices for the upcoming week. I’m not sure how many I’ll actually get through.

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  13. I cannot speak of the other books, but IMO you will enjoy Night Hawks. Having a place to stay close by the hospital is good thing easing some of your stress. Our medical system is beyond broken. Mr Man & I trying to navigate the system for his two upcoming eye surgeries to save his eyesight & it is more than frustrating. The other aspect of our broken medical system is the pharmaceutical side. So many of the prescribed drugs aren't available or if we do find, at a pharmacy an hour away or two hours away, which by the way we have to source as neither pharmacy or doctor do. There my rant is over :). I am glad to hear that Jade is recovering. I will send you lots of healing energy. As our favourite, Chief Inspector Gamache, likes to say, all will be well & all manner of things will be well. ... Mary-Lou =^..^=

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    1. Oh my goodness… I’ve been trying to reply to your comment and blogger just wasn’t having it! Had to use my phone instead. I’m sorry to hear you and your husband are also struggling with this system. And to add not being able to get the prescription as well! Thank you for the Gamache quote!

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  14. Waiting is hell. So very glad to hear that things are starting to move along now, Jenn. Very positive thoughts are winging your way.

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  15. You covered so many issues here that I hesitate at where to start this comment. First of all, I had radiation for BC (6 weeks daily except for weekends) back in 2000. It's not so bad. I chose not to have Chemo... and since mine was in the early stages, the doctor said this was fine. So far, so good. It's been 22 years. But my dear friend's BC just returned. She had a double mastectomy over 2 months ago and has trouble with the drains ever since. She also feels like she has had no support during this process with her medical doctors. Has had to wait too long, was not given a visiting nurse, and now has some swelling and pain, but has to wait to get a pcp appointment, etc. And she will need to get together with an Oncologist and Radiologist - which again takes longer than it should. And she worries about getting to daily radiation as she lives alone out in the country and not terribly mobile. I will relay your info about possible stays close to a hospital during treatment. Also my daughter tells me there are people (like Concierges) that one can get (not necessarily cheap) that will handle all your necessary needs between doctors, hospitals, etc. for you. They will make sure to advocate for you and not let you get lost in the system. I thought this was interesting and possibly well needed for those who may be disabled and not have family or friends to help.
    Good luck with your treatment. 7 months is a long time to have to wait. And as for the books you showed, I haven't read any of them. I do read Louise Penny.

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    1. Oh that is awful for your friend! I know here there used to be a volunteer driver program associated with the cancer society for people who needed rides back and forth. I wonder if there’s anything like that for her?
      I remembered when you wrote about your cancer history on a previous post and I always found that comforting. Thank you.

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  16. I don't even know what to say about the care system you are experiencing. It has to be so maddening. Can't blame you for being angry and ranting. I need a new book too. Maybe I will try one of the ones in your photo.

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    1. Elly Griffiths is the one author from those that I would recommend first ( I like to try to read series in order if possible). I’d also say anything by Ann Cleeves.

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  17. Oh, gosh, that is an age to be left on tenterhooks about your prognosis. I'm shocked at your experience to date but thank goodness you aren't in a dire situation! Your books will be good company - just don't be tempted to start reading before you go :)

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    1. It’s my experience, and I know there are many others in similar or worse circumstances. I recently watched a video about the state of the NHS in Britain. We are not an anomaly in Canada. Haha, I will probably only take a couple of books with me.

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  18. Wishing you the very best with your radiation.

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  19. Have you ever read The Boy, the Mole, the Fox and the Horse by. Charlie Mackesy? Sometimes the bravest thing someone can do is ask for help. It looks like you enjoy murder mysteries. I have an eclectic pallet. I do recommend Before the Coffee Gets Cold and The Secret Diary of Hendrik Grown 83 1/2 years old. I wish you luck with your radiation therapy and am thankful you do not need chemo.

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    1. Thanks for those suggestions. I’m thankful as well!

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  20. You've always been cool in my book. A snowy owl?? SAY IT ISN'T SO!

    I'm SO happy that you're only required five doses of radiation and NO chemo. That's really good news and also, the set up with the hotel close by with shuttle? Awesomesauce. I really do feel bad for people who don't have advocates or the wherewithal to advocate for themselves. Praying all goes well and you enjoy all. of your books while finishing up this portion of your health crisis. XO

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  21. Jenn, I had no idea about your cancer diagnosis, I'm so sorry I missed that. I KNOW you will come out of this a stronger and healthier super woman. SEVEN months...I'm sure you were unbelievably anxious. I'm so glad it's only a 5 day treatment and you can stay at a hotel instead of back and forth to the big city there....good luck my friend! ♥♥♥

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  22. Hi, just to say good luck with your radio therapy treatment. 7 months is a long time to wait. I had the genome test you mentioned, it's called Oncotype DX. Got a score of 37 so had chemo which to be honest wasn't as bad as I thought it would be. No sickness, just hairloss and the worse thing how my taste buds were affected. Fortunately my treatment from diagnosis to end of chemo was 6 months but with the state of the NHS I don't think that would happen now.

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  23. A lot of the problems you mention with your health care system are problems here, too.

    All the waiting is one of the most hellish parts of the cancer experience, it seems to me. I remember how hard it was when Gregg had cancer. Learning to live with low-grade terror all. The. Time. is what I remember most about it!

    I'm glad to hear things are going well for you. You've got this, Jenn. One day before you know it this will all be years in the past and you'll be 1000X stronger for the experience.

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  24. I will be praying for you. Hope all goes smoothly

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  25. Yay - no chemo! What a blessing. Those books all appeal to me, but I have plenty of mysteries sitting on my bookshelf that I should tackle before adding any more to my list.

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  26. 7 months is just a crazy time to wait.......wishing you all the best of luck with your treatment. Interesting books, I would love to read all of them. I have a couple of new book reviews posted.

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