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Post by tiffany on Jan 5, 2017 12:25:17 GMT
I know how you feel about injecting yourself Tassiedevil. I sometimes have to give myself an needle for three days in a row after chemo, in order to bring my white blood count up. I actually don’t have a problem injecting myself (although I don’t like it), it’s filling the needle with the medication from the vile that I have a problem with. I always get bubbles, and I have a hard time adding the right amount of the medication. Fortunately for me, one of my friends at work has offered to give me my needle when needed. She’s diabetic, so she’s used to filing the needle and injecting herself.
I have my first treatment of the year next Tuesday, and I have to admit that I’m not looking forward to having to get chemo again after a four week break. The neuropathy in my feet has been so mild, that I sometimes forget about it, and I haven’t had a foot spasm in weeks. I still have shortness of breath though, due to my red blood count being low. I’ve been told that there is a needle they can give me to bring my red blood count up, and I’m going to ask my doctor about it at my next appointment.
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joyb
Junior Member
Posts: 59
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Post by joyb on Jan 7, 2017 19:45:24 GMT
Hope everything goes well for you on Tuesday, Tiffany.
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Post by tiffany on Jan 11, 2017 13:18:31 GMT
I went to the hospital yesterday for my first treatment of the year, and I got a copy of the radiologist's report for my CT scan. I’ve read it a few times, and the scan showed that several of the nodules on my lungs have decreased in size or resolved, and that the rest are stable (meaning they haven’t grown). There are also no new nodules identified. In regard to the lymph nodes in the middle of my chest, the scan showed that there was a reduction in the right lymph node, and that the remainder of the lymph nodes are stable. My doctor told me that lymph does are harder to treat, which is why she wants me to get eight more treatments of chemo (16 more doses) starting with yesterday’s treatment. This means I will get getting chemo until the end of February, instead of the end of January as originally planned, however, if that’s what I have to do to get rid of this cancer, that that’s what I’ll do! As previously advised, the scan could not see the small masses along the chest wall, and the scan also confirmed that the cancer has not spread to any of my other organs!
I have to admit that I’m not happy about getting chemo again after a four week break. The neuropathy in my feet has been so mild, that I sometimes forget about it, and I haven’t had a foot spasm in weeks. I still have shortness of breath though, which I thought was due to my red blood count being low, however, my doctor told me yesterday that my red blood count was good, and that she thinks the shortness of breath, along with the chest congestion and mild cough I started to develop over the weekend, are caused by a weakened heart. The drug Herceptin can cause heart damage, which is why I go for an echo test (heart ultrasound) every three months. My last test was done last Friday, and it showed that my heart is slightly weak. It’s not so bad that I have to stop taking the drug, however, it may be the reason why I’m experiencing shortness of breath, and what is causing the cough and chest congestion. My doctor gave me a puffer to help with these symptoms, and so far it’s working.
I noticed during my chemo break that the hair on my head has really started to grow and thicken, however, my eyelashes and eyebrows have started to thin out. I’m sure that the hair on my head will start to thin out again now that I’m back on chemo. It’s too bad, as I’m really getting tired of wearing a wig, and would love to be able to cut and colour my hair so I wouldn’t have to wear it anymore. I also lost 2.5 pounds in the last three weeks and I think it’s because I haven’t had steroids since December 6. Now that I’m back on the steroids though, the weight will probably come back. Oh well. As long as everything else is good, these things are the least of my concerns.
Anyway, that’s all to report for now. I’ll let you know when there’s something new to report.
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Post by bet on Jan 11, 2017 15:06:03 GMT
Im glad you got your wish of a chemo free Christmas Tiffany and now its back to doing whatever it takes to beat it. My sister had extensive chemo and she's still suffering from it with hair and eyebrow lost. I'm happy for you that you've booked your tours and wish you a better 2017.
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Post by tiffany on Jan 11, 2017 16:46:11 GMT
Thanks Bet. I just noticed I made a mistake in my update. I only need to get four more treatments of chemo (eight doses), which will take me to the end of February/beginning of March. That would be eight in total since I started at the end of September. That’s much better than eight more treatments!
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Post by tiffany on Jan 26, 2017 13:08:46 GMT
Hello all,
As I mentioned in my previous update, my hair has really started to grow and thicken. I decided yesterday, on a spur of the moment whim, to call my hairdresser and see if she could fit me in for a cut and colour (using a natural dye). My hairdresser gave me a cute pixy cut, and, although it’s still on the thin side, it looks really good, and I think my hair will continue to grow and thicken, as long as my doctor doesn’t increase my Taxol dosage back to 100% . I was going to dye my hair black, like I used to, however, my hair dresser convinced me to go lighter, as my “bald spots” would be much more noticeable with black hair. So, I decided on a warm, chestnut brown colour, and I really like it. That being said, once my hair thickens, I will be going back to black!
All I have to say, is that I’m very happy to not have to wear a wig anymore, and it feels good to look in the mirror and see me again, and not a stranger. Now, if only I could lose the weight I put on in the last year, I’d be really happy!
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Post by chech on Jan 26, 2017 15:32:45 GMT
Chestnut brown! Love that! What a great suggestion from the stylist - to see how the black would work vs a lighter colour.
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Post by tiffany on Jan 26, 2017 15:49:07 GMT
It was a good suggestion. I always dyed my hair black before, and it didn’t occur to me that black would contrast with my white scalp. That being said, my hair is thick enough to cover my head, but, if it happens to thin out again, the lighter brown is softer and will make my scalp less noticeable.
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Post by tiffany on Feb 1, 2017 12:59:29 GMT
Hello all, I went to the hospital yesterday for treatment, and it was a long day as usual. I spoke to my doctor, and she told me that she’s setting up my chest CT scan for mid-March, and I should get an appointment date in the mail soon.
I followed up with her regarding the genetic tests she told me she wanted me to take a few months ago, and she said that she thinks she put my name on the waiting list, but would double check. I forget the name of the test, but they may be able to determine why my cancer is so aggressive, which may help us with coming up with a better treatment plan.
I also followed up with her regarding putting me in a drug trial. She said that it’s still an option, but she doesn’t want to look into it until I’ve completed both line two and line three therapies. Right now, the treatment I’m getting is considered line two (Perjeta/Herceptin/Taxol), and my back-up drug, TDM-1, is line three. Once all of these treatments stop working, we can look into a trial. Let’s hope that’s years from now! I also ask why TDM-1 is not covered by OHIP, and she advised that it is covered by OHIP as a line three therapy, but, because she had wanted me to take it as a line two therapy, it wasn’t covered, and Cancer Care Ontario wouldn’t pay for it. That’s why I have to take the Perjeta/Herceptin/Taxol first. The good news is, these drugs seem to be working for me right now, and, we are hoping the Perjeta and Herceptin will continue to work for me once I’ve been taken off the Taxol, which we hope will be at the end of March.
In my last update, I mentioned that my echo test showed that my heart had weakened, and that was the reason I was experiencing shortness of breath. I spoke to my doctor about this during my last treatment, and she advised that my heart was only down by one point (they use a point system to determine if it’s strong enough to get Herceptin), and that I’m still well within the range to get Herceptin. She also advised that while my heart might be the reason for my shortness of breath, it could also be caused by the chemo or the Herceptin, and that we really don’t know what’s causing it.
I noticed while looking at the calendar that I had surgery one year ago as of this Saturday. I can’t believe that it’s been a year already, and I can’t believe how much has happened in that year! I worked out how many doses of each drug I’ve been given since I started treatment last March, which I note below.
• Docetaxel (chemo) – March 15 to June 28 – 5 doses • Carboplatin (chemo) – March 15 to June 28 – 6 doses • Taxol (chemo) – September 27 to Present – 11 doses • Herceptin (monoclonal antibody) – March 15 to Present – 16 doses • Perjeta (monoclonal antibody) – September 27 to Present – 7 doses • Dexamethasone (steroids) – March 15 to Present – 16 doses
That’s a lot of drugs in my system! As you know, I will be getting Herceptin and Perjeta for as long as they work, but I’m hoping to be done with the Taxol by the end of March. By then, I’ll have had 16 doses of Taxol, and I’m ready to be done with it! Let’s hope my doctor does not decide to extend my Taxol for another four to eight treatments!
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Post by purvis on Feb 1, 2017 23:29:23 GMT
Tiffany I don't know how you manage to deal with all you have had to deal with this past year but I guess you really don't have any choice . Continuing to work and planning two trips in the future says so much for your resilience and stamina .When we think of heroes we often think of people who fight in wars and yet there are thousands upon thousands who are true heroes fighting daily the war against their cancer. It is a terrible battle but hopefully your victory is near. |Purvis
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Post by tiffany on Feb 2, 2017 12:43:36 GMT
Thank you Purvis. You are right that I really don’t have a choice but to deal with everything I’m going through. There are some days that I think I would like to stay home and stay in bed all day, but, I push myself to get up and keep going, because this is my life now, and I can’t waste my life by spending it in bed. I get up and go to work and do the things I would normally do, because I have to keep living. I just wish I could get back into playing badminton, as I really miss it. Unfortunately, between the neuropathy in my feet and the shortness of breath, I won’t be able to get back to it until I’m done with chemo, whenever that may be! Planning two trips is what I need right now, as I need to have something to look forward to. I just hope that I don’t have to cancel either of them this time around!
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daphne
Junior Member
LOVE Travelling!!
Posts: 58
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Post by daphne on Feb 2, 2017 13:41:31 GMT
Hi Tiffany, I think planning a trip or two, or having to look forward to travel, is the best medicine ever for you right now. Love your positive outlook, you inspire all of us!!! We are planning Switzerland and Austria and Greek Island Hopper in July 2018.... sounds sooo far away, but only 8 months till booking. I sleep, eat, breath those trips, I already started buying clothes (our end of summer sales now on) and packed them away. I cannot wait to meet new people from all over the globe and also seeing our Aussie and American and Canadian friends again (which we met on our previous trips). Enjoy your planning and dream and keep inspiring !!!!!! I know you must be a wonderful travel buddy, with lots and lots of interesting stories to tell, so I hope you are gathering those stories to share on your planned trips!!!!!
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Post by tiffany on Feb 2, 2017 15:50:42 GMT
Thanks Daphne. I’m looking forward to both of my trips this year, and they are part of what keeps me going. It’s nice to have something to look forward to. Are you going to Austria and Switzerland with Trafalgar? If so, I did that tour a couple of years ago, and, while I loved the tour, I didn’t like our tour director, Miranda. She somewhat ruined the trip for me, and I hope you don’t get her as a travel director. She was close to retirement on my tour, so you may not get her. I wrote a tour tale, which you can find under the tour tales section if you’re interested.
I went on Trafalgar’s Best of Greece and four day cruise tour in Sept/Oct 2015 and loved it. I’m you’ll love the Greek Island Hopper tour. July 2018 is a way off, but the time will go by fast, and you’ll be going on your tours before you know it!
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Post by californian on Feb 2, 2017 16:36:52 GMT
I admire you Tiffany, keep stronger every day and keep going!
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daphne
Junior Member
LOVE Travelling!!
Posts: 58
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Post by daphne on Feb 3, 2017 6:25:26 GMT
Tx Tiffany, I will go have a look on the Travel T, yes we are doing the same tour, very excited!!! A Travel Director can ruin the whole experience, luckily we have had awesome TD's so far!!! It would be rather disappointing if one person are able to ruin the trip/s one have planned for more than a year and don't even talk about all the money spent.... but as you say, hopefully she has retired
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Post by tiffany on Feb 3, 2017 12:31:42 GMT
Tx Tiffany, I will go have a look on the Travel T, yes we are doing the same tour, very excited!!! A Travel Director can ruin the whole experience, luckily we have had awesome TD's so far!!! It would be rather disappointing if one person are able to ruin the trip/s one have planned for more than a year and don't even talk about all the money spent.... but as you say, hopefully she has retired She’s the only bad tour director I’ve had in over 12 tours, and she wasn’t bad at her job per se, she just didn’t want to let any of us go off on our own, and she accused me of trying to take over her job when I told her that a few of us wanted to go to the old town in Geneva. If you read my tour tale, you’ll understand. She was very knowledgeable, intelligent and organized, and, the people who didn’t want to go off on their own didn’t even see that side of her. Personally, I think someone got lost on one of her tours, and, after that, she tried her best to keep everyone close to the meeting spot or coach, etc. It was a good tour though, and Switzerland is beautiful, although very expensive. I liked the people in Austria better though.
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Post by tiffany on Feb 3, 2017 12:33:45 GMT
I admire you Tiffany, keep stronger every day and keep going! Thanks Californian. I just keep going, and hope that the medication is doing its job. In the meantime, I just live my life as normally as possible. In fact, I have a busy weekend ahead of me with friends! Have a good weekend!
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Post by singletravel on Feb 11, 2017 3:06:29 GMT
You are an amazing lady. An inspiration to so many.
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Post by tiffany on Feb 13, 2017 12:23:35 GMT
Thanks. I’m actually not feeling that great today. I woke up at 3:00 a.m. with an upset stomach, and thought I was going to be sick. I took one of my anti-nausea pills, which helped for a couple of hours, but I’m feeling a little nauseas again. I met a friend for dinner last night at a new restaurant, and while the food was good, I think it’s what’s making me feel sick now. I’m also really tired due to the lack of sleep I got last night, but I couldn’t call in sick today as my boss is leaving for vacation on Wednesday, and we need to get a lot of work done before then. I’m hoping it will pass soon!
On a positive note, my hair has really grown since I cut it almost three weeks ago. I just wish it would thicken up a bit, but I don’t think that will happen until I’m done with chemo.
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Post by bet on Feb 14, 2017 8:00:43 GMT
Keep fighting Tiffany and thinking of Spain and Croatia.
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Post by tiffany on Feb 14, 2017 12:23:12 GMT
Thanks Bet. I am feeling better today, and looking forward to Croatia and Spain!
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Post by tiffany on Feb 22, 2017 13:12:10 GMT
Hello all,
I went to the hospital for treatment yesterday, and it was another long day. It was a zoo in there yesterday because Monday was a holiday. One elderly lady came into the clinic around noon and was crying. When the nurse asked her why, she said it was because she had been there since 9:00 a.m. and that the wait was too long for her, and that she wouldn’t be coming back. They had to call the doctor to come to the clinic to calm her down, and to convince her to continue with her treatment. They told her that she could come into the clinic for 10:00 p.m. going forward, so that they day wouldn’t be as long for her. I understand how she feels as I find the days long, and I feel cranky after being there for seven to eight hours, so I’m can imagine how long it would be for an elderly lady.
I met with a new Fellow from Princess Margaret yesterday, who will be working under my doctor for a little while, and he was wonderful. For the first time since I was first diagnosed I got a doctor who answered all of my questions in a clear, straightforward manner, and he didn’t tell me that I was cute or funny for asking my questions, which my oncologist does, and I find to be condescending. I hope he’s placed at my clinic for a while, as I would like to see him going forward. He was very knowledgeable, and explained things to me that my doctor was always in too much of a rush to answer. As an example, I’ve been wondering for a while why they haven’t sent me for a PET scan, as that’s the standard in the US, and before him, I was told I don’t qualify, but never told me why. He advised that in Canada, they only do PET scans for people with colon cancer, and for people who they know has cancer, but they can’t find it with other scans. PET scans use a special dye that has radioactive tracers that are injected into a vein and absorbed by your organs and tissues. When highlighted under a PET scanner, the tracers help your doctor to see how well your organs and tissues are working, and light up cancer. The problem with PET scans is that they also highlight anything else that’s inflamed, so that they are not always accurate, and, they give off twice the amount of radiation as a CT scan, so they don’t like to give them often. He also answered a lot of other questions, and told me that he thought it was great that I was so knowledgeable and that it was empowering. I think my oncologist is used to dealing with people who don’t want to know anything about their condition or medication, etc, and just do what they are told, and she doesn’t like it when I ask her too many questions.
I also found out yesterday the they have a neupogen needle that comes in a pre-filled syringe. As you know, I have to give myself this needed for three days after receiving chemo, and I have always found filing the siring to be very stressful. When I mentioned this yesterday, they told me that they do have a version of the needed that comes in a pre-filled syringe, and they prescribed that to me going forward. This will make giving myself my needle much easier and less stressful.
My oncologist also advised that they put me on the waiting list for genetic testing, however, it may take a few months to get an appointment. I’m just happy that she finally remembered to do this, as she told me that she would be doing this last September! I understand that she’s a busy women, and has a lot of patients to tend to, however, I’m her patient too, and I feel like I deserve the best care she can give, like all of her other patients, and I shouldn’t have to put my treatment on hold because she’s too busy to remember to do the things she said she’d do.
I also finally got a copy of my pathology report, as well as a copy of the scans I did last September. I’ve been asking for a copy of these documents for months now, however, my oncologist kept telling me to get them from the girls at the front desk, and they were always too busy to get them for me. When I mentioned this to the new Fellow, he told me to go to medical records, where I could get a copy of my file history. I did this and got a copy of everything I wanted in 10 mins. I don’t understand why no one told me this before!
Anyway, that’s all to report for now. I’m just counting down the days until my CT chest scan in March, in order to determine if I need to continue taking Taxol. The Fellow was fairly positive that I would be done with Taxol by the end of March, but my oncologist doesn’t want to commit until she sees my test results. I told her that if I need to take Taxol for another three months, that I’m okay with that, however, I would need another chemo break when I go to Europe at the end of April, which she was okay with. I guess we’ll just have to wait and see!
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Post by purvis on Feb 22, 2017 14:50:00 GMT
Tiffany: My family doctor advised me to talk my husband into a pet scan so as to determine the extent of his cancer. When we thought of buying a new home we decided it was time to have this scan done. The results were devistating so we packed up and moved from BC to Alberta to be nearer to my eldest son. There was only one pet scan in the lower mainland of BC and it was at a private clinic so was not covered by prov. health care or our company health plan and the cost 14years ago was $2,500.00 out of pocket. When I asked the receptionist at the desk what people who need this scan but can't afford it do she said they just do without it. Sounds like you finally got a doctor who takes the time to answer your questions without making you feel like you're wasting his time. Most cancer patients never get this believe me. I have lost many family members from cancer and none of them got the information they needed. Purvis
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Post by tiffany on Feb 23, 2017 12:27:24 GMT
Hi Purivs, I was told that the cost of a PET scan in Ontario right now is about $1,500.00. I would have paid this out of pocket if my doctor thought it would be worthwhile, but, after talking to him, I don’t think it’s necessary. Besides, I need to limit the amount of radiation I’m exposed to right now, and since a PET scan releases a lot of radiation, it’s probably for the best that I don’t get one right now. It is a very expensive scan though, and it’s sad that people who do need one but can’t afford to pay for it have to do without. What can you do though. The demand on our health care is getting higher, and there’s not enough money to pay for it. I was just reading an article the other day about how our health care system can’t afford to keep up with the baby boomers getting sick, and that they really have to cut back in order to find the money to support the baby boomers at they get older.
I am glad that this Fellow is now at our clinic, and I hope he’s there for a while. I think he should be working under my doctor for at least six months, and I hope to see him going forward. I prefer him to my oncologist.
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Post by tassiedevil on Feb 27, 2017 4:03:11 GMT
Sorry, it's been awhile, but here's a brief update.
I survived the US and managed most of what I wanted to do there and arrived back in Australia on 25 January. A couple of days after arriving back I started my 8 three week cycles of chemo. Each cycle consists of day 1-14 having treatment (unlike Tiffany my chemo is in tablet form and have multiple tablets morning and evening) and days 15-21 as recovery.
A week into cycle 1 I ended up in Emergency with severe stomach pain and cramps that moved down into the abdomen. I was diagnosed with gastritis and was treated accordingly and sent home quite a few hours later. I was grateful day 14 fell on a public holiday here as I felt terrible (nausea and just general 'yuckiness') as I didn't have to worry about work.
Before I start each new cycle I have an appointment with my oncologist and she was happy with my bloods and overall how I handled the treatment, despite the one off day and said go ahead with cycle 2, so took that mornings medication. Late that afternoon, after I got home from work, I got severe abdominal pain again, so off to emergency once more. I showed them the letter from my visit there a couple of weeks earlier and while they were reading I started vomiting so got rushed through. I was hooked up to an IV drip and given anti nausea drugs and morphine. They rang my surgeon and he said he wanted me admitted. When pain and nausea settled down they did one other thing he asked for, they inserted a nasogastric tube. That was not pleasant! It took 3 attempts to get it in!
The next day my surgeon came and saw me and suspected it was one of two things, intestinal adhesions (caused by last years surgery) or intestinal inflammation (caused by chemo). If it was the first it would need to be treated by surgery (within in the next few days and it would be major surgery, bigger than last years and not by laparoscope) and the other by management. You know which one I was hoping it was! I was immediately moved to the surgical ward and was prepared for a contrast CT scan. This was the only benefit to having the tube in, they were able to inject the iodine straight into the stomach. I didn't have to drink the not so pleasant stuff!
The following morning my surgeon came in with the results and it was good news! I had inflammation! I was then moved again, out of the 5 bed room into a private room where I stayed for the next 3 nights until I came home.
My oncologist also paid me a visit while in hospital and said not to go back onto the treatment this cycle and will discuss where we go at our next appointment. She is fairly sure I won't go back onto the treatment as she beliefs the benefits from it won't outweigh the physical pain and discomfort (and the possible long term side affects it could cause) that I will go through.
It's hard to believe I was in hospital Saturday and went to work today, Monday.
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Post by tiffany on Feb 27, 2017 12:24:51 GMT
Tassiedevil, I’m so sorry that you had such a bad reaction to the chemo pills, but I’m glad that it’s not intestinal adhesions and that you don’t need surgery again. I’m also glad that you won’t have to take the chemo pills again ,and I hope that your oncologist comes up with a better treatment plan for you. You’ve been through a lot during the last few days, but I’m glad you’re back at work today. I hope it went well for you. Keep us posted regarding your recovering.
I’m glad you had a good trip to the US. Are you planning any future trips, or waiting to see what your new treatment plan, if any, will be like?
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Post by purvis on Feb 27, 2017 15:02:59 GMT
Tassiedevil:Thank God your recent health problem happened after you had your holiday and were back home where you were treated by your own doctors and not when you were traveling the USA. Happy to hear that it wasn't the worst of the two problems and that you were able to return to work on the Monday. Purvis
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Post by tassiedevil on Feb 27, 2017 22:16:46 GMT
Tiffany, I don't have any travel plans for this year. However I am organizing a trip to the Gold Coast (Australia) for next year to see the Commonwealth Games. Got my name on a list at a few places to stay. April I can apply for tickets to events. I went to the games in Melbourne in 2006 and enjoyed them so as they a re back in Australia I thought I would go again.
I'm glad you've found some pre-filled syringes, that will take out most of the hassle. I'm glad my Clexane came in pre-filled syringes. I did have one syringe that the plunger got stuck and wouldn't move. I had the needle in me for a few minutes while trying my hardest to inject myself. I almost rang my brother to come up to my room (we were in Disney World) and help me with it when it finally moved. I had to use a lot of force and was worried that I was going to push the needle in too far (I had, and still do, a very thin fat layer and it was bad to go into muscle).
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Post by tassiedevil on Feb 27, 2017 22:18:45 GMT
Thanks Purvis. I too am glad it happened here and not the US! I am feeling quite good, a little tired, but feeling good.
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Post by tiffany on Mar 3, 2017 12:06:03 GMT
I was able to get my CT Chest scan moved to today, so that my doctor will have the results by my next appointment on March 14. The waiting will be difficult, and I can’t wait for the results. I hope they are good!
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