Feeling very low for for the last few days, my 3rd chemo/taxol affected me a great deal more than the first 2, the fatigue was extraordinary and knocked me off my feet, CT scan done I am now waiting for my appointment with the surgeon, he will decided whether I am suitable for an operation or not, or whether to just continue chemo. The appointment is only another 7 days away but feels like months away, I can't relax or concentrate on anything, I know my best chance is an operation and more chemo, but because I am stage IV I am also aware it may not be on offer.........and that terrifies me. ( the surgeon said I was not well enough for surgery initially)
I just keep crying which is not helping anyone, how do I survive the next week without going completely insane! and if its bad news how do I not break down at the appointment and make a complete fool of myself. I was so positive at the beginning of diagnosis, but the enormity of it all seems to have engulfed me to the point where I feel like I am drowning, someone please throw me a life jacket!
Sorry for the self pity..........I have a lot to be thankful for, just can't for the life of me appreciate it all at the moment.
Virtual Hugs to all of you extraordinary Teal sisters!
So sorry to hear this Lyn, I'm grade 4 ovarian cancer, have 2 more treatments of Carboplatin/Caelyx to go, been feeling great and things are looking positive! I know full well what you mean re waiting for scan results but you WILL be ok, praying for you, God has brought me through this so far and he'll do the same for you! They said they couldn't operate on me either!xxxDawn!🐞🌺🐞🌻🌹🌻
All you can do is be kind to yourself and try and distract yourself until the appointment - you could try and speak to your CNS ahead of it to see if your scan results available so at least that would be one less thing to be worrying over and might help you pla m what you’re going to say in appointment - maybe write down a few questions to keep you focused on it though I think we all break down from time to time and the staff are used to handling it - it’s hard to be always hopeful and upbeat so I just go with how it is on ajy given day - it is rubbish and sad and everything in between so thinking of you and wishing you peace x
Hello Coldethyl - Thank you, my CNS nurse said that my CT scan results would be discussed at the next MDT meeting and then the surgeon decides on a treatment plan based on the findings. Have a great day xx
Mine has sometimes rung me after the MDT with results so that I’ve been able to plan my conversation with doctors - not that it ever comes out as it was in my head! It’s hard not to worry but I’m slowly learning that worrying and looking too far into future just stops me enjoying the now which is all any of us have for certain - hope the chemo fatigue etc goes soon x
Distraction, Distraction,Distraction. Try to have little treats planned even though you are very tired. Things that you know you get enjoyment from. Sat in garden watching clouds, birds if you don’t feel up to much. I was also told inoperable and 3/6 months only 2017.
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Hello Rosegib - yes treats! Good plan!! ............just what to buy and how much to spend to concentrate on! When the going gets tough the tough go shopping!! Thank goodness for the internet!! Lyn x
I was initially told my tumour was too big for an op but after four chemo I did have it. Sometimes operations are also not feasible because the tumour(s) are close to major blood vessels and an op would endanger your life or the tumour is stuck to the bowel or other important organ in such a way an op is too risky. Or even because your general health is so poor a major op would be inadvisable. Waiting for results is so very hard especially as whatever is on that scan is now already on that scan, just you don't know what it shows. Best of all is to be outside, if you can manage a short walk, looking around, really looking or even sitting in the garden. Also, see if you can distract yourself, if you're well enough perhaps a trip to the cinema to see a film, if you don't feel well enough maybe a film on the tv. Maybe invite a friend to watch a film with you and not only do you get lost in the plot you can then spend time discussing the film.
You could also try mindfulness, I think there's an app for this called Headspace which is initially free.
Every moment not spent thinking about cancer is good for your mental equilibrium and the more moments you can spend thinking about something else, the more easier it becomes. There's much to enjoy, try not to waste it worrying, easier said than done I know.
Thank you January -2016 for your advise, I am trying to stay upbeat but I can't get past the feeling that I am kidding myself! Once the surgeon tells me whats what I think I will be happier, just wish it was tomorrow. Patience never was my strong point.!! Lyn x
Hi Lyn, I think most ladies who are here have experienced this feeling. I agree that the main thing is to try to distract yourself from worrying too much. I find that it focuses me, so I knit and sew, shop on the Internet, go out with friends and think about other people I know who are having a hard time.
Planning questions for the consultant is very sensible - I can see their hearts sink when I reach into my bag for my iPad, but it’s the only way I remember what I want to ask - I make notes all through my chemo cycle.
Do you have someone to go with you - I find it helps to have my bloke who can tell me if I’ve forgotten something and to remember the answers.
I’m sending love and best wishes for your results, Ali x
Dear Lyn, so sorry your feeling so frightened and worried, this disease is awful in every respect . Seven days feels like an eternity. We don’t know how we cope , but we do . I got some Valium from my doctor on my oncologist recommendation , also got mindful meditation on YouTube, anything to distract. :when your going through hell, keep going : xx
Try and plan a few things maybe a day to the beach even layer up get some walks in I find the sea air calming and clarifying, would you book a reflexology session or a massage, I use crystals too clear quartz is generally good or aventurine its strong healing energy for the body,.. it balances erratic emotions. I hate waiting for scan results I love when they just do an Xray and you know that day, maybe try a lavender bath and herbal tea at night to help sleep, rescue remedy, maybe a drop in yoga class, and xanax and valium are good for the day before and day of results. whatever you find that works do it I have a ct soon I hate them I even hate the drink and injection and the waiting to go in then the waiting on results its awful. good luck with the results
Hello cooksd and all of you lovely ladies that have replied to me..........just got a phone call from the hospital, my appointment has been cancelled for the 28th, seems the surgeon has decided to go away for a week (bank hols) - absolutely gutted!! Surely he knew he was going on holiday, I made the appointment weeks ago. Does anyone know if I can ring and ask for CT scan results myself to give me an indication of which way things are likely to swing in favor of - Operation or more chemo? Many thanks Lyn x
I’d get in contact with your CNS as she may be able to either pass information on to you or ass you to a list this week if results in - you do wonder whether they have any conception of how difficult this all is - my onc only works Monday at our clinic so any bank holidays just add extra week’s wait on automatically x
since day one " couldn't organize a P**S up in a Brewery........total shambles! I have left messages for CNS to ring me ( clinic today) so not holding out much hope, my oncologist overseeing my chemo is also away the same week as my surgeon...just brilliant!!
Just to say that breaking down during your appointment is NOT making a fool of yourself! I have cried my way through every appointment i.e. diagnosis, treatment discussions, occupational health, chemo sessions - even at the dentist when he asked about my condition. It's not weakness, our worlds have been turned upside down and we are wrung inside out, facing the biggest danger we can imagine. Cry away if you want to.
I was told the same about my operation initially. I was then told I needed an extra chemo session before the surgery, taking me to 4 rounds. I then had surgery during which (for reasons not fully explained to me and still not understood, though I was told it was due to lack of ICU bed) the decision was made not to continue and I was stitched up again. I cried loads after that one, with a fair amount of swearing and cursing thrown in. I then had two more chemo rounds followed by successful surgery.
You can do it, just do it your way, whatever way that might be x
WOW and then WOW!!! stitched back up! Not sure I would handle that scenario at all well. Well done you for not sticking a knife in someone! I am glad that eventually you had successful surgery and that you are continuing to thrive......onward and upward!!! Lyn x
Hi lyn my sister is also a 4, eat much protein, drink fluids take up something like reiki, which helped my sister considerably. Look at the physical, has any of your symptoms disappeared, has your ca 125 changed? My sister was quite sick at diagnosis, but over 3 strong chemos her bloating went away, her appetite got better, her stomach shrunk, her clothes fit again and then her ca 125 went from 2791 to 300. Major surgery and now on 8th chemo. Within 6 months of aggressive treatment and major surgey she is now no evidence of disease, free. So evaluate that will help you while waiting for the results . Go out in the sun, surround yourself with love. Xoxo nancy
Hello Nancy Thank you, I was very breathless at diagnosis in May and the surgeon said he did not think I was well enough for surgery, mine was such a gradual decline I didn't really notice it in myself, we all lead such busy lives that we often neglect our own well being. After 3 chemo and a starting CA 124 of 1486 (i will never forget that number) I am currently at 308 and feel so much better. When I see my surgeon in early September I am hoping he thinks surgery is now feasible, but I am prepared for him to decline again, just need to get a firm treatment plan. I am very happy for your sister, long may her NED continue. Lyn x
Lyn the numbers speak with the ca 125, what a great number now because it represents a drop in the cancer, even before my sister had her follow up scan that showed huge response and now surgery a go, she was told the chemo was working because of the big drop in her ca 125. Hold onto that, that your number has declined significantly as well. She had 3 rounds of carbo/ taxol/Avastin before surgery and now an additional 5 to knock off any rogue cells. She was breathless, had ascites and lack of appetite which brought her to the doctors and the diagnosis. Sending you positive healing thoughts and my cheer that I do everyday for her, let's go chemo. Xoxo
Please remember that chemo does affect our emotions. Its easy to become depressed with it. Bank this in your mind and whenever you feel poorly or feel like a weep do a visit to the bank. The low energy levels that chemo produces cannot be understood by non chemo treated. Big thing is if you get up in the day or night from bed please give yourself a few minutes to get the BP stabilised. Many have life threatening falls getting up at night and we know its not good for women (or Men). Funnily enough they call it a crash when your blood cells are not carrying enough oxygen but it is part of the treatment.
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