Hello - Stage 4 CUP

Hi, I'm Shelley, diagnosed in April with Stage 4 Mets in liver, lung, lymph and bone of Unknown Primary.

I've always been fit and healthy, a personal trainer and rowing coach and have done lots of endurance rowing events, setting records, winning races, being "the first" so it's been quite a blow.  

After several rounds of Carbo/Taxol chemo some of the cancer has responded but not my liver. But the C/T stuff got me strong enough so that I can now handle ECX chemo which I started last Friday. A few rounds are scheduled and then more scans to see if this stuff will work. I'm confident it will, apparently it's the big guns. :)

It's a horrible game being played with all of us but I can only be positive and look forward and enjoy the life that I have. I call it my "new normal" because it is just life as I've always known it but within a new set of parameters: hospital appointments and endless handfulls of pills and IVs of chemo.

Chin up. :)

 

 

  • Hello Spruitt, I'm sorry to read of your diagnosis and I sincerely hope it's an early stage and your treatment will get going soon.

    You're probably very aware of time now and just want to get started.  Use the time between now and then to prepare for treatment and put in place anything that will help make your life easier for yourself because chemo can mean you have days where even getting a glass of water is an effort.  I got friends to make me soup which I froze in bags so that all I had to do was drop a bag into a pot of boiling water and I'd have something hot to eat. In summer now it's less important and I always have fruit and salad things to hand instead, but the soup was an excellent idea before the weather warmed up.  

    Just look at each aspect of your life and see if you need to straighten it up a bit, it will keep you busy.  Stay away from the dark side of the internet, visit only support groups and blogs by others in a similar situation. Keep a blog yourself if that's your thing. I am a writer, it's carthartic for me and my blog (public) and diary (private) really help me express. My blog is www.shelleycook.co.uk if you want to have a read.  

    Don't read anything where you end up thinking the worst. Your oncologist will tell you the bad stuff (if there is anything) that you need to know at the right time and in the right way.  I cope by keeping positive.  Cancer has changed my life but it has not changed who I am and where it has changed what I can do, I've replaced those things that I can no longer do with other things that I can do.  I have new hobbies like baking and gardenting whereas I used to go and do heavy weights at the gym!!  Every morning I assess how I'm feeling physically and then decide how I'm going to play the day.  

    Once you're on chemo, keep a diary as the side effects usually work like clockwork.  So if you know that on day 4 of your cycle you're going to feel yuck, plan movies or something that you can do that takes zero energy. Save the bike rides and beach walks for the good days. Get rid of stuff in your life that depresses you, unfollow friends on facebook if you find they have negative attitudes to life. When someone tells me they don't like Mondays, I tell them how thankful I am to have a whole new shiny week full of exploration and adventure and stuff that I'm looking forward to do to fill it. I haven't lost any friends, but I probably have a few that hide from me on Mondays!!  

    Just look at what you can do, what you want to do. Slow down and do it. Tackling things, treatments, blood tests, endless needle jabs, with a positive mindset really helps me. I used to hate needles, now I have a place in my head that I go to whenever I'm being stabbed.  

    Use complimentary therapies!!!! They are amazing.  Get massages, etc. They are often offered free of charge at cancer support centres. I've discovered Reiki which I find so restful and helps me refocus my head.  

    You will have dark days but know, absolutely know, write it on the fridge if you need to, that they do not last. THEY DO NOT LAST. You will pop back out of the rabbit hole again.  I had a time just last week where I really thought I was so far gone physically that there was no way my body would recover. The mental anguish and the physical pain was massive. I went to places in my head I didn't know existed and they were dark. I used sleeping tablets in order to sleep through my nights and in my days I prepared myself for the worst. Then on Saturday morning I woke up, got up, made us tea, did other chore type things on auto pilot and only then realised I was alive and I had no pain.  I had come back from that place, the dark times do not last.

    Oh gosh, I could keep writing there is so much stuff in my head, but hopefully some of this here helps you!  

    Stay strong and when you look in the mirror smile at yourself because the cancer cannot stop you from being you.  Shel xxx

     

     

  • Hello Berd, have you had your biopsy results yet? Shel x

  • No not yet the 25th. Right about now im having mixed feelings i dont know if i want to know. But i know the sooner the better. Thanks for asking? How have you been? Hows your kitties? 

  • Hi Berd, after all the stress it will be good for you to know. I hope it is not bad news. I'm on the up again after a very long and dark trip down the rabbit hole. My new chemo is really rough and the side effects are tougher than the last.  On top of which my Henry Cat didn't make it. Outwardly he looked fine but he suffered significant nerve damage to his rear end which had affected his bowel and bladder and the vet could do nothing for him. We had him at home for his last night and he and I spent the whole night cuddling together, both of us on morphine, and despite praying for a miracle when I took him back to the vet there was no improvement, he had got even worse, and so we had to say goodbye to him.  Having to do that on top of it being my tough chemo week was really hard, I suffered the toughest time I ever have, but I eventually came out the other side and now have 8 good days ahead of me to feel great, get out and do things, before my next cycle starts.  I miss my Henry like mad but I'm stronger mentally and can cope with the loss now. 

     

  • So sorry to hear about Henry. Well you enjoy your break. How long are you gonna be on this new treatment? I hope it gets easier. Well you have a good day. Keep your spirits up. Or if you want to blog, tweet or chat on this forum i really enjoy hearing from you and im sure others do to. 

    Sincerely

    Berd

  • Hi again Berd and thanks for the kind words.

    Because my primary cancer site is unknown every round of treatment I'm on is somewhat experimental so the usual process is three rounds and then a scan to see how the cancer is reacting. This new treatment is a result of the last treatment not working sufficiently well. I really hope this on is working!  

    Next scan will be mid September so until them I've got to just keep taking the chemo pills every day and have my IV chemo every three weeks. I've had two rounds of the new stuff so the next round, next Friday, will be the last before the next scan.  

    I hope you are doing ok - try not to think too much about getting your results. It's better once you know as then you can put an action plan in place rather than just being in limbo like you are now.  Just remember, whatever it is, it doesn't stop you being you and it doesn't stop all of your life being as it is.  

    My few days away have been amazing. We went walking in the Forest of Dean. Whereas last summer I would have walked 15 miles in a day, now I can only walk five. But to be able to walk those five is a blessing and I know that all the exercise makes my body stronger so that it can handle the chemo and everything else thrown at it.  It also eases my mind and helps me go to great places in my head while I'm being fitted with cannulas or being subjected to examinaions!  

    Take care and have a great weekend.

    Shel 

  • Hi Shelley for all this great advice,you are so sensible and completely right about the Internet.at first I was really messing up my head reading all the doom and gloom statistics. Have got appointment with the Oncologist on Tuesday so hope to get treatment started soon.Will take your advice about the soup. Hope you are ok I will keep following your posts as you are positive and inspiring person. Best wishes Sue

     

  • Hi shel

    How you doing? Well i got good news that lymph node did not show cancer cells. But im still so sick. I dont see the dr till the 3rd. Im just hoping that they find out what's wrong with me. I hope your treatment is doing you some good. Nice to hear you got to get out. Well hope to hear from you soon.

  • Hi Sue, sorry for long silence, I had a busy week. Week 3 of my cycle is a strong one and I make the most out. Ate out every night it seems, lunches, afternoon teas and a fair bit of mooching around the shops.

    So, how did your appointment with the oncologist go? When are you starting treatment and what form is it taking? I hope you have a definitive plan and have been able to finally exhale and can now just focus on what you need to do. Let me know!

    I had my chemo today, third round of the ECX and so a scan in two weeks to see how I'm responding. I gained 2kg over the last three weeks so my oncologist did a happy dance. I just feel fat!!!! :D Shel x

     

  • Hi Berd I just wrote a reply but I can't see it on the page! So here's a re-type! It's great news about your lymph nodes. I hope they get to something definitive soon. Are they doing further tests on the biopsy sample or starting with new tests? Let me know! Shel x