Well I’ve been living my best life trying to wish away this dreadful disease but unfortunately I’m back to earth with a bump and confirmed recurrence!
I saw the oncologists yesterday but he was worried that the scan report from a few weeks ago was not accurate and wanted another one doing. (Had this been accurate my holiday last week wild have been cancelled so may have done me a favour.)
He called this morning to say that there had been lots of things (cancer) missed and that there is quite a bit of activity across my peritoneum. I start chemo either this Friday or next week.
The plan is to do Gem/carbo/Avastin again with naparabib (spelling) if the chemo works, so at least there is a plan.
I’m trying to push the devastation I feel to one side and just focus on the plan.
The oncologist has also offered to sign my pension release document which basically states I have under 18 months left. Although this will release some financial burden brought on by this illness sorting the mortgage it feels like I now have to accept that the shocking statistics that this disease has do in fact apply to me too! 😬
I think today maybe a bed and movie day.
Love to you all, sorry this is a really depressing post. Normal cheery service hopefully resumes soon.
So sorry to read this - that’s dreadful that your scan appears to have been misread - hopefully now you have a plan in place things will improve -though getting away on holiday was a good thing - it is hard when reality brings us down with a bump - bed and a duvet movie day sounds a good plan x
Dear Lisa, I am so sorry that you got unwelcome news but please do not despair, signing a pension plan does not mean anything sinister, look at how many of us on this forum are still here years after we were told we wouldn't be!
The waiting is awful but we will be thinking of you and sending lots of positive vibes. Don't apologise for not being cheerful today, this is the place where you can rant, scream or cry and we will understand. You are such a positive person and supportive to others and I truly believe that this attitude will get you through this horrible time. I want to give you a great big hug and hope you can imagine all the hugs and love we are sending. Stay positive and keep posting. Please let us know how you are getting on and don't forget second opinions!
I'm hoping this next lot of chemo will bring you lots more time with your lovely family and you can make loads more special memories I'm glad you're got a plan in place I dread that day when I'm given years and months.
What a pain. You have hardly had any relief these past 3 years and now you seem to be back to square one.
It seems so unfair. As soon as we find our new normal, we get a slap in the face.
At least your oncologist was on the ball.
CT, Pet and MRI scans are only as good as the doctor/technician reading them. I look over my scan reports carefully, and the difference in interpretation is amazing.
Fortunately, my last two reports were very incisive and I do know I am watching progression.
The luck of the draw in this disease is the biggest factor.
I tried being vegan and eating an anti angiogenic diet, I am a vegetarian anyway and have always eaten lots of healthy veggies and whole grains and I still get recurrence.
I am now in an eat whatever the hell looks good (as long as it’s vegetarian) mood and whenever I want.
Lots if ice cream and milk chocolate and even Pizza ( which I have not eaten in five years!)
I am totally comfort eating, thinking I am going to lose my appetite when I start treatments.
Yes, just when we think we are free, we find that we are caged by this disease.
I wish you luck in your treatment and relief from any discomfort.
Thanks Laura, on the whole I know I’ve been very lucky, when thinking of Vicki for example who was diagnosed at the same time as me.
I feel very grateful for the time I’m having but yesterday felt very low. I had my oncologist appointment in the morning and job interview in the afternoon, it was hard to get past the why should I bother mood.
I have come to the conclusion that this disease has a path that will not be stopped only delayed in me. So although I’ve tried restrictive diets and supplements/off label medication I think that enjoying life/comfort eating, whatever you want to call it is the way forward for me too.
I’m hoping for another chunk of time after this chemo round and hopefully more holidays.
Oh Lisa, my thoughts are with you. I hope the treatment works and the side-effects aren’t too horrid.
Lots of hugs,
Iris xx
Thank you, i’m Getting my head around it as the day goes on and chemo is sorted. Hopefully it will get rid of the tummy issues i’ve been having, thank you for your kind reply.
Hi Lisa So sorry to hear your news but if I may throw a bit of optimism your way..... I have had two recurrences and started on a trial of Olaparib .....currently enjoying my longest remission so far of 6 years this month...... your never know! The statistics were wrong for me (I have lasted 10 years longer than my best before date so far). Don't be written off. I was speaking to the sister at the local hospice the other day and she said that she often wishes drs wouldn't give times as she sees people who reach a marker and then seem to decline. Enjoy your movie - I hope you picked an upbeat one! Big hug, Kathy xx
Hi Lisa. What a bummer! It’s awful that your scan was misread but yet it gave you time and illusionary peace of mind for your holiday which was so important! I hope the horrible chemo will buy you a long stretch of good time. Xoxo
Not what you wanted to hear obviously. However, with the pension thing I would make it my business to draw it as long as possible to p@@@ them all off. Do your best gal.
Good luck with the chemo.
Best wishes
Fay
Totally xxx👍😘
You have the right attitude, Lisa. Take it one step at a time. Follow the plan.
Good luck with your chemo. Enjoy lots of treats & movies and be as nice to yourself as possible. 🤗
Thank you, vampire diaries and handmaids today, total bubblegum. 😁
• in reply to
Try “Anne With an E”, if you have Netflix. It’s beautiful.
I am so sorry to read this. I saw on one thread that a GP with a low grade diagnosis was using ibuprofen and the tumours had shrunk, I wondered whether that was one of the things you'd tried. Aspirin is also being trialled here in Swindon as an anticarcinogenic. I do hope the chemo is successful, Alex x
Thank you, i’ve been taking a once a day aspirin for quite a few months now. It may have made a difference. I’ll happily try anything that’s not going to have contraindications with prescribed drugs as i’m Feeling a bit desperate. 😬😬😬
Thinking of you, Lisa, and sending best wishes that the next treatment is very successful and then on to Niraparib for maintenance. And remember, no matter what anyone tries to predict, we are not statistics, and any one of us may do much, much better! xx Gina
Oh so sorry to hear this news Lisa! I can totally understand you feeling so low after having it confirmed, I’d feel exactly the same...but it sounds as though your team have a good firm plan in place and that’ll be starting quickly. And as Kathy has pointed out you can defy the (outdated) stats and she being a prime example of that, and I really hope you have the same brilliantly successful outcome after this treatment finishes.
I’m totally with you on the comfort eating! Why deny ourselves after all we’ve been through and as long as you’re eating healthy most of the time then you deserve those treats!
I’m sending huge hugs your way and all the luck in the world ahead of chemo, always available if you want to message here or IG 💕
Thanks Liz, very much appreciated. I’m sure all will be ok, i’m feeling far more positive today. It doesn’t matter how much you are expecting it it is just a shock.
I hope you are having a wonderful summer with your gorgeous family.
Lisa, sorry to hear your going to be. Doing chemo again, see if you are a candidate for intraperitinel chemotherapy, they don't seem to use in UK, but it adds up to 3 years plus, I did it probably 7 times plus, I've been cancer free over 5 yrs. My friend was stage 4, was given 6 months by other Dr, a year and a half later she is NED. My Dr is awesome, she's in Palm Springs CA. I don't know if,she can help if your in US. She's a doc, that just doesn't give up, she gives you whatever you can handle. Fight the Best fight you can. Hydrate, and eat. You'll make it. Prayers.❤❤Liz
I don't get it either, my friend given 6 months by other Dr treated by my Dr a yr half later NED, I can't believe your country is ok with so much loss. I would just try to be persistent, hopefully they will eventually get on board. Best of luck for the future. Prayers, Liz❤❤
Lisa, today the sun is hopefully shining and your inner self has woken to the joys of life. Your a strong lady and can do what needs to be done. Remember more holidays on the horizon with your loved one. ps. do you qualify for PIP payments? McMillan can sort this for you, every bit helps. Sending you a big, virtual, soft fleece blanket to envelope you. Sylvia X
I’ve receive PIP which helps with day to day stuff like cleaning etc, it has helped hugely as has the blue badge which I received in January. It kept me working when I would otherwise have had to give up.
I do feel more up beat today, you are totally right.
Hi lovely Lisa. So sorry you are going through this. I love your determination of putting all your trauma to the side and focus.
I know it’s devasting to see a document stating the 18 months. It’s only a piece of paper which the dr filled out so you can get some financial relief. Of course, you will prove the document wrong.
You will work through this treatment and come out stronger. All the treatments you listed have tossed all negative statistics out the window.
Stay as strong as you are. Feed your body with nutrients. We are all here for you.
Your cheery side is still there. Just taking a small nap while you absorb all this.
Best to you for a successful treatment and speedy recovery!
Thanks so much for your lovely reply. I feel much better today, had a little walk to the local florist for my cousins birthday and then had my Neice over for lunch. All starting to feel a bit more manageable. 🙂
So happy you’re feeling better today. Amazing how resilient we are. We have managed to find joy in the simplest of things again. This whole journey has taught me not to waste a minute on negativity. It has been such a mixed blessing.
As I have just been floating around the edges the forum for quite a while now your post just prompted me to respond. I went back to read all your interesting and humorous posts. It's not easy to smile at this blooming disease but it does help to retain positivity. I just want to wish you all the best for successful treatment with minimum side effects.
Thank you, ah my positivity is returning today. I just felt a bit trashed yesterday.
On Tuesday I had two things, the oncology meeting and an interview for the teaching job I’ve had on a yearly basis for the past two years.
I think was actually thinking have I got the energy to do both! Which I think made me feel worse, the job would finally be permanent, it’s only two days a week so has been perfect until now.
I'm so glad you feel perkier today Lisa. You had such a shock that you were entitled to feel trashed. I think you are a glass half full girl and you don't stay down for long. Keep smiling. X.
Sorry to read this. I think we are all the same in pushing reality to the back of our minds until we have to face it. It's the only way to get through really.
Anyway too right you should have your pension! It doesn't change anything about your health status but the last thing you should be worrying about is money. Hope things go well with the Plan x
This is sad to hear. Have you looked into Joe Tippins protocol? We are on it here, and if you care to, you can read the amazing success stories at mycancerstoryrocks on facebook. We will have our next MRI in a couple of weeks, and I'll share the results. God bless you.
Hello, I’ve looked into the COC and other off label drugs used. Although I’ve tried some I’ve decided it’s not for me. Thanks for your message and good look with treatment.
Ah Lisa, how gutting. I had a great response to that combo and didn't need chemo for another 3 and a half years after finishing. Hope it does the trick for you. Xxx
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