My Ovacome
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Update - CT scan today, continuing Olaparib and 30 days in, of cannabis oil!

Hello lovelies,

Seen some of you over on FB and have even rejoined some of the OC groups & seen you on there. Left them previously as it seemed all doom and gloom. Maybe I’ve grown a second skin in the past year and don’t let it breach my emotional barriers too often. Having said that you only need to join a few groups and it’s impossible to keep up, and a massive time waster a lot of the time! My concentration span is appalling.

My current status (Jan 2017) is that the Olaparib/Lynparza is likely not working for me. My count & symptoms have continued to increase. Next step is likely Chemo in March I think... well that’s the oncologists plan anyway.

I’ve been taking Rick Simpson cannabis oil since the beginning of December as I’ve heard so much stuff and am being nagged by family and friends and let’s face it what have I got to lose?!

We were very lucky and found a good source almost immediately. My tolerance levels were zero initially and so I felt really stoned but I had started to build some resistance I thought. Except I threw up big time last night and haven’t felt quite right since. Zero appetite. Am trying to eat well/alkaline/veggie etc but it’s not easy when you don’t want anything.

Pleural effusion def worse. Can hear the crackling as I lay down to sleep. It’s horrible. I’m trying to walk a bit bit not gonna lie, it’s a massive chore!

I’ve got my supplements, am drinking water when I remember. Zero alcohol as I def don’t want to mix with the cannabis! 🤢

I’m feeling fearful a lot lately. And emotional. Crying way more than I used to. Can’t work out if the oil affecting me this way? I cried at the thought of eating dinner the other night. I felt drunk, disorientated and overwhelmed. I’m reverting to a baby!!

No real point to my post as such, I guess it’s a general update, an acknowledgement of my fear (which escalates as I have the not-so irrational fear of things suddenly taking a serious downward turn...) believe me I’ve thought a LOT about dying lately 😢 and I’m also intrigued to know if anyone has delved into cannabis oil? And their experiences of it. I’m serious. I’m finding it so hard to discuss due to the continued illegality of medicinal cannabis. (Please note I’m not referring to the legal CBD oil you can buy over the counter in the U.K.)

I hope this finds you well (I know it doesn’t overly but it makes me feel better if I say the sentiment). Sending you all big hugs. I def need them today. Am low but feel bad as so many others are struggling far worse atm. I really want to find my joy/laughter & fun carefree side again. As my husband said it’s not lost it’s just hiding for now. See. I’m blooming lucky I have a good one that I love to bits. See I’m smiling already!!

Much love all... xxx

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Hi love

Have been reading your posts because we are so similar I began my journey end of march stage 4 peritoneal cancer 3 lot of usual chemo debulking and 3 more chemo ended in September with last one with avastin ca125 was 17 in September but is going up now 38 waiting for a scan date have heard it can go up on avastin but my oncologist said she as never heard about it going up on avastin when she said that I have felt sick with worry since and am also laying awake at night thinking about dying it's just shit pardon my French but it is.

All I can say to you is as soon as you start to think about it stop and think of something else I have to or else I think I would go mad.

Stay positive my love there are other treatments available so my oncologist keeps saying.

Trishx

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Hello Sarah

Sorry to read olapRib is likely not working for you. Do you continue to take it until March, when you start chemo. I wonder why. Maybe it’s time to seek a second opinion once you gab the new plan

It’s possible of course the cannabis oil is the cause of some of your mental issues. Might it not be worth dropping it for a while? There are two members here who seem to know a lot about it, LA and K. Maybe you could private message them.

All the best

Helen

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Thank you Helen 😘

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I can't comment on olaparib or cannabis oil as I have no experience of either, but I just wanted to say how sorry I am that you are feeling so rubbish at the moment.

I think if we're honest, we all have our down times, especially when we have symptoms to contend with as well. It does sound as though your team have a plan so do try and focus on that if you can (!!!). You will get through this, just do whatever you need, whether it be crying or ranting - we will be here to support you.

Draw strength from your hubby, he sounds like a good one. As mine says when I'm having a wobble, it doesn't matter what the problem is, there's always an answer, we just have to find it and we can do it together. Sending you much love and hugs. Ali xx

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Ah your hubby sounds lovely Ali. Mine hates seeing me sad and crying xxx

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Mine too, but at least it shows how much we are loved and cared about. Xx

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Sending big hugs 🤗 🤗 Sarah xx💐💐

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Big hugs Sarah, sorry the Olaparib isnt working for you. Not sure what to say about the c oil, perhaps its cos I have a hubby who is dead against it, probably due to his occupation lol. Anyway I do hope things improve for you soon. Much love, Kathy xx

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Kathy, hope you are feeling brighter now. I’m not an all embracing fan of the C oil but what choice do we have in the end? I do feel already that time ticks so fast, & with an aggressive strain you just don’t know what to expect sometimes huh xxx

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I'm pleased you found a supplier, I have to say I didn't have any problems mixing it with alcohol, not in the same glass, but a glass of wine later. I've dropped the oil at the moment as just feel a bit queasy with everything and not sure how good it is with morphine lol.

Big hugs to you, and hope you get some great relief from the oil. The UK Government has a second hearing next month to discuss cannabis on prescription for medicinal persons in limited groups, generally MS and cancer.

I wrote a funeral plan the other week, and then I thought why, I won't even know lol

LA xx

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Just seen this after our other conversation!

Yes, I’ve been thinking about a funeral plan, not that I feel I need it right now BUT we have to face up that we are more susceptible than others and I guess there’s an element of it being what we want but ha ha yup you’re right we won’t be there, we’ll be off exploring in the other dimension having fun! Well that’s my plan anyway!!! 😘

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I can really relate to your post as am having a rough time on my clinical trial-feeling trapped by the dreaded needles and continuous complications, Just sitting and crying and feeling hopeless. I guess we just have to soldier on.

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Neona, am sending you a big hug as I’m feeling much brighter today but I absolutely get that treadmill of never ending appointments and needles and treatments with seemingly no reprieve huh. All I can say is hang in there, we’re all behind you - with warm encouraging words and a hug xxx

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Sarah I agree with Helen that it might be worth stopping the cannabis oil for a bit as it may be having a detrimental effect on your mood. I speak from past (a very long time ago) experience. This post just doesn’t sound like the Sarah I have got to know over the past year and then some.

You say people have said take it and you then say what choice do you have... well hun you have the ultimate choice. To stop what is not harming your mental health. They mean well no doubt but when someone is vulnerable this stuff is really not helpful to put it mildly.

That is soapbox time over. If the Olaparib etc is not working there are lots of other things to try. You have private cover which is a big plus. Your man there sounds like a real hero so another reason to be cheerful. I know it is not easy to be positive all the time, and you have every right to feel down, scared and needing a boost. Cannabis oil is not the boost trust me. I am sure there are lots of people out there who will say oh but cannabis oil really worked for me, my friend, my this and that ..... but it doesn’t seem to be working for you if you feel this way at all.

Are you still doing yoga? That and any other wellbeing treatments may help you feel more like the real you.... I would also advise you to be kinder to yourself about diet. Eat what you fancy for a while and don’t worry about alkaline or any other stuff. Plant based and fresh is good. Just let yourself be what comes instinctively for a bit and see what other treatments will work for you when you are stronger. You have had a hard time. Olaparib does not work for everyone and it is not the only tool in the box.

Take care and I hope you don’t mind my speaking frankly. I wish you all the best my lovely.

Xx Netti xx

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Ah Netti, I love you speaking frankly, if you can’t on here then when can you?

Yes, I get what you’re saying about the oil. I suppose I’ve just never been someone into recreational drugs of any sort and so there is an element of resistance in me re the oil. Having said that I’ve mentally prepared myself to do this for a limited period (initially) to see where we get. It’s also about listening to myself and trying to be in tune with what’s right. I took a couple of days break and restarted last night so watch this space.

Can’t do much yoga at the minute as suffering with severe shoulder pain plus pleural effusion which is leaving me pretty breathless and is worse if I lean forward (presumably as the fluid travels down with gravity and crushes the remaining airspace?)

I am however still doing some Chanting stuff, Yoga Nidra/meditation etc.

Appreciate your input though Netti. Thank you. I will bear it in mind and keep an eye on it all

S xxx

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Hi Sarah, I have just read your post. I too read Rick Simpson my son told me about it. I am on the cbd oil but with the stuff taken out what makes you high. Don't know if it's working for me as i have just found out Monday that the c word is now in my lymph nodes in my chest. But still going to carry on with the oil, maybe try that one. It doesn't make me feel sick, I take three drops three times a day. Also I was taking IP6, it's a powder you take with water or flavoured water in my case. It's to help with your immune system. I stopped taking it for a while but I have started to take it again as I have to go back on chemo next week. My hubby sends away for it, if you are interested will send you the info about it. Much love Julie. Xx

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Julie,

Thanks! Yup I have the oil with the THC in hence feeling a bit out of it lately. I’ve also got some stuff like you so I may start that as well. Apparently taken in combination is recommended so that you get both CBD and THC. One kills pain, the other is purported to kill the actual cancer cells 🙏🏼🙏🏼🙏🏼

Thank you for the recommendation. I’ve been seeing PP the Yes to Life Cancer consultant and have a list of supplements I’m currently taking so will stick to that for now.

I’m feeling a lot better today!

😘 xxx

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Hi Sarah,

I'm so glad you are feeling better today. Been thinking about you, then I saw this post.

I'm sorry to hear the olaparib doesn't appear to be working.

Do they know what chemo you will be on next?

Really hoping your morale keeps rising, you've got this! Have faith xxx

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How are you doing today? Am finding I’ve developed quite the cough and it’s getting worse. It’s linked to the pleural effusion as I can feel it in my chest. Have you got a cough with yours as I didn’t have one before x

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Hi Sarah,

I have had this time, but I'm not convinced if it's the caeylex, the disease or the infection. Sorry to be unhelpful I'd hate to hazard a guess.

Keep an eye on your temp just in case it's an infection. These are notorious with plural effusions. Do you have lung mets? Have you had the fluid sampled?

Gosh, you probably think I've lost the plot, but my memory is shocking and I know you've told me this before! Or have you 🤔 xxx

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Jess I cannot remember details about everyone so pls don’t worry, Christ I’ve just read a whole article online a minute ago and then thought hang on, this looks familiar, only to realise I’d read it all the day before and not remembered!!! Erm altzeimers much(?!)

Yup checked temp a few times recently and it seems stable. Am with Oncologist Mon for scan results will mention to her then.

When you say mets to lungs I don’t know(?) I have pelvic cancer cells within the fluid, but no ‘tumours’ as such that I know of...I should know though huh 🙄

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Hi Sarah, can I pm you. Julie xx

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Of course x

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Hi Sarah so sorry to hear this. Crap that the olaparib idoesnt seem to be working. It's not surprising that youre feeling so low. Although the olaparib has not worked well, another course of chemo might be effective - I had carbo caelyx for second line as I think did many women on here and it seems to work well for lots of us. You can perhaps come back to a PARP after. I've just been reading about a new trial looking at second line PARP treatment (eg after one has stopped working, using a different one)

I've tried cannabis oil, didn't really like the stoned feeling, also don't think it helped with mood. Although it did help with pain etc.

completely understand about thoughts of death - and about protecting yourself emotionally - I've been the same for the last 3 months since starting niraparib to try to stabilise the cancer for awhile. Some things that have helped me that you perhaps coukd try were reiki from an amazing practitioner at my local Mcmillan, and hypnotherapy at my hospital. The hypnotherapy especially has saved my mental health! Along with other stuff. Also - I do think about death - a lot - but then I think, well, I could choose death, by stopping treatment, but I'm choosing life by having treatment. The treatment makes me feel rubbish, but still I am choosing life, so as far as I possibly can I tale pleasure from all the bits of life I can - because who knows how long ilife as it is now will last. But I know that once depression has sucked you in (and I hope it hasn't with you, yet), feeling pleasure or joy is so, so hard to do.

Just wanted to let you know you are not alone with these feelings

And to send love

X

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Elizabeth, thank you 🤗😘

The trial sounds really interesting, I’ve not heard of it?

I’m feeling lifted today, combination of reasons. I agree re the chemo, haven’t ruled it out altogether but will weigh up pros and cons before embarking if that’s where I get to. I think it’s such a personal thing and I hold no judgement re those having chemo, I would not be here without it I’m pretty sure!!

Re the Cannabis, I’ll stick with it for the initial 90 day period and again, review it and make a decision if it’s worth continuing. I do feel hopeful 🙏🏼 I don’t overly like how it makes me feel, am trying to go with the flow rather than resist. Am staying open minded for now.

Def need more Reiki and some little treats! One that arrived today has already had me smiling and laughing, am not lost to the Black Dog yet!! 💪🏼

Do hope that you are okay? Sending big hugs 🤗🤗🤗

Sarah xxx

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Good to hear on the smiling and laughing! I'm OK thanks, keep meaning to post an update as I know there's interest in PARP inhibitors. Just can't seem to manage to write it. But will do at some point soon, Hope today's been another better day for you

X

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Hi Sarah, as usual our friends on here have given you some good advice arfter reading your post I would like to say we all understand your feelings of doom and gloom with each news we receive, sometimes even arfter good news trying to be positive is hard.

I hope your team can come up with a successful plain and remember there are options.

So take care ,,Lorraine xx💙

Ps Do keep a close eye on that cough I've just come home from 4 days in isolation in hospital with viral infection.

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Lorraine defo re the cough. Thank you, as I said to my husband, we sometimes forget how vulnerable I am...

Had a wonderful positive day yesterday so hoping it continues. My son is in Melbourne atm. Can you believe he’s there ‘travelling’ and plans to be there 6M-1YR and yet he flew home for Christmas Day and surprised me!!!! You can imagine how thrilled & over the moon I was.... 🙏🏼🤗

Thanks for the advice Xxx

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Stick with the cannabis oil, maybe take it with some coconut oil or olive oil to dilute it a bit , it stops the high , take smaller dose as in start with a pin head dose and build up, I’m currently taken taking cbd oil but not the hemp one , been taking it a week now and it’s helped my breathing but I’m in a lot of pain lately so about to try the thc oil , hope this helps a bit , I also take supplements , vit d3,zinc magnesium selenium and k2

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Thanks Shellc,

Do let me know how you get on with the oil. I’m really keen to hear...

Best Wishes, Sarah xxx

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