I think my hope is fading

[Holdingontohope]

Morning ladies, sorry for such a depressing title but my family is hanging on by a thread, my poor mum is so poorly, discharged from hospital last week, bowel blockage cleared, they didn't say much about it, everything is so vague, she started off the first day quite good, but has had so much pain since then, consultant has said the cancer is peritoneal, there isn't much guidance on this, apparently its rare, she is on morphine 20 mg but once her pain spasm a start nothing seems to touch it, she has tried adjusting everything, even fortisip drinks will give her pain. She is due 2nd chemo on Thursday if she is strong enough, she looks so unwell and tired, I would love to hear somebody say that they felt like this but still got through the chemo, she has had chemo 7 year's ago, she is on 2 types one being the red devil, if she could just have some pain management it would help, her consultant doesn't seem to offer more advice than she asks for, and my mum's questions are very simple, I would have interrogated him but she never does, and I'm not the one with cancer so I respect her wishes, she is 61 years old, any advice is appreciated or support please, thr main problem is the pain, which is her cancer, I was convinced that its her bowel and an operation would hell but the experts say different xx I would buy drugs from the street if I thought it would help, dramatic statement, of course I wouldn't but last night I was Googling cannabis oil, I'm just desperate to help her

[dexta2005]

Hi, I'm so sorry to hear that your mum is not doing to well at the moment. I would contact the CSN nurse or GP to get some advice. I know you want to respect her wishes, I am the same age as your mum, so understands how she feels, but if I were in bad pain, I would like someone intervening. I take CBD drops (the legal stuff) and am gradually working up in strength. But if needed I will take CBD with THC. I would recommend reading about Rick Simpson. Just be careful if you do got down this route as there are some many dodgy deals and scammers out there. Best wishes.

[Lovedogs41]

I agree with the comment above.You need to speak with the hospital or GP about sorting out some effective pain relief for your poor mum.I also take CBD oil,it is legal,start low and build up the dose until you feel the benefits.You need a good quality high strength oil.Speak to those you order from for advice and if it is a reputable company you can ask to see the lab reports if you like to see it has been checked and it is what they say it is.

[Lyndy]

My experience was not quite the same but I had terrible lung problems and was on the maximum cpap oxygen at 6 litres with lung mets recently. I got lung drains plus chemo (3/4 dose to begin with) and now feel soooo much better. I was beginning to wonder if I would get through this but now I am home getting my strength back and from ca125 levels the chemo is working.

I am just saying this to encourage you not to assume this is the end for your Mum. A frank talk with oncology and a bit of pressure to get better pain relief might really help xx

[OvacomeSupport Partner My Ovacome Team]

Hello Holdingontohope

I'm sorry to hear that your mum is in so much pain and as a family you're having such a difficult time. We're here to support you, so please get in touch with our Support Service on 0800 008 7054 or 07503 682 311 or at [e-mail] if there's anything that we can help with or if you'd like to talk things through.

Your mum could ask about a referral to the hospital's pain team for further advice and help with managing her pain.

In terms of CBD oil, you may find it helpful to look at the piece about medicinal cannabis in the Spring 2019 issue of our Magazine, which is available at:

ovacome.org.uk/Handlers/Dow...

on pages 6 and 7.

As we said in the article, cannabis oil and CBD oil are different things, and it's important to understand what the terms mean.

CBD oil cannot contain more than 0.2% THC (the chemical in cannabis that gets you high) and is legal in the UK provided that the THC can't be easily separated and no claims are made about its medical benefits. It's sold in health food shops and by other retailers as a food supplement, and some people diagnosed with cancer find that it helps them to manage symptoms and side effects of treatment.

As with any other complementary therapy, it's important for your mum to speak to her team if she's thinking of trying CBD oil, as it can interact with other treatments and have its own side effects. It's a sedative, so you shouldn't drive or operate dangerous machinery when you're taking it.

Cannabis oil containing both CBD and THC is illegal in the UK. It's therefore important to make sure that, if your mum decides to try CBD oil, she gets it from a reputable retailer selling legal products.

I recognise that you are thinking about CBD oil to help to manage pain rather than as a treatment for cancer, but we thought it might also help to clarify more generally that cannabis isn't a proven anti-cancer drug. Cancer Research UK say that, "right now there isn’t enough reliable evidence to prove that any form of cannabis can effectively treat cancer in patients." (scienceblog.cancerresearchu...

Research is being done to find out more about how cannabis and products derived from it could potentially be used with cancer, and we'll update our information if there are any significant advances.

I hope that your mum can get some further advice soon to help her manage her pain. If there's anything that we can help with, please let us know.

Best wishes

Julia (Ovacome Support Services Officer)

[Holdingontohope in reply to OvacomeSupport]

Thank you for all your advice

[Kaitlinsmum]

So sorry that your mum is in pain. Regarding CBD oil, I found that it didn't really take away the pain but it did knock me out and allow me to get some sleep. At my worst only oramorph took the pain but not always.

Sometimes when you feel so bad and in so much pain you can't think straight or ask the right questions. Your mum might need you to be her advocate and ask questions for her. Don't be worried about bothering the medical staff. Good luck. Sending hugs xx

[SUE7777]

Dear Holdingontohope, Your poor Mum, you need to talk to her oncology team to get her some proper pain relief unfortunately unless you make the problem really obvious Medical Staff won't address it and you have to because that will really get your Mum down more than anything. I had to be admitted to Hospital recently with pleurisy and the pain was so bad it was stopping me breathing but unfortunately unless you are assertive about it they won't help because they don't understand, I was on intravenous Morphine in Hospital for the pain. Hope you get help soon, then treatment, then things will pick up. Take care Sue xx

[Rankij11]

This must be so horrible for you. I was just wondering if the MacMillan team could help, when I had bowel problems the hospital arranged with them for management at home . It was brilliant. Your mum shouldn’t be left in pain.

All good wishes

Jennifer

[LittleSan]

Hi, I'm in a similar situation to your mum. I was in a lot of pain and was paid a visit by the hospital Palliative Support Team who are experts in pain relief. Within hours I felt the benefit and within days I was pain free and remain so on the medication. Please ask for a referral to pain specialists it it has been so radical and

All the very best to you and you Mum. Such hard times. Xx

[ZenaJ]

I'm so sorry to hear of this. Have you tried McMillan for advice or a second opinion? I'm sorry I'm not much help to you.

We all seem to go through this in different ways and have different pain thresholds. Pain is the worst as if the worry isn't bad enough.

I do hope she gets some help soon. Write a list of questions for her to ask her doctors. Maybe when she sees how worried you are she'll ask them.

Wishing you the best, Zena

[dryden1]

Hi, Really sorry to hear about your mum.I think as a matter of urgency she needs referring to a Pallative Care team for pain and symptom control .I think that can be done via GP or oncologist.There really is no excuse for your Mum to be in a lot if pain. I wouldcdefinsately getvthe ball rolling today.Good luck. CHRIS

[Neona]

There should be a pain management place at the hospital? Certainly approach GP. I believe you can have a driver and then have it removed if no longer needed- the district nurses put in a driver for my mum.

[CallmeMum]

Hi lovely,

I assume by 'red devil' you mean Caylex? My late mother in law was on that and symptoms are fatigue (although my mother in law was the complete opposite), as the others have said seek medical advice there are pain patches the hospital can prescribe called Ralvo 700mg medicated plaster which can be used alongside morphine however this would be down to her oncologist to say what can and can't be used with it, my mother in laws oncologist said it could be used with it but it helped her pain and she was able to go through the days in less pain. I hope she can get more comfortable xx

[Holdingontohope]

Thank you to everyone that has commented on my post, it's so amazingly to have advice and support like this and know you aren't alone, progress has been made, pain management being sorted, doctor very supportive and has a plan and wants to know everyday if anything changes, finally we are getting somewhere xxx

[WoodyB in reply to Holdingontohope]

So pleased that you have some positive news. Was your mum well enough to get her chemo yesterday? My wife Suzanne had small bowel obstructions in 2015 and 2017, resulting in severe pain. On both occasions the obstructions cleared once she started on chemo and the tumours shrunk.

Once she completed 3rd line chemo in 2017 she started on olaparib and she is currently very well.

I really hope your mum follows a similar path. Woody xx

[Holdingontohope]

Yes she was able to complete chemo yesterday but unfortunately is now back in hospital with dehydration and sickness, kidney pain, some of which was before the chemo, glad to hear your wife is feeling well, gives me hope, kerrie