Hello ladies, just an update, and to let off some steam. After the week I spent in hospital with high temperature (and thank you all for the good advice your gave me), I've had 1 more dose of Topotecan, and have now started cycle two. But I don't think it's working. The pain in my abdomen and back is getting worse, and I'm now on slow release morphine tablets and a real cocktail of pills for the night. THe pain is manageable during the day, with paracetamol and ibroprufen, but nights are horrible. As soon as I get into bed the pain flares up, and despite the meds, including liquid morphine, I don't seem to get more than a couple of hours of sleep per night. Am exhausted and I think the morphine is messing with my head, I haven't cried so much since being diagnosed.
I've discussed this with the Macmillan nurse and the palliative care doctor, but they don't seem to want to believe me when I tell them that the night pill cocktail is not working and that morphine does not agree with me. I'm going to have to tell them that I've started feeling suicidal. Living with constant pain, no sleep and always near to tears is not my idea of good quality of life.
I won't know if Topotecan is working until mid March, the earliest I can have another scan (I had one in Jan.). But if it isn't, I feel like I'm at the end of the road, and that this pain is only just the beginning of the final nightmare. I'm not sure that I'm strong enough to cope.
Francesca
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Babaloo
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I am so sorry you are in such a lot of pain, perhaps you could give the Ovacome helpline a ring and ask Ruth Payne for advice tel 0845 371 0554 she might be able to tell you the best way in dealing with the pain. she is very good with giving advice, thinking of you and sending you my best wishes love x G x
I have heard other people say that morphine doesn't work for them - I think that is an established fact. Do you have any ideas why the pain is worst at night? Are there any adjustments you can make yourself?
I would talk to both the nurse and doctor again - there are alternatives, e.g. fentanyl patches. I can tell how lousy you are feeling but please do not let this go on - if necessary talk to the PALS team or call Ovacome for advice.
I am thinking of you. I know about chronic pain, esp at night. There is nothing worse and there is no need for you to be blighted by poor pain management.
I had fentanyl patches from just after my original diagnosis until the end of my first round of chemo, and they really worked. Occasionally I had to take extra pain relief, but not too often. Because they are there all the time, they slowly give a measured dose of pain relief, a bit like being on a drip, but without the hassle, and you don't get the cycle of no pain, through to unbearable pain while you are waiting to be able to take your next dose. It does take a few hours to build up to full strength, i cant remember how long, so check with your doctor. They are available in different strengths, if you do get them read the instructions carefully on when to change the patch and the disposal of the finished ones.
Good luck, I hope you get some relief very quickly,
I'm sorry you are feeling so low at the moment. Sometimes this awful disease can take us so low and make us so scared. Like you I feel so terrified of coping with bad pain. I am lucky in that I have had so little since I was diagnosed in Nov 2011. I had a couple of days after the epidural was taken out after my hysterectomy and was terrified of taking the liquid morphine I was offered. Over the last couple of weeks I have begun to get odd twinges and that worries me as I know my cancer has returned.
Please don't despair, keep fighting, and I'm sure you will come through this. Pain is just such a horrible thing especially at night when it really messes with our mind.
As Gwyn advises please speak to someone at Ovacome as I'm sure they will be able to offer you helpful advice....you really mustn't put up with this.
This is terrible that you're feeling so bad and you don't seem to be getting through to your GP or oncology staff quite how bad and unbearable the pain is. No wonder you're having such frightening thoughts with so much pain at night, a lack of sleep and the fear of what is going on inside.
I do hope you get back to them and they really take notice of what you're saying. Before my diagnosis my pain increased so that the cocktail I'd been given by the GP wasn't working - and the pain was always at night between about 2 in the morning and 6 so I couldn't sleep at all during this time. I told the GP I was rolling on the floor in agony and he prescribed stronger pain killers and some tablets to stop my stomach bleeding.
Please don't despair. Keep in touch and let us know how you're getting on if you can so we can be here for you and perhaps someone will come up with something that's worked for them that you might try.
Sending love and hugs and wishing we could do more to help.
I am so terribly sorry that you are going through this.
This care you are getting is just not acceptable, if you truly cannot get through to your doctor and or nurse then consider writing to them. This will go straight into your records and is alot less easy for people to ignore.
The staff should be well capable of selecting an alternative treatment regimen for you.Preventing pain is far far better tha treating it when it arises. As the other ladies have said a fentanyl patch would be the next logical option and they are very good.
Please hang on in there and fingers crossed you will get over this bump in the road.
Hi Francesca I sorry i feel so useless as i haven't got anything practical to add as I'm only at the beginning of this awful journey and I often feel scared about what the future holds. I know it wont help you now but i just wanted you to know that you are very much in my thoughts and prayers and I hope you get the right help you need very soon. Xxxxxxxxxx Chrissy
Dear Francesca
I'm so sorry to hear you're having such an awful time. Pain and sleep loss together is a real double whammy. Hopefully some of the advice you've had from the others will be of some help and you'll get your care team to take your problems seriously.
Sending you love and hugs and best wishes for your next scan results.
Dear Francesca, I have nothing to add but a hug and a hope that you get things more on an even keel. Do ring Ruth. She has so much experience and I am sure she'll be able to help. It is not right, what you are going through. I do hope you can get some much needed help soon.
Love Wendy xx
Oh poor you, Francesca. The one thing you mustn't do is suffer this without making the docs take notice and change the meds. They always say that today there is really no need for pain but that all depends on finding the right combinations for individuals. The rush and financial pressure our doctors and hospitals are under, that goes right out of the window if you aren't careful and extremely vocal. Do NOT put up with it, OK? Get them to fix this, you have to sleep or things can seem so much worse. Exaggerate all you like to the doctor though, Annie's right, but stick to talking about pain not state of mind as this could cause more issues in getting you the pain relief you need, but you must talk to someone like Ruth about how you are feeling too. Strong meds and a bad state of mind and emotion aren't a good mix.
It seems very poor to me that the doctors do not listen enough, because their text book says this works for this or that, then anything you feel must be wrong. Have you tried laying on your side with a pillow between your bent knees? It's quite good for pain relief when laying down.
Have you tried hynosis or meditation, the mind is a powerful tool, the pain may be worse at night for many reasons. I found the liquimorph quite good but it gave me the worst nausea, there are alternatives, have you spoken to your GP? Naproxen, Remedeine forte, or my fave Diazepam and dihydracoedeine (sp?), which I take for my bad back when it's at it's worse.
A NHS study revealed that cost cutting, so cheaper drugs was motivation for some doctors prescriptions.
Hi Francesca I feel so sad for you that you are suffering in this way - it's not acceptable and there are alternatives to morphine. It's not the beginning of the end but I know that the pain will make you feel that it is. You could ask for a referral to a pain team at the hospital if they have one or to your local hospice, don't see the latter as a negative they are experts in symptom control and that is what you need. Sending you the biggest hug xxx
Hi Francesca
I'm so sorry you are going through this. I know how very difficult it can be to get across the level of pain you are going through to doctors. I went through this with my otherwise excellent oncologist at one stage - she had prescribed just about everything in the book, and it seemed to me she just wouldn't accept that I was still in pain. It turned out that I had a benign bowel obstruction which in the end they operated on and I was ok. If you are in this much pain, there must be a reason for it, and they need to take you seriously. As Madz suggests, is there a pain clinic they could refer you too?
Sorry you feel so low. Our local hospice offers one to one counselling which I found of immense benefit. They also do wonderful pain management programmes.
I like some of the other women dont have any thing constuctive to add. I just wanted to say im sorry your going through all this and feeling like your medical team are not listening to you. It is so frustrating. I wish i could take away your pain.. I am praying for you,
Lots and lots of love
suzanne.. XX
P. S Keep on at the medical team Dont suffer in silence,
Dear Francesca - I can't add anything but also wanted to say I'm sorry you are going through this and yes you must keep on at the medical team or get someone else like your husband to do for you. Can you sleep a bit in the day to catch up maybe.
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Good news. 
Good news
Good News from ONC - It worked!!!!!
Good news (I think!) from scan result.
