Hi Dawn, I'm golightly but got another account as couldn't remember my login! Crazy! Just been reading all the posts re your procedure with great interest. wow! I'm hoping t.hings are still improving for you. Lots of love to you, and I'm so glad you have come through so well . Is the pain much improved now? Xxxxx I'm off to check out lemongrove and see how she has been too xxxxx katy
Thank you all so much for your encouragement. Everything has settled down well from the surgery but there have been a few ups and downs with the pain. Some days it is still a bit hard to control but I have been back a couple of times now to see the pain consultant and she is still slowly increasing the dosage and the extra boosts I can give with my little 'mouse'.
She has asked me if she can take me along to a two-day course that is offering participants (including palliative physicians, pain specialists, anaesthetists, general practitioners) called 'The sharp edge of Pain' where she is one of the speakers. She would like to demonstrate how they do refills and adjustments to the pump and for me to answer any questions those attending want to ask the patient. Should be quite interesting - I won't be going for the whole 2 days LOL, just a bit of the afternoon of the 2nd day. I have since looked up the 2 consultants on the Pain team looking after me and it is very reassuring to read that the one I see has a specific interest in cancer pain and palliative care, and the other later developed an interest in pain control, and in particular morphine metabolism. So I do feel that if I am to get control of this pain I couldn't be in better hands.
That is wonderful news Dawn, you must be soo happy with your progress so far and still scope to tweak it to perfection. You will be wondering what to do with yourself with all these extra pain free hours in your day, but I expect the grandchildren will feature 🙂
Lots of hugs
Well here I am 2 more days on and another 1mg morphine in my pump and my little mouse to give me a couple of extra boosts in the day if I should need them. I came home yesterday (Weds) and have needed just one boost each day. When I had a boost in hospital on Tuesday 15mins later my left leg gave way when i got out of bed and I wasn't able to use it for the next 15 mins. The consultant had heard of this before and adjusted the bupivacaine (local anaesthetic) in the pump to flow more slowly with the boost. I had it happen again last night but an hour after the boost! and have just tonight needed another boost and the same thing is happening - so I guess more tweaking. But it is just wonderful to have had many hours each day totally pain free for the first time in 5 years! I am sure when I see the consultant next week to make some more adjustments that she will have be well on the way to NO PAIN :).
lovely to hear from you,thanks for taking the time from your hospital bed to fill us all in. So peased the op went ok and you are not in discomfort from it, sounds like they are on the way to getting the tweaking sorted and finding you an appropriate dose. Hope you manage to get home soon but best to stay there till all is properly under control. Very gentle hug heading to you xx
Val,hope you get the news you want on Friday, will be thinking of you. Has the pain in your arm improved at all? Sending you positive vibes for Friday xx
Rosvi and tourismo good to see you posting, hope things are going ok with you.
Keep in touch Dawn, will let the girls on livechat tonight know you are doing ok, unless you manage to get on chat and tell them yourself, lol
Dear Dawn, Lovely to hear from you with an update. I hope all goes to plan from now on and that the new device does the trick. I have been thinking about you and wondering how you were doing.
I am fine and Friday is important for me as I will be seeing my Consultant ot discuss how this chemo is going and if we have to continue or try something new but at the moment I haven't a clue if it is keeping the b*ggers at bay. I hope it is doing something because I would not like to think I have been through all this for nothing.
The sun has been shining here all weekend and today too. I have not got the stamina to do very much although I did venture out today for a liittle while but what my head wants to do my body just is not able to do at the moment.
Keep in touch as I would love tio hear how things are progressing. Thinking of you, much love as always, Val
You are all so lovely, thank you so much for your good wishes. I am still in hospital but now have my own room with en suite.
The op went well finally but what should have taken 30mins took very much longer as I was in theatre for 1.5hours. The problem was as I had warned that the surgeon had difficulty getting the needle into the space between the discs (what space!!) even though he had opened the skin through to the spine to find it. Sadly my bones are in a mess. But he did it :). I also have problems with G.A.when they put tubes down my throat or rather when they pull them out. The anaethetist was so caring and after a bit of discussion went for gas to avoid the problem.
Now we have get the pump programmed to deliver the amount of morphine I need direct into my spine and as it is so concentrated this takes a great deal of skill. It has to be done slowly whilst withdrawing some of the oral and patch fentanyl and oxynorm. A mistake in judgement was made on Friday which gave me a bad turn - too much too quickly. but we have got over that. So the day of the op I had 2mg a day programmed, then the following day a further 1mg. On the next day (Sunday) after my bad turn fortunately the consultant came in and upped it to 4mg then was surprised to find that her registrar had removed my last 100mg fentanyl patch. She had that reinstated and I still have that backup. I am also allowed my regular fentanyl breakthru lozenges and oxynorm if I need it. As I still do it tells them I havent yet got the right amount in the pump. Because it is so concentrated it takes a while to reach the right spot.
I have just had four of the pain team round my bed incl. one consultant. They are just so nice and don't rush off - make you feel that you are important and what you have to say is as well. They think what they are going to do next will be maybe to increase the morphine another 1mg, and give me a ptm Patient Therapy Manager (it is like a little computer mouse to give extra boosts when pain is bad) They restrict this to only a certain amount of times per day and hope this will enable me to get off the other patch, and the oxynorm and have the lozenges as back up if need be.
They think realistically I am looking at home on wednesday as they want to monitor the changes they make rather than drag me back into clinics. But they are going to talk to Snr Cons, and see if she thinks this is the way to go. I haven't needed so much pain stuff through the night.
I have rambled on a bit but it gives you some idea of what is involved in quite a big decision I had to make whether to have this pump fitted or not. The surgiical part of it has gone well and I am not sore at all even though I have massive bruises.
I'm off in a little while to 'occupy my bed' LOL. The op is tomorrow. I have tried to so many pain meds. After the the usual regular paracetamon etc.I went on to morphine which I didn't get on with so after joining a trial morphine v. oxycodone I changed to oxycodone with the slow release + breakthrough. After a while on that switched to fentanyl patches which I have stayed with but as expected increasing doses. I have been in a trial for sativex (type of cannabis) but loathe to go as high as they would allow so didnt bother to go on it permanently. Also the doc at St.Catherine's wanted me to try ketamin but after going to the hospice for the day so they could observe I wouldn't go further than the first dose - the effect on my system was dreadful! So you can see why I am willing to give this device a go - not quite so easy to 'come off' though as the oral drugs but I can't see where else I can go with a solution to my pain problems so I am really hoping it will do it for me.
Hi Dawn - I'm not surprised to hear you're fearful about taking this next big step - we all read about these new high-tech solutions/treatments and think "yes, that sounds great" - until we are actually faced with them. Although the procedure to install the gubbins sounds a bit interventionist, the promise of better pain control must be quite enticing, with a good chance of giving you a better quality of life. And, as you said, now is the best time to go for this, before other commitments reduce your support at home . . . and Spring arrives, a very busy time for the business! We'll all be with you, sticks & stares at the ready!
And Hi to you too Val - didn't realise you were having such a hard time recently, and hope the transfusion helps a bit - I know about low Hb - mine was 7.5 in the summer, and is only 9.0 right now after six months on EPO injections, but I'm not having chemo, so it's probably less depleting for me. Also interested in the alternative pain meds - let us know whether these help too.
Love to everyone else too - Belinda, love the Malteaser image - hospice presecribed Oxycontin for my joint/muscle/bone aches & pains, but I'm hoping not to have to try it just yet!
Hi, how have I missed this thread? I just wanted to add my best wishes Dawn. It is a scary choice for anyone to make but I think it is the one I would take, go for it Dawn. Just a quick hello to you and Val from me, 9 years now bone metster. I started having pain issues late Spring last year and despite having 2 stable CT's the pain worsened and I was typing at my pc kneeling down and had some time of only being able to snatch a little sleep on the sofa, bed was too uncomfortable. Crazy how pain creeps up on you and you try and adapt. An MRI just before this Christmas showed bone mets pinching all my sciatic nerves running down one leg and bone mets very close to my spinal column. I've changed from being a ''is that paracetomol really necessary'' girl to whatever it takes for me to be in a better place pain wise. I know another long time bone mets lady who I'm pretty sure has had the same op Dawn and she has felt the benefits. I also know another lady on Ketamine Val and I think it's helped. I had 5 sessions of rads this Christmas close to where I'd had some rads years before to my sacrum. The pain relief was very quick, fantastic. After 4 and a half years of Capecitabine I'm now on my second chemo, Doxorubicin. So far, whisper, it's been ok! 🙂 Didn't bother with the cold cap and my head is a little round malteaser, I cover it with scarves, it's all, (so far!) doable but I've only just had my 2nd dose so not counting those chickens just yet. I had a few days of Gabapentin Val just before my rads. It sent my pain through the roof but I've found Oxycontin has been better for me and I'm now lowering my dose, just 2 tablets a day. At first the pain killers knocked me for 6 and I could hardly keep awake and had really horrible nightmares, all death and gloom. 😞 But I've adjusted to them and with the lower dose I'm now in a much better place..I hope, Dawn and Val things get SO MUCH BETTER for you both..soon!..xx
Just wanted to add my good wishes and say that I would opt for this operation too if ever my pain becomes as great as yours has been. I just have the odd day when the pain is bad and that gets me down but at least I can say 'well maybe tomorrow will be better. To have the ongoing pain that you have been experiencing must be so disheartening for you so grab this opportunity to become pain free with both hands.
Reading all these posts and knowing that we are all behind you and wishing you all the best must give you a warm glowing feeling. Will be thinking of you next week and sending you my very special wishes and cyber (((hugs)))
PS All the best to you Val as well x
Hi Dawn, sorry I've got caught up in all my woes so havent added my words of support for you. I think any major changes, let alone cutting edge technology (no that's not meant to be a pun!) is worrying but it sounds like this is something you have to do to have the greatest effect on your day to day living. Wishing you all the very best for next Thursday and more importantly from then on, when the device starts helping you manage that pain, and drowsiness.
Dear Dawn, of course you are scared, you are probably equally excited too, I know I would be in your situation. I know you have thought long and hard about this and am sure you are making the right decision for you, it will hopefully make a big difference to your daily life not just to have the pain more controlled but to be more awake too. I will be thinking about you and if you don't mind wil mention you in my prayers. As Val says, we're all behind you and willing the best outcome possible.Sending a big hug and another virtual hand to hold if you ned one xx
Dear Dawn, We will be with you every step of the way and I know you have thought long and hard about having this operation. I think you know you have to give it a go and I really hope it does the trick for you. I will be thinking about you each day and holding your hand ( if you will hold mine too!)
On Sunday I am going to the hospital to have 2 more units of blood as my HB is down again to 8.8. The offered to try to fit me in on Thursday when I was having round 9 of Taxol plus my Zolindronate infusion but I told them I hadn't the energy to remain in the hosp after the other treatments, another 6 hours perhaps! and would prefer to delay it even for the next day but they could not fit me in on Friday. So a bed has been found in the ward opposite this one for Sunday.
Then on Tuesday I am having my one long blast of radiotherapy to my painful arm having a CT scan at the same time to locate the best place to blast the b*ggers. I had to increase my MST and my Gabapentin to help cope with the pain so I fully understand Dawn what you mean about wasting your life away sleeping. My words not yours. They say the pain could be worse after the radiotherapy before it gets better so I have to have the Oramorph at the ready. But will give it a go.The pain has been going on for too long and I need a break
They wanted to put me on a Trial at the Pain management Appt last week ( all I seem to do is go to appointments for this and that and last week I was also at the dental hospitla re exposed boen in mouth!) The trial , I decided was not for me right now because it could either be The real drug or the placebo and as the pain is bad I wanted to try the radiotherapy first. The drug was Ketamin. But I have not ruled the trial out completely but said I would prefer to have the radiotherapy first (How we cahnge when the disease moves on and take things like this more in our stride but what else can we do.
Then on Thursday it is back to the next round of Taxol yet again. So will be thinking about you all the way Dawn.
You are making the right decision and I know you must be scared but I have a good feeling about this and think it may make a huge improved difference to your daily life and that after all is all we are hoping for. I massive hug to you Dawn, Love Val
Suzanne I'm not stalking you honest!! Just posted after you on the bone mets thread!!
Dawn - nothing crossed at your request but sending lots of good vibes from Aberdeen your way. It sounds as if it will be a real improvement in your standard of life and you'll be more in control of how you feel and how you treat it - for all us female control freaks thats got to be good. Yes the way there is going to be scary but the results will be worth it.
I think its worth a try, Dawn; Go for it! You are airing your thoughts on here which helps to lift the burden, but I think , deep down, you've already made the decision for it!
Just remember that youve often stated that you dont like the high doses of pain relief so this seems the right decision for you, and I'm sure it can all be reversed if something doesnt suit you,
Take care, Truddles
wow the wonders of modern science. you go for it girl - it sounds like agreat opportunity. The side effects of all the drugs youtaking at the moment sound really heavy. I know that my mum found fentynl seriously started affecting her cognitive abilities. I think you will feel like a new woman.
Loads of luck Jacquix
Hi Dawn , I dont know much about this device, but I feel from what you have said that it is a good way to try and become pain free. I think you must have coped remarkably well over the past 11 years and this is now your turn to try some new technology and hope and pray very hard that it works. You will of course be able to tell others of your experiences so I would urge you to be strong and give it a trial. Wishing you all the very best and please let us know how you recover. Love Tracy xxx
Dawn, so sorry to hear you are in so much pain, I think I will be offered the same device shortly (nothing to do with bc and I do not have secondaries) but feel similar to you regarding whether or not it would be beneficial. I stopped all painkillers many years ago because I hated the side effects and being honest the pain stayed the same throughout.
My worries are that I will feel dozy, sleepy again as like you, I don't want that to be the case, I hated that.
Hope you do not mind me keeping an eye on this thread, just want to wish you well, if you decide to go ahead really hope you will be painfree xx
Some of you, especially the boney girls, will know that I have been struggling with pain for a few years now. I have had extensive bone mets for 11 years now and been very fortunate that it has only worsened in the last 4 years. I would rather not take any more pain meds as I feel there is more to life than just sleeping LOL. I suspect my daughter (mother of the twins in my avatar) wouldn't mind if they would spend a bit more time sleeping!
My Consultant at the Pain Clinic suggested I spend a bit of time researching an Intrathecal Drug Device and come back in 3mths and tell him if that is what I wanted. I did and have been to see the Pain Consultant at Kings College Hospital who has recommended this means of pain control. It is done by making an incision into the spine to insert a catheter, then tunnelling this under the skin round to the front of the body where a 6" incision is made to form a pocket under the skin to insert the pump. I think it is quite a bulky object and on my small bod is going to protrude. I will have to make visits back to the hospital from time to time to have adustments to the dosage and the pump refilled. The main benefit is that pain control can be achieved or improved by very much lower amount of medication. I think I will be having morphine in the pump and it means I will be able to have increased doses if I need to without all the side effects of the much higher amounts of fentanyl patches, lozenges, oxynorm and pregabalin. I will also have a device that is a bit like a small computer mouse and when this is held over the pump can administer an extra bolus if you need it for increased pain. Could be a good conversation piece! Specially if I go setting of all the shop theft control devices at their entrances.
Well the day is fast approaching and I am SCARED. I had a phone call this afternoon from Kings asking if I was free to come in tomorrow!!!! for pre-assessment and on Wednesday admission for op on Thursday. I think with every bit of my being I wanted to find an excuse to delay this. Well I am in the middle of doing the my Company quarter accounts. But realistically this is good timing because next month my OH has a couple of engagements out of the country so I should be well on the road to recovery before he goes. It fits in well with my treatment days at the Marsden - one of them this coming Monday. Fortunately I had some new sleepwear for Christmas so wont have to go rushing out for new ones! I would so like the chance to be pain free and I think this is my only option.