A little bit lost........

[willow]

Hi I have had a headache now since the 23rd October - sometimes it is not there for some of the day but most nights I wake with it and lie and worry. Last night it was really bad and I couldn't sleep at all. Today I have not been able to do anything except lie on the couch. It is 4pm and the painkillers seem to have finally worked. If things follow the usual pattern this relief will be short lived. I was going to call and make an appointment with the oncologist and ask him to book me in for an MRI (our last conversation was that this is all they can do at this stage). I am feeling so lost and worried and miserable right now. My thoughts are jumping ahead to what I can't even verbalise. I want Christmas to be happy - I want to think of next year with a smile. Maybe if I had a test it would be fine but I know I cannot deal with it if the results are what I fear. My daughter and son have said just have it. Easy to say but not so easy for me to do. I am feeling right now of just curling into a ball and disappearing. A cop out I know but I am saying it as I feel. I keep hoping tomorrow the headache will be gone and I won't have to deal with it - but this is now obviously not going to happen. I finished radiation on the 2nd November and was hoping by now to be feeing heaps better. Not feeling like this. I am also trying to cope with ongoing back pain which has also been there for some weeks (with a recent trip to hospital for pain relief after my back went into a spasm) Physio is helping but progress is slow. I know the decision is mine to make in regard to the MRI but I just wanted to put out there how I am feeling. I don't think my family can really understand how this is affecting me right now. Decision making has never been one of my strong points. Maybe I will go and make an appointment with my local Doctor and ask her advice. I just wish all this would go away........I've really had enough. Willow

[#2]

Hi Willow, It is so hard when we get any pain anywhere because our mind automatically thinks..oh no. I dont know much about your situation but it seems like you have just finished chemo so your body has really been through a lot. If you have a sore back also, your headaches could be related to that maybe something is out somewhere. Why dont you try your GP and see what they say, maybe they can offer you something else for the pain or maybe check out your neck and back for you and make sure everything is okay there. Try not to think the worst and just get it checked out. Hope 2morro is a better day for you. Vanessa

[willow]

Thanks Vanessa You're right I do think that every pain could be cancer. It just seems strange that I have had these headaches every day for a month. And there is no reason I can think that I would have back pain as i have not had an injury. I finished chemo in August and radiation on Nov 2nd. I am feeling a bit better tonight and am hoping I will get a good nights sleep. I am going to see my doctor tomorrow and will try to think more positively. Again thank you for your reply - I hope all is good with you. Regards Willow

[benlisecca]

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[Jules2]

hiya willow I really empathise wth you at the moment. I think we have all been in the place you are currently in. Its not an easy or great place. It sounds like you might be reaching what i call "brick wall" time in treatment. I know i certainly hit that wall a couple of times in my treatment. At least if you have the mri done then you will know what to stress about and what not to worry about. I remember back when i had my first cancer and i went to see my gp with headaches. I had a scan done and luckily it turned out to be just stress and then i had to work out a way to deal rather than stressing. hugssss to you and i hope you are feeling a bit better. Be kind to you. Julie

[willow]

Hi Sharon I hear what you are saying - as before you make a lot of sense. You have been through so much yourself. You seem to have such a good attitude. I could use some of your strength. I have already been told by my oncologist that if the cancer comes back there is nothing they can do - there is no more treatment I can have. And he was quite blunt in saying that I would have only months. This is why my decision is being clouded by fear. I,as do we all, have so much I want to do, to live for. I am supposed to be going back to work next week. I have had talks with the back to work coordinator and she has worked out a program for me. I don't really know if I am ready or even if I want to go back now. I am scared too that if I go back to try and live a normal life it will be taken from me again. Not very rational but something I think about. I am feeling a bit better tonight and hopefully will get a better sleep. Thanks again for your reply. Take care, Kind regards, Willow

[willow]

Hi Julie Thanks - I feel like a whinge when I see what people like yourself have been through. I do find it difficult to cope with my feelings a lot these days - a lot of it is probably post treatment blues. Chronic pain has a very negative affect on the mood and after dealing with this headache for so long and having the bad night last night was just too much for me. I have had a few what I call 'meltdowns' recently where I just feel as if I am losing the plot and tears flow quite regularly. I need to find the strength to face all this and start to focus on some positive things. It is just very hard. I take comfort from the support of people like you and find this site particulary helpful as I see that there are people who understand my feelings and don't expect too much of me. And there are people who have been through so much more than me and who remain positive and strong. Take care, Kind regards, Willow.

[Jules2]

heya willow honestly,i was in meltdown mode two weeks ago. I went to see the radiation oncologist and burst into tears and he quickly shoved me off to see the nurses ... lol Is funny now but at the time i was in a deep dark space. I just find when i am dragged down physically, as treatment tends to do to us then the mental and emotional stuff is way harder. It is great that you are recognising where you are at and i believe thats half the problem. Prior to my getting treatment i was in chronic pain for months on end. It is terrible to experience and really does drag people down and make things a lot harder. Hang in there, willow. Julie

[Versaillon]

Chronic pain has a tendency to put a dampener on most things. I've lived with chronic pain for nearly 4 years now from a motorcycle accident and personally I wouldn't wish it on my worst enemy. It does make it difficult to enjoy a lot of things and on the days you don't feel any pain, you feel hopeful that it doesn't return even though you know it will. Can I ask a question? Are you taking a lot of codeine based painkillers? The reason why I ask is that a specialist advised that if I took a lot of codeine based painkillers, I could suffer withdrawal headaches. Then of course, you take more to kill the pain and the cycle continues. It's just a thought and perhaps you could check it out once your MRI comes back clear. I can understand your fear and frustration. It's hard to feel so positive and hopeful when being in constant pain, you just want to go to sleep and never wake up. I have regular 'meltdowns' - it helps me lift some of the emotional burdens I carry so don't feel guilty for having them. They help heal and releasing all the pent up emotions helps give you the strength to keep going - you are much stronger than you give yourself credit for. Good luck for your MRI and getting a check up from your GP is a great idea. You've been through the wringer so go easy on yourself :) Jo

[willow]

Hi Jo Thanks for your msg. I have heard about the codeine withdrawal and have wondered about that myself. But what do you do? I have taken Nurofen plus but they don't work. I have still not decided on the MRI. Will discuss it further with my local Dr. It is good to hear that you too have meltdowns and it does actually seem to release a lot of pent up emotion so temorarily you do feel better afterwards. But very embarrassed and silly too. I had a better sleep last night so am feeling a bit more positive today. I just have to do what I can to make each day a good one. Hope all is going well for you and your husband. Kind regards, Willow

[Versaillon]

I have heard that Di-gesic works wonders but haven't tried it myself. It is codeine free but is an opoid analgesic however it is a prescribed medication so perhaps see your GP and see what they say. Neurofen is an anti-inflammatory based analgesic so won't do much for the headache especially if it's really bad (I have to use pana forte for my severe headaches)so maybe try the strongest paracetamol you can get your hands on or see your GP for their suggestion. Anything has got to be better than being in pain day in day out. I used to feel embarrassed and silly, especially because I always thought that there are people worse off than me. But ya know, my situation and your situation isn't a bed of roses either and you have to do what you need to do to get through to the next day. If it means chucking a wobbly to make yourself feel better, then don't apologise for it - we're coping with abnormal situations so I'm sure we're behaving completely normal considering. And my lawdy you are so right. Good, decent sleep doth make one feel so much better - my pain is definitely worse if I get crappy sleep so definitely get as much sleep as you can. Oh and my GP says exercise works too but I personally, think she is a total sadist LOL. Husband reached the half way mark for treatment so we're on the homeward stretch. Thank the GODS! It's been rough but we're doing it which means you can too 🙂 Take care

[Jules2]

Hey Versaillon You raise a fantastic point in that one person's problems should not take over another. A problem to someone is a problem, no matter what we may judge it as. 🙂 Well said!! Julie

[#13]

It has been 3 years since I finished all of my treatments, I had chemo, radiation and internal radiation plus major surgery. The fact is that at the time we are going through all these things, the focus is on survival and usually everything that the Doctors can throw at the cancer they will. Afterwards is when we stop and think, hey that was a heck of a lot of torment that my body has been through, now the cancer is gone! but I am left to pick up the pieces, physically and emotionally. Mostly the physical side effects go away but some dont. I dont think there is anyone who can get away with having been through treatment for cancer and not have any after effects that they have to live with. For me I have aches in my bones where I had the radiation, tingling in my hands and feet from the chemo and swollen, sore legs from the lymphnode removal, I take buscopan for my tummy troubles and the occasional panadol for everything else. I find swimming is the best medicine, Willow if you have access to a pool or the ocean I highly recommend it, not only is it good for the soul it is also good for physical symptoms. No doubt sometimes pain calls for something stronger, but I personally always try everything else first, I think of my kidneys having dealt with all the drugs from the chemo and would much rather when I can opt for the natural approach. If you can get to the bottom of the headaches, you will probably feel better and more able to handle it. When I get the bad tummy problems I can be on the floor in pain, but having had my scans now I know it is not cancer and I feel much more capable of dealing with it. Vanessa

[willow]

Hi Vanessa Thanks for your reply. You said it has been three years since you finished treatment yet you still get the side affects? I get pain and tingling in my fingers and even in my feet. I have wondered if this is the side affects of the chemo? Internal radiation doesn't sound good. I am hoping once I get stronger to go back to pilates. I am attending a physio at the moment for my back pain and will wait till she tells me it is ok to start exercising again. I have never been very good in water and cannot swim. I am still waiting for my energy levels to return to normal as I get very tired quickly. Take care Willow

[willow]

Hi Vanessa Thanks for your reply. You said it has been three years since you finished treatment yet you still get the side affects? I get pain and tingling in my fingers and even in my feet. I have wondered if this is the side affects of the chemo? Internal radiation doesn't sound good. I am hoping once I get stronger to go back to pilates. I am attending a physio at the moment for my back pain and will wait till she tells me it is ok to start exercising again. I have never been very good in water and cannot swim. I am still waiting for my energy levels to return to normal as I get very tired quickly. Take care Willow

[willow]

Hi Vanessa Thanks for your reply. You said it has been three years since you finished treatment yet you still get the side affects? I get pain and tingling in my fingers and even in my feet. I have wondered if this is the side affects of the chemo? Internal radiation doesn't sound good. I am hoping once I get stronger to go back to pilates. I am attending a physio at the moment for my back pain and will wait till she tells me it is ok to start exercising again. I have never been very good in water and cannot swim. I am still waiting for my energy levels to return to normal as I get very tired quickly. Take care Willow

[willow]

Hi Versaillon Thanks. I do need to exercise more - I need to motivate myself to just get out there and walk and hopefully soon start up with pilates again. Sleep is a definetely a good medicine too. I went to my local Dr - she is nice but doesn't really have much advice - she wants me to have a full blood test and prescribed a tablet much like nurofen. I don't really have much faith in Dr's and their ability to medicate correctly. I told her I needed something for the headache and she said to continue with panadeine forte. Oh well. Good news about your husband - I hope things continue to improve for you both. Kind regards, Willow

[Mrs_Elton]

Hi Willow, Am hoping that you have been getting relief from your headache. Thinking of you, Jill.

[willow]

Hi Jill I have not had a headache for a few days now - the relief is amazing. I can think more clearly and do more too. I am still having physio on my back but some days that is better too. I went back to work on Monday - just for four hours - Monday, Wednesday and Friday this week and next week too with the plan to gradually increase days and hours. Don't know how I feel right now but I have to try going back to the old life as it is the only way I will know if it is what I want. For now it is a day at a time..... Thanks for your msg. I hope all is going ok for you and your family. Take care, Willow

[Mrs_Elton]

Hi Willow, So glad to see that you are getting some relief. Good luck with the work stuff, one day at a time sounds like a great plan! Best wishes, Jill.