September 2009, We've got through the hospitalization and the high temps, no clear reason found for what was causing them. No results confirmed that it was swine flu. We have 10 days before the sixth and final round of chemo is scheduled to start. Guess what, Greg is suffering from tinnitus really bad. It is something he is asked at each appt and whilst it has always been there (even before chemo) it is now a constant and has gone up in intensity. On Friday,Greg tells me he is considering not going through with the final round. I suggest it is something that we need to talk about with the oncologist before he makes a final decision. By Tuesday he is telling me that it has lessened, I immediately know that he will be doing the chemo as once he tells the onc. that it has reduced then it will be a case of 'lets just get this done'. I can't go to the pre-chemo appt with him as I have my 12mth old nephew for the day,,,, the weather is crap and it's going to be a standard appt anyway. The appt time is 2ish and Greg rings me while I am at the school picking up the boys. There is a gale blowing, noise all around and my nephew is trying to take my phone - I can barely hear a word he is saying. Later that night, when the kids are in bed, I ask him to tell me about the appt. The onc. had asked for a rating out of 10 on the tinnitus. Greg answered 3! I couldn't believe it, why did you say 3, he's not going to take you seriously when you only say 3. "how would you know what I am feeling, on their scale it is probably only a 3. I said it's not their scale, it's how bad it is to you that matters. He is not going to think it is very bad if you say 3, there is still a long way to get to a 10 being the worst it can be. Greg then turned the tv up to a considerably high volume and says "so you think that's not loud". I answered it is very loud and he said well that is what I have all the time. I said then you need to tell the onc. that. Well, I copped another load of abuse about how I didn't know what he was feeling etc etc. He went ahead with the chemo cycle, it was relatively minor in terms of side effects, lethargy being the worst. Now it's over. What now? We have an appt with the O on 9th October and expect that the CT scan will happen the following week. At the appt, Greg admits that he is losing feeling in his fingertips and that the soles of his feet feel like he is wearing the old masseur sandals constantly. The tinnitus is still a problem too. The onc. wants to wait 2 months to have the CT scan, we say we are not comfortable with that. He says you have only just had one, we say no it was 2 months ago. He agrees to schedule it for November 4th. I ask about having a PET scan, as we have never had a full body scan done. The onc. says we wouldn't get any information from one and then clarified it by saying 'wouldn't get any useful information'. I don't push it further, we will wait and see what the CT scan shows. I wonder about his comment about 'useful information', all I can think of is, he doesn't see the point in doing it as Greg can't have any more treatment, so if something were to show up on it, we wouldn't be able to do anything about it and what then is the value of knowing?
Regular Contributor
Hi, I also have the neuropathy in my hands and feet from oxalipalitan. When I first finished treatment I couldn't feel the ends of my fingers at all and constantly dropped things. I agree with Greg about the feeling in your feet as well. For me the burning and numbness in my feet hasn't gone away (2 years down the track) and to be honest it drives me insane. I can only cope with sensible shoes - no prety sandals for me! I have also developed plantar faciatis so my feet are in a really bad way. My oncologist warned me of these possiblities from the very beginning and warned me that for most people, it goes away but for some it stays. The unforunate nature of cancer is that there are no definites. When I finished treatment I felt that nobody understood the continuing fear. My husband saw that it was all over and things would now return to normal. It took me a number of months to have some physical normality (except for the feet and hands) but much longer for emotional normality. I still struggle with that and thank God for this site as no-one at home wants to talk about it. I believe that we all deal with the pain, the anxiety and the fear differently and that carers also deal with it differently. The end of treatment isn't the end of the road unfortunately but as discussed previously, if you are unhappy with your oncologist maybe it would be good to have another opinion. This could either confirm what has already been said or offer another perspective. I don't know if I have been any help, but hang in there. Samex
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Thanks Samex, Sorry to hear that you miss out on 'pretty sandals'! and that you are still sufferring the neuropathy 2 years down the track. I'm in a quandry as to whether I should mention that to Greg. I couldn't agree more that this site is a god-send, just taking away that feeling of 'isolation' for even a little while is so helpful. Jill.
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Regular Contributor
Maybe Greg (and you) have enough to deal with at the moment rather than worrying hhim about the feet etc. My whinges pale into insignificance with what you guys are facing. A day a ta a time, SAmex
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