CJ Posted November 15, 2011 Author Share Posted November 15, 2011 Back to Velindre cancer hospital tomorrow morning for some blood tests and then on to prince Charles hospital in the afternoon for an MRI bone scan to determine the depth of the cancer cells on my vertebrae. Then on Thursday the chemotherapy starts. On the one hand I'm feeling slightly nervous as I do not know what to expect but on the other it now feels like the treatment and fightback has truly begun. Quote Link to comment Share on other sites More sharing options...
johnny g Posted November 15, 2011 Share Posted November 15, 2011 Thoughts are with you mate. You're a right fighter! Quote Link to comment Share on other sites More sharing options...
Septic Posted November 16, 2011 Share Posted November 16, 2011 Good luck with it all CJ. Thoughts and prayers are with you. Quote Link to comment Share on other sites More sharing options...
CJ Posted November 16, 2011 Author Share Posted November 16, 2011 Blood tests taken and a 45 minute MRI bone scan done but now they have decided to wait for the chemo to start until they get the results back. Apparently they are looking for a specific gene in my blood which around 20% of people have and that may determine a different type of chemo. The doc mentioned that the gene was called star something or other but when I searched google for star and gene I got Gene Kelly the signing in the rain fella!! Quote Link to comment Share on other sites More sharing options...
AndrewOW Posted November 16, 2011 Share Posted November 16, 2011 Best of luck Colin. Quote Link to comment Share on other sites More sharing options...
Darragh Posted November 17, 2011 Share Posted November 17, 2011 Finally pmd ya back mate I hope you like the two awful jokes I sent to cheer ya up lol Anyways when I had mine it was spreading into my bone marrow and the doctors said to me at the end of all my treatment I was lucky it didn't get to far in so there is still hope for ya mate, I forgot to send that I'm the pm lol But as I've said to ya before stay positive and enjoy everything you have as positivity is deffo the best thing to beat this sickness you have, and don't be afraid to pm me at anytime Ps if you haven't shaved your head yet go do it now that way it won't look as bad when lumps of hair start to fall out Quote Link to comment Share on other sites More sharing options...
tbourner Posted November 17, 2011 Share Posted November 17, 2011 Ps if you haven't shaved your head yet go do it now that way it won't look as bad when lumps of hair start to fall out I don't think that's an issue! Quote Link to comment Share on other sites More sharing options...
CJ Posted November 17, 2011 Author Share Posted November 17, 2011 I don't think that's an issue! Indeed my friend. Quote Link to comment Share on other sites More sharing options...
CJ Posted November 23, 2011 Author Share Posted November 23, 2011 What a strange few days. Sunday and Monday saw me feeling extremely ill with aching limbs, stomach problems, excessive wind and an overall feeling of awfulness. It was the first time since I came home. To be honest, it frightened me as all I could think of was the oncologists prognosis and being terminal and feeling that maybe this was the start of things to come Anyway, during the evening on Monday I started to feel better and then yesterday I felt as well as I ever have - go figure eh? I have also been chasing the hospital up regarding my MRI bone scan and blood test results as the outcome of those determined the next course of action. The oncologist had said that even though we were postponing the chemotherapy sessions for a couple of weeks, we could still start the radiotherapy on my spine area and so with that in mind, I had been keen to get moving. So, with this in mind, I spoke to the oncologists secretary and after speaking to the Doc, she came back to me today to say that the gene situation was clear (as in I didn't have it) and that we weren't going to start the radiotherapy but would continue with the plan of chemo in a few weeks. After I put the phone down I had a bit of a panic moment worrying about the decision. Did that mean the bone scan was bad and therefore radiotherapy was not worth it? Did it mean it was good and radiotherapy was not needed as chemo could do the job alone? There was no way I could have those thoughts milling about in my head for 2 weeks and so I rang them back up and asked the secretary to get the info for me. Was it good news that stopped the radiotherapy or bad? She is going to ring me tomorrow with the outcome. Quote Link to comment Share on other sites More sharing options...
Scott Posted November 23, 2011 Share Posted November 23, 2011 I'm going to bet it was British tummy that messed you up. Too much clean water has knocked you for six Fingers crossed for the good news tomorrow mate Quote Link to comment Share on other sites More sharing options...
Lbm Posted November 23, 2011 Share Posted November 23, 2011 Glad to hear you're still chasing things up, trying to get things moving. This is good. And as Scott says, best of luck for some positive news for tomorrow. Now then, as far as tonight is concerned, have you time to nip out and get a couple of bottles of Mythos? Quote Link to comment Share on other sites More sharing options...
CJ Posted November 23, 2011 Author Share Posted November 23, 2011 I'm going to bet it was British tummy that messed you up. Too much clean water has knocked you for six Fingers crossed for the good news tomorrow mate Thank you muchly. Quote Link to comment Share on other sites More sharing options...
CJ Posted November 23, 2011 Author Share Posted November 23, 2011 Glad to hear you're still chasing things up, trying to get things moving. This is good. And as Scott says, best of luck for some positive news for tomorrow. Now then, as far as tonight is concerned, have you time to nip out and get a couple of bottles of Mythos? Oohh...I do miss a bottle of Mythos Quote Link to comment Share on other sites More sharing options...
Lbm Posted November 23, 2011 Share Posted November 23, 2011 Col. Remind me which part of the country are you staying? Is it Wales? If you'd like to PM me your address, I'll send you a case of it I'd like to do that if you'd like to accept. Quote Link to comment Share on other sites More sharing options...
ellis Posted November 23, 2011 Share Posted November 23, 2011 Heck mate, just caught up with the last few weeks. Stunned to read the first bit but heartened to read that your indomitable spirit is as strong as ever. If anyone can kick cancer's ass, it's you buddy! Thoughts and prayers are with you as always friend. Quote Link to comment Share on other sites More sharing options...
Shane Posted November 23, 2011 Share Posted November 23, 2011 Hope tomorrow goes well for you Col, will be thinking of you. Quote Link to comment Share on other sites More sharing options...
CJ Posted November 24, 2011 Author Share Posted November 24, 2011 Just had a call from the oncologists secretary and.....no news. The doctor has told her that she doesn't discuss treatment etc over the telephone and that she will see me on the 7th. Ah well, not a lot I can do about that then Quote Link to comment Share on other sites More sharing options...
tbourner Posted November 24, 2011 Share Posted November 24, 2011 That's the problem the missus always faced, people would get really paranoid cause she said she couldn't tell them over the phone, but it's not fair to give any news over the phone good or bad so they always wait until you're face to face. Quote Link to comment Share on other sites More sharing options...
CJ Posted November 24, 2011 Author Share Posted November 24, 2011 That's the problem the missus always faced, people would get really paranoid cause she said she couldn't tell them over the phone, but it's not fair to give any news over the phone good or bad so they always wait until you're face to face. It's the paranoia that gets to me. I have had quite a bit of bad news lately and whilst I am still fairly positive, once I have someone say they wont chat over the phone and only in person, I go into a bit of a panic mode. Irrational? Probably. But there again when you are told you have cancer and especially when you get the prognosis she gave me the last time we met, I think I am allowed a little bit of slack. Quote Link to comment Share on other sites More sharing options...
Scott Posted November 24, 2011 Share Posted November 24, 2011 Surely it's just clarification you are after though CJ? You are looking to have what you have already been told clarified rather than getting new news? Quote Link to comment Share on other sites More sharing options...
CJ Posted November 24, 2011 Author Share Posted November 24, 2011 Surely it's just clarification you are after though CJ? You are looking to have what you have already been told clarified rather than getting new news? At the last meeting she (the oncologist) cancelled the next days start of the chemo treatment to do the blood tests and confirm whether or not I had that gene she talked about. She had said that we could still go ahead with the MRI bone scan on my spine that was scheduled that afternoon and that she may then start the radiotherapy on that area prior to the chemo starting on the 7th December. I wanted to know why she had decided against starting the radiotherapy now. I was hoping a simple answer of something like "the chemo treatment is more suitable" or "I would prefer to do it all together" would have been forthcoming. At least then I would not be sitting here thinking of all the bad reasons why they haven't started now. In saying that, this Doctors bedside manner (and whole demeanour) leaves a lot to be desired. I think I have been spoilt by my surgeon who is an incredibly calm and patient man who takes time to explain and chat about my condition. The oncologist always seems to be in a rush to get to another patient. Quote Link to comment Share on other sites More sharing options...
tbourner Posted November 24, 2011 Share Posted November 24, 2011 Have you spoken to a Macmillan rep? They may offer support and guidance. Could you phone the doc and ask to bring your appointment forward? Missus said the scan results may be forwarded to an MDT but it doesn't sound like that in this case. Quote Link to comment Share on other sites More sharing options...
CJ Posted November 24, 2011 Author Share Posted November 24, 2011 Have you spoken to a Macmillan rep? They may offer support and guidance. Could you phone the doc and ask to bring your appointment forward? Missus said the scan results may be forwarded to an MDT but it doesn't sound like that in this case. I have just spoken to my Macmillan benefits advisor and he suggested contacting my cancer care nurse who I see when I visit the surgeon. I had forgotten about her and so will do that this afternoon. I doubt the Doc will help as her secretary had sort of intimated that she wouldn't see me until the next appointment. What is an MDT? Quote Link to comment Share on other sites More sharing options...
tbourner Posted November 24, 2011 Share Posted November 24, 2011 Multi Disciplinary Team, they have meetings to go over certain cases test results and files and stuff to discuss between oncology doctors and surgeons, nurses, carers etc. what the best course of action might be. As you've basically been told when and where I guess they've already made the decisions so not a case for the MDT. My gut says you shouldn't be worrying about this in particular, they are pretty busy no doubt and if it was a serious thing they would call you in to discuss before treatments. Quote Link to comment Share on other sites More sharing options...
CJ Posted November 24, 2011 Author Share Posted November 24, 2011 ..............My gut says you shouldn't be worrying about this in particular, they are pretty busy no doubt and if it was a serious thing they would call you in to discuss before treatments. Positive Col is back and agrees with you. Quote Link to comment Share on other sites More sharing options...
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