It's amazing just how stressful "knowing, but not knowing" can be ... waiting for that second shoe to drop, holding yourself ready but unsure what to expect when it does. That's what this last week has been like for Donna (Mrs 365er) and me, though, as I guess is often the case, neither of us really verbalised this fully, or maybe were even fully aware of just how tense we were feeling, waiting for Thursday's appointment with the nice Mr Haematologist.
You see, we knew I had cancer again. But we didn't know what type it was, how extensive it might be, or what treatment might entail. We had just enough information to be able to worry, and, as is only human, to start imagining the whole gamut of possibilities. And while we spoke a little about our worries, neither of us were able to satisfactorily reassure the other that it would be okay; that it wouldn't be so bad ... because we just didn't know.
I was trying to be upbeat and positive for Donna, hanging on to the "we found it early, and I've got absolutely NO symptoms" mantra, which has certainly been helping me over the past week, but I know that while she wanted to "hear" that, Donna's thoughts, as were mine at times, were running riot with "what ifs". Sleep was possible, but early wakening for both of us has become the norm - for me, that really is the norm, I'm one of those awful morning people, but for Donna, seeing 5.30 am was not welcome. She told me that her sleep was fine, and her dreams were all food-based (courtesy of watching Australian MasterChef on Watch TV, boy, there is a heck of a lot of that to follow ...), but that once she opened her eyes, all she could think about was me and my cancer, and her fears about this - not a nice state to wake up to at all.
So come Wednesday evening, the day before the appointment, I think we were both a lot more tense that either of us were acknowledging. Then the doorbell went, and there was John, one of our neighbours, with a bottle of wine. Handing it to me, he told me it was "to help you sleep tonight". What a lovely gesture ... and how ungrateful of me to then proceed to talk John into coming out to the pub with me later that evening for a couple of St Patrick's Day Guinnesses as an alternative solution to the sleep problem! He fell for it ... and I even got to keep the wine! *GRINS*
But even the power of Guinness wasn't quite enough, and once again, morning came very early on Thursday. As my appointment was for 11 am, I decided to go to the gym and get a few miles running in as a way of distracting me from thinking about the appointment but even that didn't work really, and after a pathetic mile's run, I headed for the steam room and then home to wait. And while I was off doing my own distracting, poor Donna was at home, worrying just a little bit more ...
So when we finally sat in front of Dr Tueger (pronounced Tweeger), the nice Mr Haematologist, just before 11 am (yes, I did say just before our actual appointment time ... the service has been excellent at our hospital!), I think we were both wound up like elastic bands, waiting for the definitive diagnosis and plan for what would happen next. He announced that as he still hadn't had the second opinion on my biopsy back yet (bugger, it's been 9 days since it was sent, c'mon Liverpool, get a move on!), he couldn't be 100% in his diagnosis, but ... based on the information he had, and his examinaton of me ... as my lump basically walked, talked and looked like a Hodgkin's lymphoma to him, he was willing to say that he was 90% confident that it was Hodgkin's lymphoma!
But it was the next thing he said that made me realise just how tense we had been ... when he told us that the CT scan (head to pelvis) showed that there "are no other growths anywhere else in your body", the relief that washed over both Donna and I was absolutely palpable. I know I felt my eyes tingle in relief, but Donna just let the tears flow at that point. This was BIG: he went on "it looks to me like you have a Stage 1 Hodgkin's, and I'd even say that, as we've got it so early, it could even be classified as an early Stage 1A, because you have no symptoms. If I was going to have to have cancer, this is the one I'd choose!"
Funnily enough, that's what my last oncologist said about my first cancer - a malignant soft tissue sarcoma, that was excised quickly and from which I recovered very quickly! It seems that there may be a short list of "better" cancers to get in the minds of these medical types, and I've managed to get two of 'em ... for the record, it is my intention to stop after this one, honest!
Dr Tueger went on to tell us that treatment would involve chemotherapy, using a drug cocktail called ABVD, and possibly radiotherapy after that, though given how early this was caught, radiotherapy might not be required. He wants to meet me next Wednesday (March 24th) to finalise the details (and finally confirm the diagnosis, as the 2nd opinion should be back by then), but he is planning then to start my chemotherapy treatment on March 31st. He thinks I'll require just three cycles of chemo (usually four to six are required, I think he said, but again, because this has been caught early, he's looking only at three), and each cycle will involve going to my local hospital (a 10 minute walk away!) for the day to receive my ABVD cocktail of drugs on the 1st and 15th day of the monthly cycle. There are likely to be some side effects, but these can be managed, though he thought it might be best if I took time off work for at least the first cycle to see how I responded or was effected. I'd expected that I would need some time off, but as I work for myself and don't have the luxury of being able to be signed off and have supported sick leave, I am hoping I'll be able to get back to at least light work duties over the course of treatment, but if not, I'll cope, believe me ... the priority now is getting this thing treated and getting well again.
There were a few more things to discuss and arrange, but when we left the consultation with Dr Tueger, I know we both felt a lot lighter ... we weren't ignoring that I still have cancer and I do need to go through a fairly powerful course of treatment, but knowing that my cancer is only in the one location (my neck) and that we appear to have caught it really early, really did make an enormous difference to how we had been feeling about this.
But as we walked away, knowing full well that there are still hurdles to overcome, it did feel that after a long, tense week, we were able to breathe again!
I was trying to be upbeat and positive for Donna, hanging on to the "we found it early, and I've got absolutely NO symptoms" mantra, which has certainly been helping me over the past week, but I know that while she wanted to "hear" that, Donna's thoughts, as were mine at times, were running riot with "what ifs". Sleep was possible, but early wakening for both of us has become the norm - for me, that really is the norm, I'm one of those awful morning people, but for Donna, seeing 5.30 am was not welcome. She told me that her sleep was fine, and her dreams were all food-based (courtesy of watching Australian MasterChef on Watch TV, boy, there is a heck of a lot of that to follow ...), but that once she opened her eyes, all she could think about was me and my cancer, and her fears about this - not a nice state to wake up to at all.
So come Wednesday evening, the day before the appointment, I think we were both a lot more tense that either of us were acknowledging. Then the doorbell went, and there was John, one of our neighbours, with a bottle of wine. Handing it to me, he told me it was "to help you sleep tonight". What a lovely gesture ... and how ungrateful of me to then proceed to talk John into coming out to the pub with me later that evening for a couple of St Patrick's Day Guinnesses as an alternative solution to the sleep problem! He fell for it ... and I even got to keep the wine! *GRINS*
But even the power of Guinness wasn't quite enough, and once again, morning came very early on Thursday. As my appointment was for 11 am, I decided to go to the gym and get a few miles running in as a way of distracting me from thinking about the appointment but even that didn't work really, and after a pathetic mile's run, I headed for the steam room and then home to wait. And while I was off doing my own distracting, poor Donna was at home, worrying just a little bit more ...
So when we finally sat in front of Dr Tueger (pronounced Tweeger), the nice Mr Haematologist, just before 11 am (yes, I did say just before our actual appointment time ... the service has been excellent at our hospital!), I think we were both wound up like elastic bands, waiting for the definitive diagnosis and plan for what would happen next. He announced that as he still hadn't had the second opinion on my biopsy back yet (bugger, it's been 9 days since it was sent, c'mon Liverpool, get a move on!), he couldn't be 100% in his diagnosis, but ... based on the information he had, and his examinaton of me ... as my lump basically walked, talked and looked like a Hodgkin's lymphoma to him, he was willing to say that he was 90% confident that it was Hodgkin's lymphoma!
But it was the next thing he said that made me realise just how tense we had been ... when he told us that the CT scan (head to pelvis) showed that there "are no other growths anywhere else in your body", the relief that washed over both Donna and I was absolutely palpable. I know I felt my eyes tingle in relief, but Donna just let the tears flow at that point. This was BIG: he went on "it looks to me like you have a Stage 1 Hodgkin's, and I'd even say that, as we've got it so early, it could even be classified as an early Stage 1A, because you have no symptoms. If I was going to have to have cancer, this is the one I'd choose!"
Funnily enough, that's what my last oncologist said about my first cancer - a malignant soft tissue sarcoma, that was excised quickly and from which I recovered very quickly! It seems that there may be a short list of "better" cancers to get in the minds of these medical types, and I've managed to get two of 'em ... for the record, it is my intention to stop after this one, honest!
Dr Tueger went on to tell us that treatment would involve chemotherapy, using a drug cocktail called ABVD, and possibly radiotherapy after that, though given how early this was caught, radiotherapy might not be required. He wants to meet me next Wednesday (March 24th) to finalise the details (and finally confirm the diagnosis, as the 2nd opinion should be back by then), but he is planning then to start my chemotherapy treatment on March 31st. He thinks I'll require just three cycles of chemo (usually four to six are required, I think he said, but again, because this has been caught early, he's looking only at three), and each cycle will involve going to my local hospital (a 10 minute walk away!) for the day to receive my ABVD cocktail of drugs on the 1st and 15th day of the monthly cycle. There are likely to be some side effects, but these can be managed, though he thought it might be best if I took time off work for at least the first cycle to see how I responded or was effected. I'd expected that I would need some time off, but as I work for myself and don't have the luxury of being able to be signed off and have supported sick leave, I am hoping I'll be able to get back to at least light work duties over the course of treatment, but if not, I'll cope, believe me ... the priority now is getting this thing treated and getting well again.
There were a few more things to discuss and arrange, but when we left the consultation with Dr Tueger, I know we both felt a lot lighter ... we weren't ignoring that I still have cancer and I do need to go through a fairly powerful course of treatment, but knowing that my cancer is only in the one location (my neck) and that we appear to have caught it really early, really did make an enormous difference to how we had been feeling about this.
But as we walked away, knowing full well that there are still hurdles to overcome, it did feel that after a long, tense week, we were able to breathe again!
Colin, I'm so glad to hear you apparently have such a best-in-class growth (!), and that you've caught it early, with no others growths present. I'm sure hugely reassuring as you say. Most of all, though, I'm struck by your positivity and determination (given depth by your honesty about this being a challenge); and that you are willing to talk about all this in a way that must make a big contribution to 'normalising' the topic so that more info is shared for the good of others.
ReplyDeleteAll the best with the chemo!
Jennifer