This past week or so has been like a rollercoaster ride with no brakes and one of the worst aspects of it is that I struggled to be able to articulate what was going on and my emotions were so jumbled I struggled to not have an anxiety attack. It’s has taken until now to be able to get my head together enough to write a coherent blog. – but I warn you now this is going to be long and convoluted.
Fairly gentle slope but downwards all the same – It all started with my medical oncology appointment last week some of which I reported on in my last blog post. One thing I didn’t report on is that in our discussions I had mentioned that I wasn’t working next year but intending to go back to University – Dr RB was concerned about the workload this would put on me and even when I said I would look at starting out gradually (part-time doing a couple of papers) he was still very much ” be careful that you dont commit yourself to too much”. This upset me as I felt he expected me to just be “a cancer patient” but if treatment is going to be ongoing I can’t sit at home not getting on with my life. Especially if the preventative medication works I am looking at maybe another 20-30 years of life and I have got to do something with them. This emotional downward slope was accompanied by extreme nausea and dizziness after my CT scan on the Thursday so that didn’t help matters.
gentle slope up again – By Friday night I was well enough to go out with OH to a champagne wine tasting. It is something we used to do before ‘Gertrude’ and had hoped to get into again but with the research I have done on my own about the new drugs they are looking at putting me on, Xeloda in particular, can have a bad affect on the liver and kidneys so if I am on that I may have to forgo the alcohol. That is a pity because it was one of the activities that OH and I really enjoy together – the whole wine and food tasting thing. I feel guilty that he won’t enjoy doing these sort of things because I can’t join in with him. It was a really good night and thoroughly enjoyable.
Two other things happened in the weekend which also helped me go up emotionally, feel less sorry for myself, although I felt emotionally down for the people involved.
One was that a friendly acquaintance of mine lost her husband suddenly and unexpectedly and I read a blog about a woman in the US, Anissa, who had nursed her young daughter through leukemia , has just suffered a major stroke and is in a coma at the age of 36. Compared to these two situations, mine seemed trivial and I started feeling less sorry for myself.
Rollercoaster zooming up and careering wildly
For 20 minutes on Monday I didn’t have cancer
When I had my CT scan done on Thursday they had said that my results would be available to my private breast clinic (the private radiology is next door to them and they work very closely together) at my appointment on Monday. It wasn’t.
Because BS had no CT results to go on she was quite dismissive of my pain and tried to convince me that it was just scar tissue or other issues – that a lymph node wouldn’t be giving me the pain I was describing -even though my oncologists were all convinced otherwise. CG who is the breast physician I see there was also “lets look n the positive side until we get the CT results” they tried to chase up the radiologist but they werent going to be in for another half hour or so. So they asked me to sit in the waiting room for a little while until they could get hold of the radiologist.
So there I am sitting in the waiting room – mind going a million miles a minute.
Could it be true that I haven’t had a recurrence? If it was true it meant I had a very real chance of never having a recurrence and life returning to normal compared to the “dont take on to bigger workload outside dealing with your cancer” message I had got the previous week.
I’d feel ecstatic although a little foolish being able to tell my friends and family that the doctors had decided it wasn’t cancerous after all.
Rollercoaster zooming down
BS called me back into her consulting room. The first thing I said to her was “I’m really confused Dr H etc have all been convinced that this node is cancerous and I’ve even asked Dr H whether it could be anything else and he has said no. And now you are telling me that it might not be a recurrence”
BS says “Now that I’ve looked at the CT scan and talked to the radiologist I’m pretty sure that its cancerous too”
I literally felt myself come crashing down again.
She went on to say she wasn’t convinced that all my pain is from the node and the radiologist has recommended for me to have a bone scan too. So I went from not having cancer back to having it in my node and possibly metastasised to my bones.
She also said that surgically removing the node wasnt really an option a) because it’s a very invasive operation close to the lungs and b) unless they could be absolutely sure that was the only site of cancer and that was unlikely it could cause more problems and that chemo was the better way to go.
I left their offices in a daze – what I had expected to be a straight forward discussion on whether or not surgery was an option – had left me feeling confused and very anxious. Talking to the Cancer Society liaison nurse later on in the week she asked why I hadn’t taken someone with me – but the point was I had expected it to be straight forward and hadn’t thought I needed a support person (OH usually accompanies me to Oncologist visits etc but I like being independent sometimes)
I felt so worked up I almost thought I was going to have an anxiety attack.
Towards the end of Monday afternoon I had a call from Dr RB – BS had got hold of him and discussed our visit and he was ringing to confirm that we were going ahead with chemo although he wanted to wait till Dr H came back at the end of the week to confer with him about which chemo I would be going on in the interim and my eligibility for the trial. He has also put me down to be scheduled for a bone scan as he agrees with BS that it should be investigated as well. I am glad he did that because it relieved some of the anxiety/confusion I was feeling. I felt a little more certain that we had a plan.
Rollercoaster on the level but still zooming along with no brakes and careering round some scary corners
I was glad that I had already booked a session with the counsellor at the Cancer Society on Tuesday because I really needed it. She was the first one to call it a rollercoaster and wasn’t at all surprised that I was feeling so stressed and was surprised it wasnt more so. That I wasn’t in her office in a bundle of tears. It was good to just sit there and go blah blah blah and get it all out including acknowledging for the first time that I was really angry with BS for saying what she said to me initially and giving me false hope – that it was ok for her to think it but she should never have voiced it out loud to me until she had looked at the CT scan.
Wednesday I met up with L my only NZ ‘IBC sister’ that I know and it made me acknowledge how alone I feel with all of this. She is wonderful and I love her for it but she is one of the few people I feel I can be truly honest with and that vaguely understand where I am coming from. She is a 10 year survivor and I still hope to be one day too.
One of the corners I have had trouble talking to my international IBC support network about it. The mailing list there lately has become a little over run with concerns about US healthcare reform and policy and there has been some argumentative and derogatory remarks made about other members from opposing sides of the healthcare debate.
NZ medical care has been used by one of them as an example of “bad” socialised medicine and I felt that anything I wrote would be used to fuel that debate. My personal view is that if you have good healthcare insurance in the States you do get better care than in NZ, but if you don’t you get worse, and it is not always by choice what health insurance you’ve got.
There has also been discussion and put down of those with negative attitudes and I have felt in such a negative attitude this week I felt that I might be attacked instead of supported. I felt that I was worrying only about one node when some on the list are battling a lot more than that.
another corner I had some anonymous person leave a comment on my blog that they thought my response to the “bucket list” flyer was totally overreacting. I have to approve any comments that are left on my blog and the person had left a fake email address so I have no idea who she is or how she came to read that post. I chose not to approve the comment. I acknowledge that I was being very sensitive but that was the whole point to my letter/blog post that they dont know what emotional state of mind someone is going to be in when they receive such a flyer and therefore it is inappropriate. I acknowledged to the woman who put out the flyer, when she apologised that if it had been any other day I might not have reacted as strongly. I also think that whoever left that comment, unless she is in my shoes, can’t judge me. The person writing that comment upset me because if I can’t write my feelings on the blog then it isnt a true reflection of my journey.
and yet another corner With my dyed hair and glasses I look pretty good and I am bumping into people who I haven’t seen since before Gertrude or what is worse bumping into people, who saw me when I was hairless and looking unhealthy during treatment last time, who are ecstatic that I am looking so well. The former I have to tell the whole “Gertrude” saga to and the latter are actually harder as they are all like “It’s wonderful to see you looking so good – I’m so glad you’re through all the treatment now” and I’m like “Ah …um…well….”
Some of the people I tell that “Gertrude is back” their reaction is really hard to handle – you can tell by the look on their faces that they think I am going to die. I end up minimising both the situation and my emotions to stop them thinking the worst.
The thing is until Monday I had a pretty good handle on my emotions but with that little glimmer of hope my emotions went up then crashing down again and I am redealing with stuff I thought I already had a handle on.
Do I think I am going to die from Gertrude and her spawn? The answer is that I acknowledge with this recurrence there is a higher chance of me dieing from cancer than there was before. The results after surgery were so good there was a very good chance of me living a long ‘normal’ life but that chance has been reduced with this recurrence. The long-term effects of the medication I go on to treat this recurrence and hopefully prevent others will also probably shorten my life expectancy. OH, being 8 years older than me, had always thought he would die first and is struggling to come to terms with the idea that I may die first.
So do I think I am going to die of cancer? Possibly, but I stress to people, that does not mean I am dieing of cancer now. I have a chance of it becoming a terminal illness but it is not a terminal illness at this point in time.
The cancer society counsellor thinks I have got a very healthy attitude to it.
same corner but more of a loop I decided against attending the funeral for my acquaintance’s husband and sent my condolences by sympathy card through my sister who is a closer friend of this woman’s. I knew I would bump into many old friends/acquaintances that may or may not have heard about “Gertrude” the first time round and I did not want to be telling them at the funeral.
It has taken until now for my emotions to feel more in equilibrium, for me to lose that tight knot of anxiety that was ever-present in my chest. I am thankful to my friends S and J who I spent time with this week – to L my IBC sister and to SisM for being a listening ear also.
Am I off the roller coaster? No but I am in a section of it where it has slowed down enough for me to look at the scenery surrounding it and not gripping the rails hanging on for dear life screaming AAAAARRRGGGGHHH!! at the top of my lungs.
I dont know whether I’ll reach the terminus soon and be able to get off and go enjoy some of the other rides at the park or whether there is still some twists and turns and ups and downs to come but for now I have a reprieve.