Great start to the week

Well, I’ve not got my week off to a great start. Have not been feeling very well for the past couple of days & after my routine blood test came back fine, it seems it is all down to exhaustion. 

Starting to feel more myself now so hopefully tomorrow I’ll be back to normal (whatever that is). 

Bloody typical when I’ve got a busy week ahead. I’ve had the nurse out this morning to take blood ready for treatment on Wednesday & had an appointment with my breast consultant. Got the day off tomorrow then it’s off to see the oncologist Wednesday morning and Herceptin & Perjeta in the afternoon. Thursday is a medicine review at the GP & Friday is my yearly mammogram. Saturday I’ll probably be collapsing in a heap & trying to do as little as possible. 

On the bright side though, Evie picked me some beautiful daffodils from the garden  

 

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Feeling like a fraud….

Occasionally, I have thoughts about my cancer that I find hard to understand or communicate, even after all I have been through, I m starting to feel like it isn’t real anymore. So much happened last year and there was so much to take in but now my appointments are quite spaced apart, it feels strange to say “I have cancer”.

I guess I have been thinking more like this after starting back at work. They are still unaware of my illness (my line of defence, they haven’t asked). How do you explain to someone that you have cancer which is incurable, but you don’t feel or look ill? How do you reassure people that you are perfectly fine to carry out your job even though the big ‘C’ looms over you?

When people hear cancer (and I’ll admit I felt the same), you think of someone being very ill and they either go into remission or die (sorry if that seems a bit of a harsh word). No one really talks about or knows about how many people are out there living with it and could be living with it for 10, 20 or many more years. There is plenty of advice out there about how to cope after cancer and how to ‘live’ with it (i.e. diet, fatigue etc) but nothing out there that talks about day to day life, how to actually live with it or how to look to the future. I love planning things to do, places to go etc, however sometimes I worry about how far in advance I can plan. I am hoping by 2018/2019 to finish my degree and graduate but is this planning too far ahead? Is it worth it? I guess if it were to happen within 5 years of diagnosis, they would have at the very least hinted at the possibility. However when I was first diagnosed I was told it could be 5, 10, even 20 years and that was before the chemo worked better then expected. Or was that my hint?

Anyway I’m disgressing slightly, the point of this post was to talk about how I feel a fraud when I tell people I have cancer. I have no visable signs of illness, I’m not in any pain and I have no side effects from my medication (yes, I know I should and I do feel incredibly lucky). However, this is what makes me feel like a fraud, there are so many people out there (too many in my opinion) who are suffering terribly and I am sat here feeling nothing. I feel how I did when I started this horrible journey, when I was first diagnosed I couldn’t bring myself to say I had cancer because it didn’t feel real, like they had made a mistake. This is exactly how I feel now.

I feel like I am stuck in limbo at the moment, trying to find out what the new me is like and how I fit into this new world.

And so this isn’t a completely depressing post, I thought I would end on a positive. My blood tests have all come back fine today so tomorrow I will be having Herceptin, Perjeta and Demosumab! (I am about 10 weeks overdue my demosumab)

My appointments etc….

As I’m sure you can imagine I have lots of different appointments to keep up with & when explaining to other people it can become a little complicated. So I thought I’d begin by going through the various appointments I have & then go into detail each week about what I’m having or attending.

  • Every 3 weeks I have Herceptin (by injection given over 5 minutes) &  Perjeta (given intravenously over an hour). The nurse comes out to me for these & usually spends about 3hrs with me as they have to also monitor me once they have given me the drugs. They also come out to me the day before to take bloods to make sure I am well enough for the treatment.
  • Every 4 weeks I have denosumab (by injection) which is a bone strengthened. The nurse, again, comes out to me but is only usually with me for about half an hour. With this treatment the nurse also comes to me the day to take blood 
  • Every 8 weeks I go to see my oncologist to discuss how I am, give me any results & make sure I am aware of what is happening next
  • Every 3 months I have a CT scan to check my head, chest & abdomen to see if there has been any further spread. 
  • Every 3 months I also have an echocardiogram to check for any heart irregularities which are a potential side effect from my Herceptin. 
  • Every 6 months I visit my breast care consultant for a check up.
  • Every 12 months I have a mammogram & ultrasound scan to monitor for any tumours or irregularities