Busy old week

The past week has been quite busy.

I have started the next module of my photography degree (& the required reading😩)

I have also had my 3 weekly top up of herceptin & perjeta. A cold has joined in the fun so I’m feeling quite drained at the moment (all in time for Tom to start his 5 working days). 

I saw the oncology nurse this week & due to some pains in my legs, I’m going to have my routine CT scan & an MRI scan next week to rule out anything horrible. 

Good points this week include- breakfast with my best friend, reading “Dream a little Dream” by Giovanna Fletcher, preparing for Evie’s birthday & discovering that, not only Evie, but now Connor is shaping up to be an excellent artist! 😄🎨

Advertisements

Half way through the week

Well, Wednesday is drawing to a close. I’ve completed 4 of my 6 appointments for the week and my cold is finally starting to clear off.

So here is a round up of the week so far

Monday- Nurse- taking bloods ready for treatment on Wednesday

Breast Consultant- beginning to look at reconstruction or some sort of surgery                                                               but this is dependant on the oncologist

Tuesday- Day off

Wednesday- Oncology Nurse- Check up and arrange CT scan and Echocardiogram, she has                                                             also ok’d surgery but has to double check with the                                                                               oncologist and we discussed me taking Flaxseed (apparently                                                             it can help suppress cancer cells if you take 1-2tsp a day so                                                               I’ve ordered some to be delivered tomorrow)

Nurse- Herceptin and Perjeta- 3 weekly top up, this usually takes around 3                                                hours (including observation period)

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

2 out of 3 ain’t bad

Well today was treatment day & sadly I have only been able to have 2 of my 3 treatments. My Herceptin & denosumab are both given as injections, however my Perjeta is given intravenously. This means having a cannula put in. It is usually difficult as I have small veins (side effect from chemo) but they manage. Today, after 4 attempts they were still unable to cannulate me so treatment had to be abandoned & rearranged for next week. Here is how my right hand is looking at the moment. But I assume the bruise on the inside of my wrist might get a bit bigger

IMG_5550

IMG_5549

The nurses are also requesting a port to be put in so they do not have to cannulate me & it also makes it easier to take blood. If I’m honest, I have never heard of a port so I decided to research them. Here is an article for those who are interested
http://m.macmillan.org.uk/article/name/cancerinformation-cancertreatment-treatmenttypes-chemotherapy-linesports-implantableport

Good news

Well today I have been able to breathe a sigh of relief. It has been announced today that Perjeta, the drug I receive, will continue to be funded through the Cancer Drug Fund. Today was when 6 drugs used for treatment for breast cancer, as well as drugs to treat other types of cancer, would have their fate decided. Perjeta is 1 of 3 drugs used to treat secondary breast cancer that will be kept. Sadly 3 drugs which are also used have been axed.

From my personal experience & from what I have heard from the nurses, Perjeta has very few side effects and, although, it is given intravenously there is hope that in the future this could change.

http://www.breakthrough.org.uk/news/all-news/cancer-drugs-fund-announcement