Ultrasound for neck gland

Why is it that your brain starts to tick over in the middle of the night? Its dark, its quiet, I have already been asleep for a little while but have woken up and now unable to go back to sleep. I am due to have my ultrasound on my neck gland at 11.00am (its now 1.23am) and I am nervous as hell. I have tried not to think about it too much and its good because everyday life gets in the way, but those times where I have really stopped to think about what could be, I get such a sinking feeling in my stomach and feel quite nauseous.

Its hard not to worry about what could be. This is what having this awful disease does to you. It makes you paranoid at every turn. Fingers crossed that this worry and paranoia is all for nothing - I think I would be quite ecstatic...

If a biopsy is done at the same time as the ultrasound, it could take up to two weeks to get the results and then it will be a matter of when my next oncologist appointment will be to find out.

Wednesday 16th November, 2016 - 2.20am

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I went for an ultrasound on my neck gland on Wednesday. It has on a pretty regular basis felt achy like when they are swollen and it hurt slightly when I would swallow. Not to the extent as when you have an infection but nonetheless it is there. It comes and goes. The ultrasound has not shown up anything which is a huge relief, she said both sides look absolutely normal. I felt like a huge weight had been lifted off my shoulders. I wonder what will happen now. Will it get investigated in some other way or simply keep a close eye on it and see what happens over time. I am sure this will be discussed at my next oncology appointment. But such a huge sigh of relief...and no biopsy required!!!!

I had a close friend come with me for company which was lovely and we killed a couple of hours between appointments. Ultrasound at Greenlane and then off to Auckland for my infusion. We even managed to get in a bit early, which was great for getting home on the motorway. Haven't appeared to have any side effects at all, but just this evening am feeling like I am seizing up quite a bit. My back is aching and also the left side by my implant is aching. That is something new but possibly just because I am so tired.

another infusion over for another 28 days - these make you realise how quickly time goes by

Friday 18th November, 2016 - 10.56pm

Video clip

Since October is breast cancer awareness month, I decided to share my story with work in a visual way. I asked if they would be interested in doing a video of me talking about my story, to try to encourage the education of breast cancer. And so it was done. It was put on works facebook page and people were encouraged to share it in order to spread the word. I shared it to my page, asking others to do the same. The end result was that it was shared 43 times, 'viewed' 1700 times and apparently according to stats was 'seen' over 5000 times. I don't quite know the difference between viewed and seen but these were the stats given. The video has also been put on works website and put up on youtube, which hasn't had quite the same impact but that is a much bigger platform. I am rapt with the response. It has definitely exceeded any figures I may have had floating around in my head.

I have included a copy of the youtube video, for those of you that would like to see it. There are no bells and whistles. It is simply me, talking in a short space of time about my diagnosis, what will happen and why I wanted to do this video. It is something I have become quite passionate about and even now as I look at it, I tear up. It is still so raw...I think it is because it is still hard to believe that this is really happening.

I think I would like to continue doing this sort of thing, perhaps to small groups. Not sure I could summon up the courage to speak in front of a lot of people. But everyone needs to realise that this is a deadly disease. If not caught early you could die.

Thank you for watching,
Tania.

Thursday 10th November, 2016 - 9.55pm

Thank you

I had a pretty 'down' night last night after going to bed and starting to think about things.  This evening I have had a number of people make direct contact after reading it to make sure I was ok. I am fine however, I am sure there will be more of those times to come.

I really appreciate the concern shown, and just wanted to say 'thank you', and for a variety of reasons. For following or reading this blog, for touching base from time to time, for caring and for allowing my thoughts whether they be good or bad, into your life.

Monday 7th November, 2016 - 12.22am

A dark moment

As I lie here in the dark alone except for Ember, (our black cat) who is lying right up against me, fireworks going off all around, I feel a wave of sadness and I am scared. Thoughts have gone back to the neck gland and the worry of what it could mean. I am wondering should I start clearing out the crap in my drawers? Should I put on hold the plans I have to go see my sister in Aussie? What if I am going to need chemo? Does that mean I will have to chuck my job? How will we cope financially since I am the income earner and pay all the bills? I feel sick to my stomach, and I feel so so alone. I don't want to burden anyone and its hard to explain to others the gravity of how I feel. This is what having a terminal illness does to you. Maybe terminal is too extreme...lets say incurable. I want to cry but I don't want to because I hate crying. I will just lie here with a stiff upper lip and stew on things until I stew myself to sleep.

I feel a sense of loneliness with the girls having grown up. They are getting older and have lives of their own and thats how it should be but I miss doing things with them. We don't even have dinner together anymore. Even the basics have gone by the wayside. They don't really need me anymore so I guess my job is done. I don't mean that in an awful way, its the circle of life isn't it. One day I won't be here and they will feel it. But in the meantime, I refuse to be one of those mothers who hangs onto her kids like a limpet and has to be going off out with them everywhere.

I hate that this has happened. I try so hard (and most of the time its easy) to be positive and to continue living my life but there are times when I want to rip my hair out and scream til I am blue in the face. This is so unfair...isn't it enough that I lost David all those years ago and that I lost my two babies before we were finally successful in having our two beautiful girls. Isn't it enough that I have had to take over the lone struggle of being responsible for running the household (financially) because someone decided to chuck their job and unsuccessful in finding another one...isn't it enough that I have to put on a brave face for everyone else because people can't cope with the reality...isn't it just enough?

Thank goodness I am a strong person, or am I? You just have to handle shit, what other choice do you have...

Do I feel better after getting this all out? No I don't.

I feel sick to my stomach and I feel mad - mad and scared

Saturday 5th November, 2016 - 11.34pm

Be kind to my body day today / oncology update

Last night hubby lit a fire out the back in the umu hole, to burn twigs, small branches and leaves from trees he had cut down earlier in the year. The 'kids' were all out, it felt a bit lonely so I sat outside with hubby watching the fire burn. Where once upon a time I would have plonked myself on the ground, I sat myself in the beach chair I had been given (since I can no longer lie on the ground at the beach either), cuppa in hand, mobile phones and ipad beside me and enjoyed some nice quier time watching the beauty of the flames. Unfortunately I also had a few small embers blow my way of which one landed on my leg without me realising until it grew extremely warm in the one spot, so,had to jump up and shake it off! Blow me down, then another landed right beside me on the plastic of the chair I was sitting on, so had to jump up quickly (no such thing for me anymore!) again and brush it off. Husband getting a good laugh out of it, actually so did I. Probably the fastest I have moved in a long time, or at least in the last 12 months.

The fire was letting off so much heat, and I was a bit worried that an ember might land on either my implant or my prosthesis so kind of kept my arm over my implant. A new prosthesis you can buy, not quite so easy with an implant eh...

Unfortunately this morning when I woke up, my body was completely aching all over...shoulders, back, feet and I had no oomph so decided to stay home from work or at the very least have a bit of a lie in and go in late. Me thinks it is from sitting outside for those 3 or so hours in a beach chair and with it chilling down as the evening wore on. Anyhow, I tossed and turned with the decision whether to stay, whether to go, all the while trying to remind myself that sometimes I need to take time out and be kind to my body and it really felt like this was one of those days. Unfortunately I have always felt guilty when I have stayed home, even when my girls were little and were sick. The other factor is always money - what don't we pay when I haven't had a full week of work? I mean we do ok but I hate dipping into our meagar savings to make up the shortfall. Crap isn't it, when you have an incurable cancer and you still have to worry about bloody money.

So now this stupid cancer has an effect on how I chill out at the beach ((I even have to re-think the beach chair idea) and when we are having a fire out in the backyard. This has always been a past time which we as a family have enjoyed, usually toasting marshmallows over it while getting smoked out and sore eyes - its fun..but smelly.

But on the up side, I have stayed home today and was blessed with a visit from an old work colleague whom I have not seen since he moved jobs. It was such a surprise, it completely blew me away and has just made my week.

Oncology update:

I had a phone call yesterday afternoon from the oncologist whom we saw the other week. In a previous post I had mentioned about telling the oncologist about how one of my neck glands feels a little sore from time to time but on a regular basis. She had examined it and could feel something but when I would turn my head from side to side, it would disappear. Originally she had said they would keep an eye on it but it has now been decided to send me for an ultrasound to see what they can find. If there is anything of concern, a biopsy will be done at the same time. So now, it is must a matter of waiting for an appointment.

For the rest of the afternoon and even as I think about it now and type this, I feel ill in the pit of my tummy with the fear of "could this be cancer growing in another spot of my body". What if it is in my gland, that means it is not just in my bones - it is in a soft tissue. I have been told if you have cancer in your bones, you can live for years. How does it change if it moves to soft tissue? And then when I went on fb not long ago, I read something about someone having BC in one of their neck glands. I had to close it down quickly, I couldn't face seeing it and couldn't believe the timing of it. The fear is always there. Nothing is predictable.

I am impatient to have this ultrasound done but I am terrified of what they will find. Its pointless getting in too much of a funk about it, its a waste of energy and will just drag me down, but believe me, its there (the worry), sitting in the back of my mind, churning my tummy over. Lets hope its all for nothing...

Friday 4th November, 2016 - 3.46pm