After that appointment we got the kids and went home it took us a few hours to tell the family. I couldn't speak with out crying for ages all I could think was that this was my worst fear .From when ever I had children I always had this fear that the same thing would happen to my children as it did me, my mum died when I was five..now here I am and my youngest is five and iv been told I will die from cancer but no one knows when. This has taken a lot for me to get past that I won't die straight away and I will be here to see them grow up(everything crossed). That part may have been hard for my family to read considering when I speak to them im the most positive and normally telling them that everything will be ok. Some days are hard but mostly I am positive.
Making those phone calls were very hard it was awful hearing everyone cry down the phone asking questions that I didn't know the answers to. My little sister Erin wasn't as shocked it had spread she had done what I told everyone not to do she had been on dr google so she was more prepared for the news than everyone else. There was lots of swearing and why's it's not fair but everyone was trying to be positive by saying it will be ok and we will just get past the next scan and see what happens next. Then we had to call our friends who also had lots of questions and tears, everyone just kept asking what they could do to help and there wasn't anything really other than to keep everything as normal as we could for the kids.
After telling people news like everyone wants to come and see you which is lovely but especially hard for my side of the family who are all over the country and not as easy to just drop things and get in the car pop over. We have been very lucky that Scott's mum and dad are around the corner so always there to help with the children.
My appointment came through for my PET Scan with this scan you have to be completely relaxed all day before so I wasn't alowed to do anything (one good thing to come from it) This scan was done in a mobile van in the car park at lister hospital which looked daunting but was actually fine its exactly the same as a scanner room but every now and then you can here the van start up 🤣. This scan I had to have a cannula fitted then had radioactive liquid injected that circulated around my body and shows a 3D image so they can see the spread of cancer in more details. You do have to wait an hour once the injection is done for it to work so I thought I'd take my new book to read. I didn't manage ine page I had two little old lady's who were really nervous so I sat and spoke to them... note to self take headphones when chemo starts if you don't want to chat 🤦🏼♀️🤣.
After an hour I was called in I was told to my hands above my head and lay still. They took the scans which took about 20 minutes my arms went dead because I didn't make sure I was comfortable enough then was too scared to move. I could have asked them to stop and start again but just wanted it done and over with. Finally it was done and time to go home unfortunately I couldn't go near the children because of being radioactive luckily my dad was up here from Plymouth so off I went to sit in the pub garden and have a drink with him.
One more thing ticked off hopefully closer to starting treatment. I had my results from that appointment on the 16th September I went into this appointment with the worst case in my head I was stage 4 incurable and that's exactly what my nurse told me. She did have one piece of good news I didn't have any cancer in my liver I had 2 lesions in my lungs and a lymph node in my pelvis and my rectum she kept saying this is a really positive scan result so I was happy. She did however say something had shown up in a gland in my neck so I'd have to have more scans. This was the most frustrating thing for me I just wanted to start treatment and yet I'm still kept in limbo off what's going on.
I was told that I would start chemo and would have an appointment soon with my oncologist but they didn't know when. Id also have to have an iron transfusion before treatment.
When we left Scott was livid he felt like we didn't get enough information from the appointment and just felt so annoyed that nothing was happening treatment wise. Also that I was going to have my scan again on my own and told that he can't come in for my chemo with me which for him makes him feel like he is doing something and supporting me. He does support me loads and been doind more than he should since my diagnosis but for him he feels like that's just everyday things he does anyway.
So nows the time to wait for my next scan and carry on as normal!!
https://www.nhs.uk/conditions/pet-scan/
I did have my iron transfusion in between this appointment and my oncologist one this was pretty straight forward have a cannula and infusion for an hour and half this time I had got my hopes up that Michelle would be able to come in with me if they wasn't busy. But obviously knowing my luck she couldn't come in so she sat outside and waited for me bless her. That weekend we celebrated Elizabeth's birthday and my nans 80th party it was lovely to see all the family and have fun 🥳
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