There is a battle going on inside of me….

The weekend was another memorable one. Pete was given a car for the weekend… not just any old car but his favourite car. We had the pleasure of driving up to our friends in a Bentley! Pete was like a kid in a sweet shop. It was so nice to see him so very happy.

I had a pretty bad night Friday night and despite wanting to stop annoying myself and anyone around me I just couldn’t help the niggles and pains I was experiencing and I still had one more night of injection side effects to go through.

I decided I wouldn’t have any pain anymore and took plenty of paracetemol. I still didn’t sleep and I woke grumpy again. Part of me was wondering is it the vaccines, is it the il2 injections, or is it the scorpion venom?

I simply can’t put my finger on it. To be honest all weekend I was off. Not my vibrant self and it was getting me down a bit. I hate not being ‘right’. We still had an awesome time with friends and I loved cruising around in a £200,000 car and having a little drive of it myself!

When we got home we cuddled in the garden for a while and Pete was just lovely as always. He made a tasty paella, and made the ambience perfect for our friend who spent the evening with us. It was just bliss. I think having friends around and doing things is good because it takes my mind off ‘things’. It’s when I’m left alone again I’m not myself.

Today I have been really busy but one great thing is I slept really well last night compared to the last week. I had no pain what so ever. This indicates it must be those il2 injections. I think I may reduce the dose next time around.

I still haven’t received any scan results and the secretary has even emailed the radiologists to find out where it is. I emailed the secretary to tell her that I will not be attending my clinic appointment tomorrow in that case. She totally understands. To be honest, today I am past caring what that report has to say. I almost don’t want to know. I am living in denial today.

This morning I was woken by my lovely man who got up early and cleaned everything from last night, bought me hot lemon and my medication. He told me to stay in bed and try to chill out more because I don’t do enough of it! This is the man that works all the time, has the pressures of the whole wide world on his shoulders. He is so super wonderful it makes me cry. I feel guilty for moping around and not being on top form.

I don’t know what is wrong with me. I am not myself. And I don’t like it. I feel a bit in limbo. I am nearing the end of my health counselling course and there are a lot of decisions to be made and work to be done. I simply don’t feel like it right now. I keep wondering if it is hormones because I usually want to do everything! I’m normally planning and doing and never stopping. The not doing at the moment is making me feel worse I think.

I have so much to be happy for and so much to look forward to. Yet I feel like my life’s plans are all squiffy. I am not sure if I am putting things off and thinking I’ll do them when I am better. How much better do I need to be? Let’s face it there is nothing wrong with me really. Only what they tell me.

So there isn’t anything that should be stopping me doing anything! I need a plan of action for every element of my life; a re-evaluation. That’s it. I need to step back and make a decision on what it is I want to change and how I want things to be.

I want to incorporate the health counselling into my daily business and advise those who need my help such as other canSer survivors who are just beginning, half way through or who have come out the other end and want to stay well. I can advise on every element of my ten point plan and that includes exercise, nutrition and supplements, alternative treatments, meditation and consultants. I am living proof of the information I can provide.  OK, I too have down days but that only makes me more real.  Even I need advice and therapy too, but I think by making a plan I will get myself to a happier more vibrant me again.

It’s amazing how such little niggly things can really throw you off course. Not only the pain at night but the acidic feeling in my tummy has been upsetting me. Pete pointed out that there is a battle going on inside of me. Of course I am going to feel it sometimes! He is so logical…But that’s why everybody needs somebody.  And I intend on being that ‘somebody’ for many people hopefully, who will require my services.

Here are a few shots of our weekend that made me smile;

I feel all.. floopy.

Wednesday morning I headed down to Tooting to St Georges again, this time not only to collect interleukin 2 injections but also to see Professor Dalgliesh. I left myself plenty of time but unfortunately my train was cancelled. I was too worried though. I got to the hospital half hour late and I expected to wait like I would at the Churchill in oxford. They are always running late there but I walked in to an empty waiting room! What a novelty. I was seen by Nneka who provided me with the injections and then Prof wanted to see me… for all of about twenty seconds. He asked if I had any symptoms, No. I chatted about the lumps in my tummy that the il2 injections leave. Apparently that is normal but if I was to let the injection warm up to body temperature before injecting then the lumps wouldn’t occur. Oh, now they tell me!

So as quick as I arrived, I then left. Pete had messaged me earlier to say that he was having meetings in London that afternoon so I hopped on the tube and went over to Knightsbridge to meet him after. It was a great afternoon mooching around the shops trying not to buy anything and then I had a message from a friend saying her partner was in the vicinity and he was on his way to meet me!  Don’t you just love spontaneous events? We sat in the sun having a few cheeky Pimms and lemonades whilst we waited for Pete. Then along he came and afternoon went into evening. It was just lovely. I had a really good day.

I did my injection in the car on the way home and by the time I got to bed it was nearly midnight. It was worth staying up late for though. Unfortunately the injection gave the same side effects as before. I had a fever that woke me up about four hours later. It’s hard to describe because not only do I feel hot I feel like there is a hole in my back; a pain deep inside but towards the back of me. I imagine a hole in my spirit, my chakras. It’s so weird. I can’t lie still and I feel utterly awful. I popped a few paracetemol as usual but they didn’t have any effect.

Needless to say yesterday wasn’t such a good day. I felt just rubbish. I felt drained, sickly and just plain achy. I walked so much on Wednesday my legs ached (but on my UP app it said I had walked 22,000 steps! Yay!) And I just couldn’t snap out of it. I had a day of clients too until 7.30pm. The good thing though, was working did take my mind off it and I didn’t wallow in self pity but the end of the day couldn’t come quick enough.

I cooked us an omelette for tea. Something nice and light and even that I couldn’t stomach. I am such a moaner. All day I felt teary and just absorbed in my own self pity.

It probably doesn’t help not knowing what my scan results are. I am not sure why I let them define me? It makes no difference really what the results are. All they do is decide what my next step is. But I can’t help but wish for an exceptional outcome. Am I being too unrealistic to expect that?

With all these aches, pains and twinges part of me thinks it’s great because my body is responding to the injections and vaccines. The other part of me thinks that there is something profoundly wrong. But my little body is going through quite a lot. I mustn’t be too hard on myself.

I do feel though the last month or so I haven’t been on an even kill. I can decide if I have had more off days than good ones. I miss feeling awesome all the time. Most days I have plenty of energy and always exercise. Today was different. I simply couldn’t muster up the energy. Last night I did sleep better, I didn’t take any paracetemol after having my il2 injection and I felt a tiny bit better. I did have a hot, sweaty night again and I did feel achy and odd. Thankfully not like I had a hole in my back.  It’s hard to describe. At the moment I feel my spirit is off. I know I haven’t been having as many treatments from other therapists but I am not sure they could help.  I feel all, like Phoebe from Friends would say floopy. I am in need of being in balance and I don’t know what will do that.

Update on my arm: The vaccination I had last Thursday has now erupted and looks like a volcano. It is sore and pusy. It’s so unattractive but in the scheme of things, who cares, right?

On the plus side, Pete is being an absolute diamond as always. Every morning he brings me a hot lemon drink and tucks me up whilst he leaves for the gym or work. An hour later he calls to see how I am. I couldn’t ask for a better way to start the day. I am really enjoying my morning rituals. I even love the green juices now. I always knew they were beneficial but having vegetable juices is quite hard to stomach. I don’t know what has changed but I really love them.

My life is brilliant. I just wish I could sleep soundly and feel replenished in the mornings. I want to be full of energy and have a zest for life.

I am still waiting for scan results. Despite the secretary saying she would email them, the radiologists haven’t actually done the report yet. Really? Well if by Tuesday they haven’t been done I won’t be going to see Professor Harris. I know they will be ready then and I just can’t stand sitting in the clinic waiting room dreading what he will say.

I know this is playing on my mind. As I said it really doesn’t matter what they say but I so want good news. I need to shift this living every three months. It isn’t good for my health. Or Pete’s.

When I’m feeling tired and emotional I just wish I could worry about other things like normal people do, like where to go on holiday , or having to save up for home improvements. Living with bloody canSer gets so boring. To be honest I wouldn’t mind, thank you very much, if I could just be told it was all over and then I could focus on helping other people. But… that’s just life. My life.

Blah, blah, blah… I bored of moaning. I have so much to be thankful. This morning I opened the door to receive a package. I opened it up and it was gift bought for me by Pete. It’s a stylus pencil for the app I use to make my drawings. We have been waiting for months for it to arrive in the UK. Yay! I am so chuffed. Also i have a man here right now. Sounds odd right? J He is measuring up and designing my kitchen. I have wanted a new kitchen for years and we decided to at least take the first step and get someone in to design and price it. Then we just need to see if we can afford to have it done. Gulp. Anyway, these are all things to look forward to.

This weekend we have lots to look forward to, seeing friends, laughing and joking. Just what we need…..Happiness….

Deflated and unsure…

Pete and I went to bed early last night. So early we had about 11 hours sleep! Boom! I love the Zum Lowen’s beds. Dragging myself out of the warm and comfy slumber this morning I scooted to the clinic to have my bloods drawn ready for up and coming visits. I was due to return at 11am for the next hour long treatment but as they had time I had it all done at once.

I had a chat with the nurse whilst lying there. She was telling me how much easier things are now.e asked if I remembered last summer with all the Portuguese patients. Do I? Boy yes. It was so busy and many mistakes were being made.

I asked why it wasn’t as busy now. She said it had calmed down since people had started abiding by their appointments. She said that for a shirt while people would stand there at the counter demanding an appointment. They had travelled from Portugal without having an appointment and cry until the doctor saw them. It’s amazing what desperation does to one. The staff would start at 8am and finish at 8pm. I guess that’s busy over there.

Thankfully peace had been restored.

An hour or so later we met with Dr Nesselhut who was lovely as usual and this time had a doctor from Amsterdam sitting in with us.

We explained again the scan results and he seemed concerned by the necrotic ones that were active in my lymph nodes. He said that he would like/expect no changes so if the next scan still showed a lot of change then we need to let him know so that he can change our protocol. Pete mentioned the fact that I’d had head/neck ache for sometime and Nesselhut insisted on getting it checked out by way of bone scan. He said it is probably nothing but better to be sure… Not what I wanted to hear.

Pete also mentioned my cough and explained Prof Harris’s thoughts on it. Nesselhut was less concerned but suggested codeine at night… Not sure why.

A lot of conversation was banded about things that could be done and what was inbound. He talked a lot about anti pdl1, pd1 and more. We said we thought I had already had that. He said in the vaccination, yes, but not injected directly into me. He said the quantity required would result in the cost of £100,000! He suggests it works better because when administered in the vaccine we are just training the dc cells, whereas administering it into the body, it attacks the protein cloaking the canSer and therefore has a much better response. They have high hopes for this.

Pete not knowing the price asked when we could start that treatment. Nesselhut said not yet then told him the price….. Jaws dropped. Let’s hope I don’t need that then!

Whilst chatting about triple negative Nesselhut said that they had amazing results for those who had not waited till they metastasised for dc treatment.

He says the success rate for those who have the treatment is 100% over 5 years. If only I knew about his work before the canSer had metastasised.

For someone like me he said there was a 30-40% success rate over 5 years… Well I guess that’s me in that 30-40% then!

This is great news for any TNBCers out there. It isn’t the worst thing ever to have that diagnosis and despite needing funds if you can obtain them, then go for it. It’ll save your life.

 

I had my vaccination intradermally and intravenously. My arm is currently as big as a balloon. The biggest reaction yet. I feel fine. I am longing to be at home but then who doesn’t when you are sat at an airport.

 

Thoughts have worried me this afternoon. I guess if I am being ever alert then I know in my gut that I should get my headaches checked out. If I am being less cautious then I want to wait.  I have neck ache. It feels like I need a bloody good massage. The thought of having an MRI scan fills me with dread.

 

Whilst having a green tea this morning I suddenly felt sick and had to rush to the loo where sadly I vomited. What caused that? Don’t know….

 

Last night I spent a little while trawling through FB, as you do. I saw a post on The Huffington Post. I’m not one to follow blogs, bizarrely enough on other canSer survivors, but this one caught my eye. I read it to Pete and we both cried. Not wanting to ruin it for you, the outcome isn’t all happiness and joy but the power of the internet has meant her post has gone viral and her husband has written to thank everyone now that she is gone. I’m reading far too many posts of late of women dying before they are 40, not just of breast cancer but bowel cancer and more.

Here’s a link to Charlotte Kitleys’ final blog that she wrote before she died;
http://www.huffingtonpost.co.uk/charlotte-kitley/bowel-cancer-charlotte-kitley_b_5836238.html

Followed by her husbands reply; Well, it’s not quite the end…
http://www.huffingtonpost.co.uk/richard-kitley/well-its-not-quite-the-end_b_5855370.html

 

I don’t think Charlottes’ post was all doom and gloom but full of love, hope and happiness. I will take her advice and run with it.. I advise you to do the same.

 

Night all. Hopefully I’ll be home soon tucked up in my favourite place with my favourite person plus the little furry one.

 

Xx