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Yesterday was so so hot!

I don't feel like I'm in England anymore. Looks like one of those tropical countries!

I don't even try going outside in this heat. I do feel a bit sad because I love my tan but I know that would just make me feel worse. So I'm now enjoying my balcony from 19:30 onward as it's the best time of the day, nice and cool and I can see the sunset! - Bliss

Funny episode (essay alert!) that happened last week was to do with a certain charity for young people with cancer.
M signed myself up a bit more than a month ago as we thought that we both needed counselling. The lady that identified herself as counsellor gave me a couple of dates to go to coffee meetings with other people with similar situation as mine. I wasn't able to show up to those meetings as one coincided with one of the days I was poorly and the other one had the electricity guy installing my smart meter. All of this to say that in the mean time, M signed himself up for counselling and they said someone would contact him soon. Two weeks later (probably a month later since the lady contacted me), M was not very impressed and sent them as email with his disappointment - Although they are a charity, they shouldn't commit to people if they are not going to help, so then people can find someone else instead of waiting - As answer to his email they said they had sent two emails - And they didn't (no, not even in the spam box) - then they almost begged to help.
This counsellor lady, called M but as he was at work and couldn't talk, she rang me. - I thought to myself: Oh lucky me, I've been needing to talk to someone in the last few days, perhaps she can help - Sure! - She started the conversation with the coffee meeting again and how I'd benefit from them - But oh, the next one is on my chemo week so I can't go again - and what she doesn't understand is that I don't feel confident just to show up somewhere where I don't know anyone and I wasn't even invited to take a friend. Anyway, then I went on about how sad and down I'd been feeling with everything going on and how the chemo week affected us, and, amongst all the crap cheer up talk she said: I should feel happy about the sun and should enjoy the sun and the good weather... - Ermm, lady, I can't catch any sun...I burn. How is that thinking happy if I can't do what I used to love? - I very politely answered with a "oh yeah...perhaps it will, although I can't really expose myself to the sun" - What's with this people to keep saying for me to enjoy the sun when I'm trying to hide from it.. - So then I kept telling her how depressed and feeling like crying etc, and she said: "Oh have you seen what happened to those people in London tower? That was awful, if you think that's so many things going on in the world"... And that's when I stopped listening - Is this person actually undermining my problems? I'm not a counsellor and I know, that we all suffer differently and cope differently with the same situation... and certainly stating that other peoples problems are worse than mine, doesn't particularly help with my one. By the end of it, she didn't offer any counselling session face to face. So I assume that was it, that was her professional input. Honestly, I do understand that is a charity, and they can't do face to faces as they might not have a private office, but that was the worst counselling session ever. Charity or not!
I'm a nurse, and if I was doing charity I wouldn't say to the person, "go home and bandage your wound yourself".

Oh well, on another note, there's news!

Last week on Wednesday was the 8 week mark for the genetics result. We've waited until the end of the week to see if anyone would ring, and no one did, so I've decided to ring them today. The receptionist said not all the results were back and the doctor was just discussing some of them with the laboratory. - Heart race! What does that mean? - So I patiently waited for the doctor to ring me back.
The tone of her voice and the preparation to initiate the conversation were quite frightening. "Your results are back, and they are all NEGATIVE for BRCA1 and BRCA2 mutation. But... - Shit, there's a but - I had to go clarify this with the lab today and you've got a variant in your genes, there's no evidence that variants cause cancer but that's what makes you be you." - So basically, I shouldn't worry about this variant, my family doesn't carry the genes, I won't pass the genes to my embryos, I won't have to have both breasts removed, my chemo will probably be reduced and still, I'm not jumping with happiness.
What's wrong with me? I should be jumping and celebrating. Instead, I'm blaming myself. What if it was something that I've done in my life that has caused cancer?

"Life cannot be written; Life can only be lived."

P.x

Good Days and Bad Days

Some days we feel happy, and some days we feel sad...

We are allowed.

We don't have to be strong 100% of the time. Just keep going, you're doing the best that you can with what was given to you.
No other situation is better or worse, we all perceive difficult moments differently, not everyone cries for the same reasons and not everyone suffers intensely with grief the same way that not everyone is a smiler nor everyone cries with happiness.
I wish I could say that I'm holding on ok, for the people that don't know me, 80% of the time, I'm still smiling, still laughing, still standing. The other 20% I'm struggling with emotions. The "why me" still shows up to the scene every now and then, the "I want to give up" and "I don't want this anymore" were at their worst last week. It's such a roller coaster of emotions, because you know that what's making you worse is also what's making you better - but "why me"?? - the changes in your body that you can't control, it's all "to make you better". Better from this evil inside me that took over our lives.

It definitely makes a huge difference to have yourself surrounded by the right people but unfortunately most of them can't help. Most of the times I have to help myself and snap out of it. - Which I eventually did this week. I said to myself suck it up buttercup and move along!

On different note: My Hair!

Oh dear, the amount of things I have to say about this adventure with my hair.

By the end of last week, I had to cut my hair shorter because it was hurting on the pillow. It definitely helped - for 4 or 5 days - until it started itching my scalp and hurting specially when wearing scarfs. When you put a scarf on - specially the way I wear them - they have to be tight to the scalp so they don't fall, as most of the times they are held by tension. So things between me and my hair were definitely very "tense" So on Saturday, as an act of desperation and courage, I called the blades in! - M run away from me because it was making him cringe just the thought of it - I shaved most of it myself and L came to give me a hand on the back of my head.

It's gone now! - YAY me! - No more hair on the pillow, no more pain with scarves, no more pain with the wig, no more hair all over me after a shower, no more hair itchiness poking through clothes, no more worrying "the hair is falling so much". Now it's gone and I'm so relieved - Never thought I'd ever say this. (Never say never lol). 

So with all this I managed to wear my "Bella" for the first time - Yes I named it! It's a mix between my two favourite characters: Belle from Beauty and the Beast and Bella from Twilight - I'm a bit weird I know! - Another adventure with it, as I got it too tight the first time and had to go in a public toilet while we were out to re-adjust it as it felt like my brain was being crushed. Got it right in the end and managed to rock it at S birthday party in the evening. I'm very impressed with it, it feels very real and I like wearing it - Although not when it's really really hot.

Another thing I've noticed, my hair growth has stopped for now. Since I've shaved 4 weeks ago my body hair stopped growing, - which in my opinion it's the best part of chemo side effects - even my eyebrows don't need threading anymore! 

Not sure if I'm looking forward for another week of good weather where I can't enjoy fully, but, on the other hand, at least I'm feeling ok and don't have any side effects that are bothering me at the moment.

"Those who bring sunshine into the lives of others, cannot keep it from themselves."

P.x 

Round Two - Two Down!

Damn! It's been a hell of a ride!

Monday: Chemo day. I went extremely positive to the chemo session. What was not to be positive about? It's one more chemo down. One closer to the end! Then after 3pm it's all a blur. Between feeling sick and tired and crying and panic about feeling sick, ringing the chemo line, ringing the GP for some prescription and waiting 3 hours to ring back and say that he can't help because he doesn't have the medication I need - I do understand now why people then go to A&E. So 3.30am and after a trip to the hospital for fluids and anti-sickness, I was back home in bed.

The rest of the week was a living hell. Even though I had extra anti-sickness, I was not able to tolerate fluids. Fluids made me feel even more sick. - But I needed to drink them! - Spent the week battling M and mum that were constantly trying to shove fluids down my throat. - Noooo. I hate this! I know that I have to drink, but I can't. The thought of it makes me sick. - Then jellies came to my life. And ice lollies! They made such a difference. - Learning curve for next chemo: Have jellies and ice lollies at ready! 

It's Sunday now and I'm still feeling sick, not as bad, I can drink now but not big amounts. It settles more when I lay down - which is basically what I've been doing all weekend anyway, as the GCSF injections started and I've got aches and pains and tiredness (like I've run a marathon). Only gone out for a couple of hours on Saturday just to enjoy the sun and a bit of fresh air and that gave me a 10hr night sleep. - Best lay in that we had in months though!

To be honest, it is with a bit of an effort I'm writing this time. I don't feel like talking, or writing or doing anything. But I'm forcing myself. I want to document my journey, and I want it to be fresh in my mind (although not a lot of details this time as I spent most of my week struggling with food and drink - Yes, that was all the excitement I had all week.) Pyjamas are my best friend - at least they don't tell me to drink - and pillow is my best confident (and professional tear holder). 

It's not been easy, I wish I could say it is. It's a really tough journey, not just physical but mental as well. The amount of times I feel like crying and sending everything to hell is unreal. But then I think I've got so much to look forward to in a years time and this is not the end of the road...

All I keep asking to *whatever/whoever* is out there is to only be 6 sessions instead of 8. I just want it to be over... 

Oh almost forgot! There was a bit more excitement this week: We had a call from the hospital saying that the neck biopsy came back negative!!! Whoop whoop! Don't have to do that one again.

I'm now M's little hedgehog - Head is very spiky and sometimes it hurts on the pillow, but in the middle of it all it's the least of my worries, and we laugh about it sometimes.

Now, because I still have a nurse in me and I won't ever stop preaching this: 

Please do check yourselves, be careful when you expose yourself to the sun, re-think your life choices (smoking and drinking and drugs) - This is so so hard... if you can avoid it, please do! 

"Change the way you look at things and the things you look at change."

P.x

Short Short Short

Unless you've been through it, I don't think you will ever understand.

-- 3rd of June --

Today was The Day! Hair is gone.

Extremely emotional day. Since this morning my mind was made up but we had a day out with the family and I wanted to feel "normal" for one last day. But I didn't.
On Monday the 29th the first few hairs started to fall - but only 4 or 5 would show up on my hand whilst in the shower - and the scalp started to ache. On Thursday more hair started falling. Styling my hair with mousse kept it from falling too much during the day but a lot would come out at the end of the day.

Thursday - Friday - Saturday

Yesterday (Friday) the fall was pretty bad by the end of the day, I was afraid of going to bed and waking up with my whole hair on my pillow (a bit dramatic I know), lucky me that M has a bit of brains when I don't and he encouraged the hair cut as soon as I felt ready. But I didn't want to do it in the morning. I just wanted one more day feeling normal, without people staring. So all I got was a very self conscious me with shit loads of mousse in her hair to stick back all the loose hair on top of my head. Felt like if I touched it would all fall off.
All I thought the whole day was that it needed cutting, and I needed the courage to do it. Half of the motivation was there: my hair had become extremely annoying the last couple of days as it was making me itch every 5 minutes with each strand falling, and I knew I couldn't stand that for long - I am very picky with itchiness.
A very emotional evening followed.
As soon as we got home I grabbed M's clippers and I went for it. Hair fell down through the tears of both M and myself. I recognise that face in the mirror, but don't see myself. Hair is such a big thing for me, no matter how many times M or Mum or my friends say I'm beautiful with or without hair, I don't feel like myself. I don't want to look myself in the mirror.

                      

(I wrote all of this last night but didn't have the guts to post it online. I was feeling very down and there were a lot of tears from Mum, M and me. There's no words that can describe it. Yesterday Cancer took away a small piece of my smile and happiness. I will get it back, one day I will. In the mean time I'll just smile through the tears hold on to family and friends and hope for a better tomorrow.)

-- 4th June --

Today I've tried my first scarf!

Laying my head on the pillow is not painful anymore. So I can tell that is a positive of cutting it shorter.
Still didn't like the look of me in the mirror. A nights sleep didn't change that for me. I guess I'll get used to it.
Spent a good 15 minutes trying different scarfstyles and didn't like the ones I thought I would. The chosen one is not too bad, but I'll definitely have to keep trying.
The headscarf was a must today, we went to meet The Body Coach - Joe Wicks and get a signed book - he has really inspired us to start eating right and change the food that we bring home. Specially now for recovery post chemo that I need to eat the right foods to keep me going strong and healthy and kick cancer out of me.
We honestly believe that the cure for cancer is based in a mix of chemotherapy, good food and positive energy.

Anyway, wearing a scarf in public was not as bad as I thought. Didn't feel that many eyes on me, although I think it helped with they letting M coming in with me - I think the guy felt a bit sorry for me - to the signing as they refused other partners until I complained that we were allowed a +1.
We had a good day in the end and getting to meet Joe was definitely the highlight of our day!

Second chemo is tomorrow. I just hope the side effects are not too bad. Fingers crossed.

"Challenge your assumptions and identify your limiting beliefs. Every time you find yourself thinking that you can't do something, ask yourself 'Why not?' "

Check It On the First ( . ) ( . ) ( • ) ( • )

It's the first of the month again ladies and gents!

Let's get those boobies out and get checking them!

No excuse for not doing it, takes 5 minutes, even if it is before getting up of just as you're going to bed. My post on the first of May show's how you can do it at home. Your partner can do it for you too!

Yesterday was a day of good news. We went for a repeat biopsy of my neck and an appointment with the oncologist.
I was a complete nerve wreck before the biopsy. The first time it was done, took about 20-30 minutes the whole procedure - the doctor might not have been as experienced - I cried that day because there was so much tension in the room and I was sure he was hurting my body even though I didn't feel any pain.
This time, completely different experience. In 5 minutes of being in the room I was ready to come out again. The doctor was amazingly quick - you can tell she was more experienced due to the difference approach on my neck - she told me to sit up instead of laying on the bed and the approach was through the back of my neck which made a huge difference! I just hope this one comes with some sort of result and not inconclusive again.
Pain wise I can tell you now that was nothing compared with the previous one. On the first one I felt pain for a few days and the week after I could still feel bruised inside. Last night I didn't even struggle to fall asleep, no extra pain relief was required apart from the local anaesthetic and paracetamol they gave me there and then.

To be honest I was ready to get there and refuse to have it done by the same doctor as my experience was horrendous and made me be anxious about going for a biopsy again - and I'm usually brave for all those medical interventions. And people that know me, know that I'm even up for medical students or junior doctors try things on me, as long as they've got a back up or someone to go to if they can't do it - that wasn't the case.

The appointment with the consultant was unexpectedly good! First we had results from bone biopsy and it's Clear!! M had lots of questions, especially related to my "lack of symptoms" after chemo. The oncologist said it was completely normal to only have a few but she offered to give more medication just in case I needed it. The only thing she added was codeine for my aches and pains post chemo and post GCSF injections.
Doctor was very happy with the way I was coping with everything and lack of symptoms that she wanted to examine me and my tumour. - "I won't expect to find it any different but we should check" - M and I looked at each other and said instantly: "But we have noticed a difference." About a week and a half ago I thought I'd check on the lump and as we were trying to find it we've noticed that was almost gone. We didn't want to jinx it or anything so we waited until the doctor confirmed that has significantly reduced. She was so amazed at it and surprised that gone down with just one chemo. Now we just have to wait for the genetics results and if the gene is negative, I might only have to do 6 rounds of chemo instead of 8!
And those are great news!

Mum arrives today as next chemo will be on Monday so we are aiming for some good quality time over the weekend before side effects come back to torture me again. Bring it on! 💪

"We can complain because rose bushes have thorns; or rejoice because thorn bushes have roses"

P.x