Looking for Different Options

We've been having a relatively good weekend enjoying each others company and friends before the wave of surgical interventions and chemo start.

Up until now.

Breakdown again. After I've made my mind of when and where to cut my hair, came to my knowledge that the person is on holiday so won't be able to do my hair until the 15th - and that's exactly when my chemo starts. Because I want to cut it short before I start, I'm now back to square one and need to choose a new hairdresser.

If any of you know a good one that will be patient enough and does it at home or does home visits, please let me know - I want to avoid public hairdressers in case I cry.

I know it's stupid to cry knowing that there's hundreds of hairdressers I could go to, but because it was my plan and I set my mind to it - and the hormones don't help - my emotions took the power over me, felt my disappointment and poor M had to deal - once again - with my tears. (It didn't last long because he always makes me smile through my irrational moments) 

Tomorrow is the first ultrasound to see if my ovaries are behaving... We hope so.

Ps. I've been having pretty bad mood swings and sometimes don't feel like talking or writing, so I might only post every couple of days if I don't feel up to it.

P.x

Bingo!

Today was a good day.

Although my nights have been a bit restless, I've managed to sleep until 10am (woke up several times overnight and stayed awake for a good hour trying to sleep again) always with weird dreams that make no sense when I wake up. I blame my brain that is clearly more stressed that it shows on the outside.
I feel calm (most of the time) and I'm very impressed with my calmness, but clearly I'm keeping a lot to myself too.

Felt with a lot of strength and motivated today so done a bit of cleaning and ironing (need to keep on top of it for the next couple of weeks... or I could just leave it to my mum. Haha that's what mum's are for!) then felt tired coming to the end of the day, but still made myself put some clothes and makeup on to go Bingo with the girls.

And guess what? Beginners luck over here!! It wasn't a huge amount but it was a win... and I've been needing some wins in life. And now I'm definitely going back to play bingo and I bet I won't win again! Because life is a bitch! (Sometimes!)

"To be fully alive, fully human and completely awake is to be continually thrown out of the nest."

P.x

Hormones Kick In

Just an update... I've got a huge headache!

Not enjoying this hormones situation. Kids are suppose to give headaches after, not before being even conceived (lol).
Oncology appointment went well yesterday. The doctor agrees with the date to start chemo and that was such a relief! The only little thing that came up on my CT scan was a small lymph node on my neck, and just because it was the same side as the cancer, we need to get it checked.

On a good note, I've bought my first 3 head scarves yesterday. I hope they are good enough and won't itch when it comes the time. Was going to buy silky ones but they are way to expensive (£35 for a scarf???) no way I'm going to pay a fortune for something that will be just temporary, so soft polyester will have to do.

Bone scan was today and it wasn't as bad as I though. Luckily got R to sit with me throughout the scan which was great, as M had to work. Had to take a radioactive injection and that means that I'll be radioactive for 24hours and my wee is going to be radioactive. (wow... although I don't feel a thing from it makes me feel a bit weird having something in me that is usually harmful)

The hormones are taking the best of me. Felt extremely tired at the point of start losing my balance hence why I didn't post on here. And felt extremely down and tired this morning and had a constant headache all day.
As I'm taking the hormone injections and as horrible the pain is, all I think is that this is just a small thing compared to what is about to happen. I fret about it but at the same time I think I'm underestimating the whole journey and being positive about it. I guess I'll let you all know when I get there.

"Don't grieve. Anything you lose comes around in another form"

P.x

The Birds and the Bees

Today was a better day.

We had another appointment at the fertility clinic. I went for a scan of my uterus, check the ovaries.
Basically they need to check the thickness of the uterus layer to know when to start the IVF (In-Vitro Fertilization) injections, and to know how many follicles I've got in my ovaries to see if it would be successful the stimulation or not.
In my case, everything was ok to start the process.
M had to give a sample for testing before they do the fertilization to check on the little dudes.
And according to them, everything is ok, so now we just need a bit of good luck and that my ovaries behave for the next 10 days!

I've given so many subcutaneous injections to so many patients and always said "it might sting a bit" - bloody hell!! A bit?? - This was my first time giving an injection to myself and I'm dreading that in two days time I'll have to give two every night. Oh the joy! - It stings like a bitch - Not looking forward to it. My ovaries better work properly after this. As M said, think about why are you doing it! Babies... we want babies!

We are so grateful with what the fertility clinic is doing for us. Apart from the amount of paperwork we have to read and sign - They have been truly amazing with no fault on them, everything they do is just so caring and supportive. It must be such a rewarding feeling to be able to offer couples something that otherwise they would never have. We do understand why the treatment is so expensive (if their not funded by NHS), their technology and their staff are the best.

Oncology appointment tomorrow and fingers crossed the doctor tells us it's ok to start the chemo on the 15th of May. (Deep down I'm starting to get a bit anxious about it as it gets closer to the date...)

P.x

Tired.

Today I don't feel like writing.

Don't feel like talking.

Don't feel like eating. M is making the effort for me and making me react to life.

Just want to dig a hole and bury my head in the dark and stay there until this is all over.

And it's not even started yet.

But I do know that sometimes is ok not to be ok.

She said I was being very strong today. Didn't felt like it. Just because I didn't cry, it doesn't mean it doesn't hurt to know my lymphnodes are involved.

P.x

Neverland

Today it's M's time to voice his feelings about this hell we're going through.

I shall leave you with him.

Sometimes it's almost like we've accepted the diagnosis, but the truth is that we know the worst is yet to come. Today we watched the movie Hook, where we disappeared back into a fantasy world where we used to have no worries at all and we never wanted to grow up.

At first there were no words, just devastation. One minute we were discussing how to organize the bedroom to start a family, then our entire lives are flipped upside down with just one horrible word - Cancer. You can't prepare for it. And now as we struggle to deal with the many emotions, our thoughts have manifested into 1000 unanswerable questions. Will we be O.K? For how long? How will this impact us as a couple? Will we ever have any children? It's made us completely selfless and puts so many irrelevant things in life into perspective.

This is going to sound bias because we are a couple, but the world really would be at a loss without her. Her smile is infectious. She's saved lives and given support to those in dark places at their lowest moments. A lifetime wouldn't be enough to explain everything that is great about P. She's the strongest most independent woman I've ever met, so to see her in tears saying to me "I don't want to go through this" is the worst emotional pain I've ever experienced. And I have dealt with plenty of that in many different forms.

Helplessness is an understatement. Anyone in our immediate family would trade places with her if they could. If this was happening to me as some kind of punishment for the stupid things I had done in my life it would all make more sense. But everyone is on a different journey and at this point we don't know why we've been put on this path. Maybe one day we will.

I don't believe in God because I've never seen any proof of his existence. But what I have seen evidence of is the incredible power of the imagination. I believe that things do have a meaning though, a purpose, and that this is our test. I believe that my life has molded me into the strongest version of myself, mentally and physically so that I can be there for her in every way I need to, so that she can rely on me. Because that's all I can do. I believe that everybody goes through a struggle in life and that this is ours. I believe that this is happening to us because we can do it. And I know that we can because we will.

With the help and support from our family and friends we will remain as positive as we can. We would like to lead an example that there are always going to be positives in life. We will still smile and when people see that and wonder how or why with the situation we're in I'll tell them the truth...I am spending every single day that I can with the woman I love, a person that showed me that any place in the world can be called home.

"No relationship is all sunshine, but two people can share one umbrella and survive the storm together".

M.x

Unicorns!

Don't tell me that rainbows are over, unicorns don't exist, candy floss has melted and mermaids only live in fairy tales.

Don't make me stop dreaming pink. Don't take away my smile. Don't take away my happiness.

Why are you here? Why are you in my life? Even if you wanted to take all those things from me, I wouldn't let you!

My life will always have smiles, happiness, rainbows, mermaids and unicorns eating candy floss. Because I can, and because I want to dream in pink and green and blue and you won't destroy my dreams. As long as I stand you won't take any of this from me, and believe me, I can take a lot of shit from you!

Today was the first change day!

I've got UNICORN HAIR!!! And I'm loving it!

I would never have tried to do this in a normal situation because my hair is so thin and sensitive that bleaching it means that it will get really dry and horrible. But in this very specific situation, I can! (they said because I've got cancer I can do whatever I want, so I'm only doing as I'm told) In a few weeks, just before chemo I'll get it cut shorter so I won't have to deal with dry horrible hair.

Thank you to all my friends and family that supported me on this decision, even if you think I'm crazy.
 And, Thank you to the 5 beautiful girls that made my unicorn hair possible (L, R, C, J, L) and were as excited as me.

Ps: Always believe in unicorns, the mermaids told me they exist!

"When someone else doesn't believe in you or your dreams, remember it's about them, not you"

P.x 

Selfish or Self-ist

Relaxed day today

Away from appointments, responsibility, doctors and nurses. Almost felt like a normal day - Except from people asking questions and asking for updates.
I don't usually mind people asking for updates and asking questions but today I just wanted to be selfish and have a normal day.

I've done some cleaning (a bit of spring cleaning) as I know that soon I won't be able to do as much for a while. Have been with myself and my own thoughts. It was nice for a change after the last few days.

Yesterday had so many phone calls because someone booked my chemo to start on Monday, but I wasn't ready for that, was expecting another week and a half to complete all my appointments and exams before we agree on a chemo date. After a good 5 phone calls (2 of them with some rude receptionist - I wish people wouldn't work in healthcare if they don't have a nice attitude) I finally solved this 'way to early' appointment mistake (It was agreed with the oncologist last week that I would start in 3 weeks, not 1 and a half.).

This is why I really needed a relaxed day to myself today. And I really deserved it.

Would like to give you a breast update. After my biopsy that was done on the 1st of April, my big bruising has just disappeared in the last couple of days, but is still sore. I still feel some pins and needles sometimes - at rest or when doing something heavy - specially under my arm as there was the last biopsy was taken from (10th April).
I am aware of my breast all the time, I try to ignore it but it doesn't work. I was scared to touch both of them - silly fear, I know - but I was afraid of hurting myself or making it even worse. I've been more confident lately but still going through the healing process. I have tried to go back to gym a week ago but the fast walk on the treadmill was making it ache, So I stopped and been sticking to normal walks or just bike to move my legs around.

It's not easy, but we've been good so far...

P.x

A Piece of Good News

What . A . Day!

3 hours spent on that CT department! Gotta love the NHS!
No food in me since 23.00 the night before, was told I couldn't eat 2 hours before the scan - 09.30 - and to drink a liter of water an hour before. There I was thinking I would be out of there by 10:30 and be back to eat my Portuguese goodies for a late breakfast. - How naive!

First I can start with the three arm hole gown that took me a significant amount of time to figure out how to do it!
Then the fact that I still felt naked - and the constant feeling I was showing my bum to the world! (I wasn't as that has got a pretty good coverage but is a bit breezy! haha)
Labrat for practice cannulation didn't work so well as my veins (just found that out) are not the best ones once they've been used so many times in the last few days, so here came the Sister to the rescue of the poor girl that was struggling.
The contrast - That is the weirdest experience ever. It hurts a bit if the cannula is so small (I had a yellow one in - means small/pediatric for the ones that are not medical) and by the time the whole contrast was in it was burning on the site of the cannula and the other side effects started - The hot flush - the taste in my mouth - (and the most weird one) a feeling of warmness/hot down below! (I'm still asking myself what the hell was that and how does that work?)

M didn't like the experience and was not very impressed as it was extremely boring to wait 3 hours in a hospital waiting room. But he was very patient and as usual my big rock.

Now have to wait for those results. Might get them Monday and fingers crossed they will be ok!

Fertility Clinic in the afternoon, (and to top up the great day we were having I got the place wrong because I didn't check the address and we ended up getting there late - Shame on us) the staff was so nice overall. The place so clean and inviting. We barely sat down and the doctor called us in. What a nice doctor and human being. From the beginning of the consultation we liked him, and then we liked him even more when he gave us the right answers. The team will be giving us the best and the fastest treatments that they can "because you deserve it" he said!! Made us smile so much, means so much to us! This means that, if the oncologist agrees, and my ovaries are cooperative, we'll be harvesting some eggs and turning them into embryos soon. So exciting!
The best bit of news we've heard in two weeks.
We might have a chance now.
It just means that chemo will be slightly delayed but only just a couple of weeks. Fingers crossed the oncologist agrees and we can proceed - We'll know on Wednesday.
We needed this win! We can't be unlucky forever. And we will perceive until we get our life back and our future under control, because there will be no other way of doing it.

So for now... I'm saying goodbye for a good while to my good old friend for the last 15 years...
Good bye pill!

Sorry about the long post but had to be done! I'll probably tell you more about the fertility next week when I know a bit more about it myself.

"There is nothing wrong with wanting more. There is no reason why you shouldn't get everything you want from life."

P.x

Science Lesson

Quick round trip to London today.

Genetics appointment was longer than expected, well just because I wasn't expecting more than a blood test but instead we got an free science lesson. (8 weeks for the result!)

I'll be tested for BRCA1 and BRCA2, these two genes are what make our bodies fight for cancerous cells on the breast and ovaries (for women) and prostate, pancreas and breast (for men). If there's a mutation (and that's what they are trying to find out) means that one of them is not working properly and our body can't fight cancerous cells and develops it.
But apparently only 15% of the triple negative kinds of cancer (It's the one that I've got - means it's negative for the three types of hormones, as in was not developed by hormone changes) have this mutation of this gene - so that means that 85% of people with breast cancer doesn't have a clue what caused the cancer. Now your question will be: Which one is best? - Well you can answer that one yourself.

Knowing that - If you've got the gene mutation, your gene mutation might have come from your family and they might still be at risk of developing any kind of cancer, can be passed on to your babies (if you have IVF they'll pick the embryos with the negative mutation and that's a bit better), then you can make the decision of removing both of your breasts and ovaries to prevent this from going through this hell again (exactly what Angelina Jolie did). And your family members have a better idea what is expecting them and we can prevent things from happening.

or

If you haven't got the gene mutation, you can belong to the 85% that have no idea what caused it, the risks of developing cancer again are less but not completely null so you still battle with the decision of removing your breasts and your ovaries because - just in case - you don't want this hell ever again.

Sorry for the science lesson, thought I'd share with you and make us all a bit more knowledgeable.

So a round trip and one blood sample later we're home with some Portuguese treats sent by mum and a few of good friends(R, C and R). Thank you all!

Tomorrow is CT CAP and Fertility appointment day, big day I'd say! All crossed!

P.x