Me

My parents arrive a week from Sunday.  We hoped my appointment would be brought forward and are very glad it has been, but has meant a bit of a mad scramble/dash of "no idea what next week will look like".  But it's a week.  We will manage. 

People are amazing.  Yesterday my husband collected the kids from school and one mom who knows about my diagnosis asked if we had had any news.  My husband said that they have brought my appointment forward to Friday at 4pm.  The mom said "Let the office know I'm collecting your kids on Friday.  Come get them whenever works for you.  We'll feed them dinner and watch a movie."  I joke and say I like animals more than people.  And it's not a complete lie.  But people are amazing.  We didn't even ask.  We were told.  Kids sorted. 

Of course, before I hit post, everything I wrote disappeared.  I found this very interesting though.  And I think my SIL who is a surgeon is one of "these" doctors.  She's a fitness fanatic and cycles everywhere.  She probably does think "patient" "doctor".  I'm sure it gets her through the day.

I was given a good knowledge piece yesterday.  Apparently legislation went into place (not sure when and how long it's been in place) around doctors and their Duty of Care.  The doctors Duty of Care must remain clinical and factual.  They are LEGALLY not allowed to be fluffy and such.  As some patients only hear that one piece of positive and then are surprised at the negatives.  I'm the opposite, tell me a thousand positives and one negative and I'll focus on that one negative...  I know I'm not alone in that.

Yesterday was good.  My daughter had diving and I've become very close to the "diving mums".  There are 4 of us.  Me, a dentist, a pub owner (woohoo!), and an anesthesiologist (at the hospital I go to).  Last night my anesthesiologist friend (C) really gave me some wonderful knowledge.  And her mother was diagnosed with Stage 4 breast cancer years ago and is still here.  I had been messaging privately with her but last night was the first time I saw her in person.  Her sister is a breast oncologist in another part of the UK (northern England or Scotland, I'm not 100% sure).  She asked for permission for her and her sister to look at my scans/results and treatment plans.  I am so grateful to have people like this in my life.  She also said that we shouldn't be scared of the C word the way we used to be.  As the treatments are so advanced and so individually targeted for each person.  Let's just say I came home, as asleep by 9pm and slept until my alarm at 8:45 this morning.  I don't know if I've ever slept that well.  My mind was finally quiet.  It was amazing and much needed after a few tough, extremely emotional weeks.

My SIL who is properly Irish with over 100 first cousins is desperate to talk to me.  We were supposed to talk last night, but as I had been on a hell of a roller coaster with my emotions yesterday, we've delayed to tonight or tomorrow.  She says in her family everyone calls for the first sniffle, cough, bump, etc.  Whereas she thinks she can ACTUALLY help us.  She is going to give us questions to ask the oncologist from the insight she has from her two years training with the NHS.  She says they will, of course, offer the best care they can.  But sometimes you need the right language to get into certain trials/studies/etc. 

My emotions have, of course, been all over the map.  My husband is just so flipping unbelievable.  But I want to find him a professional (we are told we will be given info Friday) for him to be able to talk to.  He can be very British Stiff Upper Lip.  And he needs to have someone he can go to and just say "THIS IS UNFAIR AND IT SUCKS AND I HATE IT" without worrying about me feeling guilty.  He has known exactly what to say and when to say it.  Which is a surprise, because normally he gets it wrong.    Sunday we went into our town centre for Nandos for dinner.  I've been staying away from the news, as I find the Queen's death a bit too close for comfort right.  You guys know I love to DO and I line the streets for all the big events (hey, us Americans gotta do our part, right?)  Anyways, our town centre was shut during the day for the reading of the proclamation.  I said to my husband that any other time, I would have been in the crowd as it's history and he shrugged and said, "We'll come into town for the next one."  He is my perfect match and me and the kids are so lucky to have him.  I look forward to being snarky and sarcastic to him again in the future.    I'm a bit soppy for him at the moment. 

  This is EXACTLY what I mean by your superpower!  You've already got a personal connection to an oncologist and a doctor to help you prep for your appointment.  I'm so happy to see you going at this already, and even eating Nando's while you do it.  You are going to organise the sh*t out of cancer. 

Oh @KFdancer I have no words after reading this . If its any help my Nan had a few bouts of cancer at the young age of 72. Raised without parent figures in the rough streets of Yorkshire molded her into a fighter. She smashed it. Ops, radiotherapy the lot. I'm positive it was her attitude that got her through - no questions whatsoever. Her care was outstanding. The NHS generally is not up to standard but where cancer is concerned they're exceptional from my experience. So, you're in good hands but the rest is up to you. You will fight this. You will smash it. You will beat it. All our love and extra strength sent yours and your family's way

I went to the hospital today to have the chest drain put in to be able to easily remove the pleural fluid. And I left WITHOUT a drain.

Zero changes to the fluid since my therapeutic drain 9 days ago!  They COULD put one in, but they would prefer more fluid as it reduces risks. The point of the drain is to relieve my cough and reduce breathlessness, both of which have been REMARKABLY improved since the last drain.

I meet the oncologist tomorrow and she may say she wants the drain in place before treatment and if so, it’ll be put in.  It may be that the fluid stops building and is reabsorbed by my body straight away with treatment.

While NOT enough data to go by, it seems when the fluid had built so rapidly between drain 1 and 2 (they took 1.1 litres at drain 2), it could have been a fluke.

Anyways, I’m home on the sofa with no foreign objects sticking out like I had anticipated.  Fine by me. I’m going to still keep today and tomorrow off of work.

Oh I'm so glad you don't need the drain currently. I hope you don't at all, because I'm sure you'll be a pin-cushion and with tubes going everywhere soon enough. 

Been thinking about you this afternoon! Hope you've got some more answers and thoughts and can dive straight in!

Thank you so much everyone for all the messages of support and encouragement going into yesterday's appointment.

It was hard to wait to 4pm to hear my fate.  I was there 2.5 hours.  Then had to get kids, dinner, kids in bed, speak with my family, and then attempt to sleep  I could have easily gone to bed at 8:30 but stupidly I didn't and then I couldn't sleep.   

Really liked my oncologist Dr. B.  While I don't believe you have to LIKE your doctor, I am handing her my family and asking her to keep us together.  We are similar in age.  She may be a year or two older just looking at when she graduated uni. 

Easiest way to sum up the appointment was at the end, I asked her if I was sitting in her chair and her in mine, what would her biggest concerns be.  She said exactly mine - her kids.  She said she would take comfort in the type of cancer I have an knowing how responsive it (usually) is to treatment and how many different paths they can go down if I'm not responsive with what they hit me first.  She said she would not be afraid of having cancer or the treatment itself.

I'll have 6 rounds of chemo, each round 3 weeks apart, so 18 weeks of treatment.  There are several injections I will have with my chemo and one of those is the "important" thing I receive.  So if I have difficulties with chemo, they can dial that right back, as it's the injection they want in me.  The injection is only approved for use with chemo as they couldn't find a good study group to say "okay, so are half of you cool without receiving chemo which we KNOW saves lives to try this injection?" 

Yesterday I was scared that we would be talking about did I want to be buried or cremated, in USA or England.  Instead they were talking about having microblading on my eyebrows and special nail polish as my nails will be yucky during chemo.  It was a lovely direction of conversation compared to what I was prepared for.

EVERYTHING will depend on how my body responds.  But there are other treatments if my body doesn't respond.  They looked at me like I had 8 heads when I asked if this was my last Christmas.     They plan to shrink, if not eliminate my tumors, and with a bit of luck nothing will start growing again for many many many years, and by then, treatments will have advanced even further and who knows?  There could be a cure that I'm around for.

I'll likely have a shorter lifespan than my peers.  But at the same time, if I respond well, there's no reason to think I won't just live with cancer for a very very long time. 

So now whoever you pray, chant, dance to, please just give those hopes and prayers that my body RESPONDS and responds well. 

Before I can start treatment, I need sign off from my dentist (as the cancer is in my bones, any dental work that could pop up in the next 6 months or so needs to be done now).  They are arranging an echo of my heart with a cardiologist and I'll have a port put into my chest.  They are also arranging an MRI of my full spinal column but that does not need to happen before chemo starts.  With a bit of luck, I'll have the dentist done this week, along with the echo and port, and they'll start the following week.

I'm feeling very encouraged and more relaxed (so instead of being an extremely tightly wound spring, I'm a tightly wound spring).

My parents arrive a week from tomorrow, so we will have lots of hands. 

Oh and apparently the cool cap may be able to make me keep my hair, so I've been told to go for a pixie cut.  So no mohawk.  That was going to be my interim haircut before buzzing it all. 

Thank you so much everyone for all the messages of support and encouragement going into yesterday's appointment.

It was hard to wait to 4pm to hear my fate.  I was there 2.5 hours.  Then had to get kids, dinner, kids in bed, speak with my family, and then attempt to sleep  I could have easily gone to bed at 8:30 but stupidly I didn't and then I couldn't sleep.   

Really liked my oncologist Dr. B.  While I don't believe you have to LIKE your doctor, I am handing her my family and asking her to keep us together.  We are similar in age.  She may be a year or two older just looking at when she graduated uni. 

Easiest way to sum up the appointment was at the end, I asked her if I was sitting in her chair and her in mine, what would her biggest concerns be.  She said exactly mine - her kids.  She said she would take comfort in the type of cancer I have an knowing how responsive it (usually) is to treatment and how many different paths they can go down if I'm not responsive with what they hit me first.  She said she would not be afraid of having cancer or the treatment itself.

I'll have 6 rounds of chemo, each round 3 weeks apart, so 18 weeks of treatment.  There are several injections I will have with my chemo and one of those is the "important" thing I receive.  So if I have difficulties with chemo, they can dial that right back, as it's the injection they want in me.  The injection is only approved for use with chemo as they couldn't find a good study group to say "okay, so are half of you cool without receiving chemo which we KNOW saves lives to try this injection?" 

Yesterday I was scared that we would be talking about did I want to be buried or cremated, in USA or England.  Instead they were talking about having microblading on my eyebrows and special nail polish as my nails will be yucky during chemo.  It was a lovely direction of conversation compared to what I was prepared for.

EVERYTHING will depend on how my body responds.  But there are other treatments if my body doesn't respond.  They looked at me like I had 8 heads when I asked if this was my last Christmas.     They plan to shrink, if not eliminate my tumors, and with a bit of luck nothing will start growing again for many many many years, and by then, treatments will have advanced even further and who knows?  There could be a cure that I'm around for.

I'll likely have a shorter lifespan than my peers.  But at the same time, if I respond well, there's no reason to think I won't just live with cancer for a very very long time. 

So now whoever you pray, chant, dance to, please just give those hopes and prayers that my body RESPONDS and responds well. 

Before I can start treatment, I need sign off from my dentist (as the cancer is in my bones, any dental work that could pop up in the next 6 months or so needs to be done now).  They are arranging an echo of my heart with a cardiologist and I'll have a port put into my chest.  They are also arranging an MRI of my full spinal column but that does not need to happen before chemo starts.  With a bit of luck, I'll have the dentist done this week, along with the echo and port, and they'll start the following week.

I'm feeling very encouraged and more relaxed (so instead of being an extremely tightly wound spring, I'm a tightly wound spring).

My parents arrive a week from tomorrow, so we will have lots of hands. 

Oh and apparently the cool cap may be able to make me keep my hair, so I've been told to go for a pixie cut.  So no mohawk.  That was going to be my interim haircut before buzzing it all. 

The cold cap is extremely painful (just as a heads up), so I know quite a few people who chose wigs instead. It is worth trying and I'm so glad they have it as an option here, I don't want to tell you how much it cost a friend in Canada. Shirts like this are also really helpful: https://www.careandwear.com/collections/chest-port-access-shirts-and-hoodies 

If you find anxiety, pain, or nausea are too much, prescription cannabis can really help - I'm happy to help you navigate it if you do find you want to try that. (It's still a thing they only allow after trying 2 traditional treatments, so hopefully the oncologist does help too. Sleep and nutrition are some of the most important things for helping your body heal, so helping you rest and keep food down is key!)

I'm so happy they have quite a few options for you. Keeping everything crossed this works with the first round of meds, but relieved they also have many other things in the toolbox if it doesn't. The difference in cancer care (once found) and every other chronic condition is night and day.

Thanks very much for the update. You're going to have an amazing chronicle of this time in your life in this thread. We'll be with you every step of the way.

Thank you for the update! Sounds like you've got a plan forward and can get attacking it now.  I'm very glad you're liking your Oncologist as that is one less battle to prepare for.  You've got this, headfirst now!

But at the same time, if I respond well, there's no reason to think I won't just live with cancer for a very very long time. 

  This is the part I'm super happy about reading!

KFD, Thanks for this detailed updated and it does sound like you have some really good options going forward.

I didn’t mention this before but my sister was diagnosed with cancer of the esophagus late last year. She too thought it was long Covid after recovering from a 2nd bout of it, but by the time her daughters and granddaughter convinced her to go see her GP it had already advanced into her stomach. She declined the radical surgery to remove all the esophagus and the top part of her stomach and opted for chemo and radiotherapy. I just heard from her and she has just passed the 6 month mark with no signs at all of cancer.

 My wife’s sister has been with us this week and about 10 years ago she beat her breast cancer. My other sister had to have a radical hysterectomy plus chemo after cervical cancer was spotted with a routine cervical smear when she was aged 38 and she has been clear for over 12 years now.

I feel so positive about your prospects that I am doing my best to project those feelings over to you.

Thanks guys.  I know I’m not curable, just treatable.  But I want to be one of the women who responds well and it stays dormant for many MANY years.  And maybe there will be a cure if/when it reawakens.  I just want a good response from my body.  It was more than happy to let cancer smoosh all about, let’s hope it’ll allow the treatments to slither into each and every nook and cranny.

Hair comes off Tuesday at 10.  Eeks!  I don’t care about losing my hair.  I do fear my kids (my son in particular) being freaked by my new look.  One thing I had not thought of, which I’m glad my nurse informed me, is that if wearing a scarf or bald, everyone wants to share their chemo story.  I can see that bothering me (not you guys, you are all so uplifting).

I don’t have rose coloured glasses on.  I know sh*t is about to get real.  And it’s going to completely and utterly suck.  But I’ve done shitty, sucky things without nearly as good of a prize (my family) at the end.  Granted probably not as shitty or sucky…. But…. It’s just something I have to do and I am grateful there is something I CAN do. 

I'm told by my old survivor friend that you might want to have some hard candy, something like sherbert lemons, in the house. Sometimes it'd help with the taste and the stomach issues with the chemo.

 

I don’t have rose coloured glasses on.  I know sh*t is about to get real.  And it’s going to completely and utterly suck.  But I’ve done shitty, sucky things without nearly as good of a prize (my family) at the end.  Granted probably not as shitty or sucky…. But…. It’s just something I have to do and I am grateful there is something I CAN do. 

Cancer is a horrible f*****g bastard. So glad there are some options to treat, as sucky and shitty as they're going to be.  You've got this!!  We're here for you, for the good and the bad and the in-between .