Friday Five!

Ksand, I'm so glad you were brave and asked the GP for help.  You've had a hell of a year.  I'm glad you are starting to get some of your sparkle back.  BIG UKY HUGS from us all!

Friyay!

This week has been a real mix of highs and lows.

1.  I wasn't feeling great on Tuesday and was scheduled first thing Wednesday morning for a CT scan and blood work so waited to be checked out until then (instead of going to A&E).  Took ages but was declared fine as blood work was good.  But there is no denying that I get breathless very easily.  I also have a touch of a cold courtesy of my daughter.

2.  All of my tests were re-run this week as I'm officially halfway through chemotherapy.  I'll find out the results Thursday.  We haven't planned anything for Thanksgiving as we are all very anxious about my oncology appointment that day. 

3.  Tuesday night I was gathering everything I was going to take with me on Wednesday and I mistakenly read my discharge notes from the hospital when I was admitted a few weeks ago.  That sent me massively into a downward spiral.  I need to remind myself that the oncologist I saw there was NOT *MY* oncologist.  But he apparently has written to my GP to refer me to hospice.  Not what you need to read at midnight when everyone else is asleep.  The report also said the CT scan showed further progression of the cancer in my bones.  Again, I need to remember that that CT scan was done 6 weeks after my first and I was barely into treatment, so the bones likely progressed BEFORE treatment and not necessarily after. 

4.  Trying to get out a bit while I'm feeling better and met a friend Wednesday night.  While there was cancer talk, we also had some lovely gossip about former colleagues and trashy tv.  I'm catching up with a few friends this week and next and I'm so pleased.  I NEED it.  And off to the spa with a friend and her mom and sister, with my mom on Sunday. 

5.  Hoping my husband and I can sneak out for dinner just the two of us tonight.  Food tastes awful to me right now, but would be good to get out.  Maybe I'll just see what's on at the cinema. 

Huge hugs KFDancer. 
It helps to remember that hospice care can really just mean palliative care for feeling better and in less pain and not end of life care.  (I'm learning a lot about hospice, Macmillan nurses, Maggies and Marie Curie at the moment with the stuff going on with my family.  But scary things to read in the middle of the night, on your own. Hugs. Hugs.  I will keep everything crossed for you on Thursday <3

That really must have knocked the stuffing out of you but your reasoning is sound, KFD. Think only of what your OWN oncologist says. 

Friday!!!

1.) Been a tough week with the family.  Terminal cancer is heartbreaking, especially as it's only been a few weeks since diagnosis for the person involved.   The NHS consultants don't seem to care either since there isn't anything they can do. But the district nurse and Macmillan have been invaluable.  But you can tell the services are very overstretched. Such a heartbreaking time.   

2.) Kicking off a hugely busy musical Christmas season tomorrow! 

3.)  Between all my musical stuff and running back and forth visiting and spending quality time with family, our house is dusty and musty.  Needs hoovered, dusted, kitchen cleaned, bathrooms done, etc, etc.  So hopefully will get some time on Sunday for a deep clean.

4.) Trying to find my Friday work motivation..... 

5.)  Cold in my house...  Wonder if it's hot water bottle time or put the heating on time.... Hmmmm. 

1- I'm very sorry, PB.

Oh PB.  When I was diagnosed, I was so scared they would say it’s too late.  I’m devastated to hear that “all to often” phrase has affected your family.  Big giant hugs!

1.  Back in the chemo chair today but a REALLY delayed start.  My port has been “receiving and not giving” so they did checks under X-ray with contrast to ensure it’s okay to use.  It is, just not a giver. 

2.  Lovely little Thanksgiving last night.  Managed to find one turkey breast at M&S and the kids were literally arguing over last bits of turkey and veggies.   

3.  My parents have been here two months now and it’s actually been really good.  Lovely to see the relationships build with my kids.

4.  Bought a fireplace and shelving unit for our snug.  It’s starting to come together!  In a few weeks that room will be “done “.

5.  So glad todays chemo is going ahead as this is my last round before Christmas at Kew and Lapland UK.  So I should be feeling okay for those!

Thanks both, it's been a very hard 4 weeks.

Yay for your last round of chemo on this cycle KFDancer!  And I hope you feel amazing for your visits to Kew and Lapland UK - That will be so amazing!

Friday!!!

1.) Been a tough week with the family.  Terminal cancer is heartbreaking, especially as it's only been a few weeks since diagnosis for the person involved.   The NHS consultants don't seem to care either since there isn't anything they can do. But the district nurse and Macmillan have been invaluable.  But you can tell the services are very overstretched. Such a heartbreaking time.   

5.)  Cold in my house...  Wonder if it's hot water bottle time or put the heating on time.... Hmmmm. 

I'm so sorry to hear about your family getting so little support from the NHS. I'm glad Macmillan and the district nurse can help.

How have you survived without heat?!


1. Thanksgiving is weird here. I always had to bring my own food in the US but I miss friendsgiving and the silly 5k races the most.

2. I'm going to miss twitter. It's gotten so buggy this week I don't think the current form will survive much longer.

3. I've been leaning into crafting to stay sane and will finally have cosy merino beanies for sale soon. Learning felting this weekend as well. I have some lovely blacklight reactive dyed wool I want to get creative with once I have the methods down. Next summer I want to learn how to dye it but that's an outdoor activity with my sensitivities and a rented home I don't want to make technicolour.

4. Living in pain so severe I want to cry every day is getting old. I've been put on many wait lists, but I don't have much faith they will be of help whenever I actually get an appointment next year. I haven't been able to wear socks or shoes or drive for months from the pain levels. It's a combo of the bones in my feet being too mobile and subluxing onto nerves and referred pain from my hips and lower back.

5. My partner is finally learning to drive. It's difficult because I can only supervise on days I'm well enough to take over if needed (and then be unable to put weight on my foot for a week as payback). Thankfully his instructor is okay doing lessons in our car. We will have a lot more freedom once he has enough experience and full license, but he managed the drive to and from NW London avoiding motorways like a champ with only a couple slightly unnerving moments.

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6 weeks from diagnosis to losing him. We lost him yesterday at 1:30 am,  to the bastard that is pancreatic cancer.  Lovely care from the paramedics, on call GP and district nurse.  Many faults of care between May and October, from a useless, beyond useless GP, but everything afterwards, Macmillian, Maggies, and the districts nurses have been fantastic.  We are heartbroken.  I wish I could take the pain away from my husband, but I can't. But I can only listen, help him remember the happy times, and go from there. 

Sending all the love and comfort I can your way PB.  Be the shoulder for your husband to cry on and we can be your shoulder.  Cancer is the biggest *bleep*ing a**hole around and a silent killer.  I hope you find comfort in celebrating his life when you guys have the strength.   

I am so, so sorry Phatbeetle.

1.  Today I’m feeling slightly more human. Again, been a very tough week post-chemo.  But last time I thought ahead and booked the spa for today. So I’m laying in relaxing quiet, pushing through warm bubbly pools and will have a scalp massage this afternoon.  This is what I plan to do on each “Friday after” for the rest of chemo. Sitting at home is too depressing yet not enough energy to do anything. And everyone is at work.

2.  Christmas will be different this year.  I know that my oncologist said it’s not my last Christmas (well, anymore than it’s any of our last Christmas).  While I’m normally quite restrained, this year - NOPE!  I give zero f’s.  My kids are perfect ages and SO FREAKING EXCITED.  The elf returned yesterday (ours brings a note about what they’ve been up to) and the kids were nearly bursting out of their skin. First time we’ve done Lego advent calendars and the kids are just ITCHING for the next morning to see what’s inside. Chocolate advent calendars too!

3.  In March I booked Lapland UK for Dec 14. It’s a ton of money and I wanted to get the timing right. Well, it’ll definitely be the perfect year!  And that’s without my diagnosis.  I’m sure I’ll spend the whole time crying.

4.  Yesterday was my son’s nativity. Managed to not sob through it, but kept my tears at normal “proud mama” level.  Putting a picture of my king and my daughter who always keeps me laughing with her elf balloon.

5.  Going to get our tree this weekend and we have The Toy Run that goes past our house each year on Sunday. Thousands of motorcycles all decorate and take toys for distribution to shelters.

1.  Today I’m feeling slightly more human. Again, been a very tough week post-chemo.  But last time I thought ahead and booked the spa for today. So I’m laying in relaxing quiet, pushing through warm bubbly pools and will have a scalp massage this afternoon.  This is what I plan to do on each “Friday after” for the rest of chemo. Sitting at home is too depressing yet not enough energy to do anything. And everyone is at work.

2.  Christmas will be different this year.  I know that my oncologist said it’s not my last Christmas (well, anymore than it’s any of our last Christmas).  While I’m normally quite restrained, this year - NOPE!  I give zero f’s.  My kids are perfect ages and SO FREAKING EXCITED.  The elf returned yesterday (ours brings a note about what they’ve been up to) and the kids were nearly bursting out of their skin. First time we’ve done Lego advent calendars and the kids are just ITCHING for the next morning to see what’s inside. Chocolate advent calendars too!

3.  In March I booked Lapland UK for Dec 14. It’s a ton of money and I wanted to get the timing right. Well, it’ll definitely be the perfect year!  And that’s without my diagnosis.  I’m sure I’ll spend the whole time crying.

4.  Yesterday was my son’s nativity. Managed to not sob through it, but kept my tears at normal “proud mama” level.  Putting a picture of my king and my daughter who always keeps me laughing with her elf balloon.

5.  Going to get our tree this weekend and we have The Toy Run that goes past our house each year on Sunday. Thousands of motorcycles all decorate and take toys for distribution to shelters.

Wishing you the most wonderful Christmas ever.  You're doing so great! 

I fear we will be featured on the news because my kids will have so many presents under the tree.

At my daughters school they have a therapy dog come each week and my daughter is IN LOVE.  If I manage to get through Christmas without a puppy under the tree, I’ll know I was restrained.