Pamela thread 5 - Bile Duct Cancer, chemo begins

Pamela, both good & bad in your updates. I'm glad the situation with your Grandma has been resolved. Can Jacob not fly to get her or your uncle take her to your mum. They're cheap enough flights.

hopefully you've cracked the back pain at night 🤞🏼

tell them about the continued nausea, you don't need to be suffering with that, plenty of different drugs available. It's energy sapping & you don't need that!!

your friend won't be expecting you to be a top notch house guest, she'll just want you to be getting rest, nutrition & feeling cared about! Just tell her what you need & what you can't cope with! Is there a bedroom on the second floor you could move to? Maybe she put you on the third as it's quieter/nicer view/bigger ensuite whatever without thinking about the stairs?!im struggling with a bedroom on the third floor (staying at work, only 4 more nights, my knees & heart are in a count down!!) in your situation I couldn't do it. I was on one floor when I came home & that was more than enough to cope with!!

is there another sitting area downstairs that you can retreat too when the noise gets too much??

there are lots of advantages to being at your lovely friend's, but no matter how lovely there are going to annoyances and it's perfectly fine to have a little grumble here!!

the food alone will be helping you SO much more than (even private) hospital food & if you're comfortable and your Drs are fine with you not being in hospital then make the most of it, but don't fight against it if they say you need to go back in - they won't keep you any longer than necessary.

but honestly you should be having the community nurse coming around for dressings etc. someone coming to do your bloods. I had then for much less of an illness.

call help(111/GP lots of surgeries open Sat morning) and get someone out for your dressing change, no way should you be traipsing back & forth to the hospital. Sounds like miscommunication between private & NHS.

Get Superman Kerr or your friend onto it!

katie
hampshire
xx

@sonicmum2002

Ah,so that's where it's gone!! Oh well, you deserve it, enjoy!!

“Rome wasn’t built in a day” - you’ve nailed it there, Pamela! And you are doing incredibly well, Warrioress, it’s so good to hear about pain management somewhat working. I too strongly believe in the power of good nutrition, fair play to your friend, and seeing the raw honey with your breakfast makes me smile and nod in appreciation. I’ve had major surgery on March 20th, it’s been tough and it wasn’t even cancer (even though the doctors and I didn’t know for sure until it was done) and only this Wednesday I felt my energy coming back somewhat, 4 months later! So I only can imagine what you’re going through, and I am in awe reading your updates, you’re showing so much strength. Upwards and onwards, Pamela - faith, hope and love coming your way from the West of Ireland.
PS: Quintus, my gorgeous ginger tomcat, the image is from a few years back, but I hope you enjoy anyway. 😊 All the best for today!

Thinking of you as always and spurring you on. The local prayer group are now praying for you too and holding you in their hearts.
I hope the trip for dressings isn't too arduous x

Absolutely dressing change at home .

And so glad your friend is on it with the food -she knows what she is doing .It will be SO much more nutritious than the contents of pouches that go with tube feeding .
I know dieticians like them because they offer precise calories etc but they can upset your bowels even more and contain a lot of artificial stuff .

This^
It might be worth contacting the closest hospice to your friend’s home to see if they can provide Hospice at Home. They can then work alongside your medical team to help make your life more comfortable.
I am guessing that you have always been the family problem solver? At the moment, try to take a step back from that role. Your uncle needs to understand that you’re currently fighting for your actual life, not just having a mini-break in London!
Faith, love and hope from this (very windy )little corner of Essex. X

Sorry you are feeling so unwell. They normally give you a chemo line 24.7 phone number on chemo, at least NHS one does. Please call it any time you need. They are great and prefer to know about issues ASAP so can help before it gets worse. They have a load of meds available though sometimes I found the meds caused side effects and better on less anti sickness but it's individual and a bit trial and error. Glad your friend is being so amazing. Glad the care is sorted. 45mph winds and rain here so inside gaming with this one who is very trilly.

Sending love and positive thoughts. So glad to hear that your pain has been a little more manageable. ❤️x

It sounds like you have a very nurturing friend there which is wonderful. I am glad Kerr can get some rest too and that your pain is better controlled now.

District nurse sound like a much better idea for dressing changes so you can stay settled and preserve your energy.

Lots of love to you all xxx

Still thinking and sending love to you. Glad pain seems a bit better

Love Hope and Faith

Xx

Fingers crossed they sort you out a district nurse. Keep on plodding on. ❤️

Porridge in a cabbage leaf, that’s so rustic! 😆

I’m so glad you are managing to eat and that you are being looked after by your lovely husband and your dear friend.

Much love ❤️ and gentle hugs 🤗 XXX

Pamela, I can only echo what others have said. Your body has absolutely been through the mill. Only a matter of days ago you were feeling hopeless, that nobody was listening to you or treating you- you felt abandoned. I'm in awe of how far you've come since then- flying to London, having surgery, having your first chemo, moving into your friend's house.... not forgetting your jaunt to the park! And of course you're chock full of various medications which although necessary will have side effects.

You're doing brilliantly, but it's totally understandable - in fact probably to be expected- that you have moments of despair, feeling rubbish and that it's just all too much. And however lovely your friend's house is - and it sounds wonderful - I totally get that feeling of part of you just wanting to curl up in your home, where everything is familiar. You're on this rollercoaster of ups and downs and sometimes your body just screams that you want to get off.

I hope today has lots of 'ups' and as few 'downs' as possible. And hopefully it will all become smoother and more predictable as you settle into the routine you're in for time being. Hoping for sunshine too, so that you get some moments outside, which is always good for the body and soul.

Hi Pamela! You are doing great, you know. You come across as such a fantastic woman. Prayers for you today, as always.
Here's my village church on this blustery day. It's 950 years old. There was a massive fire there 25 years ago which destroyed the ancient interior, but everyone where I live raised money to restore it - even the atheists like my Mum! Lots of love x x x

Keep going Pamela, chemo is tough but hopefully will help.

We have pretty wild windy weather on the south coast today but no rain thankfully!

Penny

Dear Pamela

I'm so sorry to read some of your updates but am equally pleased that some of the things are better such as pain management - sleeping is vital at the moment.

You've had lots of practical suggestions already. I'll add my twopence:

• definitely ring 111 today and ask for a district nurse to see you today for dressing change. I don't think you should delay until Monday. I had them come to me daily for my wound after my surgery and they were amazing.
• maybe ask Kerr to contact MacMillan for you. They will also support with chemo side effects and wound care.
• NG tube is a pain but it does give you nutrition and you sort of get used to it
• catheter is also wonderful in my opinion. I had one for over 2 weeks as I was not able to even manage a trip to the loo. I didn't feel anything and was actually fascinated to see the bag fill up with wee! It's the small things, right?
• it's worth thinking about hair loss before it happens. That's a massively difficult thing to endure and with hindsight I wish I had cut my hair short before it fell out. I know a lot of people who did this and it made it less painful emotionally.

Day by day, hour by hour. It's s bloody rollercoaster of the worst kind. And you're doing amazing. Be proud of yourself and have faith x

Hi Pamela,

You are going to go through such an array of emotions. I think it is mindfulness? that suggests that emotions aren't permanent and that rather than becoming bogged down in the emotion that you are feeling at any given time, to realize that it isn't permanent and to observe it as it passes. Really you are objectifying it as something that hasn't come to stay but is rather a passing figary.

Just every little possible up, keep that in your mind! It must be so difficult being on a roller coaster of ups and downs. I hope all your downs turn into ups

It also must be a worry about your Grandma, but I’m sure, your mum will work it out! And if you’re grandma is with your mum and Jacob, and has so much love in your house, I’m sure she will be fine.

Sending best wishes and caring thoughts for you to feel better very soon. 😘🌸🍀🙏

Good afternoon Pamela
I was sorry to read your update this morning, you're being truthful about how you feel though and that is important. It is normal to take 1 step forward and then another step back in terms of emotions and thoughts, but happy to see you feel a bit better in your latest update. And you're right - Rome wasn't built in a day and these things do take time, but you are on the right track now and have everything set in place.

All you have to focus on is keeping your strength up as much as you can with all the lovely meals your wonderful friend has been making, getting lots of rest but alsovkeeping as mobile as you can so you don't seize up but don't put too much strain on your feet so you don't swell up any more, and just keep the mantra 'easy does it and little by little' in your mind.
Time will pass and you will gradually get better and better ❤️

We are all rooting for you 💐 xxx

Hi Pamela, fingers crossed that your discomfort eases soon and the chemo starts to do its thing. I’m sending you a symbol of hope, a rainbow that I saw over beautiful Cardigan Bay this morning. Wishing you all the strength you need to see this fight through xxx

Oh dear - what a lot you've had to deal with. I think you are right to move on from stressing about Grandma though - it is what it is and there is a silver lining of her being with your mum. Perhaps your Uncle doesn't realise just how challenging things are at the moment - who knows...

I'm pleased to hear your pain levels are down but completely understand your anxiety about how slowly things are improving - or not even seeming to. I think there is always an expectation once we start receiving treatment that we will 'feel better' - but sometimes it's a very slow process. You have an excellent and dedicated health team and Prof B will not let you deteriorate. He will tweak if need be but for now, I think you just have to trust that things will improve slowly.

And here is DDog. She rolled in so much fox shit yesterday that we had to put her in our fancy new bath and wash her and condition her with my fancy hair products as we had no dog shampoo in the house (probably not good for her). She was not impressed at all and shook herself all over our lovely walls but we blow dried her and now she looks and smells like she just 'stepped out of a salon'.

From family experience you’ll feel worse before you feel better. Chemo is absolutely awful, sending you strength. Don’t think it’s not working because you feel/look worse, it’s just what it does to you, like a battle- destroying the cells.

You’ve had a lot on your plate, you’re definitely doing the right thing by letting it wash over you, you can’t change it and it’ll drain you to overthink it.

Hopefully you’ll feel a little better over the forthcoming days xxx

Sending you lots of love. I'm thinking about you daily and sending positive thoughts. You might not feel like it, but honestly you truly are amazing and an inspiration to us all xx

Hi Pamela I’m sorry you’re having such a tough time. Glad your pain is somewhat diminished at least. Just wanted to say that when I went through chemo I found that the steroids made me as high as anything and the subsequent crash was very difficult. Alongside that chemo kills cancer cells but often kills other cells too and I used to think the widespread death of cells made me feel depressed and debilitated too. So steroid crash and cell demise and tough chemo effects equals a real storm.
You will get through this. Your lovely Kerr and wonderful friend will continue to support and love you. All of us virtual people too. Sending strength from Ireland x

Your friend sounds lovely and the food looks delicious. I'm seriously coveting that bowl!

Glad to see that the pain has subsided, some decent(ish) sleep will make all the difference.
Being wide awake and in pain in the wee small hours is the absolute pits.

Taking inspiration from you on seeking joy in the small things, I am not moaning about the fact that it's tipping it down on my day off after sun all week whilst I was working! It's doing my plants the world of good and means that cats now are giving me the time of day. They're def fairweather felines...

And, I've stepped outside of my comfort zone and booked myself onto a TRX exercise class tomorrow! There's a good chance I'm going to do myself a mischief but I might actually enjoy it!

Also, bought myself a new skirt from Snag and it's bloody lovely. I usually live in tracksuit bottoms for practicality but might be a covert.

Take care and carry on building yourself up.