Retroperitoneal Leiomyosarcoma part 2

[Earlandmrsgrey]

The power of Mumsnet...I actually had a reasonable nights sleep!!

Work night out tonight. Bongo's Bingo in Clapham. Not sure what to expect but I wasn't going to turn it down. I'm hoping to find a good balance of doing stuff/doing nothing this year. I get so exhausted, but I don't want to spend the rest of my life on the sofa! This blasted cancer has at least resulted in the reconnection of some old school friendships. Every cloud... sometimes you just have to search a little deeper for the silver lining.

www.mumsnet.com/talk/cancer/5394978-likely-pancreatic-cancer-how-do-i-tell-my-mum-that-im-probably-dying-from-the-same-thing-that-killed-my-father?page=1

Good luck for tomorrow @Earlandmrsgrey wishing you well 💐

I just can't imagine venturing into London in this heat 🥵🥵🥵 unless wearing a bikini with ice packs taped around my torso!

Good luck OP. Long may the stability continue.

@Earlandmrsgrey Good luck with the mri and I hope it’s early as possible so you can drink.

You'll love this... telephoned yesterday at about 6pm to be told they had a cancellation for tomorrow (eldest son also verifies that she said tomorrow) at 2pm. Get there today... appointment is actually 2pm next Saturday. Which is absolutely NOT what was said during the telephone call. Anyway, another long story cut short...they did the scan!

The rest of the day was fabulous. Sweltered in the British Museum, walked here there and everywhere, shopped and ate cake!

So glad they did the scan for you and didn't make you wait another week. So glad too that you enjoyed the rest of your day and ate cake x

Funny - maybe the quickest way to get an MRI is to just show up!

I've spent a fabulous few days in Gloucester with my alpaca friend. Impressive docks, wonderful food, and the cathedral was definitely worth visiting. Also ventured a bit further afield for a wander around Puzzle Wood and Clearwell caves. We both also had a 'I've been here before' moment at Westbury Court garden. It seems that the National Trust are struggling to water their plants and they're in the middle of a water garden. We have a hosepipe ban here and I'm pleased that my sweet peas are looking marginally better than theirs!

In the midst of all this I had another telephone consultation...I'll be back on chemo (gemcitabine and dacarbazine) a week on Wednesday. Unfortunately I'm not suitable for targeted therapy as multiple new liver lesions were visible on the MRI. They need to try and stabilise the disease before they can remove any mets. Obviously a bit disappointed with this but it was expected. I've requested to have a port fitted, they would prefer me to have a picc as next line of chemo requires this. I would at this moment still prefer a port as at least I could swim with that if I wanted to. I'm also going to see if I can get treated closer to home as it's about a five hour round trip and this regime is chemo every 2 weeks.

Today I've been attacked by DHs new posting shed. He is in the process of assembling the shelves and left one leaning against the shed. I walk past just as a gust of wind catches it. It fell onto the back of my thigh and knee...massive bruise!

On a positive note...my owl has come home to roost!

That's a nice update..(apart from the leg injury) I hope you can have treatment nearer home..

Lovely update from your few days away, I'm guessing your Alpaca friend likes/keeps Alpacas and is not actually an Alpaca? Though nothing would surprise me on MN these days 😅

Ditto with PP and hope you can get treatment closer to home which would make it a little less of an endurance for you every two weeks. Enjoy watching your lille owl ❤

@hourspassed yes, she breeds them!!

Looks like I'll be having at least my first and probably second chemo session at UCLH and then I'll get transferred to the Marsden. My consultant happens to be on A/L so can't complete the referral! I'm more than happy with this, gives me a few more days to explore London. At some point they'll also fit a port.

She's brave! Alpacas terrify me - they always look so full of mischief 😂

Enjoy your extra few days in London and hope you get your transfer to make things a bit easier for you 💐Hope your bruise is healing btw!

Woke up from a much needed mammoth sleep to the sound and smell of rainfall! Didn't last long though.

Not been feeling too great for the last couple of days. Beginning to get pain in the liver area which can be quite intense at times. Visited work on Friday, I think the last time I was there was when I was briefly working in January/early February. I've seen some of my colleagues more recently and many have been in touch. Was hard though, having the same conversations multiple times as I went from office to office. I think I must of suppressed a lot of emotions as I left with a massive lump in my throat. By Friday evening it was painful to breathe. DH was on a late shift so I resorted to Dr Google which of course just made things worse. Breathing was a bit better by Saturday morning but I was also feeling really fatigued. DH then didn't go to Kent to visit his mum who managed to put herself into hospital earlier this week with suspected dehydration and onset of malnutrition. She's an added worry and BIL who was with her earlier this week is understandably beginning to get a bit fed up of doing all the donkey work. I think it's all just taken its toll on me this week and I've had a bit of an anxiety attack. Breathing is much better today and is only painful on taking a deep breath, and I'm much more energetic. DH has gone for a flying visit to see his mum.

Neighbour popped round with some unexpected flowers for me. She happened to choose sunflowers...the flower for sarcoma and July is sarcoma awareness month! An excellent and cheerful choice.

Nice to hear from you..

I have a row of sunflowers in my garden, all monsters but not flowered yet. When they open I will send a picture.

Sorry to hear you've not been feeling good @Earlandmrsgrey Hopefully the treatment schedule will help to alleviate some of this. The work visit must have been tough. Your strength is incredible 💐

Sunflowers are the most cheerful of flowers so such a lovely gesture from your neighbour. Hope the next few days are calm and gentle for you.

edit for typo

Today turned out to be rather dramatic. Pre-chemo bloods taken followed by a consultation. Only the FBC was available by the time I left and all looked fine for chemo on Weds. Brief shopping trip before catching train home as meant to be meeting some friends for tea and cake. I'm half way home before I get a call from the Dr. Basically it was 'get yourself back here or get to your local A&E without delay'! Potassium was dangerously high at 6.7. I'm by myself on the train trying to keep myself calm whilst getting in touch with husband to pick me up and also cancelling friends. Quick trip to a very busy emergency department and 25mins later I'm hooked up having another ECG and repeat bloods taken. Literally 5 minutes later we're on our way home. False alarm, potassium at 5.0!! It's probably as a result of having to repeatedly clench my fist in order to get a vein up to take the blood at UCLH. Can't fault the emergency team, they were incredible.

Apart from the drama I had a fabulous time in London. Happened to meet 2 other sarcoma patients as we all happened to be sat at the same table. Was then complemented by two reception staff on how fabulous I looked today!! Then during my brief shopping trip I ended up chatting with two chaps over the skirt I was wearing as they recognised the designer (Nicola Quilter, she was once in Home and Away and is a truly lovely person). Then the A&E receptionist also complemented me on how joyful I looked. Ups and downs and ups again.

I'm so ready for Wednesday. Bring it on.

You're a lesson to us all in how to live life to its fullest, OP. Awesome. 💗💗💗

How terrifying! Those high potassium’s are so scary. So very grateful it was redrawn so quickly. It sounds like such a wonderful time in London. I have to have labs drawn today for chemo on Wednesday also. My RBC’s and platelets are usually too low so hoping for the best. Hang tough Mrs. Grey.

Rollercoaster day! So glad it was a false alarm that must have been so scarey.

Yay for all the compliments tho! ❤️

Gosh must have been scary getting that call but so glad it turned out that there wasn't an issue.

I'm very impressed you have an item of clothing where others recognised the designer, that would never happen to me....off to Google Nicola Quilter.

Hope Wednesday goes seamlessly

You are amazing @Earlandmrsgrey

Wishing you all the very best for tomorrow @Earlandmrsgrey

Good luck tomorrow @Earlandmrsgrey 😘 You've got this! 💪🏻

That was a long day! Caught the 07:33 and my return train pulled in at 19:27!

Pre meds followed by a 3 hour gemcitabine infusion that actually took a bit longer. Then followed by dacarbazine that took about 2 hours. Even the snack trolley and drinks ladies were commenting! Fortunately as it was first go with this combo I had a bed. The dacarbazine infusion should be quicker next time as I'll have had the port fitted. I have a different range of anti sickness drugs and no filgristam injections...yay.

For those that have had treatment at UCLH Macmillan you might be interested to know that they have put in some low height 2.5 sided booths around the main part of the suite. I expect that when in them, they are a bit quieter and also make the enormous atrium feel a little less intimidating and enormous. It also made the tiny table of jigsaws, magazines and books look a little more inviting.

Chatted with fellow bedmates, all lovely people...cancer sucks. All in all not too bad for such a long day. Only complaint is that the air con was on way too high and it was freezing. I don't think I've ever known the NHS to get the temperature under control!!

@Sbmpp I hope your bloods were good and you also had more treatment today xx

Nice to hear from you and glad your day wasn't too awful..