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Original poster

The calm before the storm

999 replies

Willowkins · 02/06/2018 12:55

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

OP posts:
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yoloPenguinsEatfish · 01/06/2020 21:33

well done nota, I really hope you can get some sleep tonight and that tomorrow, as Scarlett O'Hara famously said, "is another day" Wine

Original poster
Willowkins · 01/06/2020 22:34

Hey nota and everyone
You got this.
You're not alone.
Much love xx

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notapizzaeater · 02/06/2020 12:46

Provisionally they’ve told us the brain mets aren’t back but the 2 of the big ones they gamma knifed at Xmas Are swollen. They’ve started him on steroids and we have the official phone call Thursday to discuss.

We’re at the hospital Thursday to sort out his radiotherapy to his ribs and back to help ease the pain.

It's like a bloody treadmill you can't get off .....

chinchin77 · 02/06/2020 16:24

@notapizzaeater Hoping all going as well as can be and my thoughts are with you and mr*@notapizzaeater and everyone else. Am wallowing in my own sadness this evening as mr @chinchin* is so very weak - his voice now so distant from the one it was. Where does it go from here? I cannot see any immediate cure for him, he is too far 'gone'. One day, I hope this bastardly disease will be curable - it cannot beat us forever. 🔬💊

chinchin77 · 02/06/2020 16:32

@Willowkins I spent this morning reading and rereading your bereavement post - so very beautiful. I wish you could be here for me. If you and YW's ever want a holiday in Australia our holiday home is yours. This is a good grief listen:

podcasts.apple.com/au/podcast/unlocking-us-with-bren%C3%A9-brown/id1494350511?i=1000470046138

chinchin77 · 02/06/2020 16:42

He's a colleague of Elizabeth Kubler Ross 🌺

loubieloo4 · 02/06/2020 16:44

@notapizzaeater glad that they have started him on the steroids, hopefully they will help, pleased that they aren't making you wait to long to discuss. I hope you are taking good care of yourself.

loubieloo4 · 02/06/2020 16:48

Pressed post to soon!

@chinchin77 sounds like you are also having a rough time, it's all so bloody hard.

@Willowkins thank you for taking the time out to post, I hope you and the yw are doing ok.

Still no news from DH's scan, not even a date to talk to someone, he is also due his routine scan as his last one was March 4th, why they didn't do it at the same time as his head makes no sense. Even more so that he has a terrible needle phobia and passes out unless he takes diazepam. I'm going to ring his (horrible) oncologist pa tomorrow and see if she can help.

notapizzaeater · 02/06/2020 16:52

We’ve been quite lucky with our oncologist - I’ve done far more research than she does (and we can’t expect her to be an expert on every cancer) so I ask and question her all the time - if I hadn’t we wouldn’t have got the new drugs to try. I know they have lots of people to deal with but it’s still really important

Original poster
Willowkins · 02/06/2020 19:37

Thank you all - and Chinchin that's very sweet of you. I am rooting for you all.
Hope you get the meds and the pain meds and the time to yourself that you need you need Gin

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notapizzaeater · 02/06/2020 20:12

@chinchin77 ((gentle hugs))

iwantavuvezela · 02/06/2020 21:10

@chinchin77 - sounds like you are having a tough time - sending you some hugs

@notapizzaeater - glad you the appt at hand on Thursday and hopefully the steroids will kick in - my experience with DH was that once they restarted them they have quite an immediate effect

Fuck this is really shit - we’ve had a good uneventful 3 weeks, I was feeling quite cheery as DH is much improved from before - today though his temp spiked (probably because of treatment he is on, but then of course there’s always Covid lurking and he has been advised not to take treatment tablets tonight) and it hit me again, the inescapable diagnosis of brain cancer, and that is not going to go away, and we will be dealing with it every day ....

notapizzaeater · 02/06/2020 21:14

@iwantavuvezela it is shit, it's a roller coaster we can't get off that we know is going to crash and there's nothing we can do to stop it, it's relentless. You're constantly fretting over everything.

chinchin77 · 03/06/2020 06:10

Thank you all - DH not moved from bed today and terribly constipated (despite his liquid only diet). I took myself shopping as DD's birthday soon - it was nice to get out, and watch the world go by - things resuming to 'normal' of sorts in Australia, I feel lucky to be here in these times, although heartbreaking we have none of DH's family able to visit. @notapizzaeater the rollercoaster analogy is perfect.

Hugs to you all.

notapizzaeater · 04/06/2020 19:21

Some good news today (and some bad news as nothing ever goes right .....)

DH brain mets haven't reappeared, the Suspicious area they saw last time hasn't changed at all. The steroids are working and DH is back to normal, we've got to start reducing the steroids tomorrow - gulp !

He's having radiotherapy Monday afternoon on his ribs so hopefully that will help with his pain. The doctor (who was really nice - and because of his confusion I was allowed in) is referring him to palliative care so they can play with his meds to help with the underlying pain.

Our 12 yr old dog was in the vets overnight as he hadn't eaten / poo'd for 3 days and his pain meds are in his food - so a vicious circle - he's got two masses on his spleen - because of his age (he's a big dog) eve decided to just 'ignore' them until we have to make a decision, it's not a painful condition SadSadSadGinGin

I hate this year ............

notapizzaeater · 04/06/2020 19:23

Hope everyone else is ok, @chinchin77 @iwantavuvezela @loubieloo4 @yoloPenguinsEatfish @Frikonastick x

Lovely to see you @willowkins

loubieloo4 · 04/06/2020 20:44

@notapizzaeater great news about Mr Notapizzereater, hopefully the palliative care team can sort his pain relief quickly.

So sorry about your furry baby, it never ends does it 💜

I spoke to the dreaded pa yesterday which was about as useful as a chocolate teapot, dh has an appointment on the system for 24th June but she doesn't know what for. I asked how long dh should take the steroids for as he's been on them for 3 weeks, she has no idea. Doesn't know when his normal scan is going to take place as routine scans are on hold...... I'm not sure active disease is classed as routine 😡 apparently she will get in contact with the oncologist

notapizzaeater · 05/06/2020 00:46

@loubieloo4 can you get in touch with PALS all of our routine scans are taking place on schedule with follow up phone calls. It's not on, it's bloody tough enough without them making problems.

Frikonastick · 08/06/2020 01:38

hi everyone, its been an interesting few weeks. short version is that i have finally managed to find a pharmacy here in NZ who will source DHs medicine from India. We normally pay over 5 thousand UK pounds a box of 28 tablets, but sourced from India means it will only cost 500 pounds a box. So an incredible, life changing, life SAVING amount. When the pharmacist rang to tell me, i burst into tears and had to put the phone down and then call him back when i had calmed down. i felt dizzy with relief. i cant even explain how it made me feel. to have this lessening of this overwhelming burden.

so then we called our oncologist to send the script through to the new pharmacist and he refused. he said he will no longer treat DH if we are not getting the meds from the USA. its company policy apparently. and neither will any other doctor apparently.

so DH has his next scan in a week, where we find out if the meds are still working at all, and if they are, then we somehow have to find a new oncologist, who will agree to treat DH.

or we are fucked.

totally utterly fucked

we have spent over 150,000 on meds so far. we cant keep doing it.

Original poster
Willowkins · 08/06/2020 04:10

Hi Frik not sure what time it is there but thought you might need a handhold. You have fought so long and so hard. I hope you get the outcome you need.

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notapizzaeater · 08/06/2020 10:52

@Frikonastick that's horrible, have you a Facebook group for your country / condition to ask advice ?

Some people in the uk buy the drugs from India when the NHS won't allow them (we was just starting to look into it when COVID changed the rules so we got the meds)

It must feel like damned if you do and damned if you don't 🤯🤯🤯

chinchin77 · 08/06/2020 12:01

@frikonastick that is corrupt. I am so sorry. What the fuck has happened to humanity.

chinchin77 · 08/06/2020 12:04

I'd be calling Jacinda...

iwantavuvezela · 08/06/2020 19:41

@Frikonastick - that is awful - I can’t believe that a dr would refuse to see your DH for that. There has to be a way to push this forward . Can we try and put our minds together to think of a strategy for you - perhaps help you write up some letters to email to relevant politicians

loubieloo4 · 08/06/2020 20:44

@Frikonastick I think I would if possible and you have the strength, I would call all oncologists that you could to check if they will treat him with the drugs from India. There must be someone who is sympathetic to your case. Sending you love and strength x