The calm before the storm

[Willowkins]

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.

In a similar boat here.

Seems to be loads of advice for those in the extremely vulnerable category; loads for people who think they might have the virus; not a lot of clarity for those of us living with those in the extremely vulnerable category.

I am sure all the panic buying is made worse by the media - every time they show a story of queues outside supermarkets, I am sure more people head out to panic buy... one of my pet peeves...

Stay safe everyone...

It's kind of hard to share this, because I know what you are all going through, but I hope you don't mind if I do: DH had phone consult with oncologist today and is officially cancer FREE. Bloods show zero sign; last scan discussed at MDT - oncologist hadnt seen the scan, but said MDT would have said if any issues. So now just waiting for colonoscopy to remove polyps/check etc, plus another scan of rectal area (as no rectum left) but fingers xd xd. Huge feeling of relief, but also the fear never goes away...

@yoloPenguinsEatfish that's bloody amazing, I'm sooooo chuffed for you 😍😍😍

Oh yolo, that’s bloody AMAZING I’m so happy for you and yours, just wonderfull xxx

@yoloPenguinsEatfish - that's great news!!

yolo that’s amazing - very happy for you. I think good news spreads the hope for all of us, but knowing that you and your husband can have this moment makes me happy too.

my DH is receiving his first immunotherapy treatment at Guys Hospital, I drove him in and will pick him up - can’t stay with him, so enjoying this rare moment of just lying on my bed - ignoring my (online work that needs to be done - I’ll get to it later). Have been so anxious they would cancel it, he was diagnosed beginning of Feb, so it has been a long wait - he has a long road ahead of treatment, but it’s started! Thank you NHS.

Oh thank you all, I was wondering if I should get my post deleted...

vuvuzela that's good news about the immuno, we also had a long wait between diagnosis and start of treatment - very hard to deal with. Fingers xd he copes with it well and it does its job xx

Oh course you shouldn’t have your post removed, we are here for the whole journey yolo, and we get precious little joy, don’t deprive us

Ditto ! We all need a bit of hope to cling onto ....

@yoloPenguinsEatfish what wonderful news!

We also have good news, no growth on DH's scan. It's still there but behaving itself. Thankfully that means no chemo is needed yet, I was worried that he might not get it anyway due to the risks.

Hope everyone is doing ok in isolation

loubieloo great news! I expect you are waiting for scans etc?

This whole coronovirus thing is just bizzare realy. Feels like the tsunami is about to arrive, and we don't know who it will affect the worst.

Stay safe everyone xx

Brilliant news @loubieloo4

We've had good news

Had phone consultation with Gamma Doctor :

Ones on right hand side - smaller
Ones on left side - smaller
Large one - same size

On right hand side there’s a new ‘Ill defined’ change but not worried at this point - follow up mri in 3 months to check

So all in all good :-)

Just need a plan from the lung oncologist Monday

oh nota happy and everything xd for a workable plan on Monday

Hi all - hope you are all surviving - we unfortunately got a call from the DR on Friday (he had been in for a scan and to get a head mask made) to tell us that Dh’s lesions/tumours are expanding - they were going to to stereotactic radiotherapy but now will do whole head radiation - as well as immunotherapy - felt a bit thrown by the call as had prepared for SSR - but hoping that he is called in next week for it to start - we are lucky that his treatment is going ahead during this pandemic.
So waiting for call on Monday to let us know dates -
Although as I mentioned in an earlier post our DD knows her dad is not well etc, we are going to lay down a bit more for her - I feel she needs to know a bit more at this stage - also to prepare her for DHs imminent multiple appts and tiredness. Does anyone have any experience of a partner etc going through whole head radiotherapy?

Wishing you all a peaceful Sunday

@iwantavuvezela we didn't have whole head - we had gamma knife. I know some people who have had it and where absolutely shattered for days after but then bounced back with no side effects. ((Hugs)) it's a worrying time, I'm dreading our oncology 'appointment' on Monday as I don't think they can offer anything else, just carry on with the targeted therapy which we know isn't working in the hope it makes some difference.

Thinking of you notapizzaeater for Monday’s results. Thank you for that info on radiation - tiredness he/ we can cope with. Told DD more of what is happening, I think she will brew on it for awhile and then ask more questions, but “pleased” it’s out there at least (a more watered down, factual account with the usual we trust the drs and how good they are). Although in fairness they are bloody brilliant and I do trust them!

vuvezela all love to you and yours, and evrything xd for nota DH appt tomorrow

Had oncology call .... in current climate they keeping with same treatment ..... rescanning w/c 18th May - and going to try another blood biopsy after this so not great as we know it's progressing but nothing we can do at min 😭

Hugs to you notapizzaeater

nota limbo is bloody hard isnt it? And especially when you dont know what that limbo actually means.

Hello All - Once again have been reading but laying low - having a terrible time here. New Chemo
Is making DH ill and unable to keep food down. He's started on radiotherapy for cancer which has spread to back and is utterly miserable - he's convinced he's dying right now - many tears and to top it off the current situation means we ( myself and DD (12) have no physical support as all family are in UK. Unfathomable times for us all. Sending best wishes to you all

chinchin I'm really sorry to read that. Can you get phone support from chemo team, advice maybe? I dont know where you are, do you have an option to sign up for assistance for vulnerable people? It sounds terrible, sending you a handhold across the ether .

Aww Chinchin that sounds traumatic 😢. It's soo hard

Just found out tonight that friend's DH has bowel cancer; op to remove tumour not successful so he is waiting on appt to go to Kings in London for further surgery. Hoping to speak to her tomrrow, he already has the bag for life; reading between the lines, I think his prognosis might not be that good.