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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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notapizzaeater · 01/04/2020 21:35

@yoloPenguinsEatfish not good 😥

chinchin77 · 02/04/2020 06:40

Grim times for us all - DH kept in hospital today for CT scan, and IV hydration and nutrition (for a few days maybe more). There is clearly a problem with primary tumour (stomach). He's in a hospital dedicated to cancer, which was quiet but still many visiting restrictions etc. Having Wine while I wait for news. Feel relieved he's in the best hands, but the confronting reality is heartbreaking. 💝 to you all.

notapizzaeater · 02/04/2020 10:13

@chinchin77 ((hugs)) glad he's in the best place and hope he turns a corner xx

notapizzaeater · 02/04/2020 23:08

That moment when you think you’re doing ok and the local hospice ring to tell you they are delivering a food parcel ......

yoloPenguinsEatfish · 03/04/2020 16:21

nota no words just the biggest hug. Spoke to my friend yesterday, things dont sound too good with her DH. his cancer is in the higher bowel, so he has an ileostomy, but midway thru surgery his surgeon phoned KCH where the expert said 'stop now'.

notapizzaeater · 04/04/2020 00:56

@yoloPenguinsEatfish that's really not good 😥

iwantavuvezela · 04/04/2020 23:13

Chinvhin - hope you are okay and your DH improves.

Notapizzaeater - hugs.

DH has had 3 of his 5 radiotherapy treatments - it seems th
O have knocked him sideways - sleeping loads , two more next week. Really hoping a scan in the future shows some lessening in size of the lesions.

Hope everyone else is okay

notapizzaeater · 05/04/2020 00:48

We didn't get a rescan fir 3 very very long months as our neurologist said the swelling wouldn't have gone down for them to check 😢

yoloPenguinsEatfish · 13/04/2020 22:23

How is everyone doing in these awful, strange times?

nota, vuvezela, chinchin and everyone else, I think of you often.

DD2 is 21 tomorrow, this time last year I didn't know if DH would still be here... so even though we can't go anywhere/do anything it will still be a good day.

iwantavuvezela · 14/04/2020 23:06

Happy birthday for your DD2 tomorrow Yola - hope it’s a good day, and yes moments like this need to be treasured.

DH has finished 5 days of radiotherapy last week and today had his second immunotherapy- he was knocked sideways from the radiotherapy but seems to have recovered a little, so hopefully will tolerate immunotherapy better. Grateful as well that his treatment is allowed to continue.

Our lovely GP phoned to see how we are, and said DH is to go on the vulnerable list. Hopefully this means I can get an online shopping delivery! But worried about when schools go back how I manage shielding him, DD’s needs etc. God it’s difficult. Trying not to think too far ahead. I work in HE so will probably be able to do this remotely for most of this academic year and that way isolate myself more so as not to bring anything home.

I’m not sure when we find out if the treatment is working, in a way happy to let this go for awhile as I find the results part overwhelming - perhaps it’s just because we have always had to brace ourselves for “bad” news, especially when it was confirmed that it was stage 4 brain cancer. That was tough.

Thinking of everyone

SchrodingersKitty · 15/04/2020 17:08

I've been reading for a while but have hesitated to join you as it seems too real, but I think the time has probably come.

My DH (aged 71, 15 years older than me) is in the process of being diagnosed with - we think - secondary lymphoma in the brain. Backstory: he was first diagnosed with non-Hodgkins lymphoma (large B cell) in Feb 2017. It was thought to be stage 3/4 but he had a rushed admission which meant that they didn't do the initial PET scan that would have allowed staging. Stage 4 would have been if it had crossed the blood/brain barrier. His lymphoma was one that they hope to be able to eradicate, and he was signed off as cancer-free in July this year. In August, he lost some memories. We were on holiday and called 999 and the paramedics took him in to the nearest hospital. They assumed he'd had a minor stroke, but did a CT scan and found a lesion in his brain. He was given steroids which immediately returned the memories. As soon as they discharged him we came straight home and he was seen by neurology who scheduled him quickly for a brain biopsy. The steroids had shrunk the lesion so fast that they only got T cells in the biopsy. Ever since there have been problems with obtaining a diagnosis. He had two more scans, and each time the original area remained empty (literally, a space in his brain) but there were new areas of concern in different places each time. Too deep to biopsy. So for more than seven months he's been on a watch-and-wait protocol, under the care of the lymphoma team who were thinking it was probably secondary lymphoma, but reviewed by the neurologists who thought it might be an infection of some sort. There hasn't been any sign of lymphoma elsewhere in his system. Lymphoma in the brain seems to be the worst of the possible diagnoses, as there are a limited number of treatments and he already had the main drug - methotrexate - last time to try to stop it crossing to this brain.

That brings us to a week or so ago, when he started getting headaches, and then had a couple of episodes of confusion. They scanned him very fast, despite all the covid issues, and then did a lumbar puncture to test for spread elsewhere. When he was in having the puncture he spoke to a consultant briefly who said that they do now think it is probably lymphoma. They put him on a two-week course of steroids, with the hope that they will shrink it as effectively this time.

And there we are. We thought someone was going to ring on Thursday but they didn't, and we are still waiting for more news. Things are clearly in a state of some chaos in the ward, with treatments and patients all being rearranged. We don't really know what the MRI looked like, and it still has to be reported on and also looked at by neurologists. The lumbar puncture result has not yet come back. When we were discussing possibilities of treatment earlier in the year they said that the chances of a cure for secondary lymphoma in the brain was between 33%-50%. So not at all good. But they didn't clarify if there was possible treatment short of a cure which would keep him alive.

And then there is the added issue of treatment during the virus. I was ill for three weeks with something viral - today is 35 days since it started - which DH got mildly, so we are very hopeful that he might have antibodies, but of course we have no idea how soon it will be before it is possible for them to test for that.

At the moment we are living in a state of suspended feeling which is quite comfortable. As you'll all know, the waiting for results is the worst thing, and I'm finding it hard to stay calm having heard someone should ring today. DH is fairly resigned. I am really most concerned for our son, who is only 20 and is blocking it all out. (He's at home for the moment as his uni is closed). DH's first illness fell during his A levels and he managed to completely block it out and do very well. During his gap year and first year at uni he has been able to convince himself that everything will be fine. I don't know whether to let him stay in denial or try to help him to face it?

notapizzaeater · 15/04/2020 19:47

@yoloPenguinsEatfish hope your DD had a happy 21st birthday in the circumstances

@iwantavuvezela hope everything keeps going ok

@SchrodingersKitty welcome, grab a chair and a hug. The waiting g is the absolute worse and even when you get good news you're always waiting for the bad news.

We're just treading water, DH still taking his targeted therapy (oral chemo) so we don't think god have to go to hospital. They couriered his drugs to him last month. We've had the next CT come through for May, results in a June. I'm trying to get a 2nd opinion as his oncologist is telling us it's progressing and they think the drugs are slowing it down but not giving us any more options 🤯🤯🤯. DH was upset last week as even though he hasn't driven since they found the brain mets he's not handed his licence back which we did last week. He's working on his kit car at the min even though he knows he can't drive it this year - I 'think' to make sure it's in a sellable condition 😭😭😭😢😢 if the worse happens.

notapizzaeater · 15/04/2020 19:48

@chinchin77 @Frikonastick

hope you're both doing ok

notapizzaeater · 16/04/2020 12:14

It's One year today since we had the 'routine' follow up appointment At the hospital to be told Dh has lung cancer don't know whether to laugh or cry 😢

SchrodingersKitty · 16/04/2020 18:40

DH fainted in the garden today and hit his head on the paving. He has been feeling a bit faint the last day or so - we think from the steroids. I called 999 and while waiting for them we realised he couldn't move one of his legs. The paramedics at first thought he had a broken hip, but then decided it was his lower leg. They took him to A and E and I eventually heard from him that he has broken his leg in two places. They have put on a temporary plaster cast and will keep him in overnight and operate to put pins in it tomorrow. They say the concussion was really mild.

All really insane. I'm now trying to find him a walking frame to try and stop any more falls. We live in a ridiculous house with five stories, so he is going to have to sleep in the sitting room (we have a sofa bed) and wash in the downstairs cloakroom indefinitely. Just when you think things are as bad as they can get. On the upside, he says infection control in A and E is very good and he was seen very quickly.

yoloPenguinsEatfish · 16/04/2020 21:39

oh kitty I am so very sorry to hear that, what a terrible thing to happen.

I'm not on MN so much these days, but I really do think of you all so often and with much love.

DH has been having various bag disasters which makes him anxious and unable to sleep, plus some deafness which I think may be a side affect of capecitabine, but he refuses to do anything about it in these troubled times.

notapizzaeater · 17/04/2020 00:04

@SchrodingersKitty your poor DH, just another thing to add to the list.

@yoloPenguinsEatfish I might be picking your brain soon , my friends mum has just been diagnosed with bowel cancer, she's quite old and been ignoring it for ages till it's got so bad. They are giving her a bag next week ( then removing the tumour at a later date ???) and told my friend (who will be caring and dealing with the bag ) that she will have to you tube it/ and read the leaflet but none will be available to help her at first because of COVID .....

iwantavuvezela · 17/04/2020 13:27

kitty welcome to the thread - and I’m really sorry to read your latest update -
I know what you mean - in February when DH was diagnosed I thought okay this is the worst possible news and it cannot get any worse - then of course the worldwide pandemic hit - I’m not tempting fate anymore with saying can it get any worse!

Sending you some hugs and hope your DH is home soon and you are able to manage with stairs etc

yoloPenguinsEatfish · 17/04/2020 18:44

nota I will help as much as I can... but am no expert. DH goes on a really good colostomy group on FB, something to do with the bowel cancer charity? I will find out the name.

kitty hope your poor DH is doing ok.

In good news: DH latest MRI scan was clear, which coupled with clear bloods a few weeks ago is an absolute bonus. Still waiting for colonoscopy to remove polyps they wouldnt do doing main surgery, but god knows when that will be now.

loubieloo4 · 18/04/2020 00:24

Hi 👋

Last week marked a year since DH's diagnosis. He is still doing ok, waiting for his next scan appointment which will be due in June.

@yoloPenguinsEatfish I think dh has had some hearing loss due to the capecitabine, I don't remember them warning us that it could be an issue.

@SchrodingersKitty sorry you find yourself here with us, the waiting really is the worst part and it seems like that's all we do now.

Frikonastick · 18/04/2020 10:51

Hi all, think of you everyday and check this page every day even though I can’t manage to type. Sending shoulder bumps in solidarity and wishing you all the strength to endure.

I think it was winston Churchill who said “It is a mistake to try to look too far ahead. The chain of destiny can only be grasped one link at a time.”

That’s how I’m coping

SchrodingersKitty · 18/04/2020 11:43

@Frikonastick: I find Sydney Smith’s advice concerning low spirits very helpful: ‘take short views of human life: not further than dinner or tea.’

yoloPenguinsEatfish · 18/04/2020 19:15

frik just very much love Flowers and Wine xx

notapizzaeater · 21/04/2020 15:21

How you all doing?

My DH is quite depressed at the min, he keeps referring back to the 6/9 months the oncologist told him. I think this is the first time he's realised it's not good and I don't know what to say - nothing I say can take that away 😭

yoloPenguinsEatfish · 21/04/2020 17:52

nota, no there's nothing you can say to take it away, except perhaps try and encourage him to concentrate and today and tomorrow? Sorry, that probs useless advice.

DH is stroppy as hell, exploding bags, taking it out on the rest of us. I get so tired of being the peacemaker.