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.

nota let's hope covid brings a little glimmer of hope into your and DH life and someone will prescribe those drugs.

Despite being allegedly fine, DH is having disturbed nights and sleeping later and later in the mornings. Hoping it's just a catch up on sleep type thing.

@yoloPenguinsEatfish - it's a nightmare, every little thing makes you worry! Let's hope he's just tired 🤞

On the Facebook forums one person has managed to get the 'better' drug others have been refused

Thank you notapizzaeater - really hope your DH gets those drugs, fingers crossed.
DH has been in hospital this week due to side effects from immunotherapy- - I had to really push hard for a face to face assessment early this week and they found that his liver was inflamed - subsequent MRI scans unfortunately showed that his tumours have not responded so they are switching his treatment plan to another targeted therapy. It’s been a difficult week, learning that tumours are growing, immunotherapy not working, but we have been offered a plan B, and DH is recovering and sounding so much better, finally eating. I’m using the time to recharge and reenergise - with Covid I cant visit so I drop off the odd package with food and treats. I cannot believe how much I have slept and how tired I have been. Next week he starts the new treatment plan - I am learning to ride this rollercoaster - not skills I thought I would need.

Hope everything good with everyone else.

I would love at some point to discuss coping strategies (for the person not diagnosed)

@iwantavuvezela coping strategies for me are, I see a psychologist who specialises in cancer patients and their families, both DH and I go, sometimes together sometimes apart, she’s my canary in the mine if you know what I mean. I’m so messed up i can’t tell what is or isn’t normal anymore. I try very very hard not focus on the future. I feel overwhelming pressure to get it all right, that’s it’s paralysing. So I’ve been working on letting go of the idea that there is somehow an optimal way to get through this. And I go to the beach as much as I can. I don’t even walk much. I mostly just stare at it. The sound helps.

@iwantavuvezela I drink far more gin and tea than I used to ! I've got a good support network of friends around me.

I constantly sit down and work figures out for 'afterwards' to reassure me we will be ok. DH is the main earner - I work part time to fit in with DS (ASD)

Happy to have a natter with anyone on here if you want to talk ?

Thank you both - I had an online therapy session this week which really helped - a space to offload! We were offered specialist counselling related to DH’s diagnosis, but it can now only be online, and there are privacy issues etc with lockdown and finding a time when we can speak. . Hoping when DH is well we can restart this.

notapizzaeater wine is definitely my friend in the evening!

I haven’t dared to do the “figures” yet but at some point I must. DH got some money from a policy, and I figure that worst case scenario that will buy me some time to get myself financially sorted, and supplement our/my income as there’s no way I can manage our current life on just my salary. DH was the higher earner, I work in education 4 days a week so was always the moderate earner - I’m unable to talk to DH about finances or anything so this is something I keep inside myself. But I have a financial advisor who has been beyond caring and helpful.

I keep going through scenarios in my head and then come back to 3 possibles - DH will get better and he will fall into that part of the statistics I read about and hope for, DH will get better to an extent or for a period of time, DH will not get better - in some ways it calms me as I realise I have no control over those options, so I try stay in the present and remind myself that for “today” we are all here.

I am doing yoga as a way to escape my head, and working and helping my DD with schoolwork allows me in inhabit for parts of the day at least a Life I recognise.

The biggest shift has been the anxiety and stress, and the caring role and realising that I have to learn and be able and capable of whatever comes my way

Hi All

I haven't posted for a bit. My DH is the one who (almost certainly) has secondary central nervous system lymphoma, and recently broke his leg. We are in a state of relative calm (appropriate to the thread title) as the steroids seem to be helping for now. The plan is to keep him on them indefinitely. They cause all sorts of other issues, including stopping him sleeping, so he is now on sleeping tablets, but they are definitely resolving the mental confusion. We spoke to palliative care and they were reassuring about managing symptoms but not at all reassuring about the chances of us being able to get any care support for him at home - even if we pay. We are in a fair-sized town, so this seems surprising. (They meant at any time, not just during coronavirus). So that's obviously worrying, but trying to put it out of my mind for now.

Just when I thought we had a handle on all of the crises for now, I got an email from my university to say that they will need to start redundancies as a result of huge anticipated financial losses as a result of coronavirus. Before that they want senior staff to take voluntary paycuts (I'm a professor so that definitely means me). So I'm now worrying about all of that as well. We were already going to be considerably worse off without DH's full pension, so this is just more financial anxiety. It has meant that I have felt obliged to pick up my work again, even though colleagues have been very kindly covering for the last two weeks of crises - I really don't want to be the most obvious person to cut.

In terms of DH's treatment, we have still not had the final discussion about whether he wants to take up the option of one course of chemo. They are very negative about the amount of time it might buy and very concerned about the risks. There are still some test results to come in, but I expect we'll have the conversation this week. He would rather not have the chemo, and feel less ill for the time he has left. I'm a bit back and forth, but of course it is ultimately up to him.

I think that I really could do with some therapy. Palliative care are supposed to be the ones who fix it up, but they didn't mention it when they spoke to us at the weekend and I forgot to ask. I'll follow it up with them soon.

@SchrodingersKitty - have you spoken to your local hospice, they have palliative teams (ours are better then the hospital)

Have they made you aware about leg weakness with the steroids ? DH was in them fir his bran mets, he loved loved loved being on them, they stopped ALL his aches and pains but after about 2 months noticed he couldn't get up out of a chair without it being a struggle. Luckily (?) they where already reducing them as this is the major side effect of long term use (anything over a few weeks)

If anyone wants to chat in real life just message me and I will share my number

@notpizzaeater: yes, we are talking to the hospice palliative care people. We just discussed things with the lymphoma specialist and agreed to probably not go for chemo, though decision can be reversed. The info about the leg weakness is useful: he is certainly getting other side effects but they are currently able to treat them. She has said he can tweak the dose himself as a lower dose should also hold the lymphoma at bay for a while at least so he might try cutting it down a bit.

@SchrodingersKitty worrying about the finances is such an emotional drain isn’t it. Before DH latest diagnosis I was going to be resigning as I have a very stressful job and I had just run out of steam, it was quite debilitating. But, then of course, I not only couldn’t resign, but had to take on a more senior role with even more stress in order to earn more money to pay for meds (we are in NZ so have to pay for meds ourselves). And also of course, because I will in the near future be a sole earning parent and I really will need my job. And through Covid, I have been working even longer hours in a bid to keep my job, and have managed to escape redundancy, but have had to take a 20% pay cut, while working full time.

I honestly think that if we didn’t have the financial pressures, then this, I don’t even know what to call it, experience? would be so much more bearable.

This morning DH was so tired, and feeling so unwell and I wanted to weep with frustration that he can’t just stay in bed, but has to drag himself up and get to work.

Sorry, I didn’t mean to go on so. I can’t even remember what I wanted to say, except that it was to wish you strength and offer some possible comfort in knowing you are not alone. We walk together.

Hello All - once again reading posts and thoughts are with you all, the worst time to be going through 'this'.
After my last post DH has had pneumonia, was displaying all symptoms of CV19 and rushed to hospital for test / isolation. Was in Hospital for a week. Can't digest food so still on a nose feed, which is bloody depressing for him. Had oncologist appt who confirmed he's not responding to chemo - next step is immunotherapy which starts tomorrow. He's weak, tired and in pain, sleeping a lot as well. I need to contact a therapist. We have been spending time at our lovely beach house and I often think how I want you all to know it's there for you and families, if life resumes to some sort of normal again. @Frikonastick I'm in Australia so nice to know you are near. love to you all

If you don't subscribe to this, do - Nick Cave has some beautiful posts about grief xx

www.theredhandfiles.com/create-meaning-through-devastation/

Sorry to read so many are struggling 🙁

I am also worrying about dh, (39, stage 4 bowel cancer) he already has lots of mets including liver & lung. I think he needs a scan of his brain, he keeps forgetting words, stopping talking half way through sentences as if he has finished them iygwim, he's had a few dizzy spells, headaches and is getting very very tired. He was disagreeing with ds that the kitchen cupboards are called wardrobes yesterday. He's just not himself.

His last chemo was December and he is due a scan next month but we've had no correspondence from the oncologist since March, his usual oncologist has also been moved to help with covid. I'm not sure who to talk to about it the secretary is useless and rather rude whenever I have spoken to her before. I don't want to ask about scanning his brain in front of dh as he gets pissed off (he's obviously scared 😟) they have never scanned his head before, do you think they would listen to me without dh?

Still no news from the life insurance although the Macmillan team who are dealing with them have been great at keeping in touch.

@chinchin77 dh and I would desperately love a holiday in a beach house, sadly we live in the UK. I hope it's helping at the minute.

@loubieloo4 my DH has brain mets. He started forgetting things, the one that made me speak to the hospital was when he came home from work and couldn't tell me what he'd had fir dinner, he could tell what it looked like, cost, taste but not the name (coronation chicken) I spoke to our 24hr helpline and they had him in the next day for a MRI - they found 6 mets. He got referred to Leeds for Gamma knife (which he had a week later) on there scanners they found 10 which they zapped them all. First check up was about 6 weeks ago, they've all gone and there's one area of concern they keeping an eye on.

@chinchin77 beach house sounds fab

@loubieloo4: I'm sorry to hear about your DH's confusion - those do sound like possible brain symptoms. Do you have a nurse-specialist co-ordinating things (the Macmillan nurse?) . Would they be the people to speak to about arranging tests?

Hope everyone is able to enjoy some of the sunshine and the long weekend. After 10 days DH was released from hospital (went in due to side effects of immunotherapy) and was released early evening just in time to be with us to celebrated our DD’s 13th birthday. Unfortunately his brain lesions are growing and there seem to be more - so for now he’s on a different self targeted therapy, they have stoped immunotherapy as it was not working - hoping the new treatment is able to reduce / suppress them. It’s good to have him home again, I can see how much happier he is and I even got him out the house for a drive so he could just see the outside world for a bit. He is weaker, but at least eating and the symptoms he had previously seem under control. I noticed on his medical notes that next to his medical plan for the new treatment they have written - palliative care - I haven’t been able to speak to his Dr as not allowed in hospital with him. I might try and phone one of the McMillan nurses next week to see if they can help me decipher his medical notes and what it all means.
Do you think I could ask his Dr to phone me to talk this through on my own?

I’m thinking of you all - glad to have found shelter in this group

@iwantavuvezela if your DH has given them permission then they might talk to you. I generally do all the talking (questioning - think our dr must hate me !) at appointments. My DH is under palliative- doesn't mean he's about to drop dead but that can't be cured.

I’ve just had to put my dog to sleep. She was my constant companion for 15 years

Oh @Frikonastick, good god, I am so sorry and heartbroken for you xxx We have a beloved dog, our last boy was killed in a road accident before cancer diagnosis, now this boy is my only
life line at times. Tell me about your one when you are ready. Am sending all my 💝💐 to you.

podcasts.apple.com/au/podcast/the-thing-about-advanced-cancer/id1473093253?i=1000446682794

Palliative Care podcast xx

@Frikonastick so so sorry, our 12 yr dog isn't well, he had £6k worth of surgery last year on both his legs and he's really slowing down. Our son is obsessed with him and loves him to death ..... I keep thinking about him loosing his dad and dog in same year. 😭😭😭. We're getting a puppy but she's currently in Rumania as soon as it's safe she should be coming. Wasn't ready to get one yet but we discussed it and DH really wants one now .....

@Frikonastick so sorry to hear about your dog - big hugs

@chinchin77 thank you for podcast link will listen to that

oh frik I am so so sorry about your poor darling dog. They are a lifeline to mental health.

thank you so much for your kindness and understanding everyone xxx

@Frikonastick we're in this together 😍