Husband terminally ill at 38

Terminal illness
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Hi All,

My husband was diagnosed with terminal cancer just this week and I am struggling to cope with the thought of a future without him. It feels like this cancer has gone through him like a freight train in only a couple of months and he’s struggling with the symptoms more and more. He is an inpatient at the moment and has been there for 3 weeks due to emergency chemo and brain surgery needed - hoping he can come home this week. He is only 38, fit and healthy and we have a 5yr old daughter who is obsessed with him. He is literally our world. As well as my own grief, I’m heartbroken thinking about what’s going through his head about the things he’s going to miss, all the plans we had for the future as a family are gone.

I’m trying to hold it together for both of them but all I really want to do is stay in bed and cry, I feel guilty at the moment because I am literally waiting for 7pm so I can put our daughter to bed and sob - I’m so exhausted from waking up feeling sad and that feeling never goes away. Knowing that our life together as a family will never be carefree again makes me feel physically sick

I was hoping to hear from someone in a similar situation or has been through this grief at such a young age with children. I have no idea how I am going to talk to our daughter about it or how she will even comprehend a life without him but plan to speak to the lovely ladies at Maggies for some advice and support.

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Oh my dear, i couldn’t just scroll by and not say something, my heart goes out to you, its appalling what you are going through.

But i do know what you are feeling even though my husband wasnt as young as yours but he too was terminal 10 months ago pancreatic and liver cancer. Im sure there are other younger people
on this site that have lost a loved one and will be able to offer you some comfort. God bless Margarita x

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Hi @I_am_kelly,

Would I be right in assuming your husband has a glioblastoma? There are few other really nasty brain cancers like astrocytomas, etc., but glioblastoma is generally considered to be the worst.

I think the first thing you need to do is call the Brain Tumour Charity: https://www.thebraintumourcharity.org. They are based in London, they have a free phone number, and they are also the world’s leading charity in brain tumour research. They have links to organisations and leading researchers all over the world.

The paradox about cancer is this: for certain cancers which are said to be terminal, the death rate one year after treatment usually is around 25 - 50%. There are some when it’s as high as 75 - 90%, but the fact is, the line never reaches 0%. There are almost always a few people who for whatever reason, and despite all the research that has been done, survive despite the statistics.

I don’t know exactly how you feel, because I have never had a child. But I was diagnosed with Ovarian Cancer stage 3c 11 years ago, and here I am cancer free today. I haven’t had a single recurrence. My chances of recurring now are similar to the chances that any woman has of getting Ovarian Cancer, which is a disease associated strongly with age and also obesity. I am 66, but I am thin.

On the other hand, my husband died of a brain stem glioma, presumably GBM4, last year in September. He wasn’t offered any treatment at all. COVID rules still applied when he was admitted to hospital, and the entire NHS was exhausted by the first wave of COVID. The diagnosis was accurately made by the admissions unit, however due to pressure on bed space he was sent to the acute stroke unit, which predictably didn’t have a clue about what to do to him. His consultant specialised in MS - multiple sclerosis. The Registrar seems not to have bothered to read the notes from the admissions unit. & etc. If you search my name, you will find out more about my experience. My husband was 71.

BUT your husband is 38, and it seems to me that his cancer is being treated with all the medics can do with it at the moment. If you get in touch with the Brain Tumour Charity tomorrow, you will find out what you can do to help him. It might be that a ketogenic diet is appropriate, that’s the diet that includes plenty of fat and protein, but no carbohydrates. It’s actually quite nice after a few days, but your breath stinks for about that amount of time too.

I hope that helps you a little. Please make the call first thing tomorrow at 9am, and let us all know how you feel after that. Please keep closely in touch with this site, because there are lots of people here who are in or who have been through the same thing that you are going through now.

Finally, Sue Ryder itself is a charity dedicated to all those with a neurological illness and their families. I don’t know where you are, but please call them also, because they will do anything they can to help you too. There is also Marie Curie and MacMillan, who can help with palliative care.

Palliative care doesn’t mean that life is over. I have severe arthritis in my spine and I get palliative care when the pain is uncontrollable. Nobody - especially me - thinks I am going to die. I have an adopted son who lives in another country that is a long flight away. I have 3 dogs here who depend on me, and quite a few good friends who’ll always do what they can to help.

That’s all I can say. Please try to have a peaceful, relaxing day. It’s warm and sunny here, I hope it is where you are too.

Love,

Christie xxx

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Hi Christie,

Thanks for your message, I think it’s something slightly different.

Nick has an aggressive cancer called a neuroendocrine tumour which started in one of his sinuses and grew up through the base of his skull to his brain which is when he had the surgery.

It’s been growing rapidly and is also now putting pressure on his eye and has extended in to his nasal cavity (this is where the first symptoms developed in December with a slightly bloody nose).

The cancer has now spread to his neck (which they will treat with radiotherapy), and a vertebrae in his lower back. He’s having chemo at the moment. :frowning:

x

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Oh, heck.

That is really very different. Neuro-endocrine tumours are notoriously difficult to diagnose and treat. I know that because a very dear friend of mine had one, and also because my husband had one when he was 39.

My husband’s tumour was diagnosed by his optician at an early stage, he had treatment via his nose to extract the tumour and then he had I think 6 months of radiotherapy to stop it from coming back. My friend, on the other hand, spent some time under the care of a psychiatrist from the age of 18 - 27, because her emotions were so unstable. When the tumour was diagnosed it seemed like a new start for her, she got married, began to travel the world as she had always wanted to do, and began living in one of the biggest cities in the UK.

I was 8 years older than her, and I was so happy she was free of her demons at last. She really was a very gifted writer, and all of us, her family included, thought that at last she would begin to achieve her dream of being a published poet. In writing, that is the hardest thing to do. Poetry isn’t as fashionable as it was in the last century. However, she had an argument with her husband one day, and he walked out. She wasn’t old enough to know that these things happen in marriage, and sometimes you just have to give it time to work itself out. She didn’t tell anyone, for some reason none of us know. She took her own life instead. The loss still hurts all of us. Even my husband, who I hadn’t met by the time she’d married, cried when we went to visit her parents to say how sorry we were.

But all that was around 17 years ago. Since then treatment has improved by leaps and bounds.

Curiously enough, I had surgery on 1st April to extract 2 slipped discs in my neck. I was discharged from hospital on the day of the surgery. The surgeon told me that it would take time for the pain to settle - luckily, he is amongst the best surgeons in the UK - and that for a few weeks after the op it would get worse, which it did. However I am now on the right side of the slope towards getting my pain under control.

I am not an expert, but I have worked in the NHS. The pituitary gland is awesome, but the problem is that it controls all of the major hormones in the body. That’s why a problem there causes problems everywhere - hormones control all bodily functions. That’s the endocrine system.

All I can say is that today is Sunday, the start of a new week. On Monday, armed with all the information you already have, you can start ringing around the organisations that will be able to help, the Brain Tumour Charity, Sue Ryder, MacMillan, Marie Curie. I know MacMillan runs a website where you can find online forums for all sorts of cancers, including the type your husband has. Here’s the link: https://www.macmillan.org.uk/cancer-information-and-support/neuroendocrine-tumours-nets

You can also try Cancer Research UK, which also has forums covering everything, but it’s not as busy as the MacMillan site - people post there all the time.

I hope this helps a little. The one thing I can say about cancer is that, when you are diagnosed with it, it feels like a maze that is impossible to escape from. But there is always someone who has escaped somehow.

The medical profession here in the UK has a massive problem now. One is COVID. The other is the fact that certain diseases when they reach a certain state - in cancer, it’s usually stage 4 - they have to tell the patient and his or her family that the patient has a terminal diagnosis. The simply means that at some point, the patient is expected to die of the condition they are being treated for rather than anything else.

In the case of my husband, he agreed to a DNR 14 days before he died. But your husband isn’t at that point yet. His cancer is being treated aggressively, with everything possible at this stage. In the future there are options like cyber knife surgery and also proton beam therapy, both of which are available on the NHS. There are also new drugs for chemotherapy coming out regularly. There is an organisation in London called The Sarah Cannon Institute, which provides clinical trials that are available to NHS patients if appropriate: https://www.hcahealthcare.co.uk/facilities/sarah-cannon-research-institute

I hope this helps. Otherwise, could you take a selfie of yourself looking really pretty and send it to your husband today? I think that might cheer him up.

Christie xxx

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Hello,
I am going through exactly this for the last 2 years…but most notably now…

My wife had bowel pain that was misdiagnosed for years by the GP and was only diagnosed privately when she collapsed.

Initially we were told it would probably be short-term terminal, but with some excellent medical care we’ve had 2 years of chemo and (incredibly brutal) surgery - she literally spent ages in hospital.

However with very recently discovered extensive Mets in Liver, Lungs & Bones we’ve been told its palliative and a matter of some months left.

We have a young son to whom his mother is his world (well I’m also his world!)

While after 2 years of learning to cope better myself I’m now struggling to work out how to have these conversations with my son, and how we are going to both cope with what’s coming…

That said your husband’s cancer its still being treated actively?
They wouldn’t be doing surgery if there wasn’t a chance of a cure (or at least significantly impacting on prognosis). I also know personally 2 people who’ve had long-term survival from extremely serious cancers (pre Metastatic) - one glastiobloma and one pancreatic cancer.

So while there may come a time when it is truly terminal, that’s not your situation from the reading of it??

Cancer, even brain cancer can have quite long survival from if caught soon enough, although I don’t know much about brain cancers specifically…

Do call on friends and family for support as much as you possibly can, you will need them…
There are also alot of good on-line or phone cancer supported orgs in the UK.

Try to deal with what’s in front of you today…and take care of yourself too…ts all you can do…

best wishes,
M

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Hi Mark,

My husbands symptoms started in his nasal cavity with slight nose bleeds in November, eventually he was referred to ENT for better look at which point the scans showed a large mass which ended up being a neuroendocrine tumour with the primary in his sinus. It took them so long to diagnose (9 weeks from his original biopsy) and if I’m honest I think they thought it was something far less aggressive because of how rare they are and also in this location at his age.

Since November it has spread to the space behind his left eye (he now has no vision there because of the pressure on the optic nerve), throughout his nasal cavity and up through the base of his skull in to the frontal lobe - he had emergency brain surgery to remove the tumour from that area 3 weeks ago but they are unable to operate on the remaining mass because of its size. We also found out that it has metastasised to his neck and one of the vertebrae in his lower back :frowning:. I almost wish we hadn’t asked for his prognosis now but the consultant told us that he is looking at months rather than years and that the cancer is extremely aggressive.

He is having radiotherapy at the moment to shrink the tumour in his head and neck and to relieve him of the symptoms that the tumour is causing. He’s also had chemo and will continue to have chemo after radiotherapy for as long as possible hopefully. We are such a normal family, I just struggle to get my head around what is happening at the moment. Our daughter is obsessed with him and the thought of navigating this for her kills me as I’m sure you know the feeling :frowning:.

He’s been at the hospital as an inpatient for the last 5 weeks but is home now and having his treatment as an outpatient.

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I feel that…

My wife was in hospital for several months during the surgical attempt at a cure phase of things earlier…although her physical and mental condition there was extremely weak…

Now with mets in 3 organs I also pushed the oncologist and his nurse for some idea of how long we have - and was told ‘several months’ - although the literature says 3-5 months on average for her type of case, its really depending on how well the chemo works… either way we will be lucky to make Christmas I think…

I’m dreading what comes next…

Had my son in my arms this afternoon (my wife has been ill in bed for days) and he was quite emotional and needy and finally admitted he was “scared about people dying…”
I knew who he meant…it didn’t need to be said…
He’s heard of Cancer now, and knows many people die of it…

I’m honestly dreading what comes next - both for my wife and my son…

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That sounds pretty harrowing…has it effected his personality at all yet?

One thing we have found is the importance of good pain control…

Bone metastisis pain can be unbelievably bad (far worse than post surgical pain, which can be bad enough), and at one point it left my wife in bed in agony…

Do get a good palliative / pain Dr engaged (I think there is one attached to this hospice that we are about to engage too) - Codene and for nerve pain surprisingly SSRIs can give surprisingly good pain control, but take weeks to take effect… GPs won’t know about any of this, and apparently it needs a specialist to prescribe I think?

I read a bit about the hospice stuff last night to get an idea of it…
…bit of a mistake as its quite emotional reading, but they sound lovely…

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The Palliative team at Southampton hospital have been great with managing pain and getting the drugs protocol right while he was an inpatient, and the consultant is coming over to the house to check up on him tomorrow as well to see how it’s going now that he’s home - Everyone seems really lovely so far.

My husband is focusing on the treatment aspect at the moment rather than the prognosis which I think has helped but honestly, it feels like this thing is ripping through him like a freight train, it’s completely surreal that we are even here - he’s 38 and completely fit and healthy - what a mess.

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Sounds like you’ve got a good setup there, which must be somewhat of a relief…?
I’ve not experienced how the local palliative teams work yet, had their nurse phone last week, and Dr I think shortly…

My wife is 45 and to be going through this with a 5 year old son is not something either of us ever imagined in a zillion years…

The oncologist has told us they will ‘sign-post’ when things get nearer, but my wife is still hoping for a ‘cure’, which sadly is well out of the question now…

I think I get my strength facing the worst at this point (after that for me it looses its power I guess?), although it can be pretty exhausting…
…she gets hers from denying it…

I cannot judge which is right…

And yes, its surreal to be facing this with a partner with children…

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So sorry to hear your son was sad this afternoon, it’s literally heartbreaking isn’t it .

When my husband was in hospital for 5 weeks recently she cried for him a lot and often tells me that she misses the old times - she doesn’t understand cancer, just that her dad is still poorly but home from the hospital now which must mean the Dr’s have made him better. I don’t have the strength to say anything, she’s only 5 and shouldn’t have to be going through this at all, so the longer I can protect her from the hurt is fine by me.

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Hi @Mark-UK,

I’m so sorry about your wife, and your situation with your son. There are books that might help, you should be able to find a list of resources at Cancer Research UK and also McMillan. Often there are specialist nurses attached to cancer units who will help with issues like this.

It’s so hard. Cancer erupts like a volcano, and your whole life and that of your immediate family is turned upside down.

I was diagnosed with late stage ovarian cancer in 2009, after a series of mistakes had been made in the interpretation of 2 MRI scans. The shock of it nearly tore us - me and my husband - apart, initially. The problem then was that I knew that ovarian cancer was called The Silent Killer at the time, he didn’t realise that because the Onco-gynaecologist we saw was, I guess, trying to cover up for his colleagues.

The paradox is that, once we both realised what was going on, my husband took me immediately to the best cancer clinic we could find using the health insurance that came with his work. I think the re-assurance I got there enabled me to survive, because the oncologist we saw initially locally told me to expect a year’s survival before the cancer recurred, and that I had a slim - 25% - chance of surviving for 5 years. This felt brutal when I was in my early 50s.

Is your wife getting chemo or anything else as palliation? As I understand it, the strict definition of a terminal diagnosis is that the patient is expected to die within 6 months, but doctors aren’t God, and it’s a best a medical guess based on the patient’s condition and comparison with other patients with the same extent of illness. My husband was diagnosed with a brain stem glioma and given a terminal diagnosis - he lasted for 2 weeks after that and died at home last September.

Your wife has had excellent treatment, thankfully. Have you a home treatment team in place, or is she still under the care of the team who treated her? Right now, I think you all need help to come to terms with what’s happening and finding the right way to approach the time ahead.

I know I did. My husband walked into the local infirmary in August, and five weeks later he was dead. COVID rules were still in place in most health services. Both of us suffered because of that, however a handful of people went way above their duty to try to help us.

Ages ago, when I worked in the NHS, all these services swung into place. I’m in my 60s now, so that was forty years ago. Most people with cancer - in fact most people with any terminal disease - died in hospital. We tried to manage to call their loved ones and get them in when the time was near, but we didn’t always manage it so often, shortly afterwards, we’d have to take a family to see their loved one, and then sit with them and talk for as long as they needed us too. I only worked in a junior capacity, so usually I wasn’t a part of it.

It’s so different now. I hope your wife will be able to stay where she feels most comfortable, with you and your son in a bubble of 3. I hope that you will find answers to all your questions, with gentleness and compassion.

It’s a very hard time, for a woman to have a terminal illness with a young son and a husband. I really can’t say anything to help you, but for the time I’ve taken to write this message in the
wilderness of cyber space, my thoughts are with you.

Christie xxx

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I’m so sorry at what you re husband and you’re family are going through. I lost my sister in 2020 to a brain tumour she was operated on but never offered chemo it was dreamed pointless.

You’re husband is haveing treatment so that’s hope. Good luck I hope it can be treated.

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Thanks Paula, that’s all I’m focusing on, keep giving him the treatment he needs to keep him with us as long as possible xx

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I researched getting second opinions from other cancer specialists but unfortunately it was too late. It might not be for you’re husband maybe there’s other consultants, other treatments that might help.

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Thanks Christie,
That cant have been easy at all…

We had 2 years of failed GP misdiagnosis (to the extent I am considering taking her GP to the GMC), really awful mistakes and quite condescending comments…

When things deteriorated immediately took her to the best doctors I could find (we have private cover through my work, which has been fanatic, even during COVID - for which I am very grateful), however those 2 prior years of missed early diagnosis would have likely had a very different outcome…oh well…

Has anyone complained to the GP Practice? To the GMC? Any feedback…?

My wife is getting stronger palliative chemo to try to slow tumour advance (which has been shockingly fast recently on the original chemo regime - with Mets suddenly now in 2 more organs…).

The oncologist has been honest however that we are probably looking probably 6-12+ months, depending on how well this chemo works… Its still a heck of a lot better than the “months” we got 2 years ago if the chemo didn’t work…although things are clearly far more advanced at this point, and we’ve already exhausted many treatment options…

If you are talking stats - case-matched 10% of patients survive 12 months with her combination of cancer & mets - mean is <<6 months, but I quite confident we will see Xmas, and there is a chance of longer…its not an exact science…

We’ve not looked into home treatment, what’s that like…?

The home oncology folks were mixed (some great, some so-so), and wouldn’t trust them with doing full chemotherapy at home…or did you mean pain relief like morphine drivers and such somewhere down the line…? (pain is finally now more under control, which is a big relief as it was unbelievably bad earlier…).

So we are probably at the junction between private and public…
(Private does some things well, but is pretty useless at home community care, rehab and I think hospice care…?).

And yes, in an ideal world we’d like the choice between home and hospice end-of-life care, if that’s what you meant - but I assume in this post-COVID environment that’s not really possible…?

One thing that does worry me is clearly many people are deeply in grief many months/years later… and that’s ok… However I’ve had 2 years of grief and I’d like to process things quicker - both for my own sake, and that of my son as well… I am (hoping) that there are a hidden group of folks who’ve managed that also…or am I dreaming and just kidding myself…? lol

PS And to Paula’s other question - I did go out and got other cancer specialists opinions earlier on (which is probably why she is still alive today), but we are at the point that after this chemo fails there is really only 1 mainstream decently effective drug left…

What does one think of clinical trials…?

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Hi @Mark-UK,

As for clinical trials, sometimes people have a great response, sometimes not. It’s something you have to decide for yourself.

Grief is more complex. It often helps to be able to talk to your partner, if that is an option. If you can do that, it can be easier to cope.

Your wife is so young, so is your son.

In some places, e.g. London, private home care is an option, if your insurance ill pay for it. Otherwise it helps to talk to your local hospice as soon as possible. Even before your wife stops treatment, there’s a lot they can do to help.

Christie xxx

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You’re husband is extreamly young if there’s hope in clinical trials and he wants to give it a go then I’d try them.

My sister was offered going into a hospice at the end but she didn’t want to she wanted to die at home surrounded by her husband, kids, parents and me her sister, this, would not have been possible in a hospice due to covid.

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Hi Kelly,

My heart goes out to you, I’m so sorry that you guys are going through this.

I thought I’d chime in with something that has helped me a lot - theres a helpline (0808 801 0688) run by a charity called the Anne Robson Trust. They deal with anything pre-bereavement, when you ring they have some amazing people that talk through anything and everything that comes with finding out that a loved one is terminally ill. If you need some extra support I’d definitely give them a ring - it’s been particularly helpful in those moments where you just need to talk about what you’re thinking and feeling with someone else.

Sending lots of love,
Lois

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