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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Life-limiting illness

How do I support DH through the next 3 weeks?

29 replies

Mrsfrumble · 22/01/2015 03:57

Background: 5 years ago DH was diagnosed with testicular cancer. He had an orchidectomy, went under observation and all was well. A year later he started having chest pains and a CT scan revealed an enlarged lymph node in his chest, related to the first cancer. Three rounds of chemo later the cancer was gone. He's been under observation since, and had a routine blood test yesterday. This evening he had a call from his oncologist to say that one of the tumor markers is slightly elevated; her advice was not to panic and she would retest in 3 weeks.

How do we not panic, given his history? What can I say or do to help him? Both times previously there was no "wait and see"; he was diagnosed and treated straight away so despite me being generally an anxious type and a bit useless I could look after him practically when he was sore from surgery and sick from chemo. I need some advice on how not to dwell on what could turn out to be nothing, how not to be snappy and distracted with our 2 very small children.

We live abroad so no family or close friends nearby. I doubt we'll tell our families for now so as not to worry them. DH works long hours and is a man of few words so I don't have anyone to talk to in real life.

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JontyDoggle37 · 22/01/2015 04:06

Why not just ask him what would help him the most for the next three weeks? I.e. Does he just want to ignore it, does he want to organise some fun stuff to take his mind off it, does he want extra hugs, etc etc. I know you say he's a man of few words, so suggest you don't make a big deal of it, but maybe when you both go to bed and the kids aren't around, just give him a massive kiss and hug and say 'I just wanted to check how you want to handle this three week wait, I want to support you as best I can but I'm not sure what to do'. Be honest and be clear you love him and are there for him. It's the best anyone can offer. Wishing you both all the best.

Itsallabout · 22/01/2015 04:12

Hi Mrsf
It is so hard when you find yourself in a situation like this. The waiting seems overwhelming and cruel but I suppose it is a wait and see from Onc as the markers may elevate over time giving a clearer indication of what is happening.
To be honest, I think all you can do is sit tight and carry on the best you can. Try to keep busy and of course it is absolutely normal to feel panick rising, frustration and a bit useless whilst you wait. I understand the need for immediate answers so you can at least either carry on as normal or make a plan about treatment if you need to.

I think in these situations we have to see positives and the positive in this is that the Onc team are happy to wait for 3 weeks and they are not saying there is a def malignacy.
I too am overseas so if you need to talk then please pm me. I have been through cancer myself so understand how you are feeling. A very big hug to you ( I dont care about how it is very unmumsnetty it might me)

Itsallabout · 22/01/2015 04:14

Be not me.

Mrsfrumble · 22/01/2015 16:02

Thanks Jonty and Itsallabout for your thoughtful replies. Apparently the tumor marker was only slightly elevated, "within tolerance levels" no may be caused by something else entirely. So the Keep Calm and Carry On approach is obviously the most sensible. I have plenty to distract me with two toddlers but every so often I'll remember and my stomach will clench with dread.

Yesterday morning we were talking about how DH had only one year of observation to go before being the all clear, and now this....

DH seems calm, so I'm going to take my cues from him and try and keep things running smoothly at home so he has no additional stress.

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Mrsfrumble · 09/02/2015 05:02

So, DH had the blood test on Friday, and should get the results tomorrow. I can tell he's terrified. So am I. So much is at stake; if the cancer is back we may not be able to stay here as I don't think our health insurance will cover the treatment. We don't have anywhere to go back to in the UK either... We were renting before we left. We couldn't go to my Inlaws as my FIL is being treated for lymphoma, or my parents as my dad is being assessed for dementia (which I haven't told DH about as I don't want to add to his misery).

I need to go to bed now. I'm exhausted but God knows how I'll sleep.

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ldt87 · 09/02/2015 05:18

Good luck with his results xx

rootypig · 09/02/2015 05:23

Mrsf, so sorry to hear this. You're in the US, aren't you? The heath insurance question is such an enormous extra stress, always at the worst possible time.

Have you got someone you can talk to on the phone about things, if none near by? a good friend or family back home? I know how hard it is being overseas, with the best will in the world, it's isolating. You lose track of people's day to day lives, and then when you need support it seems impossible to explain how you feel. You are a lovely partner to keep things as smooth as possible for DH but please don't forget yourself in all this....

I have my fingers crossed that the results are good.

Mrsfrumble · 09/02/2015 15:03

Thanks ldt and rootypig. Yes, we're in the US. It's nearly 9 am here. DH has gone off to work with the promise to call as soon as he hears anything. The children are watching some film about a frog on Netflix and I'm pacing around the house feeling slightly sick.

You're right about the isolation rooty. I was close to my family before the move but contact with my brothers has been quite superficial since, and I don't tell my mum anything negative about our lives here as she'll worry herself to death given the chance. I'm closer to my Inlaws but as DH hasn't told them what's happening I feel like it's not my place to do so.

Fucking cancer.

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waitingowaiting · 09/02/2015 15:13

OK - blood Friday, results tomorrow, testing in 3 weeks time...

You've been through this film before - if they suspect it is cancer they would have hauled him back pronto. My dad was hauled back to the doctors in the afternoon of having a routine blood test in the morning - in fact the doctor came around to the house, found him out and left a note to call her. They don't hang around!

Keep busy, keep optimistic. Eat, sleep and exercise well.

Mrsfrumble · 09/02/2015 15:38

We're expecting the results today - when I wrote the 5 am post it was still yesterday here - but I see your point waiting. Both times previously we were amazed at how fast the NHS can move when it needs to. Ultrasounds, CT scans, surgery slots and consultant appointments were magically available at very short notice, so we were spared the horror of waiting for bad news. And you would hope things would be even more efficient here, given how expensive it is....

I'm also taking comfort from the marker being only slightly elevated. So if the cancer is back, it must be very early stages right? DH has no lumps or aches and pains like before.

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bullseyebraces · 09/02/2015 15:40

I hope you hear good news soon.

rootypig · 09/02/2015 20:09

Yes, please take comfort from the fact that he has been monitored, and that if anything is amiss, it is being caught early.

Hopefully it's the "something else entirely".

I'm surprised it's not faster than the NHS (never used the healthcare system here, but had heard that's about the only benefit, if you're covered).

Mrsfrumble · 09/02/2015 20:48

Right results are in... Marker (AFP) level is lower than 3 weeks ago, but still slightly elevated. They want him to have a CT scan this week. He's only spoken to a nurse, but I've instructed him to try and get hold of the oncologist and ask her what she thinks might be going on. I'm really hoping the scans are a precautionary measure and we can take comfort from the fact the level is falling.

We're flying back to the UK for a fortnight this weekend, so the timing really sucks. I hope we can have some answers by then.

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rootypig · 09/02/2015 22:46

How frustrating that it's not an answer one way or another.

CT scan of what? (sorry if being thick). Have looked up orchidectomy - so am wondering where they think the cancer would reoccur?

The timing is so frustrating. I hope you can fit in the necessary tests before you leave. Will they be able to give you the results over the phone, while you're away?

Mrsfrumble · 09/02/2015 23:00

The scan will probably be to look at the lymph nodes in his abdomen, which is where the cancer is most likely to reoccur. I'm confident that his remaining testicle is fine as he checks it religiously!

I'm really hoping he can be scanned tomorrow or Wednesday, then we may have some answers before we go away. If not I'm sure they will call us in the UK.

I'm about to take my poor neglected children out for a walk in the unseasonable sunshine we're enjoying here.

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waitingowaiting · 09/02/2015 23:04

There are probably heaps of reasons for the elevation. They do need to be cautious with his history. If it was bad, they'd've shocked him in prontopronto - they don't hang around. You know that they always start with the worst case scenario and work backwards.

Hope he is seen soonest and your minds are put at rest.

Mrsfrumble · 10/02/2015 16:17

Right, scan is booked for 7 am tomorrow (because missing work does. Not. Happen. Even in a crisis). So hopefully we might hear the results before we leave on Saturday.

I'm less worried now than I was. I don't know whether I've just run out of adrenaline or what, but I'm in a calmer, more accepting-of-fate place than I was yesterday. Which is a good thing, considering how much cleaning and packing I have to do over the next few days!

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rootypig · 10/02/2015 17:14

God US work culture. Terrifying.

I think you're probably processed this initial part of what's happening - it's a new version of the world to live in, isn't it. How is DH? Do you know how long scan results take?

Mrsfrumble · 11/02/2015 20:11

The fear is back today. Yesterday the sun was shining and I felt all optimistic. Today it's cold and grey and I'm back on the sofa, biting my nails and thinking "what if..."

I don't know when we can expect the results from this morning's scan. The oncologist knows we're flying away on Saturday so hopefully she'll take pity on us and hurry things along. Yesterday DH got a letter from the lab. I was desperate for him to open it as I thought it would be a copy of the results from his blood test, and I could have a sneaky peak at Dr Google to check what a "tolerable level" of AFP actually means. It turned out to be a bill .

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rootypig · 12/02/2015 03:55

Oh, lovely! yes I'm sure the bills come quickly.

Ring tomorrow and see what can be done?

saffronwblue · 12/02/2015 04:04

Good luck mrsf. It must be very hard being caught between not wanting to worry family, the pressures of work, wrangling toddlers and the awful waiting. Thinking of you.

Mrsfrumble · 12/02/2015 05:26

Thanks saffron and rooty.

The scan technicians told DH that the results could be ready as soon as this evening, so we could possible hear tomorrow morning (still Wednesday here in the central US). DD and have a regular Thursday morning play date while DS is at preschool, and I'm wondering whether to go or not; on the plus side, it will be a wonderful distraction for me. On the negative, the potential awkwardness of having to take the call then make my excuses if the news is bad. Hmm.

I don't think I'll ever get used to the medical bills. After nearly 2 years in the US DH and I are firmly of the conviction that we'd rather pay masses of tax and have "free" healthcare like in the UK than endure the system here.

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rootypig · 12/02/2015 05:29

The ridiculous thing is, tax rates here (California) are comparable to the UK. You just don't get any f*ing healthcare for it.

Can you say in advance re playdate that you're expecting some news, and may have to leave? then you won't have to say much once the call comes, either way. I really hope that it's good and reassuring news

Mrsfrumble · 12/02/2015 15:24

CT scan was clear. So we don't know what's causing the raised marker, but at least it's not a tumor.

I'm having a few minutes of light-headed relief before we head off for our play date.

Thanks everyone who posted. Mumsnetters are the bees knees in times of crisis

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waitingowaiting · 12/02/2015 17:20

Good-o. So that's one possibity crossed off the list. They tend to start with the wort case scenario and work backwards to ingrowing toenail.

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