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Life-limiting illness

Shit. DH's cancer has spread.

41 replies

AndNoneForGretchenWieners · 31/12/2017 14:15

Background: DH has smoked for 50 years and had pneumonia 10 years ago. He felt unwell in July this year, the day before we were going on holiday, so he took himself off to the walk in centre which surprised me, he has always minimised any health concerns and has a hospital phobia. He was admitted to hospital immediately with pneumonia for the second time and spent a week in hospital, where he wasn't responding well to treatment and his fever wouldn't reduce.

The hospital sent him for follow up scans after he was discharged, this showed a large mass in his left lung. He saw the smoking cessation nurse before he was discharged from hospital and successfully completed a course of Champix, he hasn't smoked since the day he was admitted in July.

The follow up from the scan results revealed that the mass was cancerous and he had a large tumour that was wrapped round the top of his aorta. Because of the position they couldn't biopsy it easily and the initial results were inconclusive; he ended up having an exploratory op under general anaesthetic where the surgeon went in through his neck and took some samples. When the results came back he was diagnosed with stage 4 non small cell lung cancer, and there was another tumour growing in the bronchioles. He was given the choice of chemo first then removal of the tumour, or going straight for surgery, which was the less risky option. He went for surgery and at the start of this month the lung was removed and the tumours with it. He developed a heart murmur following the surgery and was in intensive care for a week, but was discharged the week before Christmas and is being cared for by me and DS at home.

On Friday we were called in to see the consultant and told that the histology results show that the cancer has spread to the lymph nodes in two places and there is a small window of opportunity for chemo to be successful. The stage 4 cancer was downstaged following surgery and is now classified as N1. He's not fit enough for the chemo yet and there's a chance that by the time he is well enough for it, the window will have closed.

I feel numb. Everyone is devastated and I'm trying so hard to stay positive but inside I'm screaming how unfair it is, we have just got the point where DS is almost an adult and we were looking forward to the child free years we never had before we married (we had DS within a year of getting together). DH is really depressed but won't see his GP because he doesn't want to take any more medication, he's already on 30 pills a day, and says that depression is inevitable with cancer. I have never had any real experience of cancer as nobody in my family has had it. Family friends have died from different types of cancer but they weren't close enough that we saw the reality. MIL died from bowel cancer (on our wedding day) but didn't know she had it until the very end. Nobody we know has had cancer and survived.

Wow this is long. I just don't know what to expect. How will chemo affect him? What do we need to do to prepare? Is there anything I can be doing, buying, reading, to be ready? What happens if he can't have chemo? Any help would be great. We have a Macmillan nurse, and I have been with DH every time he sees a consultant or the surgeon, but the wait to see the oncologist is awful.

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FiveGoMadInDorset · 31/12/2017 14:20

Nothing to add but here for a handhold, DH;s cancer has spread as well and he is now classified as terminal. Its shit isn't it.

Flowers

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CremeFresh · 31/12/2017 14:23

I'm so so sorry , I wish I had the right words to say Flowers

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ladystarkers · 31/12/2017 14:24

I’m so very sorry.

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FiveGoMadInDorset · 31/12/2017 14:28

I take it at the moment his cancer has been handled by surgery and you haven't seen the oncologist yet? I found it useful to right down questions as I thought of them rather than just go and hope that I remembered them. Don't ever be afraid of asking them what you think is the most stupid question, asking them to repeat anything at all. I can't tell you what will happen if he can't have chemo, every person os different.

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annandale · 31/12/2017 14:35

I can recommend the clinical nurse specialists that are often attached to cancer teams, they are often helpful on the emotional side. I would suggest a Maggie's Centre as well if there is one locally.

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halesie · 31/12/2017 15:02

So sorry to hear this OP.

I would suggest finding out about your local hospices too, they are amazing places. We lost my MIL and mum to cancer within a couple of years of each other. They were at opposite ends of the country but both were lucky enough to have support from their local hospices. My MIL went to her local hospice for respite care and community support once a week, though she never stayed there. My mum had an amazing hospice nurse who came to visit her often then mum spent her last couple of weeks at her local hospice. They are absolutely amazing places, so supportive and caring. And at many it's irrelevant whether a cancer is terminal - support is there whatever your prognosis.

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AndNoneForGretchenWieners · 31/12/2017 15:41

fivegomad yes, until now we haven't been referred to oncology, this is the next step and we will get a call on Tuesday with an appointment, which will probably be in the next week. Flowers for you, I'm so sorry you're going through this too.

Thanks everyone. The specialist nurse has been great and has translated the medical terminology for us, I just don't know how much support we can expect - so far she has always been there when we call and has answered questions, I don't want her to become fed up of us though.

I hadn't heard of Maggie's centres, but will see if we have one locally. It's the simple things like not knowing what will happen if DH has to give up work - we did a DWP assessment and he can apply for the mobility aspect of PIP only, as he is OK with self care at the moment, but apart from that all we are eligible for is child benefit, and I have had a promotion which I think will mean that from this month I will lose the CB. He's on SSP only as his company doesn't pay sick pay, he normally works 84 hours a week but has been told he can't do that even if he is in remission, because only having one lung will make it harder.

The whole thing is crap.

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annandale · 31/12/2017 16:18

I don't know what is common to all Maggie's centres but our local one is on the hospital site, has professional benefits advice and lots of other supportive services.

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annandale · 31/12/2017 16:20
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Whinesalot · 31/12/2017 16:24
Flowers
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yorkshireyummymummy · 31/12/2017 16:39

Didn’t want to read and run.
The main thing which jumped out at me from your post is the short window of opportunity. I’m ascertaining that if he doesn’t have the chemo in the window then it’s terminal? (Sorry to be blunt)
If this is the case then I would be pushing like crazy for him to have the chemo, even if he isn’t really well enough for it simply because he has nothing to loose at this stage.
I wish you both all the best and I’m so so sorry 😐.

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Biscusting · 31/12/2017 16:41

Sorry to hear what you are going through. Maggie centres can help advise on money matters as well as provide other support. Do you have any life insurance cover? A lot of those policies can pay out something when diagnosed with a life limiting illness.

My FIL opted for surgery followed by chemotherapy. It was very hard and recovery slow, but recovery happened and we are grateful. Hope there is a positive news for you in the new year.

I wish you and your family all the best.

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Biscusting · 31/12/2017 16:44

Yorkshire please remember that Chemo is very toxic and can be fatal. There is a very very good reason that the Drs want to wait.

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AndNoneForGretchenWieners · 31/12/2017 16:45

annandale thanks, our closest one appears to be Northampton (about 40 miles away). I might make contact through their website though

yorkshire I'm assuming so, although we haven't been told in as many words. I think we will know more when we see the oncologist, the consultant we saw on Friday said she didn't want to talk about things she wasn't an expert in, and so could only recommend we wait til we have the referral. He is determined to fight this, but I'm not sure of our rights if the oncologist says that chemo isn't possible.

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AndNoneForGretchenWieners · 31/12/2017 16:50

biscusting love the username! I think we have a policy that we took out with the mortgage, but it was so long ago that I can't remember. We will need to look through our paperwork.

It's good news about your FIL. I hope that DH has the same outcome, because (and I know this sounds selfish) I can't bear to think about the alternative.

He has planned his funeral, even bought me a dress to wear to it, and told me where he wants his ashes scattered. This was before the last surgery, and we were both really optimistic that the tumour being removed would get rid of the cancer completely. Seems naive now.

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BumbleNova · 31/12/2017 16:54

Where is your DH being treated OP? "Terminal" doesn't necessarily mean there is nothing they can do. My mum was diagnosed as terminal in August and she is being treated by the royal Marsden who are so wonderful. Even if you have run out of road, there may be clinical trials that your DH may be eligible for. We went for a second opinion to the Royal Marsden and the difference in approach versus where she was being treated is extraordinary. I know you are in shock. It's early days in terms of determining next steps. Hang in there.

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AndNoneForGretchenWieners · 31/12/2017 17:07

It's a large teaching hospital in the Midlands. I don't want to be more specific as I haven't name changed. My friend recommended seeing if we could be referred to the Royal Marsden but given we are 100 miles from London I don't know how possible or practical it would be.

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BumbleNova · 31/12/2017 18:17

It's entirely your decision. Access to clinical trials was a major reasons we elected to go with them and staff have gone above and beyond to care for my mum. I'm sure your DH is also in excellent hands.

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Kernowgal · 31/12/2017 18:28

Gretchen I'm really sorry to hear this.

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LadyLapsang · 31/12/2017 18:37

OP, nothing useful to add but I just wanted to send you my thoughts and good wishes for your DH. I remember your great name from a previous post and thought at the time that we may work in a related area.
Flowers

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Myzyllfta · 31/12/2017 18:39

I’m so sorry to hear this. My DH also has cancer which has spread. My advice to you is to

A) identify the oncologist you want him to be under, look for ones who specialise in the area and who have a long track record of working in the area. If you can find a professor who is also involved in research and trials all the better. Contact them via their secretary, even their private secretary and explain that you want them to see him ASAP. Do not, at this point agree to see a registrar. You need some one who has been there, done that and is absolutely up to speed on latest developments

B) get copies of all his scans to date, consultants may ask you for them

C) research all current treatments including options such as immunotherapy and trials. Know exactly where they are happening and have them on the back burner

D) question and challenge the doctors and ask as many questions as you can

E) seriously consider the Marsden if appropriate. Don’t close off any avenues due to distance

My DH has a very rare cancer. I was not happy with the first consultant we saw, I didn’t feel he had the knowledge or experience to treat my DH and I wasn’t prepared for him to be a guinea pig. I have now got him under 3 professors who are at the forefront of his condition including one at the Marsden. They are treating him with a completely different and radical regime to the ones we were originally given. I have no idea of there will be a positive outcome but I know he’s in the best hand. I also have a full list of all trials, I’ve told the consultant we would consider them if and when appropriate and I have trials in the US and Europe on my radar too.

I asked the original consultant about certain therapies I had read about and he hadn’t a clue yet they were the first thing the professor suggested. We are private but if you push and make it your business to do the research I’m sure you can do similar on the NHS.

Good luck op. It’s the shittest thing ever but have a plan and then it’s a bit more manageable, the waiting is utterly horrific

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84CharingCrossRoad · 31/12/2017 18:48

My DP is in the local hospice now. He has terminal cancer and we dont know if he will come home again. Seconding suggestions to contact the local hospice. We have had excellent support from ours.

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AndNoneForGretchenWieners · 31/12/2017 21:59

Thanks everyone. I do appreciate your advice, it's really good to know what to expect and what to ask.

lady i wonder if we know each other irl.

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yawning801 · 31/12/2017 22:04

I'm so sorry OP. Flowers

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LadyLapsang · 01/01/2018 12:50

Gretchen, I think we might.

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