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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

Dp has tumors in lungs and bones

34 replies

blamethecat · 31/08/2015 20:28

He is 35, we are getting results from biopsy Thursday. We have 2yo ds. It seems very unlikely that anything significant can be done for him. How do we manage? Practically and financially we will really struggle, no insurance, no savings, I don't drive. I won't get paid time off work. Not sure about do work, he hasn't told them as it is pretty sudden and unexpected following a referral after an eye test.

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Twolefttoes · 31/08/2015 20:34

I am so sorry about your dp, you must be reeling. Do you have a local citizens advice centre? I found them very useful when my dp was ill and unable to work.

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thesandwich · 31/08/2015 20:39

So very sorry. Macmillan offer great support for the practical,medical and emotional- give them a call. Have a look at the tamoxifen thread- loads of supportive people with plenty of experience of everything cancer related. So so sorry.

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PausingFlatly · 31/08/2015 20:44

What awful news. I'm so sorry.

On the practical side, do talk to his work in case they have anything useful. I'm very sorry to mention it, but some employers have "death in service" insurance for employees.

Also, apply for PIP (DLA as was) immediately, and if his doctors advise, fill in the "special rules" section.

Macmillan Cancer Fund should be able to help with the forms and advise further about financial stuff.

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unweavedrainbow · 31/08/2015 20:46

www.mariecurie.org.uk/help/money/benefits-entitlements/living-with-terminal-illness/special-rules

PIP special rules. So so sorry

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blamethecat · 02/09/2015 20:36

Things are still up in the air, no contact about results so I don't think we will know what is happening tomorrow. He is back at hospital for a lumbar puncture tomorrow to see if the intracranial pressure is up again. I guess we will ask then when we will hear from oncology. We just need answers so we can try to make plans.

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PausingFlatly · 02/09/2015 22:50

Yes, some rather grim planning to be done. If you're not married, you're not next of kin, which may make various things harder.

Wishing you lots of strength for tomorrow.

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PausingFlatly · 04/09/2015 10:54

Hey there. Just to say thinking of you.

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blamethecat · 05/09/2015 19:41

Things are really confused, the consultants met Thursday then he saw ent Friday who said they are not sure the lung tumors are malignant. A biopsy of the growth behind his ear has been taken to see if that clarifies the situation.

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PausingFlatly · 05/09/2015 19:46

Gosh, you must be all over the place emotionally with that. Will have fingers crossed for positive news.

How are you both holding up with the practical stuff? Are you managing to eat, sleep a bit?

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blamethecat · 05/09/2015 19:51

Doing better than we were, do has put some weight on which is good, both sleeping ok. Tbh I think we are probably not dealing with it as we don't know what we are dealing with! He is off work for another week but I have to keep working to earn money, no sick pay (apart from ssp) and used or booked most my holiday. I think normality is best until we know more.

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PausingFlatly · 06/09/2015 00:07

Normality sounds good.

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blamethecat · 15/09/2015 14:21

So he finally has an appointment with oncology, but the doctor the appointment is with doesn't specialise in lung cancer or bone cancer according to the hospital website, there are several lung specialists and I think one for bones. Don't know what to think now but I suppose we will know more tomorrow.

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GudrunBrangwen · 15/09/2015 14:30

Gosh what a dreadful shock. I'm so sorry to read this.
When you say the referral came after an eye test - do you know what it was that made the optician refer your DP?

I hope you have some answers soon

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blamethecat · 15/09/2015 15:48

He had swollen discs and a field defect ( I work in the Opticians so was scared right away).
He had a lumbar puncture while in hospital and the pressure was 37, then another just over a week later and it was down to 27, which is still high but better.

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GudrunBrangwen · 15/09/2015 16:12

Oh I see. Yes, I can see why you were frightened by that. I hope that they are able to tell you it isn't as bad as you think.

It's good that the pressure has come down a little.

Keep posting; we are here, I'll check in whenever I'm around.

All fingers and toes crossed for you tomorrow xx

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blamethecat · 16/09/2015 19:59

We finally have a diagnosis, germ cell tumor. In his lungs and bones, 50% chance of curing it, which is crap but significantly better than we thought. He is going to Nottingham tomorrow to start chemotherapy.

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eyestightshut · 16/09/2015 20:10

If you're coming up to Nottingham it's likely to be for a new patient interview where you find out about the specifics of chemo. There is a Macmillan cancer information centre near the oncology outpatients and there is also the very fabulous Maggie's centre where you can get a cup of tea and lots of support - they have a designated benefits advisor who will be able to help you access anything you might be entitled to, and there's always someone available to lend an ear. Hope it all goes ok x

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PausingFlatly · 16/09/2015 20:29

Good luck for tomorrow's trip. Hope the support centre proves useful, too.

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blamethecat · 16/09/2015 20:51

He is being admitted, so will be starting treatment (nurse and consultant told us), nurse today told us he is unlikely to get benefits, thankfully his work are doing 3/12 full pay while sick. After that we don't know but will cross that bridge then. Unfortunately I won't be going with him as I can't afford time off. His parents will be with him and I will visit at the weekend.

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GudrunBrangwen · 17/09/2015 07:30

I'm very sorry to hear about the diagnosis, but glad the prognosis is better than you had thought. Also glad your dH's parents will be able to stay with him.

Let us know how you get on, it's good to be starting treatment immediately.

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sandgrown · 17/09/2015 07:42

Just thinking of you. Do you have any critical illness cover? Apply for at benefit you can .Get some advice from charity or CAB. If PIP refused appeal the decision straight away.Good Luck to you both

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patterkiller · 17/09/2015 07:51

Thinking of you and your DH. Keep posting when you need. It will be a very stressful time for you but he is in the very best place.

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ajandjjmum · 17/09/2015 08:03

What a stressful situation for you - hope the treatment is helpful for your DP.

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PausingFlatly · 17/09/2015 08:36

He won't be eligible for ESA (income replacement) if he's still receiving sick pay from his employer.

But he may well be eligible for PIP (help towards additional costs eg transport, personal care, buying special equipment) which is not means-tested.

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Wolpertinger · 17/09/2015 09:11

Hi - 50% chance is a lot better than you were expecting, thinking of you both. However the treatment is v tough.

It would be worth you checking what you are entitled to - benefits is a v complex area so most nurses won't advise on it. If he is at a big cancer centre they will prob have a Macmillan Information or Benefits Advisor you can ask - but likely only Mon-Fri.

Can you speak to your work about what is going on and have some time off? Or at least be able to get to his consultant appointments? Most GPs would happily sign you off for a bit yourself given the stress you are under.