how the heck do I support DH tomorrow if the consultant tells him he has cancer?

[MrsShrek3]

sigh. just that. DH has Big lump in neck. Various doctors, registrars and pathologists looking very worried and saying he "should have been told more". Appointment with his own consultant tomorrow afternoon. Worried sick, but wtf do I do to help him? He doesn't want me to go with him, he;d rather I keep the children with me.

Wishing you both all the best for tomorrow. Fingers crossed that it goes as smoothly as possible. Will be thinking about you. Look after yourself too Mrs Shrek x

Good luck Mr and Mrs Shrek, fingers crossed

Hello. How did it go? Are you ok?

Hope everything went well today.x

I am delurking too Mrs Shrek and thinking of you both today xx

best wishes

Hope today went as well as these things can go.

Is there talk of your DH having surgery after the lump is shrunk by chemo? Or has the phrase 'neoadjuvant chemo' been mentioned?
I am not a specialist (humble GP here), but my experience of NHL is that people tend to have a rough few months, sometimes a year, but ultimately do very well.

I wish you and MrShrek a restful night.

wishing you both all the best xxxx

massive big thank you to all for the good wishes. After a verrrrrryy strange day and him having a reaction to the antibody, it went ok - if slowly. Took from 10.30-7pm. He's fine atm,fingers crossed he will continue to be, relatively :)
PD, no mention of neoadjuvenant chemo (g'on, you gotta explain it now ), I had wondered if surgery would follow too. Only poss of radiotherapy if 6 cycles of R-CHOP chemo doesn't finish it off has been mentioned. Am but we'll have to figure it out as we go along as no crystal balls available here

Can I offer you some advice about dealing with chemo-induced sore mouth?
Don't use Corsodyl -it's far too strong.
Ask for Mu-Guard. Caphosol and Gel-clair are good too.
Please don't worry about having neo-adjuvant chemo before surgery. This won't be an indicator of a poorer prognosis. It will be to make the surgery less complicated.
Ask for nausea meds at the first sign of nausea. Don't wait.
The treatment time will probably seem to be stretching out in front of your DH at the moment, but it will hopefully go by much more quickly than you expect.
There are lots of supplements which might help and definitely won't hurt. You will meet lots of interesting people at the hospital.............!
Just avoid anyone who's sitting around complaining about their long wait for their prescription etc........Energy sapping.
Feel free to tell anyone wittering on about positive thinking to buzz off if DH's not in the mood.
If he wants to do lots of research -great. If he just doesn't want to think about the cancer and leave it all up to the medics - also great.
Best of luck. Roll on NEXT year!

Thanks choco, all tips very welcome! I'm going to write that lot down! Stuff we never knew existed is happening and it's great to have tips from folks in the know!

His appointments at the hospital will probably take longer than you expect. By the time he's had his blood tests, they've got the results, made his prescription, got his prescription to the relevant place........... If your DH can use the time to rest or at least not expect everything to run like clockwork that will probably help with the hospital stuff.

My mum found acupuncture was very helpful when she was going through her chemo - for energy levels and (I think) it also helped with the nausea.

Good luck to MrShrek, as well as to you.

Ah, found the thread. Was wondering how you/DH were doing!

Mixed news then - but hopeful overall, that's good.

Hope he copes ok with the chemo - make him rest as much as he can, it really takes it out of people and he'll need to conserve his energy.

((((hugs)))) - praying and crossing everything that he'll be fixed soon. xx

MrsShrek, your NN made me . You are me last year.

My DH was Diagnosed with Hodgkins Lymphoma early last year. Like your DH, he had it in his neck, but also had a large tumour in his chest. He had two rounds Of B-COP chemo, them two rounds of CHOP and finally radiotherapy over 6 weeks. After the first round, he lost all of his hair. He was on the large size anyway, but the steroids made him put on weight and his skin went a nasty grey/-green colour, so looked pretty much like Shrek for the duration of his treatment and that is what the DD's insisted on calling him!

He actually coped with the chemo very well. apart from being tired, he lost the feeling in the end of his fingers and was quite aggressive when he was taking the massive doses of steroids (not like him at all). Other than that, he didn't have many side effects.

A couple of bits of advice from me; firstly, if the anti-emetics don't work, ask them for different ones. They prescribe the cheapest ones first.

Ask your hospital contact about parking permits. You will be spending a lot of time at the hospital and our hospital gave us a season ticket so we only had to pay for the first hour of parking on each visit.

In between visits, keep a notepad to write any questions down. When you get to see your consultant you have so many things to ask, you don't always remember everything.

After DH had his first couple of rounds, his skin got very dry and thin. We had to go out and buy soft track suit bottoms for him to wear during the long hours of treatment.

Finally, we had so many different drugs to take at home, that we had to do a spreadsheet!

Sorry, that was a bit of an essay! Feel free to PM if you have any questions you think I can help with. Good luck x

thinking of you and your dh, op xx

hey, op
hope you're all ok-ish

Hi, MrsShrek, hope today was a good'un.

I really hold no superior knowledge , some of the posters on here who have been through similar will be a better source of information then I can be, I'm afraid.

'Neoadjuvant' means chemo before further treatment, for instance to shrink a tumour and make surgical resection easier or even possible in the first place.

I totally agree with keeping a dedicated notebook/diary in which you and MrShrek write any questions/queries as they occur to you. Equally, write answers down, particularly if at all complex.
Lots of studies have shown that people retain at most about 20% of what has been said right after they have heard the word 'cancer' . That gets better as you get used to the diagnosis and you get your head around the new (and hopefully temporary) normality of hospital visits/meds/chemo.

Frankly, I am taking notes regarding the mouthwash tips; I don't disagree about the anti-sickness meds, however in defense of our glorious NHS I feel compelled to say that I think it is right to start with simple (and yes, cheaper) measures before moving on to bigger guns if they don't work. That is NOT to say your DH should not be assertive (or you for him if he feels rubbish) to get his needs across.

Whether you want to or not, soon you and he are going to be Expert Patients in his condition. Consider this whole thing a marathon, not a sprint, so both of you pace yourselves and, crucially important, look after yourselves. Remember to eat (when able) and drink and rest/sleep. Take up (and initiate) any offer of help. Most people are delighted to support somebody in your situation (I am sure there is an element of superstition to that - "If I make the Shreks a casserole for dinner, maybe this particular chalice will pass me by" ).

Wishing you all the best. I don't really have any experience or advice but with regards to anti sickness meds then ondansetron is the absolute nuts but it is very expensive so not sure how quickly they will be willing to prescribe it.

Cyclosene is also an effective anti-sicky.

ondansetron (as hydrochloride) 4 mg, net price 30-tab pack = £63.06; 8 mg, 10-tab pack = £47.18 Ondansetron cost

scored, cyclizine hydrochloride 50 mg, net price 100-tab pack = £8.13. Label: 2 Cyclizine cost

Easy to see the difference... IME, Ondansetron is being prescribed very widely for people who suffer nausea/vomiting with their chemo. Best to wait and see, and keep communicating with the people looking after you. Usually you get a phone number for a Specialist Oncology Nurse for quick advice/help if you run into problems.

I had bad nausea and sickness last year (the dreaded 'dry boak') with r/t and I struggled to eat anything due to mouth ulcers etc caused by location of r/t. I found crystallised ginger helped the nausea, if your DH can nibble some of that. Also, the only liquid I could stomach was flat Diet Coke, so if your DH is finding keeping his fluid intake up is tricky, experiment with things that seem unlikely.

Do please look after yourself too. Rest when you need to, ask for help when you need to, go for convenience foods when you need to. People are usually only too happy to help and sometimes you need to ask for that help - don't be shy.

You sound like a fabulously supportive DW and I know your DH will value all that you do. It's a joint journey (forgive the X Factoresque imagery!). Good luck x

Second the flat coke idea and ice lollies or ice cubes.

Actually, flat ginger ale might be better - you can flatten it easily enough by adding a bit of water to it, knocks the carbonation straight out and is less messy than shaking.

Had to at a couple of things - great minds and all that, I've already done a spreadsheet of meds and it's stuck on the fridge door!!

Impressively, he's been given andansetron. Am like at the price of it. He's still doing fine. Am crossing everything that it stays this way for a bit longer he's more grumpy than usual but we don't mind. He's feeling slightly nauseous ad tired but nothing he cant deal with. One of the nurses has already told him he'd better not complain about nausea and tiredness to a wife who's had three babies (he could, and we wouldn't mind that either lol) it appears the side effects are dealt with well round these parts. Am suitably impressed with the hosp and nhs already, but now even more so.