It's just got very difficult. I don't know what to think ...

[Deb1801]

It's just got very difficult. I don't know what to think ...

I know how incredibly lucky we have been and never thought we would ever get this far however the last six weeks have been so hard. Things have changed, my husband has deteriorated so much but I still have HOPE.

My husband now 59 was diagnosed with small cell lung cancer 3 years and eight months ago he has defied all odds to still be here and his oncologist says he is a super responder and quite remarkable - so yes I accept how incredibly fortunate we all are, family and friends to have had this time where for most of it he has been relatively well surviving 2 rounds of 6 cycles of chemo and radiation.

But. This third round of chemo has changed things considerably, he had only managed 1 cycle and out of the last 6 weeks has spent 2 of them in separate occasions in hospital with infection and low sodium. He has had this before and I recognise the signs of the low sodium, first time I thought he had had a stroke.

All this is new now though. Will he pick up and be able to have more chemo ? Without anymore they give him only 6 months max, although my hubby is a stubborn (swear word) and wants to see his 60th in November and have a big party - they originally gave him a prognosis of 10 months and look how long he has had !

It's just so hard. Don't know what to think or feel. Trying to keep working, our son is only 13 and taking his options, which also bothers my hubby , our baby still needs that extra support ! MacMillan nurses coming to assess him on Friday. I hate cancer - the uncertainty of what's really happening is so confusing .

Feel like I am rambling now but to anyone who reads this thank you. This is a horrid battle for our loved ones fighting and to all the family and close friends experiencing it along side them. But I do still have faith and hope.

Much love x

[LorraineD Partner Roy Castle]

Deb

Your dilemmas are shared by so many here. Lung cancer is unfair. Your husband has had a good response to treatment but it hasn't been easy and just now feels even tougher. It is natural that you and your hubby understandably want more time for birthdays, to see your son through school and into adult life.

It might be useful to talk to the MacMillan Nurse about your priorities and make sure you as a family are getting all the support you need. Do you have time planned to see your hubbie's oncologist? It might be worth discussing what improvements you can expect and what future treatments might be appropriate, including any relevant clinical trials or new treatments available for compassionate use that might be relevant to you.

Exploring your options doesn't make the uncertainty go away but it gives you a few more ideas on how to deal with it. Keeping up your hopefulness is working for you, but do look after yourself in all this.

If you want to talk through any questions or worries please do call our helpline on 0800 358 7200,

Lorraine @Roy Castle Lung Cancer Foundation

[JanetteR57]

Sorry to read of your hubbies' battle and his tenacity so far. It's so unfair on him and all of you. He's done really well so far - have you spoken to his oncologist to see if it's the current combination of chemo he's reacting to and whether there is another option for the chemo? Low sodium causes confusion and with my dear friend, they also thought he'd had a stroke, urinary infection or dehydration before they finally determined it was lung cancer. Infections can lay us low particularly when our immune systems are low from the cancer treatments. Hope you can hang on in there for him and your family and as Lorraine suggests, speak to a Macmillan nurse for yourself…. good luck to you all and hope he starts responding better soon. take care.