Seasoned carer back on the cancer journey

Hiya everyone, my names Emma, 39, and I've been the carer for my partner since his first diagnosis of a rare head and neck cancer in 2008 that caused him a lot of long term chronic issues.

this Tuesday a CT scan showed up a 7cm tumour in the centre of his lung, a mass in the centre of his chest and 'something that looks like it's spread' on his T1 spine.

it's not been formally diagnosed, we are in the horrific waiting period, but there's more chance of it being cancer again than not. And this time as to where it's spread, it looks like a rapid moving one?

im currently at a loss. I've been doing this for a long time but it feels brand new and almost harder for me to manage? Does that make sense to anyone? 

he has a clinic appointment on the 13th March that they won't bring forward even though he is seriously symptomatic with breathlessness and severe pain in his chest and back?? 
 

anyone else experienced this? I'm worried it's spreading and he's already on slow release morphine and oromorph. Should I push harder to be seen sooner and if so, how? So far I've called the consultants receptionist who refused to bring it forward and the gp says she can't do anything?

we've still got to go through biopsies and further scans to actually diagnose this so I want the chest clinic assessment to be done asap.... I suppose I'm panicking and not sleeping and just want this horrible 'hang around part until someone decides it's serious' to be over. :(

  • Hello Emma and thank you for posting.

    I'm sorry that you and your partner are going through this.

    It's difficult to know exactly what may be going on at this stage, and only the tests will confirm the spread (metastases) or the speed (grade) but I can of course understand your distress.

    In the meantime I would urge you to contact his hospital team again about his pains. I wonder if he has a previous specialist nurse (CNS) who could push for help with his symptom management while waiting for the scans. It may be that for the moment his pain medication needs to be increased to get him more comfortable.  If his pain or breathlessness increases or you become more concerned, do call 111 to ask for advice.

    I've posted here some pages from our website which may be useful to you. This first one is about coping with cancer in general and all it affects.

    These next two links are specifically about support for you and this one from macmillan.

    Reposting something in the 'caring for someone with cancer' section of the forum may also give you other peoples experiences who are going through similar. 

    Take care Emma and I hope you have some sort of support network to help you both through this. Waiting for appointments and scans, particularly second time around and with your partner so symptomatic, must be so hard. I really hope he gets more comfortable and you both get the answers you need soon.

    If you want to call to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Sarah

  • Thank you so much for this.  Ive been meaning to reply all weekend, but its been a really rough couple of days. He is still under an endocrine consultant at the Christie's and has a really good relationship with her so ive organised a telephone appointment for advice today (Monday).  I'm really hoping there will be some minor miracle that she'll agree to see him in person and have him admitted there, though i know this is very wishful thinking.  This lump under his ear is visibly big now and he's dripping with sweat in the evenings so its obviously getting worse.  I'm just praying its not spreading rapidly whilst we're waiting.  That's the ultimate fear Because his symptoms are almost doubling and intensifying daily.... 

    luckily we both have lovely friends and family that are supporting us emotionally but the go doesn't really know what to do but tell us to wait for the chest clinic.  Shes already put him on oramorph, 10mg slow release morphine (which i think isn't working at that dose) and paracetamol. Fingers crossed with the Christie telephone appointment today.... Thank you again for your support, it was really helpful x