Yes I know I am probably spelling the metastatic word wrong somewhere but anyway - hubby, 71 years old, was diagnosed with lung cancer that had spread to his brain and a couple of small lesions elsewhere in the body. He collapsed in October 2020 and was taken to Charing Cross Hospital in Hammersmith, as the initial collapse displayed neurological symptoms and that is their speciality.
The MRI and scans confirmed 4 brain lesions and multiple lung lesions, further testing confirmed the lungs were the primary.
Two weeks of radiotherapy on the brain and lots of steroids helped retain his memory and balance, though he walks with a stick as tends to tip to the right. However, much more stable.
Chemo for the lungs began in January and he has the third session this week. Stereotactic radiotherapy on the brain starts again next week.
Recently appetite has decreased and legs have definitely got weaker - he was already thin - but apparently the taper down of the steroids will make this better, though the muscle mass on his legs has deteriorated significantly. He isn't able to make it to the toilet quick enough any more so has to use adult pull up disposable pants at night and I have a urinal bottle on standby which he wakes me up to use about every 2 hours.
Then of course the 3 days around chemo the steroid dose ramps up and wipes out some of the taper down progress in one fell swoop it feels like.
To cap it all he went for a short walk 4 weeks ago when his legs were feeling stronger - the 'light exercise' as advised in his little blue cancer book - and tripped over and broke his right arm at the neck of the humerus, which means he is in a sling for months. This is causing more pain and agitation than any of the cancer treatments but means neither of us are sleeping much (maybe making legs worse?).
The leg weakness seems to get worse as the day goes on so I'm at my wits end to work out what I can do to help. When we go to the hospital for clinic and treatments, I get a porter and a chair to take him up now (apart from radiotherapy, which has his own entrance and is a very short walk from the taxi).
Sorry for the random rambling, missing family and support due this s*dding virus.
Hello GothonaB and welcome to our little corner of the online community, but I am so sorry to hear of your husbands diagnoses. It is devastating when you get a sudden diagnoses. In one moment your whole world changes. Your poor husband sounds like he is having a really rough time. And then to go and break his arm as well. You must of felt like you were having everytjing thrown at you at once.
You are right, this pandemic and the current lockdown is very isolating, especially when you have a loved one to care for by yourself. Have you spoken to your husbands oncology team about how your husbands health has deteriorated?
The online community is a great way to get support from others who are in a similar situation to yourself. You could look at joining the brain-cancer-forum and also the family-and-friends-forum is a very supportive group for people looking after loved ones with cancer.
You could also speak to one of the Macmillan support workers by calling 0808 808 00 00. Its a free call number, and they are there 7 days a week from 8am to 8pm. Maybe they will be able to assist you with getting help at home. I don't know if that is something you may consider.
Take care
