On 5th July I took my husband to A&E as he had been struggling with balance and that morning speech. We thought a mild stroke so rather than put in a call to the GP who can take days to call you back and sometimes never we thought it best to head to hospital ourselves. My husband was seen very quickly and I was told to leave him there. I waited in the car park for hours and he rang to say he’d had a brain scan and tests and was staying in. On the journey home he rang to say they’d found a brain tumour and wanted him to stay in to do more tests to make sure this was the primary site. On the Tuesday a full CT was done and mRI on Wednesday with results being sent to GP. On Monday we rang for the results and we’re told over the phone that the scans revealed a large mass in the lungs and the brain tumour was secondary with very poor prognosis, no invite to the surgery or house call just over the phone which I felt was so wrong. The following Friday we had a virtual meeting with the respiratory consultant. He went through the scans and showed us the images of the cancer and areas which it had metastasised. 3-4 month life expectancy but he wanted to take a biopsy of the lung to establish the type of cancer to see whether any treatment could be offered. He would arrange to find an urgent appointment to have this done as there was only a narrow window to get this done.
That weekend was hell. It felt like we’d been dropped from a plane into the ocean and we were swimming for our lives with no rescue insight. We tread water for two weeks and the scope/biopsy is tomorrow. Palliative have been round to assess him and are prescribing morphine even though he says he feels no pain. OT want a hospital bed and hoist put in our dining room and I need to empty it of furniture (god knows where I’m going to move it to). The GP filled the DS1500 saying no treatment (no chemo) just palliative care. So why put him through the biopsy if he isn’t going to benefit from it?
feels like we’re going 0-60 in micro seconds, we have no control over what is being done and can’t slow it down.
im not new to cancer and have seen most of my family die from it. The difference though is due to the brain mass is in the thalamus (the hub). If the pain signals aren’t being read then he isn’t feeling it but also not showing it. He is deteriorating clearly, steroids (dex) was reduced down but had to be increased back up to the high dose as he started having tremors in his right hand side, balance was worse and developed urinary issues. He has an increase in saliva (that one is new to me) and the cough has changed with more phlegm (clear mucus rather than white).
if he isn’t in pain why prescribe morphine? It will constipate him but more importantly it will depress the respiratory?
am I missing something here? Why can’t they tell me what they are thinking? If I’m in the know I can prepare myself, but I’m getting mixed signals.
Hi Bee todd,
So sorry to read about what you and your husband are going though. It does sound very off to prescribe morphine if your husband is not in pain especially as you know the side effects are not pleasant, it would certainly be worth questioning that decision.
The DS1500 is really just a form that allows you to access welfare benefits on a fast track scheme. You can see more about this here. In some ways it can seem a little bit cruel as the GP has to say they believe someone will live less than 6 months.
One of the plus points in the NHS is they are quite keen to only do things that make a positive difference, although of course as patients we get to give informed consent. So for the biopsy he should be told what they hope to gain as well as the risks. With my wife's cancer it took a lot of work to find out what is was (Leiomyosarcoma) and two lots of chemotherapy managed to bring it under control.
Really agree with the above though the specialist nurses are a godsend but sometimes can be hard to find. Our nurses on here Ask a Nurse can help translate medical gobblygook in to plainer English and can provide ideas for sources of support both for your husband and you.
Do post on here whenever too - someone will always come to stand with you.
<<hugs>>
Steve
