i just need to rant

I feel your pain and frustration Hermes.  In my husband's case the communication/doctors/hospitals etc have all been truly amazing, but I have come back from a hospice visit today expecting to be discussing husband's impending return home as he's being doing well with pain meds etc. Instead, he's lying in bed listless and sick.  The change from one day to another is both frustrating and heartbreaking.  You're right, we'll never get our lives back to what they were and many of our loved ones have all but disappeared before our eyes.  It's sometimes just so hard to maintain any semblance of the strength that we're all supposed to have (to the outside world at least, not in here because we all know how fragile our emotions can be), and to just dissolve into tears when no-one can see.

Thank you for sharing in this safest of places.  We're all here for you.

Hi Hermes

I completely understand and empathise with how you feel as I am going through a similar experience to you.  My husband has finished treatment for  stage 4 Squamous Cell carcinoma 6 months ago.  As I am sure you and everyone else on here will understand recovery has been a really difficult journey.  Recently my husband took a turn for the worse and The District Nurses who visit weekly (he has a feeding tube) were concerned that he could have a vitamin deficiency due to the symptoms he was experiencing.  They  advised me to contact his GP for blood tests ASAP.  However after speaking to 3 different GPs, 2 lots of blood tests all confirmed he has Anaemia, low Iron and sodium levels it has taken 5 weeks of constant chasing the GPs to eventually get treatment for him.  He is now started treated for this and is now thankfully beginning  to improve.

I feel so annoyed that we as carers have to have all this added stress but at the same time as I am a part time secretary for Mental Health Services in the NHS I know just how incredibly pressured  the service is now since the Covid Pandemic.  I have found the best way to deal with all my husband's  appointments, messages etc is to keep a detailed note ( I keep a spreadsheet of all this) of every appointment and who he is due to see, who rang to speak to  you if they ring to cancel etc.  I also make sure I  get all their contact numbers  too as this helps when you need to chase things up if you have a name of the person you spoke to.   I hope things improve for your situation and remember you are not alone there are lots on here who will understand what you are going through.  Take care.

Caroline (AKA Welshpony)

Hi Hermes

I hope today is less frustrating today. I share your frustrations. My husband was diagnosed with a stage 4 brain tumour in Sept 2020. Since then we've been referred through 10 hospitals and 4 different oncologists plus a professor specialising in blood clots. No two of them say the same thing.  I've ranted many times to friends and family that I just want to get those folk, sit them down in a room and say "how about some consistency here and while you're at it, get the story straight too!" 

Hang in there. Stay strong, You're doing an awesome job here.

love n hugs

Wee Me

Thankyou all for your responses, all very meaningful and helpful. Yesterday got more frustrating in terms of dealing with the hospital BUT i think i know where we are now with them. I just need to manage them more carefully. My husband was in a lot of pain yesterday and amazingly out GP came to see him on her way home from work and prescribed some more medication - she was also very clear, just call and ambulance if we are worried. Explain Marc has cancer and he will be fast tracked. The fact that she came to the house on her way home from work meant the world to me in terms of feeling that a doctor really did care. Today is peaceful - so far. Thankyou all again. 

I know what you mean about the need to rant, I feel the same, I keep thinking why me and why us, my wife has now got kidney cancer and will have radiation therapy, she has had cancer for the past two years brain and chest now this. I really thought we were getting through this now wallop, I am so angry and frighted and frustrated I feel like screaming give us a break. We are living in Turkey so there is a language problem for me, my wife is Turkish but since she had a brain tumour and the radiation therapy she has problems communicating with me in English. My two stepdaughters are both Turkish and don't speak a lot of English they do their best but it's so frustrating not knowing what really going on. I keep thinking when are we going to get a break, I know there are people worse off than us but I am having problems dealing with this. So yes I can identify with the frustration.