Guess what….. I had treatment today!! What a bloomin surprise.
I’ve been missing in action for a number of weeks and realise I worried a few folk. Well you were right to be worried! I hit rock bottom and went 60 feet under and got buried in a big grey heavy cobweb that almost finished me off and not just once.
In a nutshell….I had a good first week in lockdown. Suddenly I started to get some pain. I realised it was radiating from my liver area. I reported it and had a specialist nurse team coming home every few days trying to control the pain. We started on tablets for each possible cause i.e. nerve pain, muscle pain, but couldnt get it under control. I was literally screaming in pain every day for 5 full weeks. I was on 4 or 5 different pain meds and went up to high dose fentanyl patches which they use in the army. I was just having all these damn pills thrown at me and even that I couldnt cope with. Nothing was working.
For a couple of weeks Gurveer was giving me me hourly doses of liquid morphine on a spoon as I couldn’t manage to even co-ordinate this myself. He had drawn up a timetable of drugs taken while we tried to tackle the pain. A couple of times we had the emergency nurse team come out at night to inject further pain meds that I couldnt administer myself as the pain was too much to bare. I couldnt see the light.
Nothing seemed to be working and this torture lasted a full 5 weeks. It was a bloody nightmare and beyond torture on a daily basis on another level. However, I felt I wasn’t being listened to. I didn’t think painkillers were the answer we needed to know what was going on and especially because it was radiating from the liver. It’s all well and good taking a million frikkin pills that don’t work but my agenda was trying to find out why I had the pain in the first place. Eventually…….eventually my voice was heard and my scan was brought forward. I shouted even louder and my scan was brought even further forward. This whole episode shouldn’t have lasted as long as it did and I just suffered through it.
At this point I was scared for my life I was in so much pain I was getting through my days hour-by-hour. My mental health took a battering I lost all of my weight and muscles and got to the point where I struggled to get out of bed or walk even around the house, shower, eat….. basically function. Gurveer was carrying me through my days.
The regimen I was on was immunotherapy every 3 weeks. I was quite disappointed because I had friends work with me to get my immunotherapy funded directly from the pharma company. It took time to set up and we did it….. but for me it didn’t last as long as I had hoped. So I had to stop it really abrubtly. Because of this stupid corona rubbish everything was done over the phone with my oncologist and I also found this very challenging.
I’m now on chemo again every 2 weeks. 2 weeks is not reasonable at all. I do bloods every 2 weeks. I am in for 4 hours on the day, and then take a pump home with me attached to my port for another 48 hours. Gurv has trained on how to remove it so that I can avoid a further visit to the hosp. This messed with my head even more but I did cycle 3 today so I’ve calmed down a bit.
My mental state has taken a proper battering. I did loose my positivity and strength and its quite a task to build yourself back up. My pain has stopped. Ive had an array of panic attacks and now on anxiety meds which are helping. The anti depressants have been at the pharmacy for 2 weeks….. Ive not collected them yet……
So there it is that is where I have been or not been. I hope everyone is safe and well and I will try and reach out or at least answer people when they have texted me. Anyone who has anything helping with mental health, feel free to reach out cos I think everyone is suffering in lockdown to an extent
The last couple of days I have started to progress to finding the help that I need. I have managed to get my accupuncture as an emergency case and reached out for some online therapy so today the universe gave me the strength to get words out onto paper!
I’d say I’m ok…. well I’m not ok but as ok as one can be in this situation. I dont want folk feeling sorry for me. It feels good to release and connect with friends again. I need strength and positivity to help climb out of this rut that I have got myself into. It is what it is and I am powering on. I have come this far…….. I have risen before and I will bloody well rise again.
I am still grateful for everything I do have, my beautiful boys, my amazing husband and the flowers in my garden. I just love sitting in the sun on my lounger for an hour a day just staring at the sky and resting. My sisters who I emergency called over during lockdown, my lovely friends who keep checking in with me. Of course Leena bringing us food although she slacked off last week !!!!!
Here is the knitted blanket I am working on when I can for my precious Amar x