Sometimes it’s ok to not be ok…..

…… it’s just not something I’m very familiar with!

I have now been home for a week after spending almost a week in hospital.  To be completely honest it all feels as if it’s happenened in 5 minutes and yet I can’t remember what normal is even like.  I feel as if I have been to some alternate dimension without having missed a minute…. confused? Me too!!!

The good news is, of course, that everything is going to be absolutely fine.  I am going to recover and the universe will continue to be a beautiful and inspiring experience ❤️ this is also going to take time.  I am still getting my head around not only how this has been such an emotional experience for me but also why.  I really don’t get it yet and I have limited capacity to explore it right now so this may be a drawn-out process which I’m not sure how I’m going to approach but as this is my place for reluctant ramblings I thought I’d do some of it here 😍

I’ll give you a potted version of facts for today and then I’ll share as I get more into it in the coming weeks if I think you may find it of interest.

As far back as May/June I thought I had a sinus infection.  Typical symptoms including a bit of dizziness, sore face, pressure leaning forwards along with a slight strangulation sensation.  My immune system was all good, no sign of infection, just a virus, keep being healthy.  At the end of July I got the fist swelling around my face and neck.  Another sign of sinus issues, a trip to the doctors resulted in antibiotics which after a double course seemed to relieve it.  I told Pip my oncology nurse about it and she asked me to let them know if it flared up again …. it did…. so I did… thoroughly examined by the acute oncology team, including ultrasound around my face and sinuses.   Just an unfortunate virus, more antibiotics, mouth wash, snot busting drugs etc etc

At some point in here I also had my port flushed.

By the end of September it seemed to be getting a little better but then it suddenly got much worse.  I realised that my sense of smell, taste, hearing even my sight were all compromised the pressure in my head became unbearable – even my arms and hands were blown up like balloons and I felt strangely as if air (or something far more unpleasant) may begin seeping from my skin.

Friday morning I made my 3 visit of the week to my gp and was sent directly to the acute medical unit at the Norfolk and Norwich University Hospital bypassing a&e with a white face and blue lips!

It took until Monday morning to get a CT scan to determine the cause.  During that time there were several scenarios up for debate. (These are not exact clinical terms and references, just what I remember)

• Cranial progression; where the cancer has spread to the external bones of the skull
• Coronary or venal mass; where there is new tumour growth in my veins or heart, potential requirement to insert shunt or treat with radiation
• Lymphedema; blockages in the lymphatic system
• Inter Jugular Vein (IJV) Thrombosis; blood clot in the jugular

The good thing is it’s the clot.  I will completely recover.  The not so good thing is that although the drugs will prevent it from getting any bigger, only my body can disperse it and it needs time to do that, patience and time.  If I do nothing, I still have compromised hearing, sight, smell and taste, along with the throb of pressure throughout my head.  As soon as I do anything (even talk with too much enhusiasm or sit up or lay down too flat….) the pressure builds and I get out of breath.  I am being given steroids to help with the inflammation which appear to have made me even more food obsessed (something I would not have believed possible 😖) poor Phil is having to do everything for me including sating my insatiable and very particular appetite…..

Maybe this is why it has hit me so hard because even I am struggling to find the positive spin here and I do generally consider that my forte!  My emotions have been all over the place, I have been irrational and I have cried … a lot… it doesn’t feel like me just now.  The thing I hold onto is that I have not lost sight of how lucky I am to have such an amazing supportive network around me that will get me through this, hopefully a better person on the other side ❤️ I know there is something great to come from this.

Talk to you soon

Lots of love Mand ❤️