Hello blog peeps,
I am writing this blog from within the hospice. My family are here with me to stay the night, please don't panic. I am in here for respite and very much plan to come out again but I'll tell you how we ended up here.
It's been a while since I wrote a blog. It's been eventful. Unfortunately not in a good way.
On the 15th March I felt really hot so I took my temperature. 38.9 is not good, not when you've recently had treatment for chemo or immunotherapy. So I duly took myself off to hospital to be checked out for any infection that might be lurking.
Once there they triaged me fairly quickly due to my recent treatment and the problems having an infection could cause. I sat in a side ward for some time waiting for a transfer to my usual hospital.
I got settled on a ward around teatime and they put some antibiotics up - Tazacin - and I settled in thinking I get treated and be out in around 3 days approx. How wrong can you be? Through the night my body decided to constantly evacuate from the rear end (too much info?) so the nurses moved me to a side ward as precaution against a hospital bug. The next day the evacuating had stopped thankfully but then I started vomiting and could not stop. It was awful. I hate being sick and here I was being so every half hour without fail. They took down the antibiotic in case it was a reaction to that (I think it was). I was feeling so miserable I couldn't drink or eat. The Dr's all very concerned prescribed me several anti sickness tablets and injections but nothing seem to make any difference.
I needed access in my veins via a cannula for various treatments but my veins were really not playing ball and any that they got in just collapsed and blocked up. I ended up at one point with a cannula in my foot. Not pleasant. I can't remember the last time I felt so ill and I was feeling really upset as the sickness rolled into day 4 and 5. I think one of the all time lows came on day 5 when a Dr queried my Do Rescuscitate, I said yes please I don't want them to not try to save me yet. He is not on my list of favourite Drs I can tell you. During this time the palliative care team were visiting me and began suggesting that perhaps I would be better off in the hospice. This on top of the reminder of whether or not I wanted to be resuscitated really scared me. Day 6 after admittance they decided to try putting some anti sickness medication into a syringe driver (a pump basically). The hope being that if the drug was delivered at a constant measure we might get on top of the nausea and vomiting. The next day it was also decided I would have a PIC line inserted which would solve the vein access issue. So I was wheeled off to Interventional Radiology to have it inserted. It is a minor quick procedure where you have local anaesthetic injected into the area they are going to put the line in (usually your arm). Once the anaesthetic has taken effect a small incision is made after they have found a suitable vein to insert the line in. This is done via ultrasound. Ordinarily I'd have grinned and beared it until all it was all over and done with but I was still being sick so was retching at times while they were digging around. I ended up crying because I felt so miserable. They got it in and I returned back to the ward.
Dr Oncologist had found out I was in by this point and came to see me. He could see I was in a bad way and wanted to try to help, the Urologists having agreed there was nothing more they could do it was agreed I would be moved to the cancer ward. The nurses on the ward had been lovely all along and really tried to help me feel better but I felt better about being on the cancer ward.
A CT was ordered and I was left over the weekend to see if the vomiting would settle. Thankfully it did begin to subside. A dear friend came to see me and bought me an ice lolly which was like a treat from heaven. So much so the next visit she made should bought me a whole box full. Wonderful. Ice lolly for breakfast, dinner, tea and supper!
The same friend came with me the following day for the CT scan which I wasn't worried about due to having the PIC line. However I got in the room finally (waited for 45 mins) they told me they couldn't use this line due to the pressure they inject the dye at. I just sobbed. I didn't want any more cannula attempts and refused the permission for them to try so they did a scan without the contrast dye which wasn't as useful but at least showed I had not got any signs of an infection in my brain.
The palliative care team came to visit me again on the oncology ward again to suggest I might want to think about going to stay in a hospice. I was assured that they don't just deal with those who are at the end of their life but also managed people who it was expected would go home. I agreed. I know hospital beds are precious so felt that I really should accept the move. Really what it was was the knowledge that hospices and cancer are intertwined and often with the end of life. It brought it home. The knowledge that unless I get a miracle I will end up in a hospice to die in all likelihood.
The hospice when I arrived was in fact quite pleasant, exactly as I had been informed it would be, the room they had set aside for me was in fact almost like a suite with a bedroom area and a large living area with a sofa that turned into a sofa bed. This meant that my family could come and stay overnight which I was really happy about as I had been missing them so much. I'm not really sure what I expected a hospice to be like or look like but be assured that if you like me are afraid of the idea, they really are far better than you expect and the staff are amazing
The plan was for me to gradually gain my strength and then return home. Over the next few days I had complementary therapy in the form of acupuncture and relaxation sessions and felt happier than I had in a fortnight.
On Wednesday 29th I woke up as usual and had my breakfast. With my first bite of toast I suddenly felt very wet down below and a continued sense of wetting myself. I went to the toilet to check what was going on and was petrified to see it was blood and it was continuously coming. I pulled the emergency cord (never been so thankful for one of those ever) and began to feel faint. I was so so scared and frightened that I would die when I hadn't seen the children for a couple of days. Within mins there were people everywhere and voices and a sense of rushing. I really don't remember the rest but am reliably informed I was given drugs to try to stop the bleeding and to relax me then sent in an ambulance (blue lights) to A & E. Unfortunately for Mr H he remembers the whole day very well once he met us at A & E. I then vaguely remember having a ct scan to see where I might have bled from and following that a procedure called angioplasty to try to avoid a repeat experience. Angioplasty is a procedure that aims to avoid any weak veins suddenly bleeding out. It involves stents being inserted into suspect veins so the likelihood of another bleed is hugely reduced. Such a scary incident in that I was in real risk of bleeding to death and could quite easily not be here to write this blog.
After another short stay on a ward in urology I was returned back to the hospice for continued care.
A very sobering experience, the realisation that actually cancer can cause all sorts of life threatening problems that I had no idea about but could suddenly take me away from my family at any moment. It has left me scared and very worried.
I'm just sitting here now on the eve of another trip to London for immunotherapy, feeling very nervous and worried in case I have an adverse effect to the treatment and end up not going home for another period of time.
Cancer sucks big hairy ones.
