So today was a visit to Addenbrookes to see the Bladder Doc who operated on my bladder via my Gentleman’s Sausage to remove a biopsy for testing.
This was part of the process to understand why I am still going for a wee every 25 – 30 minutes on average, 24/7 and now in my 8th month of that. Worth a moment to pause and think on that – every 30 mins, 24/7 for 8 months – so what sleep I get is within that 30 mins so can be 20 mins or it can be nothing at all depending on what thoughts pop into my head when I do wake up.
Bearing in mind my current circumstances you can guess that it is not often that a scene of an idyllic beach with a cocktail in hand, lying on a sun lounger next to my beautiful Lisa is something that crops up too often. Generally it revolves around some level of fear or anxiety or pain be it emotional or physical. Every 30 mins during the night, for 8 months. What price would we pay to stay alive? It hurts, but I’m still relaxed about the price at the moment….
Recently I have become more and more anxious about today’s appointment as I’m very aware I have been ‘catastrophising’ about the results – not sure if that is a real word, but it is now. Varying in fear and anxiety from they can’t do anything with it to having to remove my bladder and have a stoma bag. Pointless to let happen but very hard not too, especially when sleep deprived.
Anyway the Doc was pretty short and succinct about it all – the biopsy was benign, that was the main thing, no malignancy, no cancer – relief and tears. He added that the biopsy was odd in lots of ways and 5 Consultants ended up examining it as it was so interesting and they all concluded the same thing – it was benign.
I said how tired I was and, through the tears, how hard it was to deal with and in fact it was harder now than before as I was more able to do things but held back by being permanently tired. Unfortunately, using my describing skills, he said I would have to suck it up and deal with it for the time being and we review things in something like three weeks time. More tears but at least I now know that there is no short term fix so it’s back to the medicine cupboard to open a new bottle of ‘Man-Up’ pills and crack on.
Oh, on a practical note which I’m really grateful for, he suggested two glasses of water a day with a teaspoon of bicarbonate of soda mixed in as this would help reduce the burning sensation in my Gent’s Sausage and the occasional ‘electric shock’ feeling I get which makes me jump and hurts enough to cry out – raiding the baking cupboard in the morning!
The Doc said the next issue was my swollen left kidney which is still causing some concern. Ultrasound recently showed it was a little worse at passing fluid which could be because the inflammation in my bladder is part-blocking the tube between my kidney and bladder. The way forward on this is to return to the Nuclear Medicine Department to be injected with radioactive dye and have the most accurate scan done it to compare against the original one I had done back in August ahead of being admitted to Addenbrookes.
These are all relatively tough to deal with but again it is part of the price to pay and a price I’m still very ready to pay.
So despite disappointment that there was no immediate ‘cure’ for my bladder at least I now know where we stand and can come to terms with that, take the Man Up pills and crack on.
Haematology Day Unit
Next up was a visit to the Haematology Day Unit to get my chest line flushed and the dressing changed, something that needs doing weekly. It makes me very aware of how much I use in terms of resources – the chest line has three ‘lumens’ or additional lines that come off the main one in my artery. It has been in for nearly a year now and is going to be scheduled to be taken out soon – the nurse commented today, ‘Gosh, after a year that’ll take some tugging and pulling to get out!’ Oh how I laughed!!
Anyway to do the line costs the nurses time, three syringes to suck blood out of each lumen in turn, three new ‘valves’ on the end of each lumen, then 3 syringes to flush with saline solution followed bt three more to inject ‘heplock’ which prevents any blood still in each line from clotting. When it does clot which does happen it makes sucking out free flowing blood much harder and a short ‘sausage’ of blood about the thickness of a piece of thick cotton thread will come out – yuk.
The old dressing is then removed with a bit of whining and crying from me as I am now the proud owner of a ‘Moroccan Carpet’ (hairy, properly manly, chest again!) but it pulls lots of hairs out when the dressing comes off. Another price worth paying for me to have ‘the carpet’ back – Lisa is less keen! A quick mop up with very stingy antiseptic sponge wipe and the new dressing goes on and I can escape for 7 days.
One thing that hits me more and more is that it is now over a year since I was diagnosed and started my first treatments in the Day Unit – what a bunch of bloody heroes they are in there, ‘ordinary’ people doing their day jobs – providing comfort, love and care to frightened and very ill patients, day in day out. (They do get Christmas Day, Easter Sunday and New Year’s Day off mind you!!!
I guess this is a bit of a tease – but word count tells me I have exceeded 900 words on this and subject to feedback I feel that is more than enough so will save the harrowing story of the Counsellor until another day……see what I’ve done there!!!???
Staying in touch
Rightly or wrongly I still plan to come off FB for a variety of reasons, Zuckerberg, pressure, personal reasons etc and this blog seems the best way forward from my end.
I feel I owe a duty of responsibility that having done what I’ve done so far I need to keep going – collectively we have done a lot of good – people have signed up as blood donors, bone marrow donors, donated to charitable events, carried out charitable events and not least I believe from many comments made and private messages received been able to talk more openly about insidious illnesses such as this, other cancers, mental health which is all bound in with this too, and so on. I think it has become quite a team of us ‘ordinary’ people doing the ‘extra-ordinary’ and there is no doubt in my mind that everyone has helped lift me from some dark places.
I feel a level of discomfort though that the ease of FB will go sooner or later and be replaced by this – people can opt to ‘subscribe’ which will add their email to the blog mailing list so they’ll be notified of updates or can just check out the website once in a while as the blog is not the front page and all the other ‘gumpf’ has been relegated.
I’d ask everyone to consider staying on board – we’ve built a great team and pulling together makes the workload lighter on everyone!