Bladder Doc

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.

Image result for bladder cartoon

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!!!

Counsellor

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!

Category:
Challenges, Ian's Blog

Join the conversation! 32 Comments

  1. Ian, you never cease to amaze me with you honesty, bravery and commitment to keep hanging in there.
    I’m sure I’m not the only one who admires …yes, that’s right…admires you, and Lisa too. You’re right, you keeping us posted has indirectly helped others, and that’s do typical of you. None of us can start to imagine just how hard this is for you all, but, all we can do is encourage you to keep that fighting spirit even though you feel like shit, you’re so tired that giving up would be easy…but not you…a true inspiration. Keep rowing matey , it may be taking longer than you expected, it may have been a more stormy journey than first thought, but you’re on it. Love and hugs to you and Mrs R as well as the children xxx

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    • Hi Jayne – you’ve been a star…..and I’m allowed cakes now too remember!!
      I just don’t think I’m bright enough to give up, I’m certainly stupid enough to keep on though which is handy!
      Having a big team to help pull me along is amazing – that’s why I always preferred eights to sculling! X

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  2. You are amazing in and we are in and would love to continue to be on the team and updated. Love to you and Lisa xxxxx

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  3. Still with you. Cry all you want, it matters not a jot and if it helps you, let it go. Be tough, you have been through troughs that most of us can only imagine. What a record you have kept of all the happenings, if it helps you keep it going

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    • Hi Anthony – thank you old friend, I can get out and about a little bit provided I’m sensible (so you can imagine what a strain that puts on me) – maybe I could pop over to Turvey for a brew sometime soon?

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  4. I almost don’t feel worthy of a comment on here. I got to know you only briefly as a landlord/ neighbour and as a public speaker. But your strength has helped me through some challenges in the last year. Admittedly and possibly ashamedly as a comparison- at least this isn’t as tough as the shit Ian is facing. I’m now on the bone marrow donor register, which I didn’t know was a thing before. Sweat out the short game shit, the long game is where it’s at. I look forward to one day witnessing you losing the plot at the audacity of a non-permitted vehicle parking in your car park. Remember the days that was a big deal and think how far you have come x

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    • Haha! The car park made me laugh….although I obviously have no idea what you mean! Thanks Gemma, on all you say.

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  5. Definitely still in and pulling with you. As has been said by others – most of us can only imagine aspects of your last year. You are the skipper, the strongest of us all and I for one am honoured to pull in your team!

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  6. Still with you Ian. I once spent a ,fortunately, much shorter time rushing to sit down; up to 20 times a day for over 20mins a time. Very little sleep was had by anyone in our house.
    Wishing you strength and some peace.

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    • Cheers Chris – it’s not a lot of fun is it, yet you’ve just got to laugh!!

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      • In amongst the fear and pain, yes Ian, you can only laugh when you can or much darker emotions might gain the upper hand. Wishing you strength. 🤡

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  7. Ian, that same old friendliness of yours comes through, I always think of you rowing and what you boys wanted to achieve. Also your boyish ways when all together at the Rowing Club. Then helping Neville and co to move a bath, what next. This does surpass all that you have achieved over the years, we are amazed at your strength now, and how with Lisa’s help getting through troubled waters you keep bringing back more strength to get you through each trial. So with every good wish we send, we are still looking to see you in that boat, and pulling with all your might for that bravery medal at the end of the course. Our best wishes to you and Lisa for the Grand Finale with a bottle of Champagne to greet you.xxx

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  8. I don’t know what to say to you Ian except what an absolute inspiration you are and how proud Lisa and your family must be of you. Your courage and bravery is awesome. I will keep on praying for your full recovery xxx

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    • Thanks Kirsten, I couldn’t do this without Lisa and family. The support from everyone else is massive too.

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  9. I hardly know what to say as all your supporters write such eloquent and inspiring words about you Ian. All I can offer is my daily prayers, as I have done since being in contact with you. Your bravery is truly amazing and I will enquire whether my ol’ ‘bits’ would be any good as a donation (already carry a Doner Card but not as specific as bone marrow ) as I’m ‘knocking on a bit now’ but we’ll see…….
    God Bless you and Lisa and your family. All those glasses of champagne you’ve been promised, well, I dread to think how many times you’ll be ‘going’ then!!
    lots of love Sharon

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    • Thank you Sharon – I was reticent about publishing stuff about this whole thing at the beginning, probably more so doing it on a blog directly associated with my day job that I hope to return to one day but it’s the best way for me now.
      The support from so many people has been amazing plus all those signing up as donors, doing charity fund raisers and all of us perhaps learning to talk more easily about this and other illnesses be they physical or mental.
      I think a big Team has been built up and we can all do our bit, now and going forward.

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  10. Ian, I had the pleasure of listening to you talk about your rowing experiences a few years ago at a lunch. I remember you were eloquent, funny, emotional and focused. it was a talk that I talked to people a lot. I picked up your blog tonight and gave it a read.

    I just wanted to say that even in these challenging times from you your blog is as eloquent, funny, emotional and positive as you were when I saw you talk.

    i look forward to reading more and wish you all the best

    Reply
    • Hi Julie – I remember you and thank you for getting in touch, it really helps. I know no other way to be and a sense of humour has helped hugely in this as has the rowing experience. Both I feel have driven the Doctors and nurses mad at times though!

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  11. Mate – not seen you for 34 years but we grew up together in school so you’re a part of my life whether you like it or not. Even friends you’ve not seen for an eternity are with you all the way. Keep fighting my friend and don’t you dare drop your head or I’ll set the ghost of Stambach or Middleditch on you…….x

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    • Hi Neil – great to hear from you and yes what a long time ago and many years at the old school! Hadn’t thought of Middleditch for years – a legend and great at encouraging swimming in the old pool/ice bath! I shall indeed keep my head up with a threat like that hanging over me!
      Take care fella, savour every moment and I’ll keep on keeping on – all the support makes a huge difference and often keeps my eyes well watered!

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  12. Still here and rooting for your recovery Ian, laughing and crying when I read your posts. God bless xxxx

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  13. We are all still with you Ian. Keep posting, you are probably unaware of the impact they have on us ordinary people. You are extraordinary. You put so many other things in perspective. With you xx

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    • Hello mate – thanks for that Jules, I’m hope I’m doing something positive rather than just whining and crying all the time! It seems that I am… We’ll get that catch up sooner or later as I’m getting stronger and can get out and about a little more subject to health on the day and the number of people who will be about. Soon!

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  14. Bloody hell! We’re all here for you so keep gritting it out, you can’t let go now!!
    You have kept an incredible story going of your trials and you are a huge example to the rest of us who moan of our aches and pains. There’s nothing wrong with us if we can get up each day and do normal things. So we’d better stop winging and remember what you’re going through.
    If goodwill and support from us all count you’ll pull through.

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  15. Humour extraordinaire is a gift and you have it amongst many others. Dogs, they give us so much and they are very intuitive. I have two Goldendoodles (Roobarb and Custard) and they provide chaos, catastrophe and confusion and great company in equal measures. Stay strong and keep the wee wee pot up higher!!

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  16. Why did we 3 stick up for Norman Tebbitt in front of a baying crowd (might have crushed your fan club Ian, ooops sorry) why on earth did we live in Hackney Wick, why did we do 4 years on the Holloway Road or thereabouts???
    When I look back it was the camaraderie, the laughs and a few pints… together that were the real highlights.
    I remember very little about the course but I remember you and many others, we kept each other going and of course didn’t appreciate it at the time.

    You were and are a fighter, you were always positive to those around you. Keep at it, get better and get back in that damn boat….

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    • Bloody hell, that Norman Tebbitt thing was a disgrace – shouting his wife got what she deserved, that he should have died, ‘freedom of speech’ – sadly some things haven’t changed in 30 + years!
      Yeah, we had some laughs!
      You’re a star Richard, slightly less hair, but a star nonetheless and welcome aboard – could do with a big 5 (?) man to pull me along!! X

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