Ever Decreasing Circles part three

Cricket is the sport of Kings. At the moment, the English team are playing like a third eleven club side but oh, the drama!

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Bazza

I love my cricket whether it is my local club, where I am president, Yorkshire where I am a season ticket holder or the national side. I used to love playing and now love watching, whether on TV or live. I prefer quieter games to watch live. I decreasingly like big crowds and hot weather so the comfort of the sofa is better for televised international cricket. I can lose myself in cricket when other things in my life, mainly health related threaten to dominate. If you can focus on the positive in your life, somehow the difficulties seem more in perspective and not dominating. So cricket is one of my key enablers even when the wheels come off but that is sport anyway and there is always next time.

Edited by member 21 Dec 2016 at 20:00  | Reason: Not specified

So having been through the mill with ancillary complaints and just about emerging I thought I'd update. No PCa update as another month to onco appt but symptomatically speaking it's still good. I had a colonoscopy as an early Xmas present 9gruesome preparation though the procedure itself ok) and the results have been good so no additional problems. So I have IBS as a result of the campylobacter infection which should clear over time. With occasional help from Imodium I am managing so far to avoid embarrassment when I can't get to the loo and it has begun in the last two weeks to be more manageable. This in turn has helped my diabetes which was becoming a problem. I had appointment before Christmas and my hba1C was rising and at 83. So change of meds and first injecting med now taken though not yet insulin. Of course unless the stomach settled risk that the meds would not be in the system long enough to have impact.

Anyway roll on two months and in the last fortnight had a noticeable improvement in my general bon homie evidenced by a steady improvement in my daily blood test for diabetes. Appointment today revealed in just 8 weeks hba1C down from 83 to 74. So clear improvement reflecting how I feel. Good news as insulin is around the corner.

Vitamin D very low so have to deal with that but my ancillary issues are beginning to behave again so be great it the PCa continues to sleep.

Now a quick question. I am considering an application for PIP. My walking is now very poor centred around my bone mets in my right leg which means after about 30 yards it starts hurting and only stops if I stop. So at Xmas I trialled a mobilty scooter whilst at Center Parcs. It did give me more independence and I got around so much more. If I get an assessment and it fails does that preclude a further application later on. Any advice welcome.

So trying to keep well before the PCa takes off again. Five years now so becoming a veteran at this.

Paul good to hear improvements in some areas. Hopefully the PSA will follow suit next month.

Been some time since I had any dealing with benefits but my understanding is that PIP is a benefit that is paid based on how the condition impacts on you not because of the condition itself. So based on that I would think if you are currently ineligible (which I doubt) you may become eligible later if the impact of the condition gets worse. So I wouldn't think you would be precluded for another assessment while you are eligible age wise

Bri

Didn't realise you were 64 Paul. So age-wise you probably will only have this one shot

Bri

pleased to hear you are coming through the worst of things. Insulin isn't that bad and it does give really good control. The steroids would have pushed your HBa1c up a bit.

As for PIP and benefits please get help from either your own local hospice team or Macmillan. As far as I understood anyone with a T4 terminal diagnosis under state retirement age of 65 is eligible for PIP . Most Oncology consultants will help in the fast tracking process by signing off a special application.. You can only get it approved pre 65 though even though once you have it you only have to requalify every 3 years (I think ?) Mick managed to get it literally days before his 65th birthday thanks to the St Barnabas hospice benefits advisory service.

Knowing you and your mobility issues I would say you would qualify for the top level payment which would give you a full motability allowance, a blue badge etc. Once Mick's was approved they back dated it about 4 months.

It is not means tested. Lots of Men on this forum get the full benefit even though they have outlived the 6 - 12 month prognosis that is supposed to be the qualifying criteria.

I always viewed it that Mick would not get to draw his state pension for very long and this would go some way to making amends for that. There again I really didn't expect him to only get it for 8 months.

Im sure one of those that get it will comment soon

xxx

Mo

I think they have tightened it up again for the terminal illness version Mo - specialist must confirm that there is a life expectancy of less than 6 months. Happily for all of us, I dont think Yorkhull is there :-)

Thanks for all the responses very helpful. Been out tonight celebrating five years survival with my children at the same restaurant we have been to every year since that first shocking realisation. I said we would go back every year to mark survival even if it was only 2/3 years. It's over an hour to get to but tonight was our sixth visit and another good night. I understood the terminal illness bit re PIP and the 6 month timescale which Lyn I hope u r right will not happen for a little time yet. But I am 65 in May and wondered whether I would get a favourable assessment. I already have a blue badge. Anyway I shall keep thinking. thanks for all the info.

Edited by member 12 Feb 2017 at 00:10  | Reason: Not specified

Here's a brilliant advice piece on YourAble how to present the best possible PIP application.

http://www.youreable.com/forums/showthread.php/6904-PIP-success-story-and-some-reflections

Bazza

Just a quick update. Decided to go into the oncology clinic this morning as not been feeling too good since reduction in steroid dosage. No problem with seeing me despite a typically busy NHS clinic and waited less than hour. Seen by the main man who was very helpful. Dexa dosage to stay the same but put on paracetamol and a stronger pain killer - oxynorn - if needed. Also anti-sickness if needed. We discussed the fact that it's nearly two years since a bone scan and one was immediately ordered with a ct scan too. So pleased with that as can double check that the PSA improvements are reflected in the scans. In the meantime hopefully can keep the pain in control and get some energy back.

PIP form went in last week just waiting for assessment now. The way I feel this week could do with assessment now!

So hopefully I will get used to my new normal and find more energy in the weeks ahead.

I can't believe that it is two years since you have been scanned, I have fingers and toes crossed for that.

Trevor's pain has been really well controlled with the slow release morphine 2 x daily and the paracetamol 4 hourly .

Loving your blog 💗

BFN

Julie X

Hi Paul

Sorry that things are a tough for you Paul. Pain is hard to cope with in its own right but, if my OH's experience is anything to go by, also tends to increase anxiety and tiredness and massively undermines quality of life. That said the new pain management regime - slow release MST and four lots of paracetamol daily - is working really well and he's got both his mobility and his confidence back. Do so hope the same is true for you. And fingers crossed for the PIP.

Take care.

Eleanor

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Thanks all sorry for not responding sooner been out all day today. I'll clear some space in my inbox Dave and I do hope to reduce the pain, felt better today and that was only on paracetamol.

Lyn of course you are right has been a hectic time but try to keep busy if I can. At least I have tried with Pip, I had a whole section on pogoing! By the why why didn't u pop in on your way to my son's school. He said you were very good.

One concern Julie they have with the steroids is diabetes control and that has been difficult of late. I suspect if/when I move onto insulin this will help control as even if I know my blood sugars are high I cannot adjust with tablets. This is why enzo is next, so I don't have to take high dose steroid. See what the scans bring. Be interesting if they ever give me chemo regarding steroids. But not yet I think.

Thanks Eleanor pain management is always a pain! I've had a good year under the dexa as the year previous was very heavy going pain wise. I suppose I fear it going back to those levels and beyond. But not felt bad today and been busy so let's see if I get a reaction tomorrow.

Paul,

Sorry to hear of your latest issues , hoping things get better and that you are ok for the 1st June

Regards Barry

Page turning trouble, the sequel

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