Winter workhorse + Health update

[Nanu]

Horrendous lack of service from a so called emergency service. I wouldn't just leave it to your cancer team to take it up internally. Trust me nothing will come of it.

Get this publicised as it may assist you in the future but also anyone else in the same situation. Can I suggest an email to the GBNews team. They are hot on this sort of thing and there would be no need to provide personal details. Have a couple of contact details if you want them.

Shocking but glad to hear your OK

 

[Mr Tidy]

Wow that's appalling Sean.

Glad you are feeling a bit better now, and I hope things keep improving.

 

[RAYK47]

N4LLY

I am gobsmacked. What awful service but not uncommon unfortunately.

My father in law had some pains and called his GP, GP said call ambulance now, you are having a heart attack. Called 999 and was told someone would be there in about 4hrs. So he called me and I took him straight in.

 

[Big Bad Boris]

I feel for you brother, I have a similar prognosis to your good self, but reading your story I haven’t been through anywhere near as much sh*t as of yet. You sound similar to me in that we don’t care about the odds….we will keep fighting for as long as possible for ourselves and especially our families, it’s tough physically and mentally (I felt some tears as soon as I mentioned my family)…..but hopefully we’ll both keep fighting as long as we have a breath in our bodies

OK mushy stuff done….on to practicalities.. Someone mentioned PIP above, apologies if you now know this, but just in case, you are automatically entitled to claim and receive PIP given your prognosis.. The way to go is to get an SR1 form completed by your cancer care team, we found then liaising with MacMillan was the best route as they have people that do this all the time and know how to get through the hoops. There should be minimal waiting time with an SR1 to hand and once approved you will be paid weekly, tax free. Like me you have probably paid enough tax and N.I. to have your own hospital wing somewhere… and it seems neither of us will be around to claim our state pensions, so don’t be at all worried about taking any benefits you can at this stage, you are entitled so go for it. Also if you get the enhanced level of PIP i.e. 12 points, which you should, you can also apply for a fast tracked blue badge, which will help with parking both generally and on hospital visits.. you can also apply for a ULEZ exemption if you need it. Also once approved for PIP someone close to you can probably apply for carers allowance (as my wife does).

If I can be of any help or support to you in terms of practical financial advice as above etc (we’ve learned a lot over the last few months) or even a simpler stuff such as e-man hugs then please just drop me a line, either here or via PM. I note there are sadly quite a few others on here with similar issues and we and they realise that only when you are in this position do you truly understand what it does to you physically and mentally. I have countless people giving me love and support, it’s fantastic, but occasionally only speaking ( or swapping messages) with someone that has been through the same emotions and walked in your shoes can help.

I am in for my second round of EDP chemo starting tomorrow, due to my ”specialism” it has to be done at the Royal Free in Hampstead so I will be residential, meaning I will have a lot of time on my hands if you do need anything.

Also like me it seems you are also using humour to try and tackle this disease, I think trying to look on the funny side of it all helps keep a positive mental attitude which is important. To that end, I usually have quite a few questions for my Oncologist when I meet him, this time I shall definitely be asking if they have a “swallow nurse”

 

[Nanu]

You guys dealing with this horrible curse never cease to amaze.

 

[N4LLY]

I feel for you brother, I have a similar prognosis to your good self, but reading your story I haven’t been through anywhere near as much sh*t as of yet. You sound similar to me in that we don’t care about the odds….we will keep fighting for as long as possible for ourselves and especially our families, it’s tough physically and mentally (I felt some tears as soon as I mentioned my family)…..but hopefully we’ll both keep fighting as long as we have a breath in our bodies

Gosh ! Thanks Kevan for your post here Trully appreciated
Followed your situation from the for sale thread, so glad that went smoothly 8)

Mentally am strong, it's the physical that keep's knocking me back. Sleep patterns are shot away with 4 - 5 per 24 hrs :thumbsdown:
I wake with what seems like a cronic hangover

Having a meeting this afternoon with my Cancer commander in cheif, so expect to get some update on how we are doing.

Have swallowed my pride and booked an appointment with the Pilgrims Hospice. Visiting them on Wednesday with an open mind.

Have a great time in the "Royal Free" and that all work's out good for you

PM'ing you my mobile number, we can be cancer buddies and skip, holding hands, through this

Thanks again, cheers.
Sean
8)

 

[ekimj10]

Hi Sean,
Totally shocked by the ambulance attitude, I've had four in the last four weeks and here (South Warwickshire Financial Trust) you mention cancer and it seems you are immediately shunted up the tree to No.1 on their list. Similarly with the Palliative Care Team and District Nurses and I think the GP prescription list.
One thing I meant to mention to you was a form called Respect, which I'd never heard of, but was asked by both the hospital and Palliative Care people. Basically a two sided page setting out questions how you want to be treated whilst under the care of any particular health organisation. I went through it with the Care team but it could be with a GP or hospital doctor.
Its totally private, no copies made and yours to keep it at home. I completed it with a Care doctor and my wife.
Google 'Respect' and a full explanation is given, I didn't find it too gruesome. All the best to you
This difference in how these area trusts operate is disgusting, no idea how the system works or who they report to apart from the Ministry of Health if that's they are still called.

 

[N4LLY]

X 3 Workhorse:

Today my son comes to collect the X3. His other half was hit head on by a "Drugged up" driver
No serious injuries.
The insurance have paid out and today want the loan car back. They have not found a good replacement yet so
using the X3 for now. The bargain workhorse paying for it's self again Have added to my insurance for a month
cost £ 112.-- which i think is a bit rich, she is 24 with a clean licence for 6 years :? Any ways the workhorse is being useed

Z 4:

Had a good run out yesterday

 

[1536Z4]

That`s some hit . Glad that she is "ok ". It can take a while to get over something like that .

 

[Nanu]

Lucky to get out of that one unscathed.

 

[N4LLY]

Yeah, some bad bruising but nothing to serious
They have taken the X3 and i hope they get on with it and want to keep it, should do, i have found it a pleasure to drive and very practical.
They can keep it and save the insurance money and put that towards the new house they are buying

 

[pvr]

It is a great car, I have done many miles in a 3.0 petrol version and it was excellent.

 

[N4LLY]

Beern a busy week. Good news and bad news :?

Monday:
It's been agreed and decided that all treatment is cancelled from immediate effect.
Last week's incident compounded the decision. another catastrophic bleed would be "not welcome"
Chemotherapy Cancelled.
Dental restoration cancelled.
ETC.
My cancer care moved from "Extending life to "comfort" so care moved to Pilgrims Hospice.

Tuesday:
4 work mates came round. Much, much laughter was had

HR Manager, loverley Natalie, called. She double checked the works life insurance.
I presumed it was void after my last official day (27th April). But No, it is live for another 6 month's after
so that could be a nice bonus for the "Ex" and the sprog's

Wednesday:
Z4 get's a nice run out as the sun is shining.

Specsavers (My 1st ever eye test) coz the are doing Tommy Hilfigger frames 2 for 1 8)
Eyes are perfectly fine, however i do need glasses (I knew that). However, unable to prescribe as i had been receiving
Chemotherapy. They my eye's could completly change within a week, so pointless. If still required i can re-book for 3 weeks time :roll:

The local branch of Bank to get the the "Ex" named on my account. That was fairly straight forward and just
needed a phone call to head office, so i did that later from home with the "Ex" availablke for questions.
Think was so straight forward and easy as had banked there for more than 40 years

Thern on to Pilgrims Hospice. Was not expecting much but was mightly impressed. Just like a country Golf club.
Asigned nurse was not pushy at all and accepted immediatly my priorities. 1: Pain releif 2: Sleep.
So they have allowed me to trial for pain: Oxycodone Hydrochloride :?
Will try 1st dose this afternoon when required.

Also been allowed a 7 day trial of Steroids. They are only 2mg, had 2 tab's already and swear i have a bit more energy

Thursday:
Sister visited, not seen for 10+ year's. We have both been busy all the time and could never get path's to cross. So that was nice.
"Ex" and Sprog's came round, handy as also not seen sister either and needed to collect the X3


Friday:
Day off = Yay

 

[N4LLY]

[ref]1536Z4[/ref], [ref]Nanu[/ref],

Forgot to mention,
Nurse at the Hospice has already put in a claim for "PIP" and at the same time
for a "Blue badge" they reckon in my condition i am eligiable
Some of these appointment's are a mile from the car parks after all. :wink: We will see.

 

[1536Z4]

in my condition i am eligiable

Shouldn`t be an issue considering your condition but then again I have been dealing with them for 17 years now and I never cease to be amazed how they ignore the medical evidence and assume that you are lying so make you go for an assessment . Not a problem though if you are legitimate just a pain . Thank you for sharing the photos with us . You must feel proud to have such a supportive family around you .

 

[ekimj10]

Hi Sean,
I can vouch that Oxycodene works for me, I've been been on it for a couple of months and ending up with a daily intake of10mg on slow release and approx. 10 shots of 2.5mg taken supposedly when needed. This totals 35mg per day which is quite a way short of maximum permitted. It was 12 a day once after various combinations of doubling up on the slow release and its taken around 3 weeks to arrive at this. There are downsides which everyone will tell you so I'll let you find that out, not all of them bad by the way.
On the subject of benefits, something we have never had, we were persuaded by one of the Palliative Care Team that Attendance Allowance should claimed which is a payment to me for all the additional work that someone close (my wife in this case) has to do that I cannot no longer do. I'm thinking here of you Ex who seems to be doing a brilliant job. There is means testing and payment is just over £400 per month, and it didn't take them long. It does go against the grain but when I see what's going on around us it becomes easier.
On a lighter note do you think we are indirectly funding the Taliban with all this opium consumption?
All very best to you keep on updating. Regards, Mike

 

[N4LLY]

[ref]ekimj10[/ref],

Hi Mike, they gave me 5ML max 4 times a day. I will only take as and when required anyway. Good to hear it works for you
This was not perscribed as such, just asked if anything stronger was available and they offered this to trial.
Reading the literature it may help with sleep ? We will see.

 

[1536Z4]

On a lighter note do you think we are indirectly funding the Taliban with all this opium consumption?

 

[ekimj10]

NALLY wrote
Reading the literature it may help with sleep ? We will see.
100% it makes you tired, sometimes only just make lunchtime. Whenever I have a meal, within 10 minutes of finishing I'm ready and can be away for an hour sometimes, the Care nurse said it's well known that the energy used in eating is high and if you haven't much to start with it explains a lot. All best

 

[N4LLY]

X3:
Son and fiance still using daily. Reported in yesterday they thought the Turbo had gone pop, lose of
power etc. I then remembered the air intake pipe coming off (See page 3 and picture) Totally fortgot about it.
Hannah dad had tools and got it re-fitted. All seems good now Phew !!

Z4:
Got a runout this morning to pharmacy to collect more meds. Including " Midazolam " I was expecting.
Plus 3 others i have alot of leaflet reading to do :?





Popped into Waitrose on way back, for essentials