N Gauge Forum

After a careful 2020 keeping her head well below the parapet to avoid Covid, my wife is currently residing in the Acute Medicine ward at our local hospital. :(

Prone to sinus infections, just after Christmas she had one of these bouts that usually react well to over the counter meds. Not this one though. It developed into a dry cough that just kept getting worse through to February, proving not to be Covid after a swab test. GP prescribed amoxicillin antibiotics. No change. X-Ray request took three weeks to complete after clerical Large Chicken :)-up and showed she had had  :hmmm: a chest infection, but more antibiotics dished out, amoxicillin and clarithromycin. Latter had odd effect of giving her phantom aromas of lilies and vanilla by turns but otherwise they did diddly-squat to alter her condition, that now included night sweats, exhaustion, and loss of appetite.
All this time she had not been actually seen by a GP, just talked to on the phone, and finally, FINALLY! last week her GP thought she ought to get a blood test done. Went to see the vampire at out local surgery and tried to see the duty doctor as advised by her GP (to physically check chest and throat) but told "there isn't one"! :o
Next morning a call from GP: get down to the hospital SDEC (Same Day Emergency Centre) as she has a strong infection of something unknown. :uneasy:
That was Thursday. She spent that fun filled day having every test under the sun, from more bloods, to CT-Scan, X-Ray, heart monitors............
But admitted to AMSS ward that evening and has been there ever since with multi-doses of I.V. co-amoxiclav (penicillin) that so far are not quite having the desired effect. The infection load had reduced a bit but is up again now, and last night she had a bad time and had to have more penicillin, paracetamol and a dose of oramorph as her coughing got so bad it made her feel she was struggling to breath for a while. Better this morning and I'm off to deliver more clothes and stuff and pick up the washing. She is going to try to meet me at the hospital entrance hall, but it's likely that won't happen and I'll just get her stuff exchanged via a nurse. The Covid Effect means strictly NO VISITING so I'm in limbo really, and as talking worsens her cough we are communicating mainly by text. Thankfully she is taking it well, all things considered, and is not bed-ridden, so we are both staying positive.

She has been a model of social isolation, and has rarely been anywhere for the last year. Twice to a shop with me, and once to see the grand-children through a window on their birthday. Other than that she has had a few quiet walks around our quiet village and once by the sea, but always away from anybody. So where this infection is from is a mystery. Main culprit/carrier must be me I suppose, having got too close to someone somewhere in Tesco's or the like. Or it just blew through a window. Who knows.

All in all, this just sucks. And they don't know what it is that is infecting her yet as the Haemotology Lab is still doing its stuff, weekend low staff allowing, so for now I've given it a name myself: Sod's Virus. :(

all I can say is ..

fingers crossed
try to keep up beat
have a wee dram.

we had the dreaded phone consult with our gp on friday 'looks like lung cancer', now waiting for the telephone consult with her consultant on tuesday as to what the state is, what is possible etc.

so far no signs of it spreading to the lymph  glands ? but until Pet scan reviewed, not known if it has spread elsewhere.

hopefully, in your SWMBO's case, the antibiotics will do their job, and she will soon be home, moaning about 'another  :censored: parcel of train bits'.

try to be positive, it's all we can do in these situations.

Very sorry to read your news, Mike. I do hope they can sort out what it is and get your good lady back on the road to recovery.

Some Other Damned  :poop: Virus.  ;)

I hope it is nothing too serious Mike and it is just that your wife is having an abnormal reaction to whatever it is. Hopefully it will not be long before you can get back to what is called normality soon.  :thumbsup:

@class37025 (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=311)

I hope everything works out okay Alan. I know it is not the same, but I was told about five years ago "it probably is cancer" and then told a couple of years later that "it probably isn't cancer". I have an idea of what you are going through and I have everything crossed for you.  :beers:

Sorry to hear your news.
I certainly hope things can be sorted out quickly.

Just back from a supply drop and managed to see her by meeting her in the entrance/lobby area. She is obviously fed up, with little news, no Doc visit today and no blood test done either, and a high heart rate in the 90's. Though nurses are good they can't do much for her other than keep doing what they do best.

Usual ward problem of one patient - it not so patient - demanding help and attention all the time day and night, but that's to be expected for some. Worse is the night nurse who woke my Sheila up when she was fast asleep last night to say "Here's your cough linctus love". A short conversation followed with Sheila pointing out she wasn't coughing, but yes has a cough problem, but does not want waking up when she is not coughing to be offered something that usually makes it worse. Nurse persists. Sheila drinks linctus. Makes her cough for ages, and was the precursor of the need for more meds later last night. Sheila is not exactly awarding merit stars to that one.

Tomorrow hopefully we'll get some answers/progress etc.

But it was good to see her, though it's not something we'll do again as it made her tired 'go for a wander' to meet me.

@class37025 (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=311)
All the best for your wife's treatment and recovery. Seems they are well on the case now.
Sheila has enlarged lymph nodes in her chest which they say is most probably the infection itself making them work hard, but of course until they rule other things out it's still a worry. Doesn't help when one friendly nurse (I mean that genuinely) said to her '.... and we need to keep a watch for sepsis.' Eek! :o

Ah well, Sheila has just texted to say she is feeling better after a doze and not having to wear a face mask that makes her breathing harder.

All will be well some day soon I feel.

Thanks to all for your kind thoughts and wishes. :thumbsup:

shades of the old ? joke ? about the nurse waking up a patient ..

"It's time for your sleeping pill"  >:(

Every patient in France used to be woken at 630AM for morning  tea. then the Health Minister was in hospital, and after experiencing this, decreed 730 or else!

i've had similar experiences!

Funnily enough, when I was in for Covid, the guy in the bed opposite used to get a sleeping pill at 10pm, even if he was asleep at the time. We had one guy in the ward who had a visceral cough. So loud it kept everyone awake. The doctor prescribed a cough linctus but he wouldn't take it (god knows why) so we all suffered with sleep deprivation . I was glad to get home as all I have to put up with here is the odd bout of snoring from SWIMBO.

Knowing from bitter experience just how difficult it is to get any sleep in hospitals (no private rooms for this pauper!) it is surprising being woken up to take something but I guess there are set times for meds, tea break etc and they just take the attitude "You need this and you're not going to sleep through the dispensation of it"

Quote from: daffy on April 11, 2021, 04:24:29 PM
Worse is the night nurse who woke my Sheila up when she was fast asleep last night to say "Here's your cough linctus love". A short conversation followed with Sheila pointing out she wasn't coughing, but yes has a cough problem, but does not want waking up when she is not coughing to be offered something that usually makes it worse. Nurse persists. Sheila drinks linctus. Makes her cough for ages, and was the precursor of the need for more meds later last night. Sheila is not exactly awarding merit stars to that one.

To be charitable to the nurse, like all the NHS staff she is probably exhausted and at her wit's end after 12 months of this, and not thinking straight. No comfort to your wife, of course, but worth bearing in mind. Like everyone else, I wish her all the best for a speedy recovery. and everyone else who has family and friends hospitalised at present.

Cheers,

Chris

Yes, fully agree what a great job all the staff are doing, and certain meds have to be administered on a strict timetable for greatest efficacy. In this case however Sheila had already asked another nurse to put a note on her file to say, effectively, "No cough remedies". Evidently this simply had not been noted by a nurse trying to do her best for all patients in a very busy 48 bed Acute Medicine ward.
I think that although Sheila was rather miffed to be woken and have this linctus thrust at her, the way she relayed the tale to me made it clear she found it as funny as she found it annoying.

Update: no change in condition but they have taken her off all antibiotics as they don't think they are doing anything. An observation with which we both concur.😆
Back to the drawing board?🤔 - or Haemotology in this case.🧛‍♀️

as usual a reflection on the difference between today's NHS, and the military hospitals I was very lucky to be in.

OK, Matron's rounds [lie at attention in your bed / sit to attention by your bed / stand to attention by your bed [depending on status]] was a PITA,
but for a thirty bed ward, you would have probably
1 x sister
5 x SRNs
5 x SENs
5+ x student nurses
plus orderlies.

not 1 x nursing MANAGER
a nurse
a couple of auxiliaries

I do sometimes wonder if those MPs who voted to destroy the military hospitals actually even think ' oops we  :censored: up'

probably not, just think of the so called savings.

when in both Cosford [from NI] [69] and Wroughton [73] RAF hospitals care was 110%, and often civvies [the lucky ones] were also admitted to help the local health authorities.

now, all replaced by IIRC a 'wing' at some NHS hospital, Selly something.

no disrespect to the NHS staff, but wouldn't it have been great to be able to move Covid patients into military hospitals, if any left [hospitals that is], and leave the NHS ones to do their normal jobs ?

it may have saved money in the short term [that seems to be all the politicians think of] but I cannot help but wonder how things would have gone if we still had the military medical facilities we had in the 70's.

but then, as I'm sure you all know by now, I'm a grumpy old git who hankers for how things were before the penny counters took over.

Sounds like a bloody nightmare. Having spent a full two months in hospital myself relatively recently, I can fully sympathise.

At least you guys won't get a bill for $72,000 dollars!

Chin up  :thumbsup:

Thanks George. :thumbsup:
One thing I'm always thankful for is the fact that the much maligned NHS (if we ignore the current fervour of support over the Covid situation that will probably see a return of complaints once the virus begins to fade from the front pages of the press) is free at the point of use for all. In that it is second to none, and I for one am ever grateful for that, having had a life dominated by ill health.

Hoping today for better news, as the Docs seem to be heading towards a plan whereby Sheila gets to go home, at least for a few days. It will all depend on today's blood test results, and one of the things they are now checking is for TB. As X-rays and CT-Scans have already been done and seemingly showed no signs, we are hoping that isn't what she has.

Hope is what keeps us going. That and spring-cleaning the house for her return, attending to the garden, working on the shed conversion into a summer house she has always wanted, and even doing the ironing! Got to keep busy.

Let's hope! I'm sure it'll be fine.  :thumbsup:

Quote from: Bealman on April 13, 2021, 05:03:29 AM

At least you guys won't get a bill for $72,000 dollars!

I note you haven't said that equates to 3s 6d in our money, George :D

Watch it. I bought a Triang Eastern guard's van for exactly the same price  :P

Quote from: Bealman on April 13, 2021, 10:34:54 AM
Watch it. I bought a Triang Eastern guard's van for exactly the same price  :P

For $72,000? I hope it was goldplate rather than tinplate  :smiley-laughing:

Quote from: chrism on April 13, 2021, 10:46:13 AM

Quote from: Bealman on April 13, 2021, 10:34:54 AM
Watch it. I bought a Triang Eastern guard's van for exactly the same price  :P

For $72,000? I hope it was goldplate rather than tinplate  :smiley-laughing:

It was obviously listed on eBay as 'Rare'.  ;D

Quote from: dannyboy on April 13, 2021, 10:50:10 AM

Quote from: chrism on April 13, 2021, 10:46:13 AM

Quote from: Bealman on April 13, 2021, 10:34:54 AM
Watch it. I bought a Triang Eastern guard's van for exactly the same price  :P

For $72,000? I hope it was goldplate rather than tinplate  :smiley-laughing:

It was obviously listed on eBay as 'Rare'.  ;D

And if it was only gold plated , you woz robbed! ;)

well, we've had the dreaded telephone consult, and it is good news and bad.

there is no sign of any cancer other than in the lung,
but it is 96% certain that it is lung cancer.

CT biopsy is not being considered, and SWMBO is being referred to Guys Hospital in London with a view to having surgery rather than radio therapy in Brighton, 6 weeks of daily visits  !

next step is most likely a telephone consult with Guys.

not as bad as it could be, thank goodness.

now I just need to convince SWMBO of that.

Very sorry to hear the news - no spread is good, and supports the surgical approach.

you can always stock up on goodies at the Borough Market - nearby - to take with the fruit!

Alan, good to know (if good can ever be the right word in this situation) that your wife's cancer has been determined not to have spread beyond her lungs and is operable. Sounds like a pretty firm treatment plan is to be followed, so my best wishes to you both for the coming weeks.

Docs are still struggling to pin down Sheila's infection. Yesterday was humble pie day (not a tribute to Jerry Rafferty and Billy Connolly) as her infection count proved to be at its highest level so she's back on antibiotics. Stronger ones by drip cannula rather than syringe injection, that make her very tired.
Today's fun activity for her will be a Bone Marrow Biopsy, which she was advised not to Google on account of all the tales of fear that, in most cases, prove over-exaggerated. I guess her platelet count must be off kilter or something and a BMB is a good course of action when trying to pin down an infection of unknown origin. All the other possible results of a BMB I will ignore as being pointless to worry about before it is done.
So fingers crossed it isn't too painful for her and a hope for a diagnosis and clear way ahead.

Good luck, Bonny Lad.  :thumbsup:

Quote from: class37025 on April 13, 2021, 03:09:02 PM

there is no sign of any cancer other than in the lung,

not as bad as it could be, thank goodness.

As you say Alan, not as bad as it could have been and at least it appears to be confined to the lung. Being the eternal optimist that I am, there is a 4% chance it is not cancer.  :thumbsup:. Whatever the result, I wish you both well.

Quote from: daffy on April 14, 2021, 06:13:30 AM
All the other possible results of a BMB I will ignore as being pointless to worry about before it is done.

I do so agree with that way of thinking Mike. Why worry about what might or might not be? Worrying will not affect the result of any investigations, but may cause other problems. Once the results are to hand, that is the time to think about what might be.

Quote from: daffy on April 14, 2021, 06:13:30 AM
So fingers crossed it isn't too painful for her and a hope for a diagnosis and clear way ahead.

As I put in my previous post to Alan, I wish you both well.  :thumbsup:

The Bone Marrow Biopsy procedure took 15 minutes and was entirely painless and no trouble at all, if a little "weird", as she described it. The guy even took a bit of bone for testing "while we're there". Only discomfort has been some bruising pain once the local wore off. Results won't be for 7 to 10 days.

More blood tests today, looking for anything and everything now, Latest mentioned condition is Brucellosis, deemed as unlikely but some symptoms match so.......  Again that will take 7 to 10 days to check. At least determined as not TB, but nothing else either found or ruled out yet.

Needs to stay on I.V. antibiotics for some days yet, closely monitored as condition up and down like a yo-yo. Not looking good for a chance to come home for a good while yet, so more fun days and nights in what she calls the "madhouse".😳

I think we might have to cancel Christmas.😉😄

The sun rises on Sheila's 11th day in hospital and still the quacks have no idea what is infecting her.😟
They've even checked for Leishmaniasis, though results for that, like all the other things they're testing for, will be a week away.
Fingers crossed this week will see a positive development, and maybe a return home - if only to have to keep visiting the hospital for drug top ups and stuff until she is well again.

Keep looking on the bright side, Mike.

I can see why your wife calls it the madhouse. Having spent two months in one, I agree completely. I had a PIC line put in for instant delivery of antibiotics near my heart, and that got infected... ended up with two more.

Chin up and the both of you battle on. I'm sure things will get sorted.  :thumbsup:

Starting to be a bit of a saga Mike. Hopefully Sheila gets a diagnosis soon and the right treatment can be started.

Sheila starts a holiday today! :thumbsup:

Okay, so that's in the manner of a tabloid newspaper headline, as the 'holiday' the Doc has in mind was for her to be taken off the antibiotics (again) it see how she fares. So cannula out this morning ten minutes after a nurse had just put a new one in😕), and now awaiting a PET scan and an MRI scan, the latter on her head as she is having a vision problem.
They are also testing for all manner of odd diseases, including half a dozen tropical ones he mentioned.

Sadly after a good nights sleep - for a change - she now has a raised temperature and feels rubbish and not at all like eating.

But at least the new Doc is right on her case and everything is being done that can be and with very little delay.

All best wishes to you both.

Kindest regards.

John

Many thanks for all the good wishes. :thumbsup:  Much appreciated by us both.

Good and bad and odd developments:
It's been a strange week. The good news is that the MRI and Bone Marrow results showed nothing  :claphappy: , and blood cultures all came back with no problems identified.
But on Friday the PET scan that the doctors had arranged by "moving heaven and earth" to fit her in as soon as possible was subject to a total and complete mess up (I'm being very polite about it now) by the Transport Department that resulted in Sheila being in tears as it will not now be done until Wednesday afternoon. :censored:
Whoever booked the transport from Boston Hospital to Lincoln Hospital was unaware of a change in procedure whereby they should tell the transport lot the time of the scan appointment and transport would be arranged to ensure she was there on time. In Sheila's case this was a 9:00am scan at Lincoln, with transport expected to collect her between 7:30 and 8:00am. However the nurse who booked it put the time down as 7:30, meaning the time to collect, so at 6:00am a call was made to the ward asking if Sheila was ready for immediate collection for a 7:30 scan, which of course she wasn't.
Then it all went Pete Tong! Rather than somebody - anybody! - realising the error and rearranging the transport time to 7:30, they did ab-so-lute-ly nothing!!! Even the ward staff, who came on shift sometime after 6:00, were not informed, so they just got Sheila up and ready for collection at 7:30! By 8:00am with Sheila sitting on her bed all expectant like, somebody realised something was wrong and that's when the Doctor just visiting the ward on his rounds at that moment went ballistic.
But it was too late. The appointment could not be kept, and I can imagine some very angry phone calls ensued. After a lot of effort by a second doctor a new appointment was made for the first available scan slot. Wednesday afternoon.😟 And that was only possible through some juggling of other scan appointments. (PET scans are expensive, lengthy processes, and much in demand.)

Sheila was very stressed, upset, hacked-off, angry, shaking, and disappointed all because some idiot hadn't got the wherewithal to recognise what was a simple mistake and lack of communication that could so easily have been put right.

Anyway, despite an odd development (more on that in a moment), her bad day was not over yet!

She had an appointment that very afternoon to see a Consultant in the Eye Department of the hospital she was in for her double vision problem. At 2:20 she was taken down to the department for her 2:30pm in-patient appointment, taken through the Eye Dept waiting area with its crop of outpatients, and into her own little room. And there she sat for half an hour.  A nurse came in, Sheila asked for a drink, but was directed to the machine along the hall (Sheila has zero energy and zero money), but after another 15 minutes the same nurse brings her a cuppa Rosie Lee. Another 55 minutes go by before she gets called in to see the Consultant and his assistant nurse!
Expecting a detailed examination and maybe a scan of her eyes (she has been down this road before for anther eye condition) she was most surprised to find that all he did was ask her to follow his moving pencil, shine the usual light in her eyes while looking through his scope, and announce he could see nothing wrong, they would do a follow up in about two weeks time, maybe a scan, and that was that! All of five minutes, start to finish and Sheila on her way back to the ward, confused, unsatisfied, angry, hacked off and stressed. Okay, so the morning's shenanigans hadn't helped, but a five minute check after a 100 minute wait for an in-patient with her history was just .....   (Family Forum: language self-Moderated.)

So now we come to the 'odd' and hopefully interesting bit of her day.
The Doc who went ballistic saw fit to read Sheila's entire file of notes that morning and then, with a second doctor, asked to chat with her and give her a full examination. He could find nothing untoward during the exam, and taking all her temperature and heart rate history into account, as well as the fluctuations in infection load found in her blood, he then put forward what he called a "5%" theory. In short - and over simplified - he wonders whether the cough she developed in February from her sinus infection since Christmas might have cleared up in time WITHOUT the use of antibiotics prescribed by her GP. Since then she had been on various antibiotics practically continuously, each stronger than the last, until now she was on one they would give for sepsis as a first very powerful line of attack. So his theory, 5% likely as it may be, is that it is the antibiotics themselves  that might be the reason the cough persists, why she is so drained, and why her blood count for infection and haemoglobin levels are so out of kilter.
So now she is off ALL meds, other than paracetamol for headaches etc, and they are closely monitoring her reaction. So far she has had one bad night of raised temp, heart rate and sweating, but that subsided as fast as it appeared and at the moment, touch wood, she is okay. Tired, but okay.

All very odd, but maybe, just maybe this Doc is right. After all, delayed PET scan notwithstanding, she has had every darned test under the sun and they've found no more than a touch of anaemia to account for her condition.
Time will tell.

so sorry to read this.
stress on stress on stress is not what she needs.
but,
it sounds that the Doc has maybe got it right, even if only a 5% chance that is what it is.

fingers crossed he's right, and she will soon be back home.

Sadly it's a case of some going above and beyond, and others plumbing the depths of ineptitude.
Even to me, a layman, what the doc is saying about the antibiotics makes some sense, and I really hope he is correct. It's only when you've been in hospital for any length of time you realise just how stressful it can be. Lack of sleep, being prodded and poked at any hour of the day, not being told what's going on etc.. I feel a huge empathy with your good lady, Mike, and hope someone can make some sense of what is going on very quickly.

Thanks Mick. :thumbsup:
One good thing since Thursday is that a new admission needed close care next to the Nurses Station. Sheila was in that bed so they moved her.
To a singje room complete with openable window! :claphappy:
Only way she will give up her squatters rights is if they need it for an isolation patient sometime. :D

got back this morning from walking HB, to be greeted with 'Guy's have phoned, they'll phone back as I told them you were out with the dog'.

about half an hour or so, phone rang and it was a very nice man from Guy's, who then did the tele-consult.
took about half an hour, absolutely no rush, and made sure we were both understanding the proceedure and risks.

looks like SWMBO is going to have a robot poking around in side here, not sure if CPO or the other one, but keyhole surgery anyway. about a week in Guy's, and before that we need to both self isolate for a week [note to self, stock up with scottish water  :beers:]

they are looking at removing one of the lobes on her left lung, and that should sort the problem [ :hmmm: 25% reduction in lung capacity, does that mean a quieter life for me ?]

she's being added to the waiting list, which apparently is around four weeks, amazing in the situation the country is in at the moment.

so great news all round, and SWMBO is happy with it all after we'd gone over it again after the call finished.

That sounds like great news, Alan. :claphappy:

At least you now have something positive Alan. I hope things work out well for you both.

she is certainly more relaxed now than I have seen her for several weeks, mostly down to the very caring way the teleconsult was handled.

Alan, sorry I missed your kind comments a few posts back. Thanks.👍

Good news that your wife's surgery is soon to be done. Robotic surgery! What a wonder modern medicine is. Best wishes to you both and let's hope the whisky and the isolation don't wear you down too much over the next four weeks.

As for the 25% reduction in lung capacity being possibly beneficial for you:


Dream on mate! :D

The withdrawal of meds for Sheila has left her very tired and lethargic. One fair nights sleep, but last night was rubbish, with her cough plaguing her all night.
Monitoring continues but this afternoon she had a bad episode where her heart rate suddenly went bonkers, fluctuating rapidly with a high of 146bpm. They did an ECG and gave her what I assume were beta blockers to slow it down to a steady rhythm, with a warning that she may get some palpitations for a while. All okay at the moment, and hopefully it should mean she has a better night. Fingers crossed. The coughing subsided all day - except when she had to talk on the phone to this idiot at home. ;)

So although I'm ostensibly tee-total these days, this ever-changing and long-running  roller coaster ride saw the gin bottle get opened tonight for a small glass of steadying fluid.

I would hope / assume that as the drugs clear from her system, things will improve.

unfortunately when you have been on any drug, stopping it does not mean it is not still working in your system, and it sounds as though she has been on some very potent drugs, but hopefully they will soon be out of her system, and fingers crossed the doc's 5% chance will prove to be correct.

I'm sure I speak for all our members when I say our thoughts and best wishes are with you, and your good lady.

Big day today. A PET scan this afternoon is the best chance they have of finding what ails my good lady.
She is now very tired and 9 weeks of illness have taken their toll, so much so that she is unsteady on her feet and generally weak. That second arrhythmia episode has now led them to put her on beta blockers and anti-coagulants as the ECG they did shows she has atrial fibrillation. Whether that will clear once they resolve her overall problem is of course unknown.

Fingers well and truly crossed for a meaningful outcome, and not one where the Docs are back to more head scratching.

Everything crossed for you.  :thumbsup:

Wot David said.
Atrial fibrillation can easily be treated with a couple of pills (in my case aspirin and a statin since 1993). The one the medics don't like is ventricular fibrillation.

Thanks guys, and funny you mentioned the Afib/Vfib difference Mick as I was just this minute reading about that!  :)

Mammogram done, off to Lincoln in ten minutes - hopefully! - and some good news after a chat with an Admin lady: they are almost ready to start structured visiting! :claphappy:  Looks like that could start as early as next week. 😃Not that I want her to still be in hospital just so I can visit, you understand.🤪

about half an hour ago the telephone rang, and it was a very nice lady from admissions at Guy's.

short story is self isolate from the 4th May, on the 8th a courier will arrive with a couple of swab tests, wait, and take them away.
SWMBO will be admitted on the 11th, have a few tests done, then surgery on the 12th.

everything explained, and a letter to follow.

so, hopefully by 19th, a quieter SWMBO should be home  :thumbsup:

really can't believe she's got a date so quickly.

is there a score of 11 out of 10  :hmmm:

I guess the isolation phase will be lighter to bear with fixed dates and some hope...
I wish you both the strength and the luck to aid in success and a sound recovery.

Agreed, Having such an early date set and with a definite timetabled plan is fantastic. Great news.

thank you all for your comments.

so, @daffy (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=5634) is there any equally positive news on your good lady ?

Thanks for asking Alan.  :thumbsup:
Too early for results from the PET scan which might be today or tomorrow or.... 🤔 but the mammogram was clear, as was already suspected from earlier examinations and tests, but relieving  all the same.

Good news is that she slept well and felt bright and breezy this morning, relatively speaking, with all obs 'perfect'.👍

We have an answer, though the scan results still need full evaluation for definition and certainty.
It seems she has arterial vasculitis of some form, the condition probably in its infancy and is apparently limited to her chest area. She has been immediately put on an aggressive course of steroids in the hope of stopping it in its tracks or at least bringing it under control.
She will now be put under the care of a  vascular team who will confirm full diagnosis, future tests and treatment and prognosis. This will all be done in clinics and outpatients as, subject to how this night goes and side effects of steroids, she will be coming home today!

One of the causes of vasculitis is an allergic reaction to drugs like the ones she has been on, though it's known to be most common in 70 to 80 year old white caucasian women. However, defining the true a cause is next to impossible. In Sheila's case the things that led the Docs to actively look for it in her scan was the double vision she has developed in the last weeks, as well as an eye condition she had had sorted out a few years backs, a right eye infarction, or bleed on the retina. Apparently that is a classic sign of someone who may be vulnerable to vasculitis. According to one of the Doctors, they had discussed matters prior to the PET Scan and in light of the failure to find anything thus far despite loads of tests etc, they felt the scan would probably show either vasculitis or carcinoma. :o

So now we live in hope that in her case this infant vasculitis can be hammered into submission and life will return to normal - bar regular check-ups, scans and some form of drug maintenance program.

Fingers still firmly crossed, but today is a good day. She's coming home! :claphappy:

Great news @daffy (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=5634)  :thumbsup: :thumbsup: :thumbsup: :thumbsup: :thumbsup:

it looks as thought the doc's 5% was a good guess, at least in part.

it will be great for her to get home and sleep in her own bed ......

just don't forget to wake her up to take her sleeping pills  :smiley-laughing:

Good news Mike, and good luck Alan!  :thumbsup:

Quote from: Bealman on April 30, 2021, 09:07:16 AM
Good news Mike, and good luck Alan!  :thumbsup:

Wot he said ;D

That sounds like good news Mike. Hopefully your good lady responds well and things do get back to some sort of normal. :thumbsup:

Thanks everybody :thumbsup:

My biggest worry now is that she may ask me to get her a.....





Bell!  :uneasy:

:D

ding, ding, ding,  :smiley-laughing:

did all go to plan ?

hopefully she is now home, and possibly checking to see what has arrived in her absence  :-[

take care of her, and if the bell gets too much, I could send you some of HB's DNA, it is very strong in selective hearing  :smiley-laughing:

Picked Sheila up from the hospital at 5:30pm in the rain, but not a cloud in the sky as far as we were both concerned. :claphappy:

She was bright, cheerful, and carrying a bag of numerous drugs she will have to take for a long time to see off this very serious condition. Besides a large dose of daily steroids - now 4 pills rather than the 12 but the over-all dose is the same - she starts today on a very potent and potentially dangerous drug that will suppress her immune system as vasculitis, simplistically speaking, is the result of your own body's immune system attacking that which it is supposed to defend. The dose of this is low at present but must be increased gradually every two weeks until it is roughly four times stronger. This drug, Methotrexate, is more commonly used with cancer patients and comes with copious warnings and can have some rather frightening side effects, which we hope she never gets to experience. :no:

Long road ahead and sadly due to the effects of the drugs she must take great care to avoid any chance of infections, including colds, so sadly it seems the grandchildren's long wait to see their 'Nanny' will not happen a while yet. Covid-type restrictions will continue for us even if the rest of the country is coming out of lockdown. :(

But that imposition means nothing. She is home, she is smiling, she seems to be sleeping well in her own bed - still asleep this morning -  and the Docs are confident, as am I, that they can crack this.👍

Apparently it is a very rare condition, so much so that one if the Docs is writing the case up for expected publication in the British Medical Journal. Ah, fame at last for SWMBO! - though her name and personal details will be withheld of course.😁

P.S. - she mentioned a bell within minutes of entering the house! :goggleeyes: :o :uneasy: :doh: :(

Good news.
I have been following the progress of this thread with interest and am glad things seem to be on the right path. That drug Methotrexate is also common amongst people with Rheumatoid arthritis where it does a lot of good.

I hope life returns to a good level of normality soon.

Good news indeed. Hope things continue to improve.

Great news, Mike :claphappy:

I'd suggest to everyone they do NOT read the leaflet that comes with any meds or you'll scare the hell out of yourself and would probably take nothing!

All the best, and the necessary strength to get through this period. Knowing what you have to fight is the first glimps of light at the end of the tunnel.

Some good news there Mike.  As Alexander says, knowing the enemy is the first step in beating it - and being at home will be a good medicine.  :thumbsup:

Quote from: daffy on May 01, 2021, 06:37:02 AM
P.S. - she mentioned a bell within minutes of entering the house! :goggleeyes: :o :uneasy: :doh: :(

can you not use the excuse that you need to isolate as a reason for not being able to go and get her one,  :thumbsup: or is there already one in the house  :'(

Many thanks to all for your comments and  support.  :thumbsup:

Quote from: Newportnobby on May 01, 2021, 09:11:02 AM
Great news, Mike :claphappy:

I'd suggest to everyone they do NOT read the leaflet that comes with any meds or you'll scare the hell out of yourself and would probably take nothing!

Sheila has just taken the first three of the Methotrexate (its a weekly thing) from a little plain box with just the hospital dispensary details on it and no leaflet. But.......  one of her Docs went to great lengths to tell her of all the possible side effects so she was fully conversant with them.

Happily another Doc, the one who first suspected she might have vasculitis, gave Sheila her mobile number when she was being discharged and they have had a number of text chats today about various things, especially these little wonders. One point of note that came out this morning's chat was that should she throw up at any time while taking them then the clear-up must be done wearing rubber gloves, as the drug contains cytotoxins that can cause all sorts of issues if they get on the skin, in the eyes, mouth, or nose.😱

Wonder who the poor sap is who has to do that then. :hmmm: ;) :D

I'm guessing her loving @ daffy  :hmmm: :sick:

but you love her, so it will be no problem  :sick2:

looks like you have two options
https://www.researchgate.net/profile/Vukoman_Jokanovic/publication/279179204/figure/download/fig8/AS:613938014220308@1523385637365/NBC-clothing-including-Saratoga-TM-suit-2-THE-CHARACTERISTICS-OF-TEXTILE-PROTECTION.png (https://www.researchgate.net/profile/Vukoman_Jokanovic/publication/279179204/figure/download/fig8/AS:613938014220308@1523385637365/NBC-clothing-including-Saratoga-TM-suit-2-THE-CHARACTERISTICS-OF-TEXTILE-PROTECTION.png)
depending upon whether it's sunny or raining  :smiley-laughing:

Quote from: class37025 on May 01, 2021, 04:21:22 PM
I'm guessing her loving @ daffy  :hmmm: :sick:

Maybe, though I do have a plan!  :)

- twice now a neighbour has said to me "If there's anything we can do Mike, anything, just let us know."  >:D

Quote from: daffy on May 01, 2021, 05:26:54 PM

- twice now a neighbour has said to me "If there's anything we can do Mike, anything, just let us know."

Get a toilet roll, unroll it a bit, go to the neighbour and say, "You said to let you know if you could do anything. I have done a bit of a list".

 :laughabovepost:

for some reason previous link does not seem to work, so for both sunny and wet conditions, perhaps this

https://www.bing.com/images/search?view=detailV2&ccid=cLB%2fqHSR&id=6A3BE405BDBAAB959FF2F4079182A60BFD4A4C69&thid=OIP.cLB_qHSR1VOGv8IBM_4G7QHaJ4&mediaurl=https%3a%2f%2f2img.net%2fh%2fi51.photobucket.com%2falbums%2ff355%2f44tt99364asd%2f010_zps4ppzz6cv.jpg&cdnurl=https%3a%2f%2fth.bing.com%2fth%2fid%2fR70b07fa87491d55386bfc20133fe06ed%3frik%3daUxK%252fQumgpEH9A%26pid%3dImgRaw&exph=800&expw=600&q=nbc+suits+pics&simid=608038064919103467&ck=64F67A5C1F0B1357B6857CF04FA6553B&selectedIndex=22&FORM=IRPRST&ajaxhist=0 (https://www.bing.com/images/search?view=detailV2&ccid=cLB%2fqHSR&id=6A3BE405BDBAAB959FF2F4079182A60BFD4A4C69&thid=OIP.cLB_qHSR1VOGv8IBM_4G7QHaJ4&mediaurl=https%3a%2f%2f2img.net%2fh%2fi51.photobucket.com%2falbums%2ff355%2f44tt99364asd%2f010_zps4ppzz6cv.jpg&cdnurl=https%3a%2f%2fth.bing.com%2fth%2fid%2fR70b07fa87491d55386bfc20133fe06ed%3frik%3daUxK%252fQumgpEH9A%26pid%3dImgRaw&exph=800&expw=600&q=nbc+suits+pics&simid=608038064919103467&ck=64F67A5C1F0B1357B6857CF04FA6553B&selectedIndex=22&FORM=IRPRST&ajaxhist=0)

Quote from: daffy on May 01, 2021, 06:35:27 AM
she starts today on a very potent and potentially dangerous drug that will suppress her immune system as vasculitis, simplistically speaking, is the result of your own body's immune system attacking that which it is supposed to defend. The dose of this is low at present but must be increased gradually every two weeks until it is roughly four times stronger. This drug, Methotrexate, is more commonly used with cancer patients and comes with copious warnings and can have some rather frightening side effects, which we hope she never gets to experience.

My wife was put on that for Rheumatoid Arthritis, along with other medications. They have left her constantly tired (although the illness does that, so it may not be the meds) and her hair started falling out - the latter was soon solved by starting on folic acid tablets ... one to bear in mind if needed.

@stevewalker (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=5329)   Hi Steve, sorry to hear your wife is struggling with R.A.  Like her Sheila is always tired, a product perhaps of the anaemia she has that they think is part of parcel of her condition. So she has been given folic acid to help,with that, though her Doc also pointed out the hair loss issue with Methotrexate and commented with a smile that it would help that too!🙂 She has to take the Meth (🤪) each Saturday, starting yesterday (obviously designed to potentially ruin her weekends😆), but cannot take otherwise daily folate the same day.

Good news is that so far - the Doc's said early reactions to Meth are common - she has had no adverse effects to speak of.🤞

Best wishes to your wife for an improvement in her condition.👍

Joking aside regarding 'the bell' what might be useful would be a baby monitor setup so you can talk over distance so being able to check if it is urgent or if it is a chat or just a cuppa - said cuppa can then be made on the way to visit.
Just a thought depending on the layout of the home and most importantly the location of the train room...

Hope things continue to improve.

"Baby monitor" might sound too much like surveillance or monitoring.
Maybe a walkie-talkie might sound more like  interactive communication and not like loss of control...

Quote from: AlexanderJesse on May 02, 2021, 05:04:42 PM
"Baby monitor" might sound too much like surveillance or monitoring.
Maybe a walkie-talkie might sound more like  interactive communication and not like loss of control...

I did wonder about also suggesting WT but then thought that required the ability to press to talk - same as ringing the bell and dependent on the situation might be an easier way to gain attention.

Maybe carefully word the suggestion - although naming it something other than Baby Monitor may be all that is needed... SWMBO Immediate Attention System (I checked that wasn't going to be a dodgy acronym!)

Thanks for the suggestions guys. :thumbsup:
We live in a bungalow and her bedroom is just across from the lounge and kitchen and most other rooms from where, unless I'm outside, I can usually hear her call me but not always easily discern what she is saying. So some form of aid would be a fair idea.

A baby monitor would mean I would hear all manner of sounds from the room, ever wondering which ones I should worry about.🤔 Her snoring would also ruin my viewing of the Snooker World Championship 😆 although it might be preferable to some of the BBC commentators uncomplimentary observations.😠

A walkie-talkie has its merits, but as calls between our mobile phones are free we could use them, and would and do in certain situations, like when I'm in the garden (unless of course I have turned mine off to gain a few minutes respite from her demands!🤪 - only kidding.😆)

Shouts to each other get confusing: again is it urgent, or just the third time she has tried to get my attention to draw the curtains as the sun is in her eyes.🤔

And of course there is the confusing issue of when she is talking to herself (usually when using her iPad), or I am yelling at aforementioned BBC commentator, or some such outburst against the various stupidities that litter the world and assail my senses through the wonder of the www, or from the 16:9 sound and vision machine across the other side of the lounge.

So it seems thus far that a bell might be a darned good idea, to be used of course with constraint in situations of urgency or emergency. If used for all and any situation or need I am afraid that eventually she may require medical assistance of a quite different type than she has recently experienced. 😉😱


Please note that all that is written above is in jest.👍 Well, some of it! 😆. So far things have been fine with her just calling me, by voice if I'm indoors or mobile phone if I'm out of the house. A bell however still makes good sense as an easy to use, unmistakable and simple back-up while I'm in earshot. 👍

Time to practice your Lurch impression (from the Adams Family TV show)  :)

😆

As things stand and the way I'm slowly getting worn out, give me an apron and a couple of bowls of soup and I'd be more like Mrs Overall (Julie Walters).😉

you are not beginning to wish they'd kept her in another couple of days ?

if not,

then suck it up, turn the radio up, and hope it won't last too many months >:D

seriously, at least she's at home, so that is something. :hmmm:

Phew! For a moment there Alan I thought you were going to say years !😱

Months are fine, even if it's lots of them.👍

well, SWMBO and I are now locked into self isolation for seven days, apart from her run up to Guys on thursday for some tests, by hospital transport so not breaking self isolation.
then, while she is in Guys I'll continue to self isolate to ensure she has nothing nasty [apart from HB] to come back to, and I'm then expecting us to self isolate for another week just to be on the safe side.

HB will be walked daily, of course, but by a masked 'me', and we shall not be stopping to chat with other dog owners as we usually do. regulars have been advised and understand.

Saturday a courier will deliver swab tests for MRSA and Covid, wait, and take them back to Guys, then tuesday, all being well, she will be whisked away to London again by hospital transport.

while I think I have laid in sufficient internal sanitiser, I do have a stand by plan for a neighbour to pick up and then leave on the front door step.
hopefully all bases covered. :hmmm:

so far going well, while walking HB have waved, from a distance, to various owners I would normally have chatted to, and otherwise managed to avoid all others.
thursday SWMBO was collected by a very nice guy from hospital transport, and taken off to Guys for her test. :thumbsup:

later an equally nice guy brought her back again  :hmmm:

this morning her Covid and MRSA swab kits arrived by courier, were done while he waited, and then taken away again.

all quiet now, except for getting her to pack, till she is taken away again for her admission on tuesday.

unfortunately, being bored, she has put pen to paper and created a list of 'suggested' jobs I could do while she is in hospital  :'(

One week on from earnest and targeted treatment beginning Sheila had a trip to the hospital yesterday morning for a blood test, our local GP surgery internal communication system being a right mess (aren't I the polite one today :) ) so it couldn't be arranged there.

Everything happens for a reason, so they say, and after invading the Boston hospital pathology department unannounced - "You can't come in here without an appointment!" - an explanation from me soon cleared the air and the now kindly phlebotomist (ain't that a nice word) completed the blood-letting ceremony.👹  I then wheeled Sheila off to the SDEC ward (Same Day Emergency Care) to await the results as previously instructed by one of the three doctors who made up her hospital care team.

Of course I was thrown out by the Staff Nurse and spent the next two and a half hours kicking my heels and wondering what was going on. At midday I phoned Sheila who asked me to come back to the ward as they were about to discharge her. As I stood outside the key-pass protected doors a doctor asked who I was waiting for. Unbeknownst to me this was her Consultant who was just on her way to see her, and she asked me to follow.  In a side room sat Sheila in the company of the two junior doctors, all with smiles on their faces. On a screen between them were Sheila's blood results and after the Consultant scanned them another smile broke out.

In fact these three medics were amazed at the results! The key factor, the inflammatory marker level, was the cause of their joy, reduced from a high of 235 (and a range from 175 to 235) and now at 2.90. That decimal point is NOT a mistype! 2.90 is a normal level!

NO INFLAMMATION!  :claphappy: :bounce: :thumbsup:

Sheila still has Large Vessel Vasculitis, but it has been very rapidly and unusually brought to heel, and it may give problems in the future, but with continued drug treatment now and a plan to manage the condition once other markers return to normal or as normal as they can hope, we both have big smiles on our faces and the release of tension is amazing. Things will be different in our lives, and the road to recovery is yet a long one, with at least another three months of strong drugs that suppress her auto-immune response before a less demanding regime of control drugs is established for her future.

Today, as I'm sure you can imagine, is a new and brighter dawn that, at times,  we thought might never be.

And thanks to all for your kind thoughts and wishes, and for reading my rather depressing and lengthy posts. ;)

To the future!!!  :beers: :beers: :beers:

And Alan @class37025 (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=311) to you and your wife, may this week bring you all that you wish for. My thoughts are with you.
:

Wonderful news, Mike, and as Murray Walker once said "I'd best go now as I have a big lump in my throat" :wave:

what great news  :thumbsup:

That is excellent news Mike, hopefully Sheila continues to go from strength to strength.

And @class37025 (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=311) , we all hope that you can report similar joyful news Alan in the near future.

Life can be a bit of a so and so at times, but it is always nice to hear of someones good news.

Great news Mike. Long may things remain settled!

Meanwhile my wife has managed to re-arrange her much delayed second vaccination and her next set of injections for the RA, so hopefully she'll be at least somewhat mobile for the summer.

although Val's admission letter said to phone the ward between 09:00 and 10:00, and with transport saying she'd be picked up any time after 10:00, I took a chance and phoned the ward at 08:15, if there was no bed, then at least we could call transport and hopefully catch the driver before a wasted journey.
spoke to a very cheerful and helpful staff nurse, explained why I was phoning early, and she said Val was down for admission today as arranged, though as they were struggling for beds she might be admitted to another ward to start with.
11.00 the usual cheerful / helpful driver appeared and whisked her away towards London.
where do they find these guys ?
the guy who brought her swab tests down saturday was also of this type, as were both drivers who took her up to, and home from Guys thursday for her lung function test.
a resounding  :thankyousign: to all of them.

she'll phone when she gets there, and again this evening when she will hopefully know what time I can phone tomorrow to see how her surgery went.

so, fingers crossed, and list of jobs perused  :'( still I wouldn't be without her  :hmmm:

HB is already playing up as 'mum', ie the spoiler of HB, is not here.  :smiley-laughing:

update ....

all the positive thoughts on here have obviously been working, SWMBO had her surgery yesterday afternoon, back to the ward from recovery about 19:30 ish, so a long day for the surgeons and theatre staff  :thankyousign:
spoke to her this morning and she is fine, though in some pain, which will no doubt be resolved either by meds, or a large wooden mallet  >:D
she has already asked how the list of jobs is doing  :'( so not much wrong with her.

next stage I suppose is the results on what was removed, and then a plan for treatment going forward can be made.

she was told she'd be in for 5 > 7 days, so that could mean her returning home monday, I'd better get weaving on the jobs list  :-[

thank you all for your good wishes, hopefully they have worked and SWMBO will get a clean bill of health.

another update ...
just has a phone call from SWMBO to say she is being discharged later this afternoon, and they will be arranging the transport to get her home.

she had an x-ray thursday evening, and it showed all clear so no remaining signs anywhere.
physios on thursday and friday have been giving her a workout, and they are happy for her to be at home.

only fly in the ointment is the lack of progress on the jobs list  :-[ :'(

maybe she won't notice  :hmmm:

thank you all for your comments and good wishes. I was really worried it would not end up well.

Great news Alan!  :thumbsup:

Isn't it so good when your worst fears aren't realised? :)

Now, I'm rather concerned to hear you haven't kept on top of the jobs list. :hmmm:  But that's only because I've slightly failed on that front too! :D

My best wishes to your wife, and long may she be able to keep writing lists for you.

:beers:

many thanks, but, has your good lady worn the bell out yet  >:D

That's great news, Alan. I'm sure you're pleased to have your good lady back at home giving you GBH of the earholes rather than her being in hospital with so many unknown theories as to what was wrong.

Quote from: Newportnobby on May 16, 2021, 08:12:04 PM
rather than her being in hospital with so many unknown theories as to what was wrong.

not only "unknown theories" - think of all the nasty things that float around in hospitals!   :sick2:

And if you did not get all the jobs done, blame Covid and say that polish/cleaning stuff etc., (or whatever else was needed),  is not a 'necessity', so you were unable to buy any.  ;)

Quote from: class37025 on May 16, 2021, 05:44:13 PM
many thanks, but, has your good lady worn the bell out yet  >:D

Ha! The bell is fine. :thumbsup:

It's me that's cream crackered! :help:

:D

Glad to hear the two of you have had good news.  :thumbsup:

My best wishes for full recovery of your good ladies.

Sheila continues to be very tired and now has had to temporarily stop the Methotrexate tabs as she has some sort of infection showing in last weeks blood test. So back on antibiotics and hopefully back on course next week. She is a lot brighter now so I think the infection is a minor one. Just goes to illustrate how careful we have to be with her compromised immune system, as we are at a loss to work out how she caught anything as we have been fastidiously fastidious in keeping her away from any infection sources.

She had a follow up appointment with the hospital Eye Department this week after her double vision problems due to the vasculitis (before it was diagnosed). Just the standard appointment letter - no details, just date, time and place. She was expecting an eye scan (vasculitis can mess your eyes up a lot) and the usual long waits between seeing a nurse, the Consultant, the scan Technician, then the Consultant again. Being in a hospital environment made her very nervous due to infection risk, but the whole visit took just ten minutes as all they did was look in her eyes with a scope and declare all was well! All that nervous energy wasted!

Hopefully the appointment letter for the Vascular Consultant she received today for the end of next week will be equally unworthy of worry and stress. But as usual the letter says nothing about the whys and whats of the appointment, just the when and the who with. We expect it is just a checkup or touching base exercise, but the opening paragraph doesn't exactly make for a relaxing read: "If the clinician decides you need a procedure/operation to be done............" :o

Ah well, we are not aware of any need for that sort of thing in her case but wouldn't it be nice if they were a little more tactful in their wording of these letters so the patient had at least some idea of what the purpose of the appointment actually was?

:)

The only silver lining I've found in these clouds in the past is that fretting/worrying about something causes me to lose weight.
I have a lot of worrying to do, it seems :-[

Quote from: dannyboy on May 16, 2021, 08:26:16 PM
.............. think of all the nasty things that float around in hospitals!   :sick2:

If it were me I'd be thinking of all the beautiful things floating around the hospital instead. I did that once and I could tell you a personal story about it from many years ago but it's not for this thread as I was about 30 years old and single at the time  :o

Just an update, and the reasons I've been essentially absent from the Forum for a good while now.

The infection Sheila had in May subsided after antibiotic treatments but her general condition remained the same, that is generally shattered. Her drug treatment has been continuing to the point where today she should be on 25mg of Methotrexate, as well as the plethora of other meds she has to take. I say 'should be' because 10 days ago she developed another more debilitating lung infection for which her GP prescribed more antibiotics. Suffice to say the week long course of Amoxycillin did diddly squat and her condition is worse now, with her very tired, coughing a fair bit (unproductively), and being breathless upon minimum exertion.

Yesterday the GP's best phone-call advice (is it actually possible to physically see a GP these days? - all our contact is by phone. :( ) was to go to our local A&E - again! - to get fully checked out.

Well, that little 7 hour expedition was an eye opener indeed! :o. What a contrast to her hospital visits in Spring! Seems like all hell has broken loose and the way the A&E is run has changed from being a carefully controlled Covid aware environment to one where Sheila spent the whole time there feeling very, very unhappy and at high risk.

Okay, so it was evidently a particularly bad time for the staff, with ambulances arriving almost en masse to discharge new emergency cases, but those walk-in cases like Sheila were all in close proximity to each other and to the ambulance cases in a very crowded area. Covid security was limited to them being sat along a narrow corridor in seats, each separated only by perspex screens, as trolley-borne new cases are wheeled past. At one point an irate Doctor (or some-such uniformed guy) raised his voice to day "This is a Covid area! Could you all please leave!" This apparently was directed at the numerous 'others' in the corridor, that is relatives and adherents of patients. Sheila was left to wonder why any of them had actually been allowed into the are in the first place, as this was definitely not allowed in May when she was there, and as we have not yet reached the laughably named 'Freedom Day' on the 19th, it was just ridiculous. I fact it hit so busy that on returning from her blood test she had nowhere to sit at all but upon the floor! This is a 71 year old with acute vasculitis, a lung infection, and a compromised immune system! Pity those who were around her with far worse problems.

Anyway, all that aside, she had blood tests and xrays to be told by a Doctor at the end of it all that he thought the infection was clearing. How he determined this we do not know as her blood test inflammatory markers were up from a blood test she had just last Thursday. But he prescribed more antibiotics which he had with him. That is until Sheila raised the fact she was supposed to be taking her weekly Methotrexate that day, but was aware that certain antibiotics can give adverse reactions to it. He went away for advice,   returned without the said antibiotics and told her she would have to contact the Consultant's team who were monitoring her condition to see what they thought about it all, who would then advise her GP what to prescribe!

So that is where we are now, Sheila coughing in bed waiting to hear what pills or potions she can or can't take, and me continuing to worry and wondering why on Earth our leader and his minions feel it is a good idea to throw Covid masks and distancing rules away.

All July 19th means for us is an increased need to keep away from people, including our family whose fears for their matriarch are best summed up by Sheila's son who would love her to be free to visit her grandchildren again soon, but who said last month that he would be mortified if a visit led to her being hospitalised again - or worse!

So I'm busy looking after her, trying to avoid vaccine-happy people in Tesco, and vainly attempting to convert a shed into a summer house for Sheila (next summer I think! ) while trying not to notice the garden is getting a bit wild and that dripping tap in the kitchen needs looking at.

One day I'll even be playing trains again. One day.

So sorry to hear all this, Mike, and I'm not surprised you're sounding off about the appalling situation Sheila has found herself in. I've given up trying to see my GP who evidently only works Tuesdays.
I rang bang on the dot of 08.00 yesterday to be told by the automated voice I was 24th in the queue. I called much later and ordered a repeat prescription of the statins the GP had recently moved me onto rather than the ones I was taking before. I could order them on line but he's removed all statins from my records. I needed to give him the BP results from the last week but, stuff this, looks like I'll have to write a letter to him as it will get there faster than me trying to see someone at the practice ::)

Mike, I really don't know what to say about your post. What a bloody nightmare! I can only say that Sheila appears to be a pillar of strength and is not going to let this beat her.

All the best to both of you!

Dear Mike

What a truly horrid time you and Sheila are having.

If there is anything I can do to help, please let me know.

With the very best of good wishes.

John

Mike and Sheila, I can only offer my very best wishes to you both.

Not sure how to answer your post Mike, except to say that I do hope things improve for Sheila and yourself - you both have an awful lot to cope with. I watch the BBC News more than I watch the Irish TV news and it seems that, come 19th July, it is going to be a question of "we will still give advice, but it is every man and woman for themselves". It is quite likely that something very similar will be happening in Ireland from the 19th and, even though I have had my second jab and Louisa gets hers tomorrow, there is no way on Earth I am just going to stop taking precautions. Cases are rising again here which seems to be acceptable, as the people affected will not be as badly affected as previously!  :o. Good luck to you both.

That sounds awful Mike. I hope Sheila recovers soon.

I know what it can be like, my wife is under the GP and four different Consultants - all for different things - and had to do without her Methotrexate for three weeks and her steroid injections for months. She's had to attend all sorts of appointments alone, where normally I'd be there to support her and when she was admitted as an emergency admission, no visitors were allowed.

I too think that things are going too fast. We can't keep everything closed down, but basics such as distancing where possible, masks around others and working from home should be continuing for now. Unfortunately there are large vocal groups that demand that all measures should go, refuse to wear masks now, refuse to test or self-isolate and heavy pressures from businesses, who want everything to go back to normal instantly (including people in offices, simply to support landlords and coffee shops). I don't think that government could have held out against it for much longer, despite the rapidly rising cases (up 25-fold here since the schools went back, with a rise of 63% in a week).

Thanks to you all for your good wishes, they are much appreciated by us both. :thumbsup:

And John, as long as there is Poppingham to visit in a quiet moment to discover what is happening in that technicolour world of yesteryear I'll be more than happy, relaxed for a while, and ready again to look after my ladies every needs and wishes.  :thankyousign:

Now the good news. :thumbsup:  After numerous phone calls to A&E, her GP, her Consultant's secretary and Uncle Tom Cobley and all, and all, she now has a stronger antibiotic to hopefully finish the fight against this lung infection - whatever it is!
She is very tired and coughing more this evening, and looking forward  :no: to the side effects the Doc has said these antibiotics bring - nausea, diarrhoea and other joys.   :(
And tomorrow will be better than today.  :thumbsup:

Another update.....

Summer has all but gone and Sheila has been better but tired since the last infection. Sadly the steroids have taken their toll - side effects have put weight on her face and neck, made her skin less smooth, and caused a few spots and blemishes, as well as the tiredness and heaven knows what other changes.
The good news is that she has now been on the highest dose of Methotrexate they want to give her for over a month, and the steroids have reduced from 60mg in April to now just 7mg and will be reduced by 1mg every four weeks.

Sadly since our trip to Cleethorpes (link thread somewhere here) a couple of weeks ago she has slowly developed another as yet unknown infection. The last few days she has been asleep more than awake, and lately her heart beat has been erratic and up to 103bpm at times. Two telephone appointments with the GPs - the last yesterday evening lasted over half an hour - and she is now on strong antibiotics for the next five days.

Hopefully things will now rapidly improve as she is hoping her youngest grand-daughter Ruby (5) will be spending Saturday with her as I take a trip down the road to the Battle of Britain Memorial Flight Members Day with Ruby's twin brother and their Dad. But of course that's all changeable. 

With depression obviously a key issue for Sheila now I do hope Saturday will go as planned. We have planned and cancelled so much these last 20 months, and since her health hit this hiatus in March it has been the focus of everything.


Oh dear, this is a sad and maudlin post. :( :o. Sorry for that. It's really not all doom and gloom here in the Lincolnshire wastelands. Life is just different for a while. And things will get better - for us all.

Kindest regard to you and your family, Mike.  And here's a colourful picture postcard from Poppingham to convey my good wishes:-

(https://www.ngaugeforum.co.uk/SMFN/gallery/114/6222-220921134323.jpeg) (https://www.ngaugeforum.co.uk/SMFN/index.php?action=gallery;sa=view&id=114197)

Please take care of yourselves.

John

What you and particularly Sheila, are going through tends to put our own problems in some sort of perspective Mike. I have to take a tablet every day, I am having a couple of teeth removed on Friday, the dog is at the Vet's tomorrow, but they are just minor inconveniences in the grand scheme of things. I hope Saturday is a good day for you all - and give my regards to the Dakota, (if it is there), probably my favourite aircraft.  Look after yourselves and my thoughts, (and a lot of other peoples I suspect), are with you. Take care.

P.S. Some pictures from Saturday would be appreciated if possible.  ;)

I do hope that your day out does indeed go ahead and that Sheila soon starts on the road to recovery.
I wish you both all of the very best.
Cheers
Martin

So sorry to hear Sheila is in the wars (again) :(
Poor lass must be wondering what's she's done in a previous life to be so afflicted in this one.
I really do hope things improve...........................and quickly.

Thank you so much guys! :thumbsup:

John, your wonderful postcard, complete with a centre stage front Flossie, is well received indeed, and it is noted that you have included two nods to us, an LNER van for me here in their country, and a banana van (not one bent in the middle ;)) for Sheila, who adds a small yellow fruit, suitably sliced, to her breakfast dish every morning. I am currently boring Sheila to tears with tales of the golden days of rail travel hereabouts, with the GNR, ELR, LD&ECR and others aappearing in excellent books I'm reading at the moment. It might be what drove her to her bed! :o

David and Martin, thanks for your good wishes. It looks like Saturday may actually be a good day. It has already had a prelude here at home today, as I was fortunate indeed to be in the garden when a BBMF Spitfire, closely attended by a high wing monoplane that I took to be a camera plane, made slow circuits in the clear blue skies around me. They were high in the sky but the throttled back Merlin sound still reached my ears and I stood transfixed for some minutes.
Then as I was preparing dinner at 6:00pm a familiar drone had me rushing outside, just in time to see the same camera plane, this time at much lower altitude, leading the mighty Lancaster, undercarriage down, in a long slow pass right across the small paddock and fields just beyond my garden. Magnificent! Four Merlins with the evening sun glinting off her wings as she turned westward towards her base at Coningsby. :thumbsup: Sadly Sheila missed this as she was in bed and unable, you understand, to leap out to take a look. :(
And of course I shall share some memories of the Members Day, all being well.

Mick, things will improve (see below), and I fear that what has afflicted her happened in this life - she got stuck with me! After over 26 years of helping me through my health problems she is now simply playing pay-back - and no matter what I do for her now it can never repay her. But I shall do my best nonetheless. :)


And now, latest update:
Took Sheila to have a full NHS Covid Test last night as Doc insisted a home test 'instant' result was not always reliable, and as Sheila had just a very minor cough (three times in a day!) she wanted to get a proper result. Not had that result yet but neither we nor the Doc think this is Covid related. Still, we're keeping a low profile, as if that's any different!

New antibiotics - Doxycycline - picked up early this morning when heartbeat was high and irregular and temperature was 38.3 . Two pills taken (one a day hereafter) and now the irregularity has gone, pulse rate lowered considerably but still above 'normal', and temperature down to 35.9 (normal!).
Sheila was tired still, and spent all day til now in bed, asleep a lot, but feels a lot better already. Early days, but seems the GP has got the right plan and Saturday, as I say, looks promising.
Fingers crossed.
Then we can get back to getting the underlying condition sorted. :)
:beers:

Hello Mike @daffy (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=5634)

Did you get the the BoBMF's Member's Day as you hoped?

All best wishes

John

Quote from: Train Waiting on September 26, 2021, 04:32:44 PM
Hello Mike @daffy (https://www.ngaugeforum.co.uk/SMFN/index.php?action=profile;u=5634)

Did you get the the BoBMF's Member's Day as you hoped?

All best wishes

John

Happy to say "Yes!", but mainly because Sheila had a good day at home with her grand-daughter Ruby. She is rather worn out today as we both expected, but it has done her the world of good.

Busy day for me today with all manner of household stuff to do, and dinner has just been classed as "very nice" by Sheila so that's a good way to end the day.

I do have some photos from BBMF Day but they are not brilliant. I'll post the best of them on a separate thread tomorrow, together with a few comments on the day there.

Quote from: daffy on September 26, 2021, 07:35:52 PM

Sheila had a good day at home with her grand-daughter Ruby. She is rather worn out today as we both expected, but it has done her the world of good.

Something like that is nice to hear.   :)

Quote from: daffy on September 26, 2021, 07:35:52 PM
I do have some photos from BBMF Day but they are not brilliant. I'll post the best of them on a separate thread tomorrow, together with a few comments on the day there.

Looking forward to that.  :thumbsup:

Four months since my last update here and Sheila is currently lying in bed feeling rough with another chest infection that is currently not showing signs of improvement two-thirds of the way through a course of antibiotics.

The end of last year was not too bad for her, though a few trips out to sit by the coast and one stressful visit to a Tesco would be the limit of her activity outside the home up to the New Year. Christmas Day with the grandkids had to be cancelled at the last minute as the 'other' grandparents played Russian Roulette with Covid while hosting the grandkids for a few days beforehand, and of course they lost! :veryangry: :censored:

However, the young ones proved of sterner stuff and we got to 'do Christmas' with them on New Year's Day, which was the first time Sheila had been able to touch and hug them in well over a year.

A month later and we are back in the old routine of avoiding the World, but this current infection seems to be more debilitating than the others she has had to endure. Almost a year since this troublesome illness began and she is understandably depressed, the drugs exacting their own toll - steroid side effects are not at all welcome, for example - and the inability to do much at all most days now means her fitness is now at an all time low.

I'm worried now that this will be the 'norm' for us for a long while yet. Her Consultant is ever hopeful and he is in the process of arranging new scans and tests over the next few months, which is, oddly, something for Sheila to look forward too.

And now we have the joy of all joys in the lifting of Covid restrictions. What a great idea that is! :veryangry:  To us this return to Plan A by the powers that be (who have no real power in the matter of this virus) translates as: "All those with good health on your side, Keep Calm (or even dance a jig and get drunk with your mates) And Carry On; the rest of you who aren't so well, Tough Shot! (I might have spelt that wrong.)

Far from tossing our masks into the air and rejoicing at our 'freedom', we are battening down the hatches even more - if that is in fact possible.

By maintaining social distancing, wearing a mask, and thinking of others I for one will continue to be 'protecting the NHS', but mainly I will be protecting Sheila - and all like her in a similar position.

And in some small way I may even be protecting you - whatever your opinions, beliefs, choices and needs may be.

I'm sorry to hear that things are bad again.

My wife is also vulnerable and we too are continuing to wear masks and avoid risky places. I am pushing to WFH for a bit longer, but will have to go back soon - that probably makes little difference with us having children mixing at school every day though.

As it is, my wife is wheezing and struggling for breath at times during the night and with a depressed immune system too, we dread the idea of her catching Covid on top.

I too have a suppressed immune system, so will be wearing masks for the foreseeable future and avoiding indoor spaces. We have had lunch out a couple of times, but only with friends that don't have children and are taking care like we are. We avoid crowded pubs and only go out mid week. I have had covid, it's not something I want again, but colds and flu are also rife this time of year. Roll on summer when we can sit outside in the garden.

Shopped at Tesco on Wednesday and almost everyone except teenagers (of course) wore a mask.
Come so called 'Freedom Day' yesterday I went to a DIY shed and was pleased to see at least 50% still wore masks. I did have one idiot ask me why I was wearing a mask when I didn't have to so I patiently explained that maybe 90% of mask wearing protects others and possibly 10% stops me breathing in Covid fumes so he was getting the greatest benefit.
I have worn a mask inside retailers since Covid began and will continue to do so regardless of what the 'experts' say. I have also worn disposable gloves at every weekly shop and they are only taken off when my empty trolley is parked. Having unpacked my shopping at home I then rinse my hands with antiseptic gel.
I mentioned yesterday I can't attend my gym classes due to a change of statins by my GP and am now quite glad as I heard last night of 22 members of the class at least 8 have Covid

I am sorry to hear that Sheila is suffering again and that you are having to go to such lengths to keep her, and yourself, protected. I sincerely hope that things do start to improve for you both in the near future. Most restrictions have been lifted here in Ireland, but it is still mandatory to wear a face covering in some situations and, having been out doing my shopping this morning, it was nice to see that the majority of people, including shop workers, are still wearing face masks.

At our club we are requested to wear masks but not compelled to .
But in my railway shed it will still be my law that visitors will wear face masks as its so cold and we cant have the windows open even when the gas fires warm the place up as the cat WILL COME IN and she likes chewing my home made trees she likes the taste of the copper wire .
So if any of you want to visit we have a supply of masks if you forget to bring one .
Bob Tidbury