Well I'll be blowed!!

[tommo47]

Hey there, @tommo47, how's it going now? Hopefully, you're doing well. Are you eating and drinking enough for proper nourishment and hydration?

I hope you're still able to get any special, favorite things now, considering the whole panic-buying thing going on around the globe.

Hi @MoodyBlues, I'm feeling fine at the moment, in fact better than I have since the whole thing started the main reason for that is contained in my post #69 which I suspect you haven't read .

Now that I've stopped taking the chemo pills my stomach is fine and I'm enjoying my food and a slight weight gain over the last few days has put me back to 8½ stone .

Things are beginning to bite now and in most places there is a limit of three on any items purchased. A particular favourite of mine is a Gooseberry Fool but I can live with three a day . Chris, my wife, is well organised and has a good stock of most necessities. Her 92 year old mother has lived with us for the last 18 years, Chris is her Carer so she is under a lot of pressure at the moment, particularly as I must self isolate now and am unable to help with the shopping.

Wait...you have roommates in the hospital? FIVE? Ugh. I, for one, would not get any kind of lift from having roommates. I mean, when I feel like shit, I'm in no mood for idle chit-chat.

The standard wards are split into a number of bays each bay having six beds and there are a small number of single rooms which are primarily for isolation purposes. This last spell three of the six in my bay were confined to their beds and were totally dependant on the nurses for all their needs but in some cases would join in and seemed to quite enjoy the interaction .

I'm due to see my Doctor on Tuesday next week to get the latest update on the chemotherapy, the second session is due to start on Wednesday so a lot now depends on the alternative pills they have found.

I spent most of yesterday afternoon in the garden starting the recovery of almost 5 months of neglect. I will be back out there after breakfast, dreaming about my motorcycle outfit.

 

[MoodyBlues]

in my post #69 which I suspect you haven't read

You're right, dear, I haven't read it yet. I took a week away from AF and, as a result, have A LOT of catching up to do!

I'm so happy to hear that you're feeling good right now, and sitting outside in the garden. Take your time working in the garden; listen to your body and stop before you're overly tired. ALL things considered, you must do everything you can to prop up your immune system, not deplete it.

As for roommates...ugh... I would really hate that. Just reflecting back on my two most recent illnesses and their hospitalizations, I can say without hesitation I'd have hated having ONE roommate, let alone five.

After brain surgery, I was so debilitated and had such profound exhaustion, visitors [other than my husband, who sat quietly reading while I dozed all day] were limited to 1 or 2, and for only 5-10 minutes at a time. During my epic sepsis hospitalization, I was so weak that uttering 'thank you' took everything I could muster, but said it to every CNA, LVN, RN and MD who did something for me. Chit-chatting roommates/background noise would've annoyed the hell out of me.

Please see my media album if you could use some cheering up. It's nothing special, just photos I took in my yard, but it makes me happy looking at pretty flowers and visitors; hopefully it may do the same for you.

 

[MoodyBlues]

Wow. Perfect. On that note I guess I will close out and have a read only interaction going forward. Thank you for your patience.

Oh, no--don't let us run you off! That certainly wasn't our intention.

It's just that some of us have been, or are now, seriously ill, and it's kind of a raw subject for us.

You couldn't possibly have known this when you wrote what surely was meant as a light-hearted comment, but I spent six months in the hospital after nearly dying, and throughout that time I was 100% dependent on others for EVERYTHING. I mean everything.

Think about the tiny details of a typical day--brushing your hair, taking a shower, walking to the bathroom to poop or pee, changing positions in bed, eating, drinking, brushing your teeth, etc. Now take that all away because you're so sick you can't do them yourself. Imagine being told that you're not allowed to brush your hair, because the exertion(!) would trigger cardiac arrest...that's where I was. So your innocent comment about being waited on just hit me the wrong way...hard.

Please don't be afraid to participate anywhere on AF. We pride ourselves on Android Forums being a welcoming, warm place. Your situation was an anomaly--we usually don't bite!

 

[tommo47]

I have an appointment at my local Medical Centre tomorrow for a blood sample prior to the second chemo session which starts on Wednesday.

I was due to go for a consultation with the oncology doctor about the proposed changes to my chemo drugs but due to the COVID-19 restrictions had a quick phone call from him instead just to reassure me that they are all set for Wednesday and they are confident the changes will be effective.

At least it meant I could get back to my gardening today. It has been a nice sunny day here so I really enjoyed it.

 

[MoodyBlues]

I have an appointment at my local Medical Centre tomorrow for a blood sample

Can't a nurse or phlebotomist do that at your home? You need to limit your exposure to others as much as possible. Of course I have no idea how these things work over there--but I still remember Paul....somebody, the fattest man in the world, having in-home care provided by your health system. If he could have it, surely you're entitled.

Would you like to hear a funny story about my in-home nursing, after being discharged from the hospital? Skip if not!

So this one day we were waiting for a nurse to arrive, to change my IV. [The last central line had been removed over infection concerns.] The doorbell rang, my helper brought the nurse to my room, and since he wasn't doing anything in my private parts area, my helper left the room. The nurse and I chit-chatted, I asked him his name, he told me, it was distinctly Armenian so I said I'm Armenian, too. He was fiddling with the IV pole and new supplies--then abruptly left the room. And went out the front door. WTF?!

A few minutes later he came back in, just long enough to gather up his things, and with a quick 'sorry' he took off. WTF?!

My helper called my nurse case manager and explained what happened. She said she'd call us back. She did--and said the nurse had had a panic attack. Which I'm totally sympathetic to, having suffered many myself. If he had told me what was happening, I would've been completely supportive. I'd have told him to slow down his breathing, breathe deeply, go sit outside in my garden, visit with the peacocks... Of course, he didn't know that...

 

[tommo47]

Can't a nurse or phlebotomist do that at your home? You need to limit your exposure to others as much as possible. Of course I have no idea how these things work over there--but I still remember Paul....somebody, the fattest man in the world, having in-home care provided by your health system. If he could have it, surely you're entitled.

As far as I know the NHS don't provide that service. The Medical Centre is now restricting entry to those with no symptoms, of course the problem with that is it depends on the 'Great British Public' acting responsibly .

When I arrived there were only three people in the waiting area so it was easy to keep to the two metre rule. Access to and from the waiting area to the various consulting rooms is via an archway no more than two metres wide. Before I was called through by the nurse some a*** h*** of a guy got up, walked to the middle of the archway and just stood there with his back to the waiting area.

Fortunately he went back to his seat just before I was called otherwise he would have got a very loud 'excuse me'. That is the GBP for you!!!!

The chemotherapy centre rang me today and asked if I was OK to go in the facility on my own tomorrow which is not a problem, my wife will drop me off and come back for me when I'm ready. Fortunately it's only a twenty minute drive to the hospital.

My wife and I have had private medical insurance since 2002, covering specifically heart and cancer, as well as general health matters until we cancelled it three weeks ago!!!!!

We intend making a claim for compensation on the grounds of 'miss selling a product'.

 

[MoodyBlues]

As far as I know the NHS don't provide that service.

Okay, wait, I want to be sure I'm clear on this: if you eat yourself to a state of being incapacitated and bed-bound, they supply multiple full-time caregivers. But if you're unlucky enough to get cancer and be immunosuppressed--during the coronavirus pandemic, no less--you're on your own. Got it!

 

[Hadron]

Well to be fair a single phlebotomist can see 10 people in the surgery in the time it takes to perform a single home visit (unless the patient lives round the corner, and even then it's still probably 5). Home visits are the only way for some people, but where the person can attend surgery themselves it's a much better use of resources if they do so.

 

[tommo47]

@Hadron, I think you are absolutely right.

I have to admit to a serious lack of knowledge regarding the workings of the NHS, which I put down to the comments I made when I started this thread. Two hospital admissions in 50 years and maybe half a dozen visits to a GP, the most serious being a high blood pressure scare in 2010 which was dealt with by a combination of diet and exercise.

As my wife pointed out to me there are District Nurses and their teams who provide 'at home' care, but I doubt very much whether they could cope with the current unprecedented situation.

There is also the fact that to get to the chemotherapy session tomorrow I will be 'on my own' when I get out of our car and walk to the facility and am at risk from somebody not acting responsibly and coming within two metres of me. There will be dozens of people arriving throughout the day. There is no way the NHS could carry out those procedures on a treatment at home basis, never mind sending nurses or phlebotomists out to do all the blood samples.

 

[MoodyBlues]

Well to be fair a single phlebotomist can see 10 people in the surgery in the time it takes to perform a single home visit (unless the patient lives round the corner, and even then it's still probably 5). Home visits are the only way for some people, but where the person can attend surgery themselves it's a much better use of resources if they do so.

We're having a fundamental clash of cultures here.

In the US, there are healthcare professionals who do in-home care exclusively. My brother-in-law, an RN, is one of them. (Unfortunately for me, we live in different states.) They typically work through a home-health agency, and spend their days travelling from patient to patient. They're not being pulled out of a hospital to drive over to a patient's house to draw blood.

After my long hospitalization, in-home care was just part of what was provided and/or offered to me. I was still too sick to be expected to go to my doctors' offices for things like IV changes, Foley catheter changes, lab work, etc., so those things were done at home. I wasn't taking these phlebotomists, LVNs, CNAs, or RNs away from anyone--I was their anyone!

 

[tommo47]

Well, that's a bit of a bummer. The medical team have been reviewing all the various scans I've had over the last four months and are leaning towards 70% sure that the oesaphageal tumour has metastasised to my liver.

As they have already said the only way of being certain would be to take a biopsy but it's too close to my diaphragm for that, so they are going to have another MRI Scan taken immediately after my third session of chemotherapy for a 'then and now' comparison.

The second session is going good so far, early days I know, but I feel much better both mentally and physically than at the start of the first session. It has been another lovely day today so I spent a few hours gardening which I thoroughly enjoyed. I bought a sidecar on eBay on Saturday and the guy delivered it to my dealer yesterday and he's emailed me a stack of photographs today so we can have an input to the colour matching process.

The seller described it as 'immaculate' and my dealer confirmed that, as did the photos, so my excitement is building. The current effects of COVID-19 are a putting a bit of a damper on it although there is a lot of work to be done with the paint spraying and putting the combination together.

 

[Hadron]

Crap. Fingers crossed.

 

[MoodyBlues]

leaning towards 70% sure that the oesaphageal tumour has metastasised to my liver.

Aw, shit. Definitely not what anyone wanted to hear. But let's see what the MRI scan reveals.

Meanwhile, enjoy the nice weather and have fun puttering about your garden. Are there any specific plants/seeds/bulbs you're thinking about getting?

 

[tommo47]

Nothing in particular, we've been here just over 12 months. It's a lovely house and suits us down to the ground. We have a small hotel in Llangollen, North Wales. After we took early retirement from British Telecom during its 'downsizing' exercise in 1998 and after 4 years running a B&B we took a chance and bought it, even though it was in a very poor state. Wales Tourist Board were reluctantly giving it one star grading and their income was reflecting that.

Anyway, we believed we could turn it round and with the help of a WTB grant we re-opened in 2003 as a 4 Star Country Hotel, doubling the previous owners takings and making steady progress until the various grading bodies who each had a very different view what grading was all about decided to undertake a 'harmonisation' exercise. The end result for us was that unless we offered things like room service and restaurant open for breakfast, lunch and dinner 7 days a week, full-time receptionist and night porter we might achieve 2 stars but probably one. In 2005 we made a slight working profit and the projection was for a reasonable working profit for 2006 with continuing increases for subsequent years. We started doing weddings, one the first year, 3 the second year and 13 the third year and our occupancy and guest repeat visits had both been comparatively high. But to take on all the extra staff to provide the new 'services' required would have driven us into a large and rapid loss situation. So, in 2007, we took the decision to change the operation to 'Guest Accommodation'. No room service, restaurant opening not as rigid no full-time receptionists and no night porters. I was 65 in 2012 and we decided it was time to finally retire so we advertised for tenants and successfully rented it for a ten year period lease. 3 years later they gave notice to quit and return to their previous local pub scenario having not really listened when we kept saying that running a local pub is not the same as running a small hotel.

So back we came to Llangollen in 2015, decided to shut the place down and put it on the market for sale for a housing development. A developer has agreed to submit an application which is well on the way but of course our capital is tied up in the property and won't be forthcoming until the houses start to sell hence we are in a rented house near Oswestry in Shropshire. It's a lovely house, with a very manageable private garden, although it had been somewhat neglected before we came but is looking much better now. There are 16 lovely Wisterias which are in serious need of extensive pruning and that is the next job on my list. There is a large garage for my combination which I can tinker with, polish and ride as often as possible and a superb kitchen with an AGA cooker which Chris is in love with .
There is a Sony 80 GB hard disc recorder and a DAB tuner piped to every room in the house with even a feed into the garden and garage and I love my music . The final bonus is Chris can more easily look after her 92 year old mother who has a down stairs en-suite bedroom. In fact that was the main reason for leaving the hotel and going into rented accommodation. As mother is wheelchair bound she had the only two ground floor bedrooms, one as a sitting room and the other as her bathroom which was equipped with a wheel-in shower and the all appropriate support bars etc.
The main problem was that Chris and I were in the owners 3 roomed suite upstairs at the back of the building so I rigged up a wireless doorbell with 3 bells sited to give cover in the kitchen which was downstairs and our suite. So throughout the day, evening and night when the bell sounded, Chris had to go up and down stairs several times. The kitchen, being a commercial one had no form of heating apart from the chip fryers and two large commercial ovens which was fine when they were on for normal hotel service but otherwise was very cold. It was becoming evermore difficult to look after mum. If we hadn't moved when we did the added pressure on Chris due to my situation would have made it damn near intolerable .

So all in all we are both very, very happy here.

 

[MoodyBlues]

Thanks for sharing your very interesting story, @tommo47!

Gardening is my favorite pastime, and adjusting to not doing it for the last 3+ years has been hard. I don't feel sorry for myself or anything like that! It's just that I miss being outside, puttering in my yard and interacting with [and feeding] the peafowl.

Before I got sick, every morning I would gather up my arsenal of stuff and head outside. That included a cordless phone, my smartphone, my tablet, my gardening journal and mechanical pencil, a Nikon camera and 70-300mm lens, a cup of coffee, and a bottle of water. I had lots of pockets!

Then, on my patio, I had a TV--complete with DirecTV and remote control, a laptop, a supply of shelled peanuts [my favorite peacock would eat from my hand], and all the seedlings and avocado trees I was sprouting. I'd stay outside all day.

I took bazillions of pictures, and now, when I'm feeling nostalgic, I browse through some of them to remind myself how enjoyable that was. I'll stop on one of a really unusual and beautiful flower and say, oh!, that's the...what was that I planted? Then I'll see its name and think, oh, yeah, that's what it was called...

You mentioned wisteria, which is one of my favorite plants, although I don't have any. Shortly before I got sick I had talked to my gardener about planting some. The problem was where to put it! You see, they grow like crazy here, so they need to be placed accordingly. The Guinness World Record wisteria plant, which is 126 years old and weighed 250 TONS in 1990, is about two miles north of me. I wanted to place mine alongside the bougainvillea, which grows along one side of my backyard, then up and over my patio's roof, but that just wouldn't work. So I was planning on having a pergola built specifically with wisteria in mind...and then things changed. *shrug*

How are you doing today? What's the latest on your treatment plan?

I'll leave you with this sequence of photos, showing one of my avocado trees from its beginning through its finally being put in the ground. I started it in 2013 by simply sticking the pit in some potting soil and keeping it moist. By the time I got sick it was ≈6' tall. It suffered while I was gone...it almost makes me cry, because several of my really prized plants died while I was too sick to be aware that they weren't getting enough water. Anyway, it did rebound, after losing a good 4' of its height, and is now almost 5' tall; I don't have a current pic:

 

[tommo47]

Thank you @MoodyBlues, I thoroughly enjoyed reading your post.

When we first viewed the house in November 2018, we both fell in love with it, for a variety of reasons, within a few minutes of stepping through the door, and it just got better and better.

Chris was gobsmacked when we went out to the garden, she stood there speechless for what seemed a long time, just looking at what has been her favourite of all time, wisteria, but not just one or two, there are sixteen altogether.

I'm a bit gobsmacked now, for it to be one of your favourites too, and, if you will forgive me, can't help but think of a variation of the 'double entendre' - "Would you like to come up and see my wisteria" .

How are you doing today?

It is day 10 of 21 in the second session of chemotherapy after the first was stopped on day two with the re-admission to hospital. They changed the mix of fluids for the IV feed and I came home with a slightly different set of drugs, including three syringes for injections on days 2,3 and 4 and the same tablets but reduced dosage for days 2 to 21.

I have been much, much better, eating well, hardly any nausea, just occasional dizzy spells. Hopefully it will continue through to day 21.

I've been in the garden over the last few days and have managed to prune four of the wisteria .

I like your photos of the avocado tree, I find it very satisfying to bring on plants like that, there isn't much to beat that feeling.

There are five rose bushes in the garden that had been allowed to grow so high they couldn't support themselves so I pruned them right back last autumn and they are all looking very healthy now. Plus an additional one we brought with us from Llangollen, which I hard pruned before replanting and that too has come back with a vengeance.

I will take some photos and post them .

 

[tommo47]

Yesterday was the start of the third and final week of the current chemo' session and I feel really good. Eating well, partly due, I think, to spending most of the last week in the garden. All sixteen wisteria have now been pruned and the rest of the garden has had a full weeding job done.

It has been great weather here this week and everything looks really healthy.

 

[MoodyBlues]

It's so good to hear you're doing great right now, @tommo47.

the rest of the garden has had a full weeding job done.

Want to come do mine? My gardeners, who come every Monday, didn't come this week--supposedly because of rain, but *I* think they just wanted a day off. I noticed that an entire area--one side of my driveway, about 50' long--has filled in with some kind of cute little weed. I guess my gardeners thought that I had resumed gardening, planted this *huge* stretch with a groundcover, didn't tell them about it, and shouldn't disturb it.

So if you're up for it, drop by and have at it!

Oh...wait...you're across the pond, ill, being treated, and the whole world's shut down...never mind...

 

[tommo47]

So if you're up for it, drop by and have at it!

Oh...wait...you're across the pond, ill, being treated, and the whole world's shut down...never mind...

I'd love to . We have been to Old Town, Kissimmee three times, twice to take our two grandsons to Disney and the third time just the two of us to recover from the first two times . I jest of course, the boys really behaved themselves and we all had a great time .

We have never been to your neck of the woods . One day perhaps .

Talking about the world being shut down, if I hadn't been able to get out in the garden this week I would have been well 'stir crazy' by now .

How are things for you at the moment?

 

[MoodyBlues]

We have been to Old Town, Kissimmee three times, twice to take our two grandsons to Disney and the third time just the two of us to recover from the first two times .

That's cute. How old are your grandsons? I have two, too; they're 10 and 12. Do yours live nearby? Mine are in another state.

Things are good here, but I've had the most peculiar reaction to the mandated 'stay at home' order I'm under. For three years, housebound, not once did I ever feel deprived, unhappy, sad about not being able to get out and do things, bored, etc. Given the gravity of the situation that led me here, I've honestly been content with my current life, grateful to have survived something that by all rights should've killed me. Once I was well enough to do more than be still in bed, watching TV, all day, I found many things to do to stay busy. Like the never-ending housecleaning I've been doing [via my phone, on my bed] on my network.

You'd never believe how much micro-sorting can be done on photos! (I know @Hadron does. ) Thousands and thousands of photos. Let's take peafowl, for example. When I first moved back home to California, the Arcadia I grew up in had changed in several ways. My favorite, hands-down, was the spreading of our peafowl population, radiating out from where they originated, the LA County Arboretum. I'm very blessed to live near it and, therefore, in one of the neighborhoods they inhabit now.

But in my haste to start taking pictures of them, I did what many people do: called them 'peacocks.' I made a subdirectory under my images directory called 'peacocks,' then subdivided that for males, females, chicks, etc. And I carried that with me from computer to computer! Now, fourteen years later, I just [yesterday] renamed their subdirectory 'peafowl,' renamed some of its subdirectories [peacocks, peahens, chicks_juvenile, mixed, etc.], and added numerous new subdirectories, like for molting and feather regrowth.

I started this housecleaning project somewhere around September [August?] of last year--and there's no end in sight!

To get back to my point, I've kept myself very busy, within the physical limitations I currently have--and not once did I feel sorry for myself, sad that I couldn't go to our beautiful beaches or mountains, etc. Until now!

There's something about being mandated to stay home that makes me want to go out! (I'm ordered to stay home because I'm severely immunosuppressed.) And there's also something about knowing that everyone else is either very limited in leaving home, or mandated to stay home. I still don't feel sorry for myself, or anything like that; that's not me. But suddenly restless? Yes indeed! They say 'misery loves company.' Maybe there's something to that.

 

[tommo47]

How old are your grandsons? I have two, too; they're 10 and 12. Do yours live nearby? Mine are in another state.

They are 22 and 25 now and were 8 and 11 the first time we went to Old Town, which was a holiday of a lifetime for the four of us, so many wonderful memories.

The youngest lives with his mother about 45 miles north of us and the eldest has his own flat about 75 miles south of us.

I know what you mean about 'misery loves company' although there are a number of interpretations of it. From my perspective, particularly after the last 5 months of in and out of the oncology ward, no matter how ill you are, or 'feeling sorry for yourself', which I try really hard to avoid but very occasionally fail, there are always those who are far far worse, in various ways.

 

[MoodyBlues]

From my perspective, particularly after the last 5 months of in and out of the oncology ward, no matter how ill you are, or 'feeling sorry for yourself', which I try really hard to avoid but very occasionally fail, there are always those who are far far worse, in various ways.

Yes, exactly! Even at my sickest [three hours left to live, had I not been rescued/treated], I realized others were worse off: they didn't make it.

I feel confident that you're going to come through this with flying colors. The road can be bumpy along the way, as you've seen a few times already, but in the end I believe you'll be better and stronger than before. And by stronger, I mean in multiple ways.

Hey, my fellow gardening buff, do you mind if I ask for your help? [No, not weeding!] While housecleaning on my network, I came across photos of some beautiful, purple flowers I don't recognize. For unknown reasons, I failed to name the images according to the plant's name, as I normally do. I hadn't started keeping a gardening journal here yet, so I don't have that to fall back on. Here they are, with one area zoomed in:

I absolutely love them! I wish I knew what they were so I could have my gardener plant some. I can say with reasonable certainty that they were not perennials. The photos I've found so far were taken in early May.

Of course I realize our climates are wildly different, and this plant may not even be available to you, but if you have any ideas on what it might be, please let me know. Searching [for all variations I could think of] for 'purple flowers' yielded bazillions of beautiful flowers--but not these!

 

[MoodyBlues]

I don't even believe this! I just pressed on the zoomed image, chose to 'search Google' for it, and guess what? VIOLA! Really? Viola? I did not recognize it...

Mystery solved. Oh well, they're fun to look at!

 

[tommo47]

The nearest I have found is Campanula or Bell Flower :-

Close but not an exact match.

 

[tommo47]

Hey, my fellow gardening buff, do you mind if I ask for your help? [No, not weeding!]

Believe it or not, I enjoy weeding. I find it quite therapeutic, particularly so when I've got my music on. As well as three flower/bush beds we have quite extensive gravelled areas and I have a 'thing' about not using weed killer. Dead weeds look just as bad as live weeds!, so it's a hands and knees job pulling them all out. If 'green' doesn't belong anywhere, out it comes .