Well, today was better...but then if had been anywhere near as bad as yesterday it would still have been pretty gash. Gash may sound a little off.....but it's British military slang (specifically from the Royal Navy and Royal Marines) for rubbish (garbage), or for something that is considered useless, broken or otherwise of little value. There wasn't much value to yesterday.
We slept well, very well.....so well in fact that, after breakfast, Jill was ready for another nap. That wasn't going to happen. A meeting had been arranged for us to sit down with KG, NB and NB (plus others) at 13:30, so we needed to be organised. That included having a hair wash at the stylists in Grouville. (our water at home is not great from a hair washing point of view......not that I'd notice!!) and occasionally visits for hair-washing are made. So I got my chauffeur's hat on and we headed south. Just time for a very quick munch before we had to set off for town (our 4th. visit in 4 days). Eventually we all found each other and sat down in Oncology for our debrief on the weekend....and our plans for the days and weeks to come.
It was obvious that there had been much thinking and consulting going on...and 'phone' calls made. Indeed, as the top man at the Marsden was on holiday, the very top top man had been contacted. It turned out that he was also away, relaxing in Antigua!! He took the call and discussed Jill's case....it takes some believing that someone so high up in the UK's leading cancer hospital would be happy to "get involved" from so far away. Our local Jersey consultants, doctors and surgeons regularly keep in touch with us via calls, texts or messages when they are off island. We just cannot express what fantastic care and support we have received for the last 6 and a half years....we are truly humbled that people care so much...from top to bottom, we are very lucky to have such great people looking after us all.
In very short order the outcome of the discussions are as follows. The first thing is that leaving the drain in Jill's stomach is too risky. Easily risky enough to come first in an international competition for the riskiest of very risky things. So, no permanent drain. The second thing is that, moving forward, Jill's comfort must come first....so no more A&E admissions, no more blood tests (that give us so much pain and trouble)....no more meetings and explanations to doctors who haven't met us before.....and, if we need to get into hospital quickly, a "hotline" number to avoid unnecessary delays and give us direct access to a hospital ward.
Thirdly, no more chemo.
Having chemo is stressy...very stressy. The port usually plays up...sometimes it's an hour just to get it to work. Having the chemo isn't great...and the effects of receiving chemo often go on for days. Chemo legs (twitching and "prickly"). Chemo cheeks (red and hot). Chemo taste (a metallic taste in your mouth for days). Chemo "brain" (the forgetfulness and general loss of brain power). Chemo isn't great...after all it's poison...it's trying to poison the cancer cells, but having to poison everything else at the same time. The biggest effect of course is the annihilation of your immune system, which in turn often leads to major problems from simple things like coughs, colds, and minor infections, not to mention pneumonia or other similar diseases. Finally, in our case, (and most importantly) the chemo isn't controlling the cancer anymore. Why put yourself through everything listed above if the medicine isn't working any more. So, no more chemo.....
Some positives of today is the fact that we can also cut out some of the many and various pharmaceutical products that we're taking on a regular daily/hourly basis. Less antibiotics, less painkillers...which in turn also means less drugs to combat the side effects of those antibiotics and painkillers. All in all we should be able to make life far more tolerable....more comfortable....maybe even (in very small doses at obscure times of the day) more enjoyable. Yes, in the background we will still know that this bloody disease that is cancer is still quietly chewing away, but there's now very little we can do to wipe it out....and we need to find ways to put that to one side and "get on and do as much as we can". That's easy to type, but it's going to be far more difficult to do.....but we must try. We will continue to search for those rare, brief moments when one forgets about cancer, and everything seems "normal"...until, of course, reality kicks in again....and we remember where we are and what we're doing.
We are supported in our challenges by a vast network of family and friends who continue to amaze us with their generosity, their thoughts and prayers, their "good deeds" and their love. There's absolutely no doubt that life would be that much less tolerable without them. Words cannot express our gratitude, so I won't try....but that doesn't mean we are not grateful every day.
Tomorrow is another day....and there's a visit to the garden centre planned....but not by me I might add. I can barely contain my excitement. I hope out reader is ready for some horticultural horror stories tomorrow!
Its 10pm, and normally If I write the blog post, I get Steve to check it and vice versa. Last night I was unable to speak, move or even think, and didn't read it until 3am this morning, long after he had posted it.
Today, as he has said, has been better, and I found myself reading his account of what we had run through today and had discussed at the meeting, only once wobbling a few tears ( Tuesday is a supposedly non-crying day). I make the rules.
Until that is...I read the last few paragraphs and I do so love his honesty, it needs to be said even if the truth hurts and even if it has reduced me to tears.... Is it still Tuesday?
He is right, and we may not have fabulous 'days' when everything goes smoothly but if we can have moments in those days that are precious that's all that counts...
"Life is not measured by the number of breaths you take but by the moments that take your breath away."
Tuesday, 31 July 2018
Monday, 30 July 2018
Rainy Days and Mondays
Didn't Karen Carpenter have maybe the greatest female voice you could ever wish to hear? So many great songs, melodies and harmonies....but tonight's blog title seems apt. Today has been pretty rubbish....and if there was ever a day to "really get you down" then maybe today was it. One wouldn't want too many like this....but tomorrow is another day....and let's hope it's more positive.
Jill didn't get much shut eye last night. No apparent reason but just couldn't sleep. We therefore started off this morning very tired. The drain had lived up to it's promise of not really behaving....but it was certainly draining...unfortunately it was not only draining into the bag, but also on to and in to everything else. The washing machine and tumble dryer were both back on overtime...how would be even begin to cope without them? Anyway, we were downstairs and sort of ready to go pretty much on time. I left Jack in charge and went off to my meeting.
I kept in contact with the ward and was told that Jill had gone for an ultra-ultrasound. KG was back on duty and wanted to know exactly what was going on "inside". The instructions were that the drain would be left open to take out as much as possible.....with the intention of maybe taking it out. I arrived with some lunch for Jill.
KG arrived, with other doctors, to have a chat and see how we were doing. The first and immediate issue was that the colour of the fluid wasn't quite what KG was expecting. She was expecting Ascities (that's cancerous fluid for those of us who don't have doctorates in medicine). Ascities has a bright yellow colour (as we unfortunately know from our "lung" experiences of recent weeks). What we had was a dull yellow colour....and immediately recognised as lymph fluid.....again, something we've seen before (in BIG quantities back in 2014). So, we had lymph fluid that wasn't supposed to be there....but there it was, and in some quantities...remember, we have been draining this off since Saturday morning. How was it getting into all these cavities? It really shouldn't be there. KG was taken aback for a few moments.... and she went off to see if she could consult with others. She was back pretty quickly having had a think....and this is where it gets a little complicated, so I'll try to describe it in simple terms.
Lymph fluid moves around the body in tubes....from node to node....and if can imagine a "one way only" hose pipe with fluid in it then hold that thought. The most likely diagnosis seems to be that we have enlarged nodes (because of the cancer) in the upper parts of Jill's body. These larger nodes have basically blocked the tubes so that fluid can't get passed. That means that the body is pumping fluid but that same fluid can't go anywhere. Pressure is therefore, unsurprisingly, building up in the tubes. After time the pressure starts to get the better of the tubes, and the fluid starts to leak out....into whatever cavities it can find to go. In essence, we've been indirectly filling the various voids in Jill's body. There's no nice way of saying it....so there it is....
...and then gravity starts to take over. So the swelling that started in Jill's ankles many days ago now was because of fluid coming from higher up....and after the ankles came the lower legs, then thighs, then abdomen and then stomach....resulting in where we found ourselves on Saturday morning.
The good news (if there is any) is that the fluid in itself isn't cancerous. The less good news is that there's nothing much that we can do about unblocking the tubes...so that issue isn't going anywhere. However, we can cope with it, al least for now. Coping with it means that the temporary drain (that we've hated so much) will need to become permanent. Permanence brings it's own difficulties. The risk of infection is a real real worry....so we need to do all we can to avoid it. That means a different type of of drain (too complicated to explain today...maybe tomorrow) but at least it can be done....again, maybe tomorrow.
I forgot to mention that in the rush to get to town this morning the steroids, that Jill is taking daily, had been missed. That meant that things were quite as positive as they might have been (it's amazing how much better all round some of these drugs can make you feel).
So, there we were. Tired and steroidless, a bit "down in the dumps" and then told that the drain will become permanent and that "coping" with the fluid is the best we can expect. It really really was a case of "Rainy days and Mondays always get me down". There wasn't much to be positive about....and then the nurse removed the temporary drain (KG had said it had to come out because the risk of infection was too great) and the pain of the removal was unexpected and pretty severe for a couple of brief moments. there really was not very much going right.....and Jill, not unsurprisingly, had a bit of a "moment". I don't blame her.....it wasn't a great hour or so.
On the positive side...we had some dodgy days three weeks ago, and we got through them. Tomorrow will hopefully start from a better place (as I type it's 22:50, and Jill is fast asleep following her normal does of Morphine and Methadone). We are due a meeting with all the powers that be. There will be a "meeting of minds" and then we will see where we go. Certainly the consensus this afternoon was that there won't be any chemo tomorrow.....is that a plus or a minus? My hope is that, by the end of this week, we are learning to live with the drain (we've done it before). The difference this time is that we are not expecting to lose the drain.....so we will need to bet over that and move on.
I'm going to stop there.....there's overnight drugs to be got ready...dogs to "wee"...dishwashers to put on...tumble dryers to empty...and other domestic chores that need sorting. I'm confident that by this time tomorrow I'll be reporting more positive news. I'm not going to edit or check....so apologies for any glaring mistakes...I'm sure our reader will understand.
Jill didn't get much shut eye last night. No apparent reason but just couldn't sleep. We therefore started off this morning very tired. The drain had lived up to it's promise of not really behaving....but it was certainly draining...unfortunately it was not only draining into the bag, but also on to and in to everything else. The washing machine and tumble dryer were both back on overtime...how would be even begin to cope without them? Anyway, we were downstairs and sort of ready to go pretty much on time. I left Jack in charge and went off to my meeting.
I kept in contact with the ward and was told that Jill had gone for an ultra-ultrasound. KG was back on duty and wanted to know exactly what was going on "inside". The instructions were that the drain would be left open to take out as much as possible.....with the intention of maybe taking it out. I arrived with some lunch for Jill.
KG arrived, with other doctors, to have a chat and see how we were doing. The first and immediate issue was that the colour of the fluid wasn't quite what KG was expecting. She was expecting Ascities (that's cancerous fluid for those of us who don't have doctorates in medicine). Ascities has a bright yellow colour (as we unfortunately know from our "lung" experiences of recent weeks). What we had was a dull yellow colour....and immediately recognised as lymph fluid.....again, something we've seen before (in BIG quantities back in 2014). So, we had lymph fluid that wasn't supposed to be there....but there it was, and in some quantities...remember, we have been draining this off since Saturday morning. How was it getting into all these cavities? It really shouldn't be there. KG was taken aback for a few moments.... and she went off to see if she could consult with others. She was back pretty quickly having had a think....and this is where it gets a little complicated, so I'll try to describe it in simple terms.
Lymph fluid moves around the body in tubes....from node to node....and if can imagine a "one way only" hose pipe with fluid in it then hold that thought. The most likely diagnosis seems to be that we have enlarged nodes (because of the cancer) in the upper parts of Jill's body. These larger nodes have basically blocked the tubes so that fluid can't get passed. That means that the body is pumping fluid but that same fluid can't go anywhere. Pressure is therefore, unsurprisingly, building up in the tubes. After time the pressure starts to get the better of the tubes, and the fluid starts to leak out....into whatever cavities it can find to go. In essence, we've been indirectly filling the various voids in Jill's body. There's no nice way of saying it....so there it is....
...and then gravity starts to take over. So the swelling that started in Jill's ankles many days ago now was because of fluid coming from higher up....and after the ankles came the lower legs, then thighs, then abdomen and then stomach....resulting in where we found ourselves on Saturday morning.
The good news (if there is any) is that the fluid in itself isn't cancerous. The less good news is that there's nothing much that we can do about unblocking the tubes...so that issue isn't going anywhere. However, we can cope with it, al least for now. Coping with it means that the temporary drain (that we've hated so much) will need to become permanent. Permanence brings it's own difficulties. The risk of infection is a real real worry....so we need to do all we can to avoid it. That means a different type of of drain (too complicated to explain today...maybe tomorrow) but at least it can be done....again, maybe tomorrow.
I forgot to mention that in the rush to get to town this morning the steroids, that Jill is taking daily, had been missed. That meant that things were quite as positive as they might have been (it's amazing how much better all round some of these drugs can make you feel).
So, there we were. Tired and steroidless, a bit "down in the dumps" and then told that the drain will become permanent and that "coping" with the fluid is the best we can expect. It really really was a case of "Rainy days and Mondays always get me down". There wasn't much to be positive about....and then the nurse removed the temporary drain (KG had said it had to come out because the risk of infection was too great) and the pain of the removal was unexpected and pretty severe for a couple of brief moments. there really was not very much going right.....and Jill, not unsurprisingly, had a bit of a "moment". I don't blame her.....it wasn't a great hour or so.
On the positive side...we had some dodgy days three weeks ago, and we got through them. Tomorrow will hopefully start from a better place (as I type it's 22:50, and Jill is fast asleep following her normal does of Morphine and Methadone). We are due a meeting with all the powers that be. There will be a "meeting of minds" and then we will see where we go. Certainly the consensus this afternoon was that there won't be any chemo tomorrow.....is that a plus or a minus? My hope is that, by the end of this week, we are learning to live with the drain (we've done it before). The difference this time is that we are not expecting to lose the drain.....so we will need to bet over that and move on.
I'm going to stop there.....there's overnight drugs to be got ready...dogs to "wee"...dishwashers to put on...tumble dryers to empty...and other domestic chores that need sorting. I'm confident that by this time tomorrow I'll be reporting more positive news. I'm not going to edit or check....so apologies for any glaring mistakes...I'm sure our reader will understand.
Sunday, 29 July 2018
Birthday Blog, Damp Drains and Cornish Conclusions.
Today is/was Jill's birthday. In typical true romantic fashion, and before she opened her lorry load of cards and presents, I took her out for lunch. A quiet venue....private room....select service. We both chose roast beef and Yorkshire puddings, and very quickly our plates arrived, steaming hot. We decided to give pudding a miss...but had hot drinks to finish. I hope she realises how I like to treat a girl properly on her special day.
Our reader may have already realised that things may not have been exactly as I am trying to portray...and yes, we were back in the big building in Gloucester Street again. Try as we might, the earliest we could get there this morning was around 11:00. Everything takes sooooo long, and, on top of that, we didn't have a brilliant night. The drain leaked (we weren't surprised)...things got "damp" (we weren't surprised) and Jill started to get short of breath (we weren't expecting that)....but then, as we know, no one expects The Spanish Inquisition!
We got home from hospital at about 22:30 last night in the knowledge that, first thing this morning, we would need to go straight back there. It wasn't much of a uplifting thought....but, as soon as we got up, we started preparing. With the drain "in" a shower wasn't really going to happen, so that would save some time. With Jack once again being "volunteered" for dog walking duties after his night shift that would save me some time too. With Bex helping that saved time as well. SO, how did it take us until 11 to get back there? The truth is that everything takes multiple times longer, and we are still getting used to that. Jill's time keeping has never been good (actually it regularly drives me flippin' mad) but now it's absolutely appalling! We just can't seem to even be fashionably late...we are now way past that....but people seem very understanding.
This evening we have had a family take away....and, as we had it delivered, we didn't even need to go and "take it away". Jill opened all her cards...well over thirty....does she have that many friends?....maybe some of them have sent more than one card!! We've had a good end to the day...and the girls have now retired to watch their beloved Poldark. It's the last episode this evening....what will they do next week?
Tomorrow promises more of the same I'm afraid...but with a slightly different team in place. I have one of my (now very) few political meetings at 11. That's the same time as we have been asked to return to Rayner Ward, so Jack will have to go on deliveries! I can rush over The Parade once I'm finished at Cyril (le Marquand House)....or squirrel, as I prefer to call it. Anyway, with luck the drain can be removed....but we all know how drains have a habit of "overstaying their welcome". How many times have we been told "that drain can come tomorrow" only to find, a week later, that we are still draining away. Let's hope they take it out....drains always seem to leak....everything gets damp or worse....they are (sometimes literally) a pain in the proverbial. At least we have been given some more drugs to deal with the "drain pain"....and some more antibiotics to cover the fact that Jilly has a open hole in the side of her torso! Did I mention....does anyone need any drugs? We have a cupboard full....
I'm going to "save this" now....and I expect that Jill will add a few photos later. I'm also sure there will be a few lines she may wish to pen herself.....but her fingers may get tired quickly....she's getting quite old now don't you know!
Fair play to the 'old man'.... ( bring on his December Birthday!), he does write a good post.
I'm not going to add too much more , just a few pictures, we are already preparing the bedtime ritual, drug delivery, bathroom ablutions, ( getting upstairs can take me a while, and I think there's only twelve steps??.) Total bed remake, Fourteen pillows to arrange, and of course coupled with my breathless instructions to adhere too.. poor man.
Finally home by five pm, It was lovely to walk into my kitchen and be greeted by so many flowers, cards and gifts... I'm so sorry If i just cant get around to thanking everyone properly as it was all so overwhelming and lovely at the same time, I felt very loved and special, with so many kind words and heartfelt wishes...
THANK YOU !!
Realise not my best look, but quite amusing I was given my cupcake with lighted candle ... but as on oxygen.... quickly had to be whipped away!!!
Our reader may have already realised that things may not have been exactly as I am trying to portray...and yes, we were back in the big building in Gloucester Street again. Try as we might, the earliest we could get there this morning was around 11:00. Everything takes sooooo long, and, on top of that, we didn't have a brilliant night. The drain leaked (we weren't surprised)...things got "damp" (we weren't surprised) and Jill started to get short of breath (we weren't expecting that)....but then, as we know, no one expects The Spanish Inquisition!
We got home from hospital at about 22:30 last night in the knowledge that, first thing this morning, we would need to go straight back there. It wasn't much of a uplifting thought....but, as soon as we got up, we started preparing. With the drain "in" a shower wasn't really going to happen, so that would save some time. With Jack once again being "volunteered" for dog walking duties after his night shift that would save me some time too. With Bex helping that saved time as well. SO, how did it take us until 11 to get back there? The truth is that everything takes multiple times longer, and we are still getting used to that. Jill's time keeping has never been good (actually it regularly drives me flippin' mad) but now it's absolutely appalling! We just can't seem to even be fashionably late...we are now way past that....but people seem very understanding.
This evening we have had a family take away....and, as we had it delivered, we didn't even need to go and "take it away". Jill opened all her cards...well over thirty....does she have that many friends?....maybe some of them have sent more than one card!! We've had a good end to the day...and the girls have now retired to watch their beloved Poldark. It's the last episode this evening....what will they do next week?
Tomorrow promises more of the same I'm afraid...but with a slightly different team in place. I have one of my (now very) few political meetings at 11. That's the same time as we have been asked to return to Rayner Ward, so Jack will have to go on deliveries! I can rush over The Parade once I'm finished at Cyril (le Marquand House)....or squirrel, as I prefer to call it. Anyway, with luck the drain can be removed....but we all know how drains have a habit of "overstaying their welcome". How many times have we been told "that drain can come tomorrow" only to find, a week later, that we are still draining away. Let's hope they take it out....drains always seem to leak....everything gets damp or worse....they are (sometimes literally) a pain in the proverbial. At least we have been given some more drugs to deal with the "drain pain"....and some more antibiotics to cover the fact that Jilly has a open hole in the side of her torso! Did I mention....does anyone need any drugs? We have a cupboard full....
I'm going to "save this" now....and I expect that Jill will add a few photos later. I'm also sure there will be a few lines she may wish to pen herself.....but her fingers may get tired quickly....she's getting quite old now don't you know!
Fair play to the 'old man'.... ( bring on his December Birthday!), he does write a good post.
I'm not going to add too much more , just a few pictures, we are already preparing the bedtime ritual, drug delivery, bathroom ablutions, ( getting upstairs can take me a while, and I think there's only twelve steps??.) Total bed remake, Fourteen pillows to arrange, and of course coupled with my breathless instructions to adhere too.. poor man.
Finally home by five pm, It was lovely to walk into my kitchen and be greeted by so many flowers, cards and gifts... I'm so sorry If i just cant get around to thanking everyone properly as it was all so overwhelming and lovely at the same time, I felt very loved and special, with so many kind words and heartfelt wishes...
THANK YOU !!
Saturday, 28 July 2018
Enjoyable ways to spend a Saturday
Let's start by saying that today hasn't been a normal Saturday....well, not normal for normal people. Jill was pretty uncomfortable yesterday evening and announced, at about 22:00, that she was "fed up" with her stomach, and wasn't going to pass the weekend without "sorting things out". So....this morning we got to it, calling Hospice, calling the doctor, speaking to the District Nurse, visiting the doctor at his surgery.....and then the inevitable regular week end booking at A&E. So....after a good couple of hours "downstairs", here we are now ....on Rayner Ward. I thought we'd been banned from this particular ward, but it appears not. They seemed pleased to see us...or maybe it was A&E that were just pleased to move us out!
How long is it since Jill's last post? A couple of days for sure.... actually Tuesday (!!!).....where did those 4 days go? The long and short is that, slowly, Jill's breathing has been getting easier....and her "tummy issues" (let's just leave it at that shall we?) have been quietly getting less easy. I say quietly because, much to Jill's annoyance, there's been very little action (or noise) from her "lower stomach areas"!. I think it's fair to say that we hadn't realised how many different types of laxative there are....or quite how many different ways there are for laxatives to work! We are now officially the Islands leading experts .... or Jill is anyway! Not that any of them have done any good....it would appear that Jill had so much fluid in and around her stomach/abdomen area that nothing was going to get past. The pressure from all the fluid was the issue....basically squashing everything else to the point that things were starting to stop working...if you get my drift.
The stomach issues are not dissimilar to the problems we had post operation back in July 2014...almost to the day! Our reader may remember that back then Jill had a pretty major operation (2 surgeons at the same time) to try to remove tumours from her stomach/abdomen. A dodgy lymph node was gripping so hard to the blood vessel that fed one of her kidneys .... so it was partially left in place. In short, that node then pumped huge amounts of lymph fluid into Jill's abdomen...resulting in an effect not too dissimilar to what we have today. 2014 was far more painful, but 2018 is resulting in similar, less painful, outcomes. As in 2014, a drain has been put in...much relief all round...and Jill already feeling better.
The drain has actually worked so well they've already had to clamp it. In less than three quarters of an hour they've taken 2.3ish litres....too much too quick ..... (wasn't "Too much, too young" a Specials song title?...sorry, I'm going off on pop song titles again). Anyway, the drain is currently switched off.
Last night was quiet. Tom flew off to Luton at 23:10....yes, just before midnight! Easyjet had delays, but then it did sound like the thunderstorms had a major effect on travellers using "trains and boats and planes" (sorry, couldn't resist that...I'm such a big Burt Bacharach fan)....at least Tom got there eventually. Jack was on nights at the Fire Station, and Dan was staying (a long planned overnighter in the Customs Hut) at the Ecrehous. All in all not quite as many people in the house as normal.
Right...latest update....doctor says we should be "good to go" home quite soon....but there's a little procedure that has to be done first. Then back to hospital tomorrow for some more fluid to be taken out. The Doctor and nurses had originally said that they wanted Jill to stay in overnight, but have relented after realising that tomorrow is her birthday. That means we can have a birthday brunch at home and then party on down to the hospital for another couple of hours on the wards! As I said in a recent blog...you can't say they we don't know how to enjoy ourselves!
More soon reader......
- Posted using BlogPress from my iPad
How long is it since Jill's last post? A couple of days for sure.... actually Tuesday (!!!).....where did those 4 days go? The long and short is that, slowly, Jill's breathing has been getting easier....and her "tummy issues" (let's just leave it at that shall we?) have been quietly getting less easy. I say quietly because, much to Jill's annoyance, there's been very little action (or noise) from her "lower stomach areas"!. I think it's fair to say that we hadn't realised how many different types of laxative there are....or quite how many different ways there are for laxatives to work! We are now officially the Islands leading experts .... or Jill is anyway! Not that any of them have done any good....it would appear that Jill had so much fluid in and around her stomach/abdomen area that nothing was going to get past. The pressure from all the fluid was the issue....basically squashing everything else to the point that things were starting to stop working...if you get my drift.
The stomach issues are not dissimilar to the problems we had post operation back in July 2014...almost to the day! Our reader may remember that back then Jill had a pretty major operation (2 surgeons at the same time) to try to remove tumours from her stomach/abdomen. A dodgy lymph node was gripping so hard to the blood vessel that fed one of her kidneys .... so it was partially left in place. In short, that node then pumped huge amounts of lymph fluid into Jill's abdomen...resulting in an effect not too dissimilar to what we have today. 2014 was far more painful, but 2018 is resulting in similar, less painful, outcomes. As in 2014, a drain has been put in...much relief all round...and Jill already feeling better.
The drain has actually worked so well they've already had to clamp it. In less than three quarters of an hour they've taken 2.3ish litres....too much too quick ..... (wasn't "Too much, too young" a Specials song title?...sorry, I'm going off on pop song titles again). Anyway, the drain is currently switched off.
Last night was quiet. Tom flew off to Luton at 23:10....yes, just before midnight! Easyjet had delays, but then it did sound like the thunderstorms had a major effect on travellers using "trains and boats and planes" (sorry, couldn't resist that...I'm such a big Burt Bacharach fan)....at least Tom got there eventually. Jack was on nights at the Fire Station, and Dan was staying (a long planned overnighter in the Customs Hut) at the Ecrehous. All in all not quite as many people in the house as normal.
Right...latest update....doctor says we should be "good to go" home quite soon....but there's a little procedure that has to be done first. Then back to hospital tomorrow for some more fluid to be taken out. The Doctor and nurses had originally said that they wanted Jill to stay in overnight, but have relented after realising that tomorrow is her birthday. That means we can have a birthday brunch at home and then party on down to the hospital for another couple of hours on the wards! As I said in a recent blog...you can't say they we don't know how to enjoy ourselves!
More soon reader......
- Posted using BlogPress from my iPad
Tuesday, 24 July 2018
Day 7 of Chemo 24th July 2018
Not long back from a long day at the local hospital, and before I go any further with this post I must say that the care, treatment and support that everyone gives me whilst I am there is OUTSTANDING.
I feel like everyone is 'on my side', and right across the different departments who are all working together in a massive team effort. The focus and aim being to treat me as a person, listen to me, talk with me and share advice and thoughts is truly overwhelming with the ultimate goal being to empower me with decision making and improve the quality of life that I have with support, helpful advice, hugs, and most of all compassion.
Today has been a good day, so yes, five hours or so inside most of which has been spent sat down in an Oncology chair has been a real lift to my spirits. ( That and the steroid injections!)
Fortunately I had Sue with me all the time, (No1 carer had the time off he was owed), and such was another pair of listening ears, and asking questions person with my chemo/oxygen deprived brain being a very necessary addition.
With my head spinning with new information, the one way for me to process all this is to write it down, so whilst it's still fresh in my mind, here it goes.
We began in the Oncology unit with a blood test, first hurdle, the port itself is becoming 'unstable'. I've gained a huge amount of weight/fluid from my stomach down, but meanwhile my top half is withering away, little stick arms and not much 'chest flesh'. It was hard enough to 'make a pocket' big enough to fit it in the first place, and now the skin has become thin and stretched and not looking pretty (did it ever?). So it's making a bid for freedom, ( think of the film Alien...or maybe don't.)
So, we cross our fingers and cover it up and hope it will last a bit longer at least, I really don't want weekly cannulas, I have no veins left to use, and the pain is rubbish.
Blood results back, HB 9.6
White cell 8.00
Neutrophil 6.70
Platelets 194
Also mildly encouraging the CA 125 has dropped slightly from 3,640, to 2,940, one of the many questions about whether we carry on with the Chemo or not, still difficult to say if it's 'working' or not.
Based on the good blood counts, we went ahead, and even upped the dose again this week. Batten down the hatches, we could be in for a rough ride.
Sat like a Queen on a throne, I then indulged in many conversations with staff and visitors alike, fuelled by black coffee, and Sue's homemade protein lunch. Chatted to NB from Hospice, and decided to carry on with a two week blast of steroids, just dropping the dosage a bit.
A suggested abdomen scan, as it is very swollen, and let's not go into my ongoing bowel issues, but the main reason for the ultra sound would be to see how much fluid is in there, again, it's lymph fluid.
Two problems, firstly, have a drain and take out some fluids, however, you will be taking out albumin, which will deplete the levels, not good, and it could fill up just as quickly.(Oh, how I love having drain needles hanging out everywhere). Or just wait it out and try to deal with the level of discomfort.
Chemo finished around 3pm, and miraculously, favours had been asked/begged and I 'trotted' off to radiology for a chest scan. When I say trotted, my long suffering friend fed up with me and my disparaging remarks about her 'porter' chair driving skills thought it would be good idea for me to walk downstairs, and negotiate wheeling the chair behind me whilst she had the arduous task of carrying my portable oxygen.
Of course, I was spectacularly brilliant, whilst most passer-by's looked on incredulously, ( It was just what I needed though, too long sat down).
Chest scan done, and then straight onto Ultra sound, incredible service and so lucky that being in the hospital, not having to spend another day, another trip, makes the whole process a 100 times better. Especially after a few hours spent having chemo already.
Couple of days to find out the best course of action..
Finally, had a lovely hair wash yesterday at my hairdresser, glad to be able to have some still to wash, although thinning, it's hanging on in.
Plus a short little paddle in the sea down at the Lifeboat slip with two bodyguards and two reluctant four legged 'swimmers'.
I feel like everyone is 'on my side', and right across the different departments who are all working together in a massive team effort. The focus and aim being to treat me as a person, listen to me, talk with me and share advice and thoughts is truly overwhelming with the ultimate goal being to empower me with decision making and improve the quality of life that I have with support, helpful advice, hugs, and most of all compassion.
Today has been a good day, so yes, five hours or so inside most of which has been spent sat down in an Oncology chair has been a real lift to my spirits. ( That and the steroid injections!)
Fortunately I had Sue with me all the time, (No1 carer had the time off he was owed), and such was another pair of listening ears, and asking questions person with my chemo/oxygen deprived brain being a very necessary addition.
With my head spinning with new information, the one way for me to process all this is to write it down, so whilst it's still fresh in my mind, here it goes.
We began in the Oncology unit with a blood test, first hurdle, the port itself is becoming 'unstable'. I've gained a huge amount of weight/fluid from my stomach down, but meanwhile my top half is withering away, little stick arms and not much 'chest flesh'. It was hard enough to 'make a pocket' big enough to fit it in the first place, and now the skin has become thin and stretched and not looking pretty (did it ever?). So it's making a bid for freedom, ( think of the film Alien...or maybe don't.)
So, we cross our fingers and cover it up and hope it will last a bit longer at least, I really don't want weekly cannulas, I have no veins left to use, and the pain is rubbish.
Blood results back, HB 9.6
White cell 8.00
Neutrophil 6.70
Platelets 194
Also mildly encouraging the CA 125 has dropped slightly from 3,640, to 2,940, one of the many questions about whether we carry on with the Chemo or not, still difficult to say if it's 'working' or not.
Based on the good blood counts, we went ahead, and even upped the dose again this week. Batten down the hatches, we could be in for a rough ride.
Sat like a Queen on a throne, I then indulged in many conversations with staff and visitors alike, fuelled by black coffee, and Sue's homemade protein lunch. Chatted to NB from Hospice, and decided to carry on with a two week blast of steroids, just dropping the dosage a bit.
A suggested abdomen scan, as it is very swollen, and let's not go into my ongoing bowel issues, but the main reason for the ultra sound would be to see how much fluid is in there, again, it's lymph fluid.
Two problems, firstly, have a drain and take out some fluids, however, you will be taking out albumin, which will deplete the levels, not good, and it could fill up just as quickly.(Oh, how I love having drain needles hanging out everywhere). Or just wait it out and try to deal with the level of discomfort.
Chemo finished around 3pm, and miraculously, favours had been asked/begged and I 'trotted' off to radiology for a chest scan. When I say trotted, my long suffering friend fed up with me and my disparaging remarks about her 'porter' chair driving skills thought it would be good idea for me to walk downstairs, and negotiate wheeling the chair behind me whilst she had the arduous task of carrying my portable oxygen.
Of course, I was spectacularly brilliant, whilst most passer-by's looked on incredulously, ( It was just what I needed though, too long sat down).
Chest scan done, and then straight onto Ultra sound, incredible service and so lucky that being in the hospital, not having to spend another day, another trip, makes the whole process a 100 times better. Especially after a few hours spent having chemo already.
Couple of days to find out the best course of action..
Finally, had a lovely hair wash yesterday at my hairdresser, glad to be able to have some still to wash, although thinning, it's hanging on in.
Plus a short little paddle in the sea down at the Lifeboat slip with two bodyguards and two reluctant four legged 'swimmers'.
Sunday, 22 July 2018
Lazy Sunday Afternoons....
Weren't the Small Faces a fantastic group...some real classics among their repertoire..."Tin Soldier" maybe has the best ever intro that you'll hear to a rock song....Ronnie Lane was a master, Steve Mariott a genius. Kenny Jones is one only a couple of top drummers who have stood the test of time....who else has a drumming CV that lists The Small Faces, The Faces and The Who making others? Enough rock school lessons....but it did give the hook for today's title.
Jill's drug intake is slowly reducing (on average), but some days are better than others. Less Paracetamol and Oramorph, and the oral antibiotics have now finished. However, we have had our first experience of the "panic button" pill (well, that's what we call it). A couple of nights ago Jill woke up from a deep sleep at about 04:00 and immediately knew she was probably "in bother" and going to struggle to cough and breath at the same time. She decided that it was time to reach for the "panic button", or in pharmaceutical talk, Lorazepam. We only use half a tablet at a time, and these pills are small enough already. You place the pill under your tongue and it dissolves. To cut a long story short, it did trick....the only down side being that Jill could well have slept for the rest of the night and all morning as well. It was a real struggle to "get going", but hey....at least she was here to get going!
Yesterday we had already decided that we would make a big effort to go to Gorey to see the start of Stephe's rowing race to Carteret. We had our first experience of the wheel chair that's been ticking over in my office for the last fortnight...but it has to be said that it all went very well. We parked near Sumas restaurant, so fairly close, and got organised. Oxygen working, check. Wheelchair unfolded, check. Hat and sun cream, check. Finally, and most important, parking disc displayed, double check! We proceeded at some speed past the Moorings and Feast...and on down the pier. It's amazing how quick you can go if you try....and certainly much faster than we've been used to recently.
We arrive just in time for the start.....weather warm, sea glistening, sun high, breeze cooling....it was all good. Things got even better as we started bumping into friends.....two of which we had arranged to meet. Once the racers had all set off for La Bel France we rectified to the Thai restaurant for coffee and shade...both were very much welcomed.
The conversation on the way home centred on what a really good time we had had. This no doubt helped by the fact the wheelchair has just freed up some options that, until recently, we hadn't considered. The fact that Jilly can't really walk far without multiple stops, and then only at a greatly reduced speed, has "forced" us to use the wheelchair.....now we've started we're all wondering why we didn't use it before. The answer is that, as Jill will tell you, using a wheelchair is just another small step down the road of not being able to do things "normally"....and, as we all know, for Jill that's a toughie. As I told her, at least we got there...and we had a really good time...how we did it is immaterial.
So, following the guard boat duty for Stephe, the new boat has just spent its first night in France.....although I haven't yet heard from Jack today so I can't be 100% sure that it hasn't been impounded for some paperwork irregularity. The hope is that they will be back soon after lunch, and the plan is then to hopefully get Jilly and Aunty Angela out for a spin. Let's wait and see what materialises.
So...here we are...just back from our boat trip. What a great day, especially in the lee tucked in under the east coast. We did a couple of runs around the bay and then picked up a visitor's mooring at Gorey. Tea and biscuits in the sun...watching the (boating) world go by.....lovely. Met some friends at sea....and more back dry land....and when we got back the fantastic AH was delivering our supper. I'm just back now from walking the dogs...and the vegetables are now on...so food in 15! Jilly has coped well again today and I think has had a good time at sea. She says she will post some photos from her laptop.
Another week starts tomorrow...who know what it will bring. Chemo is due again on Tuesday, but is it working? We haven't had a CA125 result lately...so we don't know what the cancer markers are doing. Only a CT scan would really tell us....but that means lying flat (something that we don't do any more, lung issues that provoke coughing fits). I suspect we will also need some more advice on "fluid" issues. There's definitely no less than there was....and we know that draining more fluid out only reduces the Albumin levels further...which then releases more fluid into the body. A no win situation unfortunately.....but no doubt there may be something we can do....lets hope so.
Tonight we will be glued to TVs....I'll be watching the golf highlights and Jill the next Poldark episode. There's never a dull moment in the Luce household....don't say we don't know how to enjoy ourselves!
Rowing race/coffee with friends ....
Two random locals......
Cup of coffee & biscuit time?
- Posted using BlogPress from my iPad
Jill's drug intake is slowly reducing (on average), but some days are better than others. Less Paracetamol and Oramorph, and the oral antibiotics have now finished. However, we have had our first experience of the "panic button" pill (well, that's what we call it). A couple of nights ago Jill woke up from a deep sleep at about 04:00 and immediately knew she was probably "in bother" and going to struggle to cough and breath at the same time. She decided that it was time to reach for the "panic button", or in pharmaceutical talk, Lorazepam. We only use half a tablet at a time, and these pills are small enough already. You place the pill under your tongue and it dissolves. To cut a long story short, it did trick....the only down side being that Jill could well have slept for the rest of the night and all morning as well. It was a real struggle to "get going", but hey....at least she was here to get going!
Yesterday we had already decided that we would make a big effort to go to Gorey to see the start of Stephe's rowing race to Carteret. We had our first experience of the wheel chair that's been ticking over in my office for the last fortnight...but it has to be said that it all went very well. We parked near Sumas restaurant, so fairly close, and got organised. Oxygen working, check. Wheelchair unfolded, check. Hat and sun cream, check. Finally, and most important, parking disc displayed, double check! We proceeded at some speed past the Moorings and Feast...and on down the pier. It's amazing how quick you can go if you try....and certainly much faster than we've been used to recently.
We arrive just in time for the start.....weather warm, sea glistening, sun high, breeze cooling....it was all good. Things got even better as we started bumping into friends.....two of which we had arranged to meet. Once the racers had all set off for La Bel France we rectified to the Thai restaurant for coffee and shade...both were very much welcomed.
The conversation on the way home centred on what a really good time we had had. This no doubt helped by the fact the wheelchair has just freed up some options that, until recently, we hadn't considered. The fact that Jilly can't really walk far without multiple stops, and then only at a greatly reduced speed, has "forced" us to use the wheelchair.....now we've started we're all wondering why we didn't use it before. The answer is that, as Jill will tell you, using a wheelchair is just another small step down the road of not being able to do things "normally"....and, as we all know, for Jill that's a toughie. As I told her, at least we got there...and we had a really good time...how we did it is immaterial.
So, following the guard boat duty for Stephe, the new boat has just spent its first night in France.....although I haven't yet heard from Jack today so I can't be 100% sure that it hasn't been impounded for some paperwork irregularity. The hope is that they will be back soon after lunch, and the plan is then to hopefully get Jilly and Aunty Angela out for a spin. Let's wait and see what materialises.
So...here we are...just back from our boat trip. What a great day, especially in the lee tucked in under the east coast. We did a couple of runs around the bay and then picked up a visitor's mooring at Gorey. Tea and biscuits in the sun...watching the (boating) world go by.....lovely. Met some friends at sea....and more back dry land....and when we got back the fantastic AH was delivering our supper. I'm just back now from walking the dogs...and the vegetables are now on...so food in 15! Jilly has coped well again today and I think has had a good time at sea. She says she will post some photos from her laptop.
Another week starts tomorrow...who know what it will bring. Chemo is due again on Tuesday, but is it working? We haven't had a CA125 result lately...so we don't know what the cancer markers are doing. Only a CT scan would really tell us....but that means lying flat (something that we don't do any more, lung issues that provoke coughing fits). I suspect we will also need some more advice on "fluid" issues. There's definitely no less than there was....and we know that draining more fluid out only reduces the Albumin levels further...which then releases more fluid into the body. A no win situation unfortunately.....but no doubt there may be something we can do....lets hope so.
Tonight we will be glued to TVs....I'll be watching the golf highlights and Jill the next Poldark episode. There's never a dull moment in the Luce household....don't say we don't know how to enjoy ourselves!
Captain Tom
- Posted using BlogPress from my iPad
Friday, 20 July 2018
From our political correspondent
Did our reader know that we have the builders "in"? I'm not sure if it's been mentioned. Anyway, as everyone will know by now, we don't do things by halves, so (as if there isn't anything going on at home at the moment) we have finally been getting on with converting our old potato loft into a one bedroom flat. "Who's that for?" I can hear you ask...and it's a good question. Let's just say that, at the moment, it's still out for an official decision sometime later this year.
I digress. We have builders on site. The scaffolders have been....the roofers have been (and gone) and we are now, from an appearance point of view, back where we started. We have a smart new roof...and work inside is underway. It was time to get a portaloo for outside. I made some calls and one arrived very promptly. I was happy....but not as happy (apparently) as my builders. "It's an event toilet" they told me. "What?" I replied. It transpired that what we have is no standard builders portaloo.....it's a proper fully specked out version, with all the trimmings. Proper soap, and towels, and probably shaving points and after shave I wouldn't be surprised.....and there was me thinking they were all alike! Anyway, the builders are well made up....i'll probably find they now spend inordinate amounts of time in there! However, I did point out that every day at Seaford is an "event" so they shouldn't be surprised.
There is a reason that I know that every day is an "event".
Recently Jill has moaned a lot when she's been tired....and my standard excuse has always been that "you're tired because we haven't had a "normal" day". There's always something that has happened...been to hospital,more Hospice, or been out, or had visitors, or something. A normal day for me (well, for Jill actually) would be just to spend time getting up, have breakfast, maybe potter in the kitchen, lunch, sleep, potter, rest, supper, rest, potter and finally bed......just a standard day. The point is that, when I actually stood back and analysed it, normal days are very few and far between...indeed, very Abnormal. So, most days contain an "event" of some description....and maybe our events portaloo is pretty apt.
That's Steve's piece, and following on from the posh loo saga, some of my family think it's a very good idea that in my worsening health state I take note of what they tell me and 'get a commode' .Only useful at night when if I sleep downstairs and need the toilet it's a bit of a trek with oxygen in tow to navigate my way, and then should anything go awry no one would hear my pleas for help .
I have resisted so far, and have taken to sleeping back upstairs to solve the problem (bathroom much closer, shouting distance!) and give Steve more earache, even though he gets enough of it in the daylight hours.
Of course I see the solution now, I'll just drag our new portaloo in and problem solved, the builders can have the commode?
Jill's Drug Chart
Finished antibiotics!
No more Naproxen either.
Two doses of methadone daily. ( cough suppressant )
Morphine as and when I need it ( helps with breathing ? More like knocks me out!)= peace for family.
Regular paracetamol usage, ( general pain relief)
Probiotic ( lines the stomach, encourages good bacteria )
Oh, and as from yesterday I've been put on steroids , 10 days course.
Seems as if they will cover a multitude of issues, bowel being the major one, but maybe also give me a bit more energy, mood a little lighter and possibly even to help shrink a few tumours.
It's got to the stage where as long as I know, what they are giving me and why, and it helps with my quality of life ( theirs and mine main aim) then I accept, but it's been jolly hard to take such a lot of strong drugs when I thought Nurofen three days running was excessive.... ( let's not even mention CHEMO)
I'm still trying to work on my diet, and include protein, my albumin levels are very low, hence the water filled tree trunks that are called legs which are still suffering badly. Forti juice drinks and calgon shots consumed daily, but I need a more balanced diet for the gut to work properly, however I have very, little appetite , my lack of mobility and constant feeling of fullness in my extended stomach doesn't help the cause .
Once again it's all about me...
Steve's drug chart
Antihistamines
Antibiotics ( plus after docs visit again today , a further weeks supply , as its seems his arm hasn't got a lot better and he has an infection of some sort.
Told he should have his arm in a sling and rest it. I quote " As if that's going to happen " unquote.
The rest of the tribe? The two that are married and wear the uniforms are 'saving lives' on a daily basis. The eldest is designing software to get people more organised and make their lives simpler and more streamlined ( or something like that) . The salty, sun baked one is flat out providing a huge service to holiday makers and locals alike ( as well as working on his tan and paddle board skills) and the youngest spends 'some' time at work, or is at home being bossed around by me.
The two four legged 'girls', spend lots of their day confused, nothing seems to have been 'normal' in their lives for ages. I am saddened that Beanie particularly is wary around me, doesn't like the oxygen tubes, or even the fact I probably 'smell' differently.
I also can't bend over very well to give them proper cuddles, and have not 'walked' anywhere in over a fortnight . Think I may have to succumb to being in that wheelchair that I know the family have hidden in the shed ready for my use ..... At least I could maybe use it as a racing chariot or even 'pimp' it up a little ? Harness the dogs, off I go.....
- Posted using BlogPress from my iPad
I digress. We have builders on site. The scaffolders have been....the roofers have been (and gone) and we are now, from an appearance point of view, back where we started. We have a smart new roof...and work inside is underway. It was time to get a portaloo for outside. I made some calls and one arrived very promptly. I was happy....but not as happy (apparently) as my builders. "It's an event toilet" they told me. "What?" I replied. It transpired that what we have is no standard builders portaloo.....it's a proper fully specked out version, with all the trimmings. Proper soap, and towels, and probably shaving points and after shave I wouldn't be surprised.....and there was me thinking they were all alike! Anyway, the builders are well made up....i'll probably find they now spend inordinate amounts of time in there! However, I did point out that every day at Seaford is an "event" so they shouldn't be surprised.
There is a reason that I know that every day is an "event".
Recently Jill has moaned a lot when she's been tired....and my standard excuse has always been that "you're tired because we haven't had a "normal" day". There's always something that has happened...been to hospital,more Hospice, or been out, or had visitors, or something. A normal day for me (well, for Jill actually) would be just to spend time getting up, have breakfast, maybe potter in the kitchen, lunch, sleep, potter, rest, supper, rest, potter and finally bed......just a standard day. The point is that, when I actually stood back and analysed it, normal days are very few and far between...indeed, very Abnormal. So, most days contain an "event" of some description....and maybe our events portaloo is pretty apt.
That's Steve's piece, and following on from the posh loo saga, some of my family think it's a very good idea that in my worsening health state I take note of what they tell me and 'get a commode' .Only useful at night when if I sleep downstairs and need the toilet it's a bit of a trek with oxygen in tow to navigate my way, and then should anything go awry no one would hear my pleas for help .
I have resisted so far, and have taken to sleeping back upstairs to solve the problem (bathroom much closer, shouting distance!) and give Steve more earache, even though he gets enough of it in the daylight hours.
Of course I see the solution now, I'll just drag our new portaloo in and problem solved, the builders can have the commode?
Jill's Drug Chart
Finished antibiotics!
No more Naproxen either.
Two doses of methadone daily. ( cough suppressant )
Morphine as and when I need it ( helps with breathing ? More like knocks me out!)= peace for family.
Regular paracetamol usage, ( general pain relief)
Probiotic ( lines the stomach, encourages good bacteria )
Oh, and as from yesterday I've been put on steroids , 10 days course.
Seems as if they will cover a multitude of issues, bowel being the major one, but maybe also give me a bit more energy, mood a little lighter and possibly even to help shrink a few tumours.
It's got to the stage where as long as I know, what they are giving me and why, and it helps with my quality of life ( theirs and mine main aim) then I accept, but it's been jolly hard to take such a lot of strong drugs when I thought Nurofen three days running was excessive.... ( let's not even mention CHEMO)
I'm still trying to work on my diet, and include protein, my albumin levels are very low, hence the water filled tree trunks that are called legs which are still suffering badly. Forti juice drinks and calgon shots consumed daily, but I need a more balanced diet for the gut to work properly, however I have very, little appetite , my lack of mobility and constant feeling of fullness in my extended stomach doesn't help the cause .
Once again it's all about me...
Steve's drug chart
Antihistamines
Antibiotics ( plus after docs visit again today , a further weeks supply , as its seems his arm hasn't got a lot better and he has an infection of some sort.
Told he should have his arm in a sling and rest it. I quote " As if that's going to happen " unquote.
The rest of the tribe? The two that are married and wear the uniforms are 'saving lives' on a daily basis. The eldest is designing software to get people more organised and make their lives simpler and more streamlined ( or something like that) . The salty, sun baked one is flat out providing a huge service to holiday makers and locals alike ( as well as working on his tan and paddle board skills) and the youngest spends 'some' time at work, or is at home being bossed around by me.
The two four legged 'girls', spend lots of their day confused, nothing seems to have been 'normal' in their lives for ages. I am saddened that Beanie particularly is wary around me, doesn't like the oxygen tubes, or even the fact I probably 'smell' differently.
I also can't bend over very well to give them proper cuddles, and have not 'walked' anywhere in over a fortnight . Think I may have to succumb to being in that wheelchair that I know the family have hidden in the shed ready for my use ..... At least I could maybe use it as a racing chariot or even 'pimp' it up a little ? Harness the dogs, off I go.....
- Posted using BlogPress from my iPad
Tuesday, 17 July 2018
Post party blues.
Tricky day Monday, lots of tired faces, mine included and I did nothing. Clearing up all done on Sunday, but still little jobs that needed addressing come the start of the week.
Plus the majority of my family had to leave the island, its never easy to say goodbye, but of course this time is particularly painful. I appreciate they are only a flight away, but sometimes even that feels too far.
There's never enough hugs, kisses or "I love you's" that make up for being with that person in the flesh. Don't get me wrong, my Jersey family are HUGELY supportive, I have absolutely no idea how I would have coped without them. Friends are queueing up to help out, meals/washing/ironing/ etc.
Cards with heartfelt messages, flowers, and texts/email are still being delivered on a daily basis. I'm sorry If I don't reply to everyone, I'm missing birthdays, anniversaries and plenty more beside, once again my apologies. I'm usually on top of the game, but not having driven myself for over two weeks, or been in a shop etc, my focus has had to be on myself. (I always was ME ME ME !)
Monday, on the plus side my coughing is much better, my pain is under control (more or less) I'm off the IV antibiotic, ( now on oral) no drain, no gripper needle stuck in my chest port, life should be easier, but...............my breathing is really quite bad. I can't manage even short distances without my nose tubes plugged in. I sleep with the the rhythm of the oxygen converters whooshing and sighing, (I say 'sleep', it is of sorts, but frequently wake struggling for breath and coughing, scary).
Did manage to get out of the house and 'go for a drive in the car', that's what happens when you're ill, old and infirm, you get little outings ( took the oxygen, forewent the blanket).
Popped into the chemist for drug supplies, and as Steve had woken with a very sore inflamed elbow/arm, told him to speak to the pharmacist about it. Very quickly it was ascertained he needed to go to the doctors, appointment booked and off he went.Anti-histamine and antibiotics straight away, but unsure of the cause. Steph marked the area with permeant marker...to see if the inflamed area grow, he doesn't feel 100% unsurprisingly. This has resulted in smashing a plate from the dishwasher, a slightly raised temperature and a mild confusion on my drug administration.
I've told him, he has no right to upstage me, so at the moment we are bumbling around each other like the blind leading the blind. He got sent off with Bex this morning to attend a meeting at hospital (!) with her, she was seeing Dr AS from Guy's hospital regarding her BRCA 2 gene amongst other stuff.
They chatted for quite some time, and he asked after me, and apparently has been doing quite a lot of thinking about the whole family. The fact that I am so chemo sensitive, my children who all had a 50/50 chance of inheriting the gene, all have it a 6% chance of all four having it, and various other seemingly confusing and conflicting evidence. Interesting. I think he is trying to get to understand Bex and all her issues, and will talk to the Southampton team who's care she was under originally.
Today Tim and Janet had the pleasure of taking me into hospital for bloods and chemo, we met up with Sue, its now a tie between Sue and Tim which is the worst "Porter Chair Pusher/Puller" in the world. Close. They do however both claim the chair is at fault, by not having swivel wheels at the front. You know what they say about a bad workman...
Bloods taken , port had severe talking to, but behaved. Wheeled ( badly) down to X-Ray, had chest scan. Back on Oncology, had a call from Dr PS who said small accumulation of fluid, but not enough to worry about, suggested if bloods were good, then chemo. Once again amazingly bloods (despite HB dropping) were good ( what's that all about??) They said I looked ok, better than last week , (is shortness of breath, tubes up your nose a good look?, maybe its the new blusher??).
Had chemo, fell asleep ( first time?) poor Sue, she said she didn't mind! It's what I needed. Too much excitement, effort and anti-histamine.
We leave, this time I engage a professional porter.... our chair was stolen whilst having chemo!
The joke was on me, as Sue being ever helpful went to bring the car around to the back of the hospital so I could just 'jump' straight in. We had drugs to pick up from pharmacy. The Porter took me to the counter, wrong counter as it turns out. Luckily I knew girl in front of me. We chatted, Porter took phone call, explained to me he had to go, but the staff would ring and he would come back! He 'parked' me between the two counter, close to neither. As it turns out knew the lady waiting at the next counter, we chatted.
I stretched between counters trying to explain about a script I had no paper for..., man behind decided he could take my brakes off and move me, meanwhile the nice lady behind counter said she'd come around, and speak to me, meanwhile I exaggerate not, a queue of 8/9 people had built up behind me and both counters.
She said, 'lets just move you out of the way a bit," a sensible move as I felt a little abandoned! We chatted she understood and whizzed off to see what she could do. All the other 'drug collectors' pretended not to listen but were probably pleased of the the amusing distraction of the entertainment to relieve the boredom.
Script handed over and I thanked her profusely, Sue sat in the chaos out of the back of the hospital waiting...... First friend had stayed, offered to 'drive' me to the car, brave brave move.. we managed, few hairy moments, but I did thank her!!
Finally, did I tell you about last week, when we left EAU? I was being stubborn (!) and said I don't need oxygen and walked along from one ward along the length of the other, of course by the time I got to the reception I couldn't get enough breath to speak. Steve who had been carrying the portable oxygen turned to me, slightly embarrassed and said through gritted teeth "Put....your....oxygen.... on". meekly I did as I was told, and within two minutes tried to speak, managing just, before I turned to him and said "I don't think you've turned it on".... now who was embarrassed! We both ended up laughing, although mine was more snorty, silent, sniggering.
Can you tell I have had steroids today?
Our flower/vegetable garden, i finally got to see...
Plus the majority of my family had to leave the island, its never easy to say goodbye, but of course this time is particularly painful. I appreciate they are only a flight away, but sometimes even that feels too far.
There's never enough hugs, kisses or "I love you's" that make up for being with that person in the flesh. Don't get me wrong, my Jersey family are HUGELY supportive, I have absolutely no idea how I would have coped without them. Friends are queueing up to help out, meals/washing/ironing/ etc.
Cards with heartfelt messages, flowers, and texts/email are still being delivered on a daily basis. I'm sorry If I don't reply to everyone, I'm missing birthdays, anniversaries and plenty more beside, once again my apologies. I'm usually on top of the game, but not having driven myself for over two weeks, or been in a shop etc, my focus has had to be on myself. (I always was ME ME ME !)
Monday, on the plus side my coughing is much better, my pain is under control (more or less) I'm off the IV antibiotic, ( now on oral) no drain, no gripper needle stuck in my chest port, life should be easier, but...............my breathing is really quite bad. I can't manage even short distances without my nose tubes plugged in. I sleep with the the rhythm of the oxygen converters whooshing and sighing, (I say 'sleep', it is of sorts, but frequently wake struggling for breath and coughing, scary).
Did manage to get out of the house and 'go for a drive in the car', that's what happens when you're ill, old and infirm, you get little outings ( took the oxygen, forewent the blanket).
Popped into the chemist for drug supplies, and as Steve had woken with a very sore inflamed elbow/arm, told him to speak to the pharmacist about it. Very quickly it was ascertained he needed to go to the doctors, appointment booked and off he went.Anti-histamine and antibiotics straight away, but unsure of the cause. Steph marked the area with permeant marker...to see if the inflamed area grow, he doesn't feel 100% unsurprisingly. This has resulted in smashing a plate from the dishwasher, a slightly raised temperature and a mild confusion on my drug administration.
I've told him, he has no right to upstage me, so at the moment we are bumbling around each other like the blind leading the blind. He got sent off with Bex this morning to attend a meeting at hospital (!) with her, she was seeing Dr AS from Guy's hospital regarding her BRCA 2 gene amongst other stuff.
They chatted for quite some time, and he asked after me, and apparently has been doing quite a lot of thinking about the whole family. The fact that I am so chemo sensitive, my children who all had a 50/50 chance of inheriting the gene, all have it a 6% chance of all four having it, and various other seemingly confusing and conflicting evidence. Interesting. I think he is trying to get to understand Bex and all her issues, and will talk to the Southampton team who's care she was under originally.
Today Tim and Janet had the pleasure of taking me into hospital for bloods and chemo, we met up with Sue, its now a tie between Sue and Tim which is the worst "Porter Chair Pusher/Puller" in the world. Close. They do however both claim the chair is at fault, by not having swivel wheels at the front. You know what they say about a bad workman...
Bloods taken , port had severe talking to, but behaved. Wheeled ( badly) down to X-Ray, had chest scan. Back on Oncology, had a call from Dr PS who said small accumulation of fluid, but not enough to worry about, suggested if bloods were good, then chemo. Once again amazingly bloods (despite HB dropping) were good ( what's that all about??) They said I looked ok, better than last week , (is shortness of breath, tubes up your nose a good look?, maybe its the new blusher??).
Had chemo, fell asleep ( first time?) poor Sue, she said she didn't mind! It's what I needed. Too much excitement, effort and anti-histamine.
We leave, this time I engage a professional porter.... our chair was stolen whilst having chemo!
The joke was on me, as Sue being ever helpful went to bring the car around to the back of the hospital so I could just 'jump' straight in. We had drugs to pick up from pharmacy. The Porter took me to the counter, wrong counter as it turns out. Luckily I knew girl in front of me. We chatted, Porter took phone call, explained to me he had to go, but the staff would ring and he would come back! He 'parked' me between the two counter, close to neither. As it turns out knew the lady waiting at the next counter, we chatted.
I stretched between counters trying to explain about a script I had no paper for..., man behind decided he could take my brakes off and move me, meanwhile the nice lady behind counter said she'd come around, and speak to me, meanwhile I exaggerate not, a queue of 8/9 people had built up behind me and both counters.
She said, 'lets just move you out of the way a bit," a sensible move as I felt a little abandoned! We chatted she understood and whizzed off to see what she could do. All the other 'drug collectors' pretended not to listen but were probably pleased of the the amusing distraction of the entertainment to relieve the boredom.
Script handed over and I thanked her profusely, Sue sat in the chaos out of the back of the hospital waiting...... First friend had stayed, offered to 'drive' me to the car, brave brave move.. we managed, few hairy moments, but I did thank her!!
Finally, did I tell you about last week, when we left EAU? I was being stubborn (!) and said I don't need oxygen and walked along from one ward along the length of the other, of course by the time I got to the reception I couldn't get enough breath to speak. Steve who had been carrying the portable oxygen turned to me, slightly embarrassed and said through gritted teeth "Put....your....oxygen.... on". meekly I did as I was told, and within two minutes tried to speak, managing just, before I turned to him and said "I don't think you've turned it on".... now who was embarrassed! We both ended up laughing, although mine was more snorty, silent, sniggering.
Can you tell I have had steroids today?
Sunday, 15 July 2018
The morning after the night before....
My wife must be feeling a little brighter today...she's done nothing but moan about how little she's done today....so I've just reminded her that, despite doing nothing, she hasn't done enough to write her blog....and in true "husband does what his wife wants" here I am scribbling a few lines.
The last couple of days has been just as much of a blur as normal, actually that's not right...it has certainly been a lot more so. Wedding preparations went on at a pace...."outlaws" from the UK continued to arrive....but there were no last minute hiccups and everything went really really well. A truly great day that will give us so many memorable moments for a long time to come. Jilly paced herself and also did the Chapel, the meal and speeches and then came back for a third outing so as to be able to see the cake cutting, the first dance....and ended up doing a couple of dances herself.
I need to point out at the this stage that this "dancing" was nothing remotely resembling a normal Jilly Luce dance session.....As we all know, Jill likes to get on the dance floor early...and then stay there for the duration. Last night she danced with various family members, but I can assure our blog reader that at no time did Jill's feet move. I know it's difficult to believe, but it was a lot more of "gentle sway" than anything else. The important thing was that Jilly was there...and she got on the dance floor....so we all went home happy. Some of us were more tired than others...some a little drunker than others...but everyone had a really really good time. I won't dwell,because i'm sure Jill will want to say a bit more herself.
Other news over the last few days includes boat trips this morning for the English invaders....a trip to the hairdressers (with oxygen in tow) and a big decision this morning to get back on the Naproxen (that very helpful anti-inflammatory drug that we didn't want to take with the talc in the lung). Jill has been very uncomfortable since the drain was taken out...she feels tired...and has been put putting off starting the Naproxen for over 36 hours. Finally she took some this afternoon.....if luck the effects will kick in and allow Jill to get a full nights sleep this evening.
Steve's written this post on the iPad , so I'll have to add photos later. It's was an incredibly moving, emotional and beautiful day , the bride was stunning and the groom brushed up quite well too!
The speeches were excellent ( OK , so I'm biased) , the flower arrangements spectacular, the cake was amazing and most things went according to plan, ( and the other stuff that didn't nobody knew about anyway ).
I was so pleased to be a part of it, despite needing two breaks in between , where my every need was catered for, drivers, carers, waiters, oxygen bearers etc.
Today I have only moved from the kitchen to the sitting room bed, talked a bit, slept, rested and watched tennis.
It's been very lovely seeing my family , although frustrating that I can do nothing in the way of being a 'hostess' , more of a 'please could you do this job, that job, etc etc) .. And even then often my brain doesn't engage .
Thankful for the the lovely messages of support, well wishes for the happy couple, and appreciative of all the offers of help I/we have had over the last few weeks / months .
Thank you xxx
A few photos.....
- Posted using BlogPress from my iPad
The last couple of days has been just as much of a blur as normal, actually that's not right...it has certainly been a lot more so. Wedding preparations went on at a pace...."outlaws" from the UK continued to arrive....but there were no last minute hiccups and everything went really really well. A truly great day that will give us so many memorable moments for a long time to come. Jilly paced herself and also did the Chapel, the meal and speeches and then came back for a third outing so as to be able to see the cake cutting, the first dance....and ended up doing a couple of dances herself.
I need to point out at the this stage that this "dancing" was nothing remotely resembling a normal Jilly Luce dance session.....As we all know, Jill likes to get on the dance floor early...and then stay there for the duration. Last night she danced with various family members, but I can assure our blog reader that at no time did Jill's feet move. I know it's difficult to believe, but it was a lot more of "gentle sway" than anything else. The important thing was that Jilly was there...and she got on the dance floor....so we all went home happy. Some of us were more tired than others...some a little drunker than others...but everyone had a really really good time. I won't dwell,because i'm sure Jill will want to say a bit more herself.
Other news over the last few days includes boat trips this morning for the English invaders....a trip to the hairdressers (with oxygen in tow) and a big decision this morning to get back on the Naproxen (that very helpful anti-inflammatory drug that we didn't want to take with the talc in the lung). Jill has been very uncomfortable since the drain was taken out...she feels tired...and has been put putting off starting the Naproxen for over 36 hours. Finally she took some this afternoon.....if luck the effects will kick in and allow Jill to get a full nights sleep this evening.
Steve's written this post on the iPad , so I'll have to add photos later. It's was an incredibly moving, emotional and beautiful day , the bride was stunning and the groom brushed up quite well too!
The speeches were excellent ( OK , so I'm biased) , the flower arrangements spectacular, the cake was amazing and most things went according to plan, ( and the other stuff that didn't nobody knew about anyway ).
I was so pleased to be a part of it, despite needing two breaks in between , where my every need was catered for, drivers, carers, waiters, oxygen bearers etc.
Today I have only moved from the kitchen to the sitting room bed, talked a bit, slept, rested and watched tennis.
It's been very lovely seeing my family , although frustrating that I can do nothing in the way of being a 'hostess' , more of a 'please could you do this job, that job, etc etc) .. And even then often my brain doesn't engage .
Thankful for the the lovely messages of support, well wishes for the happy couple, and appreciative of all the offers of help I/we have had over the last few weeks / months .
Thank you xxx
A few photos.....
The 'happy' couple crashed out tonight.... on my bed !!!
- Posted using BlogPress from my iPad
Location:Seaford
Thursday, 12 July 2018
Something old, something new, something borrowed and something blue......
Firstly, my apologies for not updating this blog, I have been unbelievably tired, and the days seem to race by, but I get very little done, or so it seems.
Monday I had the district nurse to administer my IV antibiotics, do my Sats, etc, then the lymph lady from Hospice arrived to try and relieve some of the pressure from my swollen legs, which was tricky, as it's not just lymph and you don't want to make it worse.
My lovely beautician ( who doesn't work Mondays, or do home visits) came especially to paint my toe nails ( difficult with fat feet, but so kind of her), ready for the wedding obviously.
My Nephew who had arrived that day kindly picked me up and took me to hospital, where I had an appointment with haematology, Tom met me at the hospital and took charge of the portable oxygen, and managed to negotiate corridors and lifts with out either of us becoming separated or entangled.
Up on EAU again to see if it was possible that the lung had drained enough to have the pleurodesis, (talc), but no I was still making far too much liquid. Tom left, Bex took over oxygen/mum sitting duties. Its now late afternoon.
Arriving back home I was tired, and had a brief rest, but really wanted a paddle, so Steve took the dogs down through the woods to the beach and Bex and I drove down to St Catherines and we met up with my sister-in -law and niece.
As you can see the legs are terrible but the water was lovely, however I don't have a lot of sensitivity in them and think I stayed in too long.
Monday I had the district nurse to administer my IV antibiotics, do my Sats, etc, then the lymph lady from Hospice arrived to try and relieve some of the pressure from my swollen legs, which was tricky, as it's not just lymph and you don't want to make it worse.
My lovely beautician ( who doesn't work Mondays, or do home visits) came especially to paint my toe nails ( difficult with fat feet, but so kind of her), ready for the wedding obviously.
My Nephew who had arrived that day kindly picked me up and took me to hospital, where I had an appointment with haematology, Tom met me at the hospital and took charge of the portable oxygen, and managed to negotiate corridors and lifts with out either of us becoming separated or entangled.
Up on EAU again to see if it was possible that the lung had drained enough to have the pleurodesis, (talc), but no I was still making far too much liquid. Tom left, Bex took over oxygen/mum sitting duties. Its now late afternoon.
Arriving back home I was tired, and had a brief rest, but really wanted a paddle, so Steve took the dogs down through the woods to the beach and Bex and I drove down to St Catherines and we met up with my sister-in -law and niece.
Subsequently when I got back home, I was so tired I fell asleep, and then got quite cold, and didnt feel at all well.
Tuesday morning, district nurse as usual, and then Sue picked me up and we went off for chemo, and once again the port was refusing to work. It took the best part of an hour, with the experienced nurse using every trick in the book. Finally we had enough blood to fill a few test tubes to see if I could actually go ahead and have the Taxol. Luckily with the help of the previous weeks blood transfusions, and all other white cells/neutrophils playing the game(amazingly) we were good to go.
Three hours later we leave the hospital, initially I am quite chatty and bright, but by the time the steroids wear off I crash. Slept all evening, and quite a lot in the night too.
Wednesday morning, district nurse ( get the pattern? usually takes around 45 minutes to an hour). Shelagh kindly picks me up afterwards and takes me to the hairdresser, where I just have my limp curls washed, makes me feel a whole lot better. Showering/bathing is a real issue as I cant get the drain or the port wet, plus the logistics of heaving two fat dead legs into the shower and out requires massive effort, takes me ages and is tiring.
My nephew Alex and Ruth arrive home with my little bro Tim and his wife Janet, they've had a good flight over and a nice fish meal lunch at Falkners fisheries (alright for some).
Once again I have to retire to my day bed, and after a chat with the Hospice Community Nurse, I sleep the afternoon away.
I do manage to watch tennis on TV and a little of the football. Lets leave that sentence there.
This morning the nurse is early as I have to be in hospital at 11am to see Dr PS and hopefully have the 'talc'. I cannot take my painkillers (anti inflammatories ) the ones stopping the drain pain, as the idea is we want the lung to become inflamed and 'absorb' the talc.
I can carry on with morphine, and methadone and paracetamol... told you I was a 'junkie'.
There was STILL fluid accumulating in the lung, we aspirated, I took up various positions to swish the liquid near the drain (not entirely pain free) to try and empty it as much as possible, and finally after double checking the ultra sound we decided to go for it.
Talc was administered , and then after ten minutes or so I had to move around, the idea being to coat the lung as much as possible. With no painkillers I was terrified of coughing, remembering the pain I had previously.
Tentatively we left EAU to go to Oncology as my port covering plaster needed to be replaced and I had to book in for a blood test tomorrow (Friday ). They were busy, but did manage to fit me in, and then Steve and I went down to the cafe for a late lunch.
Back on EAU and new drain bag fitted, which I keep in until tomorrow morning. All well so far. We come home 3pm. My big bro Pete and his wife Donnas have arrived. I chat a bit and then once again retire for a sleep/ non talking/ moving time.
Mostly pain free, except when I cough, or move too fast (unlikely). Hope I can get through the night, we've a big day tomorrow. All hands on deck the Marquee is up, tables need to be laid and plenty of flower arranging to do. Sister Sally and Jack arrive tomorrow and Betty is back too, so many hands make light work.
Sunday, 8 July 2018
Pleasant Valley Sunday
Okay, so we've a Monkey's song title for today's blog. No real reason...other than it is a very pleasant Sunday, but not really sure where the valley bit comes in. However, I have already walked the dogs down our valley for an early swim (them, not me, I might add....although I was tempted). Isn't it warm....actually flippin' toasty...dogs just went straight in the sea and lay down. I guess you'll have realised by now that this is Steve here....I think her ladyship would have struggled...with the walk down the valley that is...but maybe later this afternoon we can manage another paddle somewhere on the east coast....Anne Port?
The last time Jill posted was Friday, so there's some catching up to do. We started early yesterday with a trip to hospital. Jilly's drain wasn't working, and it was doing more leaking than draining. That in itself isn't a huge or serious problem as such, but it was uncomfortable for Jilly and needed fixing....and, despite asking District Nurses and other people, it was only the consultant that could "sort it out". We sent a message, headed for town, and when we got there the consultant very kindly came in to the hospital to try to "get it going" (BIG thanks to PS for that). It's just a question of flushing through and, with the help of a video record, I was "given a go" under supervision so I can now "do the procedure" myself at home. I'm not sure it's something I'll make too much of....although being "able to aspirate a lung drain" isn't something everyone has on their CV!
I digress....we came home from the hospital via a visit to M&S (Jill didn't come in I hasten to add....just provided a scrawled list for me to attempt to interpret while pushing a trolley around the aisles looking bemused). We came home to a waiting District Nurse....so, by 11:00 we had already had quite a morning. A rest for the ill one was in order....after the routine drugs....we have 7 pills and potions to administer at various times of the day...and I try my best to get them in the right order!!!!!
Betty arrived at lunchtime....Jill had rested enough to come to the airport (with her mobile oxygen) and we headed from there straight to Bouley Bay, where I found a very handy parking space on the slip. Betty went swimming...Jill stayed put but still chatted to people she knew (there's always people she knows where ever we go!) and I went to see Mad Mary. Mary was "on form" and had bacon and eggs supplied in various rolls in short order. It was just as well the food came quickly as, before we knew it, the time was 2:30....and we had to rush home for Jill to have a rest at 3:00!!!! On arrival at Seaford the girls went in one room to watch Wimbledon and the boys in another for the footie.
In no time it was 17:30 and, because Jack had been on the boat during the morning, she (the boat that is) needed to be put back on her proper mooring. We decided to make the most of it, so Jack, Stephe, Jill, Bex, Bet, Dan and I all went down to St. Caths. and went for a quick spin to Gorey and back. So, another successful afternoon.
Overnight has been uneventful, although Jill did decide that she's had enough of me and slept downstairs....the rippling mattress on her downstairs bed seems to be preferable to my rippling biceps apparently! Up early as usual for the daily routine.....dogs, cats, dishwasher, drugs, breakfast et al. This morning we also have Jack and Dan on Lifeboat duties at the Blessing of the Boats at the Breakwater (Bex down there too), and Stephe has decided to row to the Ecrehous, as you do!
Did I mention that I actually did some aspirating last night (not very successfully) but this morning the drain does seem to have yielded a little more which is good news....or is it? Half of me wants the drain to stop (which might indicate that all the fluid has gone) but the other half wants to keep going so we keep taking the fluid away. I suspect we will be back at the hospital tomorrow morning but, with the drain still working, I do wonder if they will put the talc in or not. Jill's lung really should be dry before they do the procedure. How long can one keep a drain in? That's almost certainly one of the questions for tomorrow.
Betty goes back to the UK after lunch and, if Jill has had a rest before going, feels okay and we don't run out of oxygen (!!), I think we will try to stop for a VERY quick visit to the (nearly) 7th. member of our family in St. Ouen on the way home....it's her birthday today....don't ask how many it will be next year. I say nearly...because if she didn't live in that funny parish in the north west of the Island where they all have grey tummies then she probably WOULD be allowed to the 7th family member officially.
The other little thing we've got on this week coming is"The Wedding".... no doubt things will start getting increasingly stressy as the week progresses....I'm sure that reports will be made.
I think that's it for now....I'll get her ladyship to check this through for factual detail (and maybe to add some sarky comments and photos).
Look at these two ....just needed a couple of gin and tonics?
Captain Jack and First Mate Dan.
Always vain, so whipped off my oxygen tubes for the photo.......
We took the plastic off the seat covers! Never mind how fast it goes, or anything else technical, its got a FRIDGE- so ice for the gin being essential. (joke is I'm not even drinking!)
I'm being well looked after, and little happy times like these, make up for the loss of all those other myriad of activities I can't do.... like walking, and swimming and breathing properly, and laughing.
The last time Jill posted was Friday, so there's some catching up to do. We started early yesterday with a trip to hospital. Jilly's drain wasn't working, and it was doing more leaking than draining. That in itself isn't a huge or serious problem as such, but it was uncomfortable for Jilly and needed fixing....and, despite asking District Nurses and other people, it was only the consultant that could "sort it out". We sent a message, headed for town, and when we got there the consultant very kindly came in to the hospital to try to "get it going" (BIG thanks to PS for that). It's just a question of flushing through and, with the help of a video record, I was "given a go" under supervision so I can now "do the procedure" myself at home. I'm not sure it's something I'll make too much of....although being "able to aspirate a lung drain" isn't something everyone has on their CV!
I digress....we came home from the hospital via a visit to M&S (Jill didn't come in I hasten to add....just provided a scrawled list for me to attempt to interpret while pushing a trolley around the aisles looking bemused). We came home to a waiting District Nurse....so, by 11:00 we had already had quite a morning. A rest for the ill one was in order....after the routine drugs....we have 7 pills and potions to administer at various times of the day...and I try my best to get them in the right order!!!!!
Betty arrived at lunchtime....Jill had rested enough to come to the airport (with her mobile oxygen) and we headed from there straight to Bouley Bay, where I found a very handy parking space on the slip. Betty went swimming...Jill stayed put but still chatted to people she knew (there's always people she knows where ever we go!) and I went to see Mad Mary. Mary was "on form" and had bacon and eggs supplied in various rolls in short order. It was just as well the food came quickly as, before we knew it, the time was 2:30....and we had to rush home for Jill to have a rest at 3:00!!!! On arrival at Seaford the girls went in one room to watch Wimbledon and the boys in another for the footie.
In no time it was 17:30 and, because Jack had been on the boat during the morning, she (the boat that is) needed to be put back on her proper mooring. We decided to make the most of it, so Jack, Stephe, Jill, Bex, Bet, Dan and I all went down to St. Caths. and went for a quick spin to Gorey and back. So, another successful afternoon.
Overnight has been uneventful, although Jill did decide that she's had enough of me and slept downstairs....the rippling mattress on her downstairs bed seems to be preferable to my rippling biceps apparently! Up early as usual for the daily routine.....dogs, cats, dishwasher, drugs, breakfast et al. This morning we also have Jack and Dan on Lifeboat duties at the Blessing of the Boats at the Breakwater (Bex down there too), and Stephe has decided to row to the Ecrehous, as you do!
Betty goes back to the UK after lunch and, if Jill has had a rest before going, feels okay and we don't run out of oxygen (!!), I think we will try to stop for a VERY quick visit to the (nearly) 7th. member of our family in St. Ouen on the way home....it's her birthday today....don't ask how many it will be next year. I say nearly...because if she didn't live in that funny parish in the north west of the Island where they all have grey tummies then she probably WOULD be allowed to the 7th family member officially.
The other little thing we've got on this week coming is"The Wedding".... no doubt things will start getting increasingly stressy as the week progresses....I'm sure that reports will be made.
I think that's it for now....I'll get her ladyship to check this through for factual detail (and maybe to add some sarky comments and photos).
I'm being well looked after, and little happy times like these, make up for the loss of all those other myriad of activities I can't do.... like walking, and swimming and breathing properly, and laughing.
Friday, 6 July 2018
Friday 6th July. Still taking "One day at a time "
I am NOT going to tell you what a miserable time I had in hospital at the beginning of the week, where plans changed on an hourly basis, where I spent most of the time in pain and crying, feeling very pathetic, and sorry for myself.
I am instead ( as I now have my lap top) posting some cheerful photos, not I hasten to add of my father-in-law and his trousers episode, that's quite enough excitement for this week. He proudly showed me his smart braces yesterday, very fetching, and more importantly able to do a proper job in keeping his trousers up.
"Who's on the morphine?.... Steph and I on the swing seat..
My niece-in-law and their four year old.
Sticker books are great, fat swollen legs are not........
My nephew and his and his rather small knight....
Rockin' the pyjama look with some Nurses/Consultants. ( Not exactly in my 'active wear')....
Two trouble makers...
On our new boat .....named Lady J ..... by me of course....
Support crew with medical supplies......
Even had a paddle afterwards.. very good for the two large appendages that are trying to pass themselves off as legs...
Mary Mary quite contrary, how does your garden grow? Reasonably pleased that I managed to get out there today and see that we have had some success for 'wedding flowers', not sure we'll fill that marquee though ...
This evening a little paddle again, not swimming or anywhere close, but still very grateful for small mercies.
Look!!! No oxygen, and a cleverly disguised 'drain bag', yes I've still got it unfortunately.
You couldn't possibly tell the fact that I have weedy arms and a humungous lower half where clothes definitely do NOT fit.
Love him x
I am instead ( as I now have my lap top) posting some cheerful photos, not I hasten to add of my father-in-law and his trousers episode, that's quite enough excitement for this week. He proudly showed me his smart braces yesterday, very fetching, and more importantly able to do a proper job in keeping his trousers up.
Mary Mary quite contrary, how does your garden grow? Reasonably pleased that I managed to get out there today and see that we have had some success for 'wedding flowers', not sure we'll fill that marquee though ...
You couldn't possibly tell the fact that I have weedy arms and a humungous lower half where clothes definitely do NOT fit.
Subscribe to:
Posts (Atom)