I am now trying to recall what has happened this week that has been so eventful, and the main 'excitement' has been trying to sort out my best (mad) friends fund (hair) raising idea.
Tuesday saw us plotting our moves, making calls and visiting my lovely friend J LeM, always so good to spend time with that family, and such an amazing lady.
Wednesday morning we had a visit from the equally lovely Joan who is Chairman of Jersey Cancer Relief Charity.
Jersey Cancer Relief came into being in 1968, initially as the Jersey branch of the national campaign, when it was found that some cancer patients and their families were finding it difficult to cope financially because of their illness.
It was incorporated as a Jersey charity in November 1973. Since then, due to generous donations and our own fundraising efforts, it has been possible to offer assistance to many Islanders.
Where there is a need, Jersey Cancer Relief can help with:
- Doctors Fees
- Medicines and dressings
- Heating
- Travel to mainland hospitals and subsistence grants
Other miscellaneous expenses
This gives you a bit of an insight into what the charity is all about, and as they helped me out with my UK stay when I was in London, I do feel that they are an invaluable help to many of our islanders.
Sue and I have set up a Just Giving page as her 'hair-brain' scheme as a fund raiser is to join me sporting the BALD look, although why anyone in their right mind would do that, is beyond me ... bless her.
I'm hoping this is the link to the page...
https://www.justgiving.com/fundraising/jill-luce1
No doubt you'll let me know if it isn't, ? For those of you on FB it's on there already and we have had to up the target goal, and for the a few friends that are not using social media I have sent a few emails. Please, please don't feel that you have to donate at all there are SO many charities out there already, and its difficult to keep 'giving' to all the worthwhile causes.
I had seriously hoped that I could have gone into hospital by Wednesday afternoon and have had the draining, but as my poor consultant only arrived back from holiday in the morning and had full surgery, the chances were slim.
Of course, I had an ulterior motive, partly because I was fed up of the pressure/weight/discomfort , but primarily it was because my big brother was arriving Thursday morning just for one night, and I didn't want to spend the day in hospital.
Thursday morning was a rush , I can't do anything fast... and trying to eat/shower/ dress/ leg strap and be in hospital for 9:30am is always challenging.
We made it just , and Steve whizzed off to his 10 am meeting, fortunately Sue had picked up Pete from the airport and was able to bring him straight to the hospital ( lucky boy).
Bloods were taken and sent off, discussions had, examinations etc. A bed was found on Raynor ward, and a little more waiting. The bloods came back all good to go, the main concern being that the clotting agent was ok, which it was, but they also took the HB (red blood) which has turned up at 12.4, utterly ridiculous, I've never been that high, not even at the start of treatment!!
Not complaining, unless of course that's not a good sign (?) white cells ok too, liver is holding it's own, but not fully functioning, however kidneys are ok, which I am pleased about, and my albumin level has upped to 25, which IS good. I am however very low on sodium... hmm more salt needed.
Some of you may be aware that at the beginning of the week Steve started a very heavy cold.....
Not ideal at the best of times, for him or me... it was kindly passed on by our eldest, who after a week of suffering feels decidedly better, aided by a plethora of hard drugs ( no, not mine).
Fortunately, I have been sleeping solo so avoided so far catching the germs, but you can imagine how it's tricky it is at the best of times keeping a sterile environment and minimising passing on the virus!
Banned from hospital bedsides... (by me) it was up to Big Bro to step up to the plate, and so off we trot (?) to treatment room.
It was fine, anaesthetic given, drain in, plenty of 'hand squeezing' and reassurance chatter, fluid was filling the bags as a rate of knots, so all good.
A slower walk back to the bed, and more speedy bag filling, aiming for 5 litres again. We looked on course....
I had a little lunch..... and then the pain started, a mild discomfort and then bad griping pain in the abdomen. I thought maybe it's the drain wriggling around, but more likely( the doc explained) as the fluid is leaving the body, ALL of the internal organs are 'waking' up, and mostly complaining.
The draining slows down, the pain doesn't, and so time ticks on and a few painkillers help, and wriggling, and distraction and more wriggling etc. It's now 3:30 pm and we resort to tipping the foot end of the bed up and trying to massage the last litre or so from tummy to bag (or at least I do). Desperate to get the fluid out, but equally desperate to get the drain out.
The legs are definitely slimmer, and so I could roll on my side a bit and see if that helped, if I wasn't in pain it would have been comical.
4:45pm and we finally reached our target, last bag filled. Now for drain removal.
All drains are slightly different and not every member of staff could know how each one works, and that goes for the removal too.
It didnt go well, judging by the forceful hand squeeze and tears ( mine, not Petes!).
A sister who was just leaving her shift, was just caught at the door, and despite being in her civvi clothes, came back and tried to explain how this particular drain cord worked, not easy. Bless her.
Still not totally clear and not wanting to cause further pain on me, the new Sister got gowned, gloved, and then threaded the tube back into the abdomen, straitening the wire ( which knots into a 'pigtail' internally- consequently painful to pull through the thicker stomach epidermis, but does the job of staying inside whilst it's needed) . Still not an entirely pleasant feeling but able to pull a straight wire through a tube/skin etc.
I am feeling exhausted, too much adrenaline used up, shaking, wobbly, stomach pangs, struggling to breathe, walk, talk, and probably crumbled up grumbly looking face, we leave the hospital.
Back home , more painkillers, heaps of blankets, and sleep for three hours... wake feeling a little better ( improved after food - thank you SP) and more painkillers. While I'm on the subject of thanking , A large very thank you must go to LT and her family who provide a delicious supper on a Wednesday evening, without fail, and it's not as if she doesn't have her own family to cater for too.
Today? Not a good start, did not sleep much at all ...... and the breathing or lack of it, horrendous. Even just sitting still I couldn't get my breath. I was frustrated and scared in equally measure.
Steve called Hospice and within half an hour my community nurse came, I had already doubled the morphine dose, reluctantly, ( still only small amounts as my daughter-in-law repeatedly tells me, I know she's right, she talks about babies...)
The Nurse then talked about how your body reacts to losing such a large amount of fluid is so detrimental, it cannot help but upset the whole equilibrium and balance, and this results in many different symptoms, ( BUT, of course the benefits I now feel are fully worth it ).
I took another drug, one which helps anxiety, breathing and can make you a little sleepy. This did help, plus I think as the day has gone on, my body is dealing with the fluid loss.
My legs are much slimmer, I'd like to say the fluid is slowing down, but I'm not convinced. Stomach isn't so large so my mobility should be easier. It was the lack of breath that I could not get to grips with, and I worry there's more to it, ie the lungs are really congested, but its early days, and after Mrs Mop had been, cheered me up and done her 'housekeeping' duties, my brother had worked his way through the list of jobs I gave him, and my husband had been dispatched into the garden for mowing duties, I started to improve in my physical and mental state.
Thank goodness for all those around me, who had had quite enough of me and Miss Misery face!
Just enough time to grab an hour in the car, down the beach and for some folks to have a swim, and of course an ice cream at St Catherines.....
He's gone back to London now... for a rest?
The answer..... is no .... he didn't ...catch anything.....
I started this post Friday at 10pm.... not saying it takes me an age, but it's now Saturday and 1am.....
I'm hoping this is the link to the page...
https://www.justgiving.com/fundraising/jill-luce1
No doubt you'll let me know if it isn't, ? For those of you on FB it's on there already and we have had to up the target goal, and for the a few friends that are not using social media I have sent a few emails. Please, please don't feel that you have to donate at all there are SO many charities out there already, and its difficult to keep 'giving' to all the worthwhile causes.
I had seriously hoped that I could have gone into hospital by Wednesday afternoon and have had the draining, but as my poor consultant only arrived back from holiday in the morning and had full surgery, the chances were slim.
Of course, I had an ulterior motive, partly because I was fed up of the pressure/weight/discomfort , but primarily it was because my big brother was arriving Thursday morning just for one night, and I didn't want to spend the day in hospital.
Thursday morning was a rush , I can't do anything fast... and trying to eat/shower/ dress/ leg strap and be in hospital for 9:30am is always challenging.
We made it just , and Steve whizzed off to his 10 am meeting, fortunately Sue had picked up Pete from the airport and was able to bring him straight to the hospital ( lucky boy).
Bloods were taken and sent off, discussions had, examinations etc. A bed was found on Raynor ward, and a little more waiting. The bloods came back all good to go, the main concern being that the clotting agent was ok, which it was, but they also took the HB (red blood) which has turned up at 12.4, utterly ridiculous, I've never been that high, not even at the start of treatment!!
Not complaining, unless of course that's not a good sign (?) white cells ok too, liver is holding it's own, but not fully functioning, however kidneys are ok, which I am pleased about, and my albumin level has upped to 25, which IS good. I am however very low on sodium... hmm more salt needed.
Some of you may be aware that at the beginning of the week Steve started a very heavy cold.....
Not ideal at the best of times, for him or me... it was kindly passed on by our eldest, who after a week of suffering feels decidedly better, aided by a plethora of hard drugs ( no, not mine).
Fortunately, I have been sleeping solo so avoided so far catching the germs, but you can imagine how it's tricky it is at the best of times keeping a sterile environment and minimising passing on the virus!
Banned from hospital bedsides... (by me) it was up to Big Bro to step up to the plate, and so off we trot (?) to treatment room.
It was fine, anaesthetic given, drain in, plenty of 'hand squeezing' and reassurance chatter, fluid was filling the bags as a rate of knots, so all good.
A slower walk back to the bed, and more speedy bag filling, aiming for 5 litres again. We looked on course....
I had a little lunch..... and then the pain started, a mild discomfort and then bad griping pain in the abdomen. I thought maybe it's the drain wriggling around, but more likely( the doc explained) as the fluid is leaving the body, ALL of the internal organs are 'waking' up, and mostly complaining.
The draining slows down, the pain doesn't, and so time ticks on and a few painkillers help, and wriggling, and distraction and more wriggling etc. It's now 3:30 pm and we resort to tipping the foot end of the bed up and trying to massage the last litre or so from tummy to bag (or at least I do). Desperate to get the fluid out, but equally desperate to get the drain out.
The legs are definitely slimmer, and so I could roll on my side a bit and see if that helped, if I wasn't in pain it would have been comical.
4:45pm and we finally reached our target, last bag filled. Now for drain removal.
All drains are slightly different and not every member of staff could know how each one works, and that goes for the removal too.
It didnt go well, judging by the forceful hand squeeze and tears ( mine, not Petes!).
A sister who was just leaving her shift, was just caught at the door, and despite being in her civvi clothes, came back and tried to explain how this particular drain cord worked, not easy. Bless her.
Still not totally clear and not wanting to cause further pain on me, the new Sister got gowned, gloved, and then threaded the tube back into the abdomen, straitening the wire ( which knots into a 'pigtail' internally- consequently painful to pull through the thicker stomach epidermis, but does the job of staying inside whilst it's needed) . Still not an entirely pleasant feeling but able to pull a straight wire through a tube/skin etc.
I am feeling exhausted, too much adrenaline used up, shaking, wobbly, stomach pangs, struggling to breathe, walk, talk, and probably crumbled up grumbly looking face, we leave the hospital.
Back home , more painkillers, heaps of blankets, and sleep for three hours... wake feeling a little better ( improved after food - thank you SP) and more painkillers. While I'm on the subject of thanking , A large very thank you must go to LT and her family who provide a delicious supper on a Wednesday evening, without fail, and it's not as if she doesn't have her own family to cater for too.
Today? Not a good start, did not sleep much at all ...... and the breathing or lack of it, horrendous. Even just sitting still I couldn't get my breath. I was frustrated and scared in equally measure.
Steve called Hospice and within half an hour my community nurse came, I had already doubled the morphine dose, reluctantly, ( still only small amounts as my daughter-in-law repeatedly tells me, I know she's right, she talks about babies...)
The Nurse then talked about how your body reacts to losing such a large amount of fluid is so detrimental, it cannot help but upset the whole equilibrium and balance, and this results in many different symptoms, ( BUT, of course the benefits I now feel are fully worth it ).
I took another drug, one which helps anxiety, breathing and can make you a little sleepy. This did help, plus I think as the day has gone on, my body is dealing with the fluid loss.
My legs are much slimmer, I'd like to say the fluid is slowing down, but I'm not convinced. Stomach isn't so large so my mobility should be easier. It was the lack of breath that I could not get to grips with, and I worry there's more to it, ie the lungs are really congested, but its early days, and after Mrs Mop had been, cheered me up and done her 'housekeeping' duties, my brother had worked his way through the list of jobs I gave him, and my husband had been dispatched into the garden for mowing duties, I started to improve in my physical and mental state.
Thank goodness for all those around me, who had had quite enough of me and Miss Misery face!
Just enough time to grab an hour in the car, down the beach and for some folks to have a swim, and of course an ice cream at St Catherines.....
He's gone back to London now... for a rest?
The answer..... is no .... he didn't ...catch anything.....
I started this post Friday at 10pm.... not saying it takes me an age, but it's now Saturday and 1am.....
Hope you're feeling better and having a good sleep now! Xx
ReplyDeleteExhausted just reading what you've gone through! You truly amaze me Jill. Hope today a better day and you get to see the sunshine 🌞🌞 xxxx
ReplyDeleteYes ditto to above comment. Sounds like an exhausting experience for anyone! Hope you've settled and are resting up. I think September will bring us all some sunny days to look forward to. I'm sure your brother was pleased he could be so useful, and I hope your hubby shifting his cold. Love to you Jill. Lxo
ReplyDelete