Sally, syringes, sedatives and sea!!

Continuing on from Tuesday evening... the sushi by the way was lovely, and a real treat for me to have three children and a husband to share it with. We did chose to eat it in the day room, hardly fair on the other patients.

Oh, and I'm going to tell you this, which made me laugh, (which sadly I can't do, as it results in a massive coughing fit,) but anyway, black humour and all that.

As I wasn't really on a proper ward, cleaners were in and out at random times, and at one point they had to do a 'deep clean', including taking curtains down and throwing a lot of bleach around. I could hear the three ladies in the next bay moving beds, laughing and generally getting on with the task in hand.

Of course there was I in the adjoining bay, sitting in my chair chatting to Bex, and on cue as they were rounding the corner I had a massive coughing fit, (this was pre drain). Sudden loud shouts of "who's dying, who's dying" bounced off the walls. As I was the only person in the ward at the time, I of course put my hand up, "that'll be me then", almost simultaneously  the poor cleaner, looking totally mortified realising her massive error said "joking, only Joking! You have to laugh.

As I had finished supper, the nurse came back in to turn the drain back on, fine i thought. Within ten minutes or so I was in quite a lot of discomfort, and so decided to head back to the ward. I could hardly walk along the corridor, sharp stabbing pains in my chest, pain ripping up my arms, shoulders neck. The nurses saw my sorry state and decided morphine, and paracetamol.

As the fluid drains, the lungs attempt to work, and air fills the space, and we all know what pain trapped air can cause, plus the actual needle in the ribs is an irritant in itself causing issues. ( I have just learnt from the hospice nurse that as the fluid in the lung decreases the tubing drain wriggles about causing massive irritation as it bashes around the now drying lung, similar pain to someone suffering from pleurisy). 

The drain stayed open all night, I tried not to move much, I cant anyway, I sleep sitting propped upright with oxygen up my nose. Not the best night's sleep.

Early next morning I felt sort of ok, keen to get washed as best as I could I used the bathroom facilities, but by the time I got back to my bed the pain was once again quite intense. My lovely nurse seeing my distress, quickly set too with more pain relief. Every time i took a breath it was agony, i was coughing and had to hold the drain sight as it was so painful. The bag needed emptying, so that was another 600ml of liquid. The pain was still building.

I realised I was rocking, whimpering, and crying, unable to stop myself, what a mess. Within a minute the doctor was trying to examine this snivelling, spluttering, sorry state of a patient. She said she'd organised another chest scan, suspecting possible pneumothorax (collapsed lung).
Another nurse meanwhile had just arrived and turned off the drain. A minute later the pain abated, to just a mild discomfort...... blessed relief.

What a start to the day. Off I went for a chest x ray, I did ask if I could walk down, but was told no, as I had a drain! Arriving back to my bed I found Jack waiting, ready with a coffee. Bless him.

Troop of doctors did the rounds, none of whom I recognised. At least I had a name given by the 'leader', and upon realising I had had the chest X Ray went to check it. Came back and said, fine take the drain out, and said its best to have a short course of antibiotics. Risk of infection with the drain, plus low immune system with the chemo ( keep forgetting I've had chemo).

Half an hour later another doctor arrived (no name) pulled the curtain, had the sister with her, and set about with little instruction to remove the drain/needle. To complicate it further I am allergic to some sticking plasters, so the Sister had to scrap around and find sterile strips. Just as well Jack was there with a hand to hold, and talked any old nonsense  as a distraction.
Drain removed, stuck with strips and wrapped up in a crepe bandage I recovered on my bed. Steve arrives. We chat a bit, the Sister comes around , we inquire about a 'release' time ( its now 11am) . We have to wait for the prescription for antibiotics from the pharmacy, probably after lunch .

That went down well with me as you can imagine.

I wasn't the only one who was keen to leave, and I think the Sister had had enough of me, so we left, promising to pick up the prescription later.

It was so nice to be outside in fresh air, sun on my face, I really don't like hospitals!

Back home I tried to put washing on, unpack my bag and potter, I had a twenty minute warning from Jack, I needed to rest.  He made my lunch, and I duly sat down (fat, sore, swollen legs , plural now, elevated), when the kitchen door opened....

Who was it , my best friend bringing my SISTER.... What!!! Outrageous, how did I know nothing about this?? Apparently the look I gave her was something else.

 That was obviously before we both dissolved in floods of tears!!!!


Later Wednesday afternoon I had arranged for two lovely Ministers to come and see me about planning and discussing my funeral. I like to be a little different, so our lovely Methodist NH-J and our Church of England Rev'd HG, popped by.

I had valuable input from all those present, including, Sue, Bex, Steve, & Sally, plenty of things to think about, readings, hymns and best of all, working together - I loved that.

Family supper followed, again more team work (not me, still resting)Steph the "super organiser and sister bringer over" sorted supper and a big thank you to LT's son who kindly made us home made popadoms , and brought them round with chutneys, and a box of beer! Winner winner chicken dinner!!

We don't have a spare bed as Tom's friend is staying as they have their best friends wedding on Saturday, but its ok, because sister-in-law has stepped in, and my sister is sleeping there. She says she prefers it as I can't boss her about and give her more jobs!

It was nice to sleep in my own bed, only one wretched coughing attack in which I managed to wake up daughter as well as husband. In fact my swollen legs are giving me more grief than being short of breath, the lymph fluid is causing tightness, pain, and difficulty with mobility.

Anyway, I reckon walking is good for me, so Sally and I took the dogs, it was downhill. Steve picked me up , so I didnt have to walk back uphill. Then we had to take Jess back to the vet, she was still unhappy tail chewing, and worrying it. We looked at the X ray, (honestly, if it's not me it's the dog) she really had damaged it, and the only way to fix the problem was amputation . She was booked in today (Friday).

Another trip to the supermarket, bumping into at least five people I knew, and a chat with each and lovely hugs from them all. By the time we got back I was a little tired, and i'm afraid, a bit emotional. Steve, Sal, Jack, and Dan all looking after me, and me slumped on the sofa, oxygen machine switched on, (did I say we have two oxygen tanks?) , grossly fat legs, coughing, gaping hole in my side, no strength, no energy and intensely overwhelmed by the enormity of what had become of me.

Quick slap to the face and it was all sorted.......Ok, actually a few big hugs and sensible words.

I started this blog post.

SH and TH came over and walked Beanie, Jess was on medication so was a bit wobbly, ready for Fridays operation, so was happy to stay at home. Sal and I went to Ransoms to buy a wedding gift.

Quick catch up with the H's and then lovely JP came to see me after work, lots of talking. I have to learn to speak quietly ( yes, all have a laugh at my expense), and not try to continue to talk when I'm coughing. I should have an appointment next week with Hospice Respiratory / physio teams, practical advice.

Another family supper, this time HUGE thanks to SP, who provided a delicious meal, with pudding enough to feed more than 6 people, and all Steve had to do was nip down the road and collect. SO KIND.

Tired.

This morning I picked Sal up at 8am, i felt a bit stronger today, both mentally and physically, ( bar the troublesome legs) and even did a bit of wiping down surfaces, and general tidying up. We took Jess to the vet ....

 With tail.....Jess, not Sal.

Very sad, we loved her big whippy, waggy tail.

Followed that up by a trip to B and Q looking for a small bistro set for conservatory, they had 248 chairs and no tables.....

Followed that by a visit to Acorn Nursery (cue another lovely hug from a male SP, not the cook), and much plant choosing, and a bit of coffee drinking.

At home I sat outside (with my legs up) overseeing the planting operation, waiting for JN to pick up the Ovacome stuff for tomorrow ( explain later) and the Hospice councillor to visit.

Dan comes outside, inspects my legs... "Mum, they're oozing liquid" What! How disgusting, even though I vehemently deny it, I see that he is indeed right. They are blistering up with so much fluid. I am equally appalled and annoyed.

Hospice arrive, we discuss legs, I need to moisturise, exercise, and elevate, and speak to Oncology on Tuesday at next chemo. We talk drain hole repairs... of the chest, I didnt get a follow up plan from the hospital. ( My Steph's on the case)
I said I was going for a paddle in the sea , she said it would probably do the legs good, hospice lady not Steph, I whole heartedly agreed!

I persuaded Steve to drive us down to la Coupe, my sister was on life guard duty, I couldn't swim due to chest wound , but at least paddle. It was GORGEOUS. My balance is affected too, so i was careful, but it felt lovely to be in the water.

Later today a truly lovely lady that i have only met at  the yoga classes at Macmillan came around to help me out with trying  a different diet that will enable the body to not only deal with chemo better, but to help heal itself. I have known of this particular food preparation for some time, but felt it was too complicated for me to introduce. SG not only talked about it, but demonstrated how easy to prepare and showed us how, as well as leaving most of the ingredients.

I have nothing to lose by trying this, and  if it helps make me feel better....

Lastly, tomorrow morning at Oakfield my netball club have organised a "walking netball tournament", in aid of my chosen charity - Ovacome. Apparently seven teams have entered. From what I can ascertain some are netballers from my club, some netballers from other clubs, but quite a few teams seem to be made up 'friends, and neighbours of Jill".
I'm not sure if some of them have even really played netball since school days (this doesn't matter of course, the emphasis is on involving everyone and having fun.

I will be there.......most probably as a blubbering roly poly, heavy breathing lump sat on chair, totally humbled by this huge show of love and friendship. I wish I could describe to you my appreciation, words for once fail me.

Finally.... and if you still happen to be reading ......


Six inches is a lot.....for a dog.....