17 December 2008

My cancer diary – part 9

After a disconcerting setback Lynn is struggling to breathe. As the nightmare passes she shares her story.

After having her brain tumours zapped things were looking up for Lynn. Then things suddenly went wrong.

Last week Andre gave us an update. Now, Lynn is ready to speak for herself. (Click here to read Andre's message.)

On 18 March 2008 Lynn sent the following email:

Almost on the home straight

Well there is nothing like a little (or not so little as the case may be) stay in hospital to give you some good stuff to write about! But I must admit to being impressed by my husband’s last update. I think he is far too modest and motoring analogies aside, think he did a fabulous job of telling the story as it was then. So it’s just for me to fill in some details and bring you all up to date.

The important part that Andre left out was that my sister Penny (who was out visiting from Dubai with her gorgeous daughter) and I were about to head off for a girls' morning at the Vineyard Spa where a friend had booked me for a facial and I’d booked my sister for a massage.

A little tired
I was feeling a little tired, but as usual, wasn’t sure if it was from the chemo (I’d started round number two the night before), or whether it was the cortisone, radiation or a combination of everything.

So Penny asks if she can try out her fancy new thermometer on me. She had bought it before she came, as she had just had her first round of chemo before she arrived and needed to be vigilant that she didn’t pick up an infection while she was here. She hauled the fancy doodab out and stuck it in my ear and it read 38,5 deg C which is a little on the high side; and then insisted on calling the doc. They said they’d call back and I said, well let’s go for our facial.

True’s Bob if we’re not about to turn into the Vineyard parking lot, when they phone back and say we must come to the rooms right away.

“Can’t we come in an hour rather? We’re just about to go for a facial,” say I hopefully. But NOOOOO, we have to turn around right then and there and head for the hospital. The Vineyard Spa were very understanding.

So we get there and get sent for some chest X-rays. They offer me a wheelchair and I’m like… “uh, no thank you? I’m fine… a little slow, but fine” and the rays pick up some inflammation which is ascribed to an infection. I’m given some antibiotics and sent home.

Pen (who had had a blood test on the Saturday, and whose white cells were a bit low) also got given some antibiotics to boost her system, just in case.

Tuesday was OK, but I didn’t feel so hot and by Wednesday, when we had to go and see the neurosurgeon for a check-up, I was ready for that wheelchair! Dr White forgot completely about my head and told me that I looked blue (literally, although figuratively I felt it too) and that if I’d walked into the ER he’d have had me on oxygen. So he sent us packing and told us he’d get hold of Doc Wilson.

Puffing and panting
By lunchtime we'd heard nothing - Andre got on the blower and eventually by that afternoon we were back in Constantiaberg, by which time I was puffing and panting like a steam train. In no time they had me admitted, with needles in my arms and hooked up to an oxygen mask.

I had to go for a chest CT and they wanted to pump contrast into me, but the IV they’d put up in the oncology unit was too small (probably because I’d asked them to put in a teeny tiny needle), so they needed to use ultrasound (can you believe it?) to find a vein suitable for a decent IV.

I asked them to leave it in as I really don’t have much luck with IV’s and they did, but it is in the bend of my right arm so not the most comfy position.

Anyway, that’s when the scary stuff started, because I couldn’t breathe very well, talking was almost impossible (and you can imagine how traumatic that was for me), but worst of all, the docs didn’t really know what was going on.

Figuring out what's wrong
Doc Wilson called in a pulmonary specialist, Sean Rogers (who is very cool, a little gung-ho and helped me regain my sense of humour when I temporarily misplaced it) and between them they thought it was either:

a) a pulmonary embolism – so they were (and still are) giving me lovely injections in my stomach to thin the blood out.
b) some type of infection – so massive doses of hectic antibiotics were inserted into me.
c) A rare-ish side effect of the radiation – radiation pneumanitis I think they called it – which causes inflammation between the lung walls and the blood vessels where oxygen transfer normally takes place very easily. This inflammation makes the transfer of oxygen much more difficult and the treatment for that is… drum roll here please… cortisone! So they upped my dosage of cortisone in case it was that.
d) A weird infection/bug for which they’d need to do a biopsy, but I couldn’t breathe well enough or long enough on my own for them to try that, so we were left with treating options (a) - (c) above.

Nothing worked
So, they were treating me for all of this and for a week, nothing much happened, which was scary because you’d think something would work.

I must admit that was a pretty grim time where I doubted God and was really scared. The whole brain tumour thing has been so intangible, in a way, and I don’t know about you, but I’ve heard of lots of people who get admitted to hospital for pneumonia and then just never leave.

I had enough of those thoughts tormenting me and I found it really hard to find things to be thankful for (something with which the naturally optimistic me doesn’t normally have a problem).

Turning the corner
But thanks to the prayers of all you faithful friends, and God’s guiding hands on the docs, on Thursday last week I just seemed to turn the corner.

I think the docs changed the type of cortisone I was on and gave me some other meds, but when I woke up on Thursday, my SATS (blood oxygen level) was up by 5 percent, I could breathe and talk so much better, and really felt better than I had literally all week. Praise God!

And now I’ve just gone from strength to strength and they stopped the antibiotics deciding it was definitely the radiation pneumanitis.

I still can’t believe that tomorrow I’ll have been here for two weeks. Now the big challenge is getting me home before the Easter Bunny.

Having been in bed for so long, on higher doses of cortisone, and with so little oxygen running through my bod, it means that my already depleted thigh muscles particularly have completely wasted away to nothing.

I had been using the commode (you’ll remember that lovely wheelchair-toilet-like-thing I discovered in ICU last time) and then last Friday I was getting out of bed to “sit on the commode” (aided by Andre and a nurse) when my legs just gave way beneath me. Also a little scary.

Getting back up
So we organised for the physio to come (me thinking I would get a lovely massage), but alas, she made me do exercises… and it’s been a slow road from there. The thing is I have to get mobile without oxygen before they will let me home, so yesterday I thought I would be setting the passages alight as I raced along with the aid of the Zimmer frame… but, boy, was it a lot harder than I expected it to be.

So I had my hopes dashed a bit yesterday, but today I’ve been up and down the passage twice and I think if you look closely you might just find a skid mark on the carpet!

Of course I’ve had my share of embarassing moments here in the hospital - most of which involve the doctors coming for their rounds just as I’ve taken my seat on the commode and I swear they don't think to come back later. Oh no, they’re happy to have a chat to you while you’re enthroned. Maybe it’s just my timing that really stinks!

Fighting the side-effects
My only other complaint now is that I’ve developed the most horrible mouth ulcers and thrush (I think from a combination of the chemo and the drugs I’ve been on) which has been interfering with my daily enjoyment of food and you know how that can upset me.

I think my mom tried to kill me with spirits of camphor this morning as it’s a remedy that my dad swears by, but it burns like blazes.

The trick is to put a little of the camphor on the open ulcer, and then blow like mad until the burning stops. I have four ulcers on the side of my tongue, and I asked my mom to put the camphor on for me, which she did, liberally, but then she got the giggles when she was blowing and could barely manage a gentle wheeze, never mind a breeze, and here I was dying of the burning beneath her. Last time I ask her to do that for me!

Andre is much better at it, but tends to get carried a way in CSI mode and pretends to be collecting DNA samples from my mouth with the ear bud!

Anyway, that’s all the news for now. I hope I’ll be out of here soon, but I think it will be a while until things are back to normal. As Andre says, I’ll have to be on 24-hour surveillance for a while at home to make sure I can manage as I build my strength up, and I may need to get oxygen at home.

Managing the steps and the loos (which are surprisingly low I’ll have you know) will be the biggest challenges for me for now, but we’ll just need to take it easy.

The girls are going to be on holiday from Thursday and while disappointed that we’re not going away for Easter, have decided to just write to the Easter Bunny to warn him/her that Puddles the dog likes chocolate, so to please hide the Easter eggs where Puddles can’t reach them!

They were a little worried about me at first, because I couldn’t talk, but seem to be doing OK now. Thank goodness for Granny who is just a godsend and keeps some normality and stability in their lives.

Thanks too to all the neighbourhood moms who have kept my family fed for this whole term by supplying dinners every evening, as well as some wonderful reflexology and massage treatments for me while I’ve been in hospital. You guys are truly amazing and inspiring.

Lots of love and thanks

- (Lynn Ferreira, March 18, 2008)

Read more:
My cancer diary - part 1
My cancer diary - part 2
My cancer diary - part 3
My cancer diary - part 4
My cancer diary - part 5
My cancer diary - part 6
My cancer diary - part 7
My cancer diary - part 8
My cancer diary - part 9
My cancer diary - part 10
My cancer diary - part 11
My cancer diary - part 12
My cancer diary - part 13
My cancer diary - part 14
My cancer diary - part 15

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