Stem cell transplant process: Christchurch
We had split our trip to Christchurch with a stay overnight in Twizel, near Ben Ohau. It always takes us far longer to pack up things in our home for a long trip away so an overnight stay allowed us to take in some of the sights along the way and have a more leisurely trip. Weather was cold and cloudy.
Our route took us over the Lindis pass. (above: 971m in mid of Southern Alps on State Highway 8 between Cromwell and Omarama) There is nothing there; only a tourist look out.
Both of us have new styles: Sarah looking very sporty and fit; I look like I have had a fight with Eric Culley’s Westie clippers and lost.
It is hard to do justice to the sense of vast open space and dry desolation in photos.
There is the odd car but at this time of the year not too many people around. Just long straight roads and the mountains. We jumped in and out to stretch our legs before arriving at our overnight stop around 3pm.
View from bedroom window
We decided to make the most of the calm early evening and headed out on bikes to do a wee ride on Stage 2 of the Alps to Ocean route by the side of Lake Ohau.
Obviously, I ran out of energy before Sarah (she opted for an extra hour or so)
A couple of pub grub/bar food bistro options in Twizel itself.
We settled for dinner in Shawtys; Jo hiding under a blonde wig that Sarah has christened ‘Samantha’ (I think it looks more like a ‘Dougall’)
Twizel is the nearest town to Mount Cook village (55km away) Long drive along Lake Tekapo.
We spent an hour or so hiking near Mount Cook Village.
There are two 3-5 hours day walks from Mount Cook village, but some shorter walks too. Trick is to pick a clear day. We were very lucky with the weather.
We wandered along the Kiwi View point track from the village taking in the sights.
Now in Christchurch our routine revolves around visits to hospital.
The High dose therapy and autologous stem cell transplant (HDT-ASCT) process lasts 3 days.
Monday was Day 1: blood tests, discussion on process and consent forms with registrar, stocking up with drugs to take to try to avoid nasty side effects of the melphalan (chemo) and insertion of PICC LINE.
The drug intake is complicated as each are taken at different times 1-4 times a day. I had to have a detailed schedule for the pills. These are:
- Co-trimoxazole pills for Pneumonia and lung infection (a very high dose pre chemo)
- Valaciclovir (for shingles)
- Three contraceptive pills to stop any possible bloodshed;
- Two types of mouth wash to prevent mouth ulcers;
- Four types of drug to prevent nausea (Aprepitant, Ondansetron, Dexamethosone (steroid) Domperidone.
I felt sick the first night I took them all.
The PICC (peripherally inserted central catheter) line insertion process was painful despite local anaesthetic around the insertion area.
It looks like this. 60cm cut down to your body.
It goes into a large vein in the upper arm and is pushed in as far as a main vein where blood flows quickly near the top of the heart. I have a double lumen PICC (one with 2 lines) so that multiple infusion drips can go in at once.
It took the nurse 3 attempts to get it in the right place. First time she hit a nerve with the needle which gave me shooting pain in my wrist; second time after a radiologist had taken a photo and declared it ok, whilst she was clamping/stitching it in place it shot up inside another vein towards my ear (see first picture for graphic detail) and I had throbbing pain and a headache. This was uncommon but a known possibility, so she had to manoeuvre it again to get it back in the right place aided by the radiologist taking pictures.
My arm started gushing warm blood (a sensation like putting it into a hot bath) for a while until she declared it finished; arm covered in blood, t shirt soaked in blood and nurses sweating with the effort. It was a good thing that Sarah had stepped out of the room to avoid radiation at the critical moment, otherwise she probably would have fainted. I kept my eyes tightly shut until it was over. I could not even look at the xray pictures the nurses were studying, I was so stressed.
The PICC line throbbed all night as the anaesthetic wore off but it is ok now. I know it is there and have to avoid knocking it, keep it dry and clean (Clingfilm/Gladwrap is very useful in the shower). The dressing will be changed weekly.
Tuesday: Day 2: Most of the day in hospital sitting around whilst dosed up with chemo and saline. With the PICC line in, getting a drug infusion and taking blood out is easy (no more needles for now). It is just a matter of turning the clamps on/off and screwing in or unscrewing syringes, bottles or drip lines.
More blood taken followed by two x 2 litres of saline (each over 2 hours) and one high dose of Melphalan (chemo).It is surprising that such an innocuous looking bag of white liquid is so toxic. It had to be made specially (had a best before time within an hour or so of being made) and was timed to the minute as to when it was administered. This is the stuff that is going to make me very sick in a few days. Guaranteed 100% success rate.
We managed to get out of hospital in time for a walk across Hagley Park to the Addington Coffee company café and bookshop on Lincoln St. Very cycle friendly place. Old frames hanging from the celling and forming the fence outside.
Best coffee in ages. They roast their own beans on site so well worth another visit.
We also spent an hour wandering around the Botanical gardens again admiring the daffodils, Magnolias, Snowdrops, Rhododendron ad cherry trees in blossom.
Day 3 was 13 hours in hospital.
I was hooked up to three x 4 litres of Saline (each over 4 hours) starting at 8am and ending at 9pm. Lots of reading and puzzles but my very fuddled brain could not cope with concentration.
Again, every process in hospital was timed to the minute.
At 10:30 I was given a whole new set of drugs by infusion.
- Premed Furosemide (a diuretic which caused me to wee every 15 minutes for about 2 hours!)
- Chlorphenamine (an antihistamine to reduce effects of runny nose, flu colds)
- Hydrocortisone (An attempt to prevent an adverse reaction from the blood transfusion)
11:am the stem cells arrived in a big black drum from cold storage. I had 1 small bag containing 5.52 million cells per kilo of body weight. So many cells in such a confined space.
These had to be thawed in front of me in a warm water bath before being declared ready to transfuse through the PICC line.
The stem cell transfusion itself took 6 minutes. Nasty side effects were a tickly cough and sore throat and an overwhelming smell of cooked asparagus on my skin that lingered for hours. This was a result of the preservatives included in the blood. Then it was all over bar the long wait to get the saline through my body.
Sarah dropped in to check up on me and bring food parcels (She had a long cycle ride along the Little river track negotiating swarms of buzzy insects, toxic rivers and sheep lambing)
Now we wait.
I have to go back into hospital when:
- I feel unwell and/or,
- my temperature goes over 38C and/or,
- I get muddled and confused and/or,
- have severe nausea and vomiting and/or,
- have persistent diarrhoea.
- I develop neutropenia (low number of neutrophils/white cells having been killed off by chemo) and immunity to infection is very low/non existent.
Some of these symptoms have started in small doses already. The metallic taste is back too.
As there is not much to look forward to in this mix, I probably won’t be posting another blog for a while.
In the meantime, we will try to get out of the hotel room on a daily basis into the Botanical gardens for a gentle walk and to enjoy the flowers that herald the start of Spring.
Something to smile about
xxx
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