Home again but weak and frustrated!

After 4 weeks of Christchurch hospital and rubbish weather we finally made it back to a sunny warm Queenstown.


We have still been out exploring and adventuring despite me being so sick.

Before we left, Sarah dragged me up one of the Port Hills, whilst I panted and puffed like a train. 2 hours and I managed 3km! Sarah kept doing shuttles back and forth to make sure I hadn’t collapsed and probably did 3x this distance.









The hill was filled with gorse.

Lots of daffs and flowers out all over Christchurch as Spring arrived several weeks before its official date. Most of the flower shots in the rest of the blog are from the botanic gardens (my favourite place)

We were so excited when we were told we could go home.
We celebrated with a cheese sandwich by Lake Tekapo near the Church of the Good Shepherd.

When you can’t taste anything, it is just a matter of getting the calories down in the easiest way possible.

We were both convinced that the main road used to go past the church and have memories of it in 2006 being deserted and a lonely empty place with very little in terms of a town around it.

Now, large coaches roll up and tourists in the hundreds spill out to check out the views. We were amazed that the town has sprawled and the infrastructure that has grown up around the church. We sat on a rock nearby for lunch (all the park benches were already taken!)

The views were still great. This is the most photographed church in NZ.


Being bald is an interesting experience for me. I’ve now been naked up top and have not had to shave anything else for c.3 weeks. There is not much hair left on the rest of my body. I’ve kept some eyelashes and few remnants of eye brows, but that is it.

Of course, blokes who are used to the bald look,
will know all about this and may recognise some of the issues but it is all new to me.

• I get cold very easily without a beanie but cannot cope with one on my head all day. When I remove it, my head shines like a beacon. I will have to be very careful not to get a pink / burnt scalp.
• Things stick to your head, like the back of the sofa or the hat you are wearing and sometimes my sunglasses get stuck on.
• My head gets very dry so I have to put body lotion on it, giving my bonce a very polished reflective look like an ice cream cone glistening in the sunshine
• If the hat is not very soft (i.e. merino/possum) my head itches like crazy. Many thanks for the loan of the hat Krysia 
• I can see all the pores on my scalp where the hair used to be (up close it looks like the texture of a cheesecake) Just hope they all grow back.
• On the plus side, it saves loads of time in the shower and saves money on all those hair products (now sitting neglected on the shelf)
• I blend in easily with the mountain crowd here where it is cool to wear a beanie- even indoors.

I am on Day 30 post stem cell transplant. I am starting to feel a bit stronger but it has been awful.
I still have to force myself out of bed each day to get dressed and to try to do some exercise. Some days are better than others, but mostly I want to curl up into a ball and sleep. I am wiped out and feeble after every toilet experience. I’ve tried Immodium but it gives me a rash and codeine just makes me want to sleep, so I am just letting my body do its thing. It is slowly recovering.

• I am still too weak to take pneumonia prevention tablets (cotrimoxazole) so next week I am getting my first of 6 monthly infusions of pentamidine as well as my monthly dose of zolendronic acid (bone strengthener)
• Some days I spend in a fug and cannot concentrate on anything, like having the flu all the time. Just lately this has reduced to being in early evenings. I cannot make it much beyond 8pm without having to lie down and close my eyes.

• My body/bones ache from time to time. Not sure what to put this down to, but the consultant thinks it is caused by the bone marrow regeneration process.
• They decided, after many tests for clotting and whether or not my body was processing the blood thinners properly, that the PICC line blood clot was “secondary to traumatic insertion” so no further tests required. Now my right arm just has to heal itself. It takes up to 3 months for a blood clot to disappear naturally.

I have started to get some taste buds back; still no joy with crisps but I can just stomach a very weak tea now.

A sign of feeling better is that I have started to cook again. My favourite books at the moment are the specialist Cancer cook books (gifts from special friends). I know when I select something from these, I will be able to taste it. My first attempt at a beef ragu was a great success with Sarah but I could not eat much of it myself. Latest delight, a few days later was better for me.

It may not look too appetising but the shepherds’ pie with sweet potato topping, containing lentils, lamb mince, tomato paste and Worcester sauce ragu was a hit with us both.

As was Sarah’s new sour dough recipe with fennel, poppy and black sesame seeds that tastes like marmite without the spread. Yummie.

Being weak and pathetic is immensely frustrating for me. My brain wants my legs to cooperate but they seem to float along on their own at their own speed. I just do not feel totally with it/in control. I have walked down into Queenstown 3x since we got back. First time, Sarah was going to get the car so I could get home, but I was so stubborn, I managed to get up the hill eventually. I had to go to bed at 6pm and rest inside for 2 days after that.

Yesterday it took me 3 hours to do a round trip (normally about 1hour-1hour 30) but I stupidly decide to buy potatoes and lug them up the hill too just to add to the challenge.
Today, I was supposed to try to hit a few golf balls at the range; the mind is willing but the rest of the body is rebelling too feeble to comply. Hence I am writing this whilst Sarah is hitting some for me too.

Time is supposed to be a great healer and I have to patient and wait for the energy to come back. The trouble is, time is not on my side. I am conscious of it passing and I hate wasting it.
It is not as though I am going to get the full quota anymore.

Before we left Christchurch hospital, I asked how the consultants could tell if this process had worked or not. Right now, they can’t tell but can only quote probabilities. As I had a good reaction to the first stage of chemo, it is highly unlikely that I will get myeloma again in the short term.
The average (70% of all cases) is that it comes back within 5 years of the end of treatment but the range is anything from 1 – 20 years.

As the consultant said who knows what the treatment will be in 5 years time? I just hope it is not the same as I have just been through. Poisioning your body cannot be good for it despite what they say about humans being resilient and being able to regenerate cells. It is a dreadful experience, I am not sure I want to do it all over again.

We will have to tackle that dilemma when the myeloma comes back. Meanwhile I have not finished the first set of treatment yet. 70 more days to recover before the third stage (4-5 months of more weekly chemo) starts. So starting May 2018… 5 good years perhaps?

Back in the garden, I have doing some gentle weeding. Sitting still and pulling up weeds can be very relaxing and therapeutic for one with a brain like pea soup.

Spring has arrived early with the cherry trees in our courtyard garden out in glorious pink blossom. This is something to make us both smile.