My Healing Journey

On or about the 11th October, 2019, Thomas hurt his back trying to lift up the garage door. He put this down to a stupid move. He felt the twinge and knew immediately that he had strained his back.

On or about the 12th October, 2019, Thomas woke up from a daytime nap, resting his back, whilst continuing to work, and felt a sharp pain as he climbed up from the ground level bed. He immediately had pain and experienced difficulty breathing.

His breathing became worse, but he recalled a diagnosis from his youth where something similar had happened, and decided that rest was required.

After a few days of no relief, he was encouraged to see an osteopath where he was told that his vertebrae were in an anterior position. He had some immediate relief but this left as soon as he got up from the table.

He thought he needed more rest and decided that sitting around an emergency room would only make it worse and he needed to rest and we were going to Barcelona on the 20th anyway so no it wasn’t much use to begin ongoing treatment for back pain.

He went to the doctor before leaving Germany, but he was away on holiday. Thomas booked in to an acupuncturist who told him that his night sweats he’d been experiencing for sometime, needed investigation.

In Barcelona at his work summit, Thomas’ pain continued. The health insurance company found a doctor for us to see. This doctor said he had back pain and needed medical attention and prescribed some mild pain killers. His health continued to gradually decline, but he was still reluctant to go to emergency as he was in too much pain to sit around and was concerned about the language barrier.

A few days later, after talking with a friend on Palma, he rang another doctor in Barcelona who x-rayed his back. The x-rays were of such a poor quality that they were unable to be read, but the doctor gave him some powerful painkillers for the flight back to New Zealand. Thomas’ health continued to decline, but he thought this was due to the constant pain, and he was unable to carry any of his luggage, including his own backpack. We booked into a nice hotel near the beach where he was able to rest and prepare for the long flight home. He was still thinking he just had a bad back, he carried on knowing how back pain can be persistent.

On the flight home, he was quite comfortable and didn’t take the strong painkillers. We discussed the option of going to emergency upon return to New Zealand.

On Sunday 3rd November, Thomas presented to the White Cross Emergency medical centre where the doctor treated him for a back injury. This injury was accepted by the accident compensation board, despite the fact that it was done overseas. New Zealand is amazing! This doctor took some blood tests.

On the evening of Monday the 4th November, there were 2 phone messages left on Gaylyn’s phone saying there were some concerns with his bloods and could we please ring. It was approximately 7pm when we heard those messages and rang straight away. They told us we needed to ring in the morning, but the levels of calcium were high. We looked this up and saw that it wasn’t a good situation. Thomas’ health and condition continued to decline.

On Tuesday 5th November, Thomas presented at Rust Ave Medical Centre where he was allocated a new doctor. (he hadn’t been before in New Zealand). The young German doctor looked at his blood results, gave him some new pain killers and told him to get another blood test in a week’s time. This was despite the fact that we had a bag packed ready for hospital as we wanted some answers.

On Wednesday 6th November, Thomas’ health had deteriorated to a concerning level and after a bad night sleep, ringing the doctor’s surgery and describing his condition we went to the Emergency Department at Whangarei Base.

Here it only took the medical team half an hour to tell us that all blood results were indicating he had Mulitple Myeloma. He was given an x-ray which showed he had a compression fracture to his 4th Thoracic vertebra.

He was immediately given some morphine for the pain, and then he was put on fluids to get the calcium out of his blood stream. This was at a level over double the norm and his kidneys were down to 40% operating capacity. His life was in immediate danger.

He was given an extra drug that stopped the bone from putting the calcium into the blood stream. This drug was called Zoledronic Acid and we were told that it would stay in his bones for 10 years. It would also cause any breaks to heal slower.

Dental treatment was arranged as this was an important factor about avoiding complications but this was postponed as he had already been given the Zoledronic Acid.

On the fifth day in hospital, Thomas had responded well to having the fluids and the calcium count had halved and his kidneys were back up to 88% functionality.

On Monday 11th Thomas had an MRI

This showed that he had a tumour on his 4th Thoracic vertebra.

On Tuesday 12th We had a meeting with the haematologist at the Jim Carney Cancer Centre. Sarah Poplar gave us a good impression of the situation stressing that she strongly advised going ahead with the treatment, as by not doing so would end in a crippling demise. The following are notes taken during that meeting.

  • Multiple Myeloma is a disease of the cellular plasma in the blood. There is evidence of it in the top back and pelvic bone.
  • As well as the fluids, Thomas was given steroids as a rescue procedure because he arrived in a state of emergency.
  • The tumour on his back is a lump made up of the plasma cells
  • They need to stop the cancer first so the tumour can be removed
  • If the tumour was endangering or impinging on the spinal cord, then they would operate immediately, but that was not the case. Radiation down the track may be needed.
  • Sarah is going to be talking to the radiation team in Auckland.
  • The biopsy results from his bone marrow are still arriving but the diagnosis of Multiple Myeloma was confirmed.

Treatment

  • 85 – 90% of people respond to the treatment and things are looking very positive
  • He will be having anti-tumor chemotherapy, a bone strengthener/calcium controller 24 doses monthly. (2 years of treatment)
  • This is not curable but it is very treatable
  • Treatment is to control the tumors and to get the cancer down to minimal levels.(paraproteins currently reading 5.9mg/L) This is high
  • Need to get control of long term treatment
  • Weekly injections under the skin
  • Other chemo in the way of pills

Blood tests

Once a month – blood tests and monitoring by Sarah

Once a week – blood test before the injection with Janet (cancer nurse)

After first cycle – get training in self injection

After 4 months and there being a radical decline in the cancer cells – paraproteins, they will take a sample of Thomas’ bone marrow.

Then they will give a powerful burst of chemotherapy that will kill off most of his own bone marrow cells. The sample of Thomas’ bone marrow would have been frozen and then will be returned to him once the rest of the cells have been destroyed, to build up new bone marrow cells.

Alternatives

Turmeric is known to have a positive effect

Green tea is a contradiction and mustn’t be taken and Grapefruit causes a reaction with some of the medication.

Main Drugs for Chemo

Dexamethasone – a steroid

Cyclophosphamide – Chemo in tablet form

Bortezomib – injection under the skin

Other drugs

Valaciclovir – anti viral

Allopurinol – for one month cycle only – antigout

Co-Trimoxazole – antibiotic

Metoclopramide as needed for nausea

Hospital drugs on top of the above

Tramadol – excessive pain

Phosphate phebra – to build up phosphate in the bones

Omeprazole CA – gastro protection

Paracetamol for mild pain

Laxsol – constipation which is expected on the first few days of chemo

Future Appointments

Weekly visits to cancer clinic after blood tests

Psychologist appointment to be made at Jim Carney Centre

Dental appointment in approximately a month’s time

General Comments

Now that we have the diagnosis, of course we regret not going to a doctor and getting blood tests sooner. Even the two doctors in Barcelona still assumed it was just back pain and didn’t order blood tests. Thomas had lots of rest before coming back to New Zealand. The hospital staff and the doctors involved are amazing and have done everything to instill confidence. Thomas has responded well to treatment so far and his vital signs have returned to normal. The cause of this cancer, like most, is unknown, except that long-term exposure to chemicals is a common thread amongst people who get it. Our boat builder said to us before leaving New Zealand, that he was surprised we weren’t both ill because of the amount of diesel and oil that were in Qi, in places that we couldn’t reach and had been absorbed into foam layers under the fuel tank and in our water pipes. Now Qi has had a complete refit, this problem has been resolved. If these toxins were the cause of the cancer, then we have removed the cause.

New Entry dated 27th November, 2019

As a part of Thomas’ treatment to directly kill off the cancer cells, he was administered high doses of steroids. 40mg for four straight days out of every eight days. In the days just after his first chemo treatment on the 12/11/2019, Thomas began experiencing long hours of being awake in the middle of the night and discovered new insights to his feelings for others and perspectives on life. He found the experience quite enlightening and joyful. However the pain wasn’t under control. He wasn’t experiencing any pain when he was lying in bed.

On November, 16th, the weekend after having his first chemo and the night after taking two tramadol in the morning, Thomas experienced a high level of anxiety that lead him to want to go to hospital. He calmed down after a while and a back rub and then went to sleep. Thomas had a reasonably good nights sleep and was calm the next day.

The boat was transferred to Dockland 5 by lorry on the 14th November. There was still a lot of work to be done, so Richard asked if we’d continue to stay in the flat at the back of the boat shed at Matakohe. Thomas spent quite a bit of time out at the boat watching her get ready to go and take photos. This tired him greatly and it was quite emotional.

Thomas was only able to stand for approximately three – five minutes at a time before needing to rest. He was having to lie down 3 times during eating a meal because the pain was so great. We were both worrying that he was getting worse.

He began to experience tingling and numbness in his fingers and toes on some occasions.

Monday 18th November

Thomas rang Janet, his nurse from the cancer clinic and discussed his head space and the lack of pain relief. She instructed him to go to the emergency department at Whangarei hospital.

It was decided that Thomas’ steroid dose would be reduced by half and Codeine would be trialed as his pain relief along with two paracetamols.

He had a new CT scan of his back and Dr Sarah Poplar conversed with the radiation team in Auckland to see if they thought they could do anything for the pain.

They kept him in overnight and prescribed more phosphate for him to do another five day course.

Tuesday 19th November

Thomas had his second course of chemo and was released from hospital.

Thomas had no adverse effects from the chemo

Wednesday 20th November

We received a call from Auckland booking Thomas in for an assessment on Thursday, 21/11/2019 and radiation treatment on Friday 22/11/2019. They booked two nights accommodation for us at the Domain Lodge across from the hospital, a hotel designated by the Cancer Society to house patients receiving radiation away from home.

Thursday, 21st November

Thomas was feeling rather pain free with ¾ of his dose of pain killers. We drove early in the morning to reach his 9.30am appointment. Unfortunately, they let us wait 2 hours before they interviewed him.

Thomas went into a CT scanner to be measured up for his radiation treatment. He was tattooed with dots to ensure that the radiation treatment would be exact as, they wanted to ensure his lungs and heart would be safe as they were very close to the site.

Because he’d had his chemo, they weren’t sure if they would go ahead with the treatment the following day or not. They would ring us if it was to be cancelled. We had no call.

The hotel was very nice and we both felt very relaxed. I went for a walk through the beautiful Auckland Domain to get to Burger Fuel, our all-time favorite hamburger joint. We had a delicious late lunch of some our favorite food.

Friday 22nd November

I took Thomas for a drive through the park. He was still only managing about 200m at a time before he needed to get comfortable again. We went to the war museum, which was free for NZ residents, and we spent about half an hour wandering around the Polynesian display. It was very calming and beautiful.

We went to the hospital for our 3pm appointment. He was given 3 minutes of very intense radiation to the crushed vertebrae. He had no burns but it felt like the pain had changed.

We had a quiet night in the hotel.

Saturday 23rd November

Thomas was feeling good. He’d received a call making an appointment with the orthopaedic team for Tuesday. We called in for more Burger Fuel on the way back to Matakohe.

Monday 25th November

Thomas had organized a surveyor to inspect the boat so we could change insurances. Unfortunately, Richard was busy and we had to go down. As Thomas’ appointments were all the next day, we decided to stay in Whangarei overnight at Aunty Jeanne’s place. Thomas was quite comfortable and I organized running around to get a Warrant of Fitness for the car.

Tuesday 26th November

Orthopedic Team meeting – Thomas had another x-ray to the spine

We were able to see that the crushed vertebrae had settled and was unlikely to move and endanger the spinal cord.

We asked questions about the drug they had given him to stop the bones from throwing off the calcium and its effect on the healing process. The doctor told us that it will not affect it adversely.

He said healing will take about four months.

He said swimming would be the best exercise to build up the muscle around the break. He did say that he could do some other exercises to keep up his fitness.

He said the vertebrae will always be crushed and won’t regain its previous height. Thomas will forever be two centimeters shorter.

He told us that it is unlikely that he will experience other breaks as that vertebrae had a lesion from the cancer – a tumor inside the actual vertebrae, taking the area up where bone should have been. This wasn’t strong enough to withstand the strength needed in the spine. There are no other lesions currently present in his spine and none will hopefully appear with the current cancer treatment.

The registrar showed us a photo of the break. You can see the crushed vertebrae that used to be the same height as the others around it. You can also see that a fragment goes slightly into the spinal canal, but it isn’t in danger of touching it. The break has caused some pressure on the nerve coming out of his spine at this place and this is what is causing most of the pain.

When Thomas asked, should he lose weight, the doctor laughed and said only in your head, and you don’t want to do that, because this vertebrae holds up the head. It is T4, The nerves from T4 go to the chest and the chest wall. This could also account for some of Thomas’ breathing difficulties.

Thomas had his third chemo therapy with no adverse effects.

Wednesday 27th November,

Thomas has spoken to his boss about doing a small amount of work. He has written a blog and is able to concentrate a lot better. He has another appointment this afternoon with another one of his bosses.

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