Things I’m glad I didn’t know, 

and other stories

about my 2023 health journey

As the treatment side of this particular health journey comes to an end, and I wait to see what effect the treatment has had, I have been taking stock of the experience – this “time out of time”.

 

The things I’m glad I didn’t know might have made me hesitate to undertake this process, as they’re not particularly enjoyable or nice. At the same time, I had to undertake the process if I wanted any chance of survival at all.

The things I’m sorry I didn’t know are those that might have made the process smoother or easier, especially at the start.

The neutral things that I didn’t know are a couple of discoveries I’ve made along the way, without attaching particularly positive or negative meanings to them.

The things I knew, which are just as they are, are not particularly fun or easy – but I was forewarned.

The things I dreaded, but which proved less bad than expected, have been a source of great relief to me.

The things that proved to be “perks” have been unexpected bonuses that have helped enormously to ease the process.

My useful learnings have also helped to ease the process, as and when I have discovered them. They are the kind of learnings that I would give as tips to other people who are in this process.

My blessings speak for themselves! My love and appreciation to all concerned.

  

On reading all of this, a friend who is a doctor was concerned about the things that I had not been told. She said: “We medical people need to do better!”

In case others are also concerned, this is what I explained to her:

Some of the things I hadn't known were told to me in general terms, the afternoon before my first chemo treatment. They appeared on the form that I had to sign (things like the potential for mouth ulcers, nausea, etc) – enough information for signing the form to constitute informed consent. Some of that was new to me, and some was general knowledge (I am sure that everyone who has heard of chemo has also heard that it can make one nauseous!). I had also chosen not to google “RCHOP”, because I don't like creating self-fulfilling prophecies (in the same way that I seldom read the inserts of medicines that list their side effects). I'm sure Danie would have told me more details, if I hadn't told him this about myself!

  

Things I’m glad I didn’t know

1.       That there was the possibility of spending so much time in hospital during the process! (In the four months since first being admitted to hospital, I have spent a total of 34 days – just over a month – in hospital. This includes day admissions for chemo.)

 

2.       How weird my nails would look.

 

3.       That there was a possibility that I would have a deep vein thrombosis (DVT) and, if I had one (I did), that I’d have to take blood thinning medication for many months.

 

4.       That I would have to stop taking St John’s Wort while taking blood thinners.

 

5.       How much allopathic medicine (including antibiotics) that I would have to take.

 

6.       How fond Danie is of mouthwashes!

 

7.       That I would have:

 

·       neuralgia (I get it in the soles of my feet),

 

·       occasional, hectic aches in my bones, including backache, and

 

·       occasional cramps in my limbs.

 

8.       That I could get Covid while I was in this process!

 

9.       That I might be confronted with other people’s raw suffering while in hospital.

 

10.   That all my wee would have to be captured in a bedpan, every time I was in hospital. (That’s how they roll, in the haematology ward!)

 

11.   That my eyelashes, on falling out, would sometimes land up in my eyes – this is really sore!

12.     That I would not be allowed to have cut flowers in the house, and would also not be allowed to do any gardening, for several months (as protection against exposure to microbes).

 

 

Things I’m sorry I didn’t know

1.       That I had thrush in my mouth! (This was near the start of Chemo Cycle 1, and I thought it was just the mouth ulcers that I had been warned about.)

 

2.       I really should have contacted the hospital sooner, in that first terrible week.

 

3.       I should have been watching out for constipation from the start.

 

4.       That there was an in-house dietitian, and that I could have consulted her from the start.

 

5.       That there’s a button on the drip machine that I can press, to make the drip shut up when it starts to make all its noises! (I only found this out in August.)

 

 

Neutral things that I didn’t know

1.       That I would sometimes have to take diuretics.

 

2.       That there’s an extraordinary process of analysing a person’s blood to find out everything one needs to know, to decide the next steps in the treatment plan.

 

3.       That a CT (computed tomography) scan looks at the relative sizes of nodules etc, while a PET (positron emission tomography) scan checks whether there is activity in the nodules by using a radioactive substance to show up areas of one’s body where the cells are more active than normal.

 

 

Things I knew, which are just as they are

1.       That this process involves a lot of being pricked by needles.

 

2.       That everyone experiences the process, and the side effects, differently.

 

3.       That my sense of taste would be affected. (For me, this wears off a few days after chemo – others aren’t so lucky.)

 

4.       That there would be times of great fatigue.

 

5.       That I would have to avoid people who have infectious or contagious illnesses.

 

6.       That the process would be “time out of time”.

 

 

Things I dreaded, but which proved less bad than expected

1.       Losing my hair.

 

2.       Vomiting. (Thus far, I haven’t.)

 

3.       Nausea. (I have only had it mildly, and only sometimes. Apparently some people on this particular treatment have nausea and vomiting really badly.)

 

4.       Looking skeletal. (I don’t, even though I have lost weight.)

 

 

Things that proved to be “perks”

1.       Eating foods that I absolutely loved as a child, but have had to avoid in recent years. I’m now like a kid in a candy store.

 

2.       I have way more energy, much more often, than I had ever dreamed possible for someone going through this process.

 

3.       I have made a new friend, most unexpectedly.

 

4.       Discovery Health’s oncology benefit and hospital plan have been covering almost everything that I need.

 

 

Useful learnings

1.       What happens when, during outpatient hospital visits. (I enjoyed making my flowchart.)

 

2.       One should always have a packed bag when going to the hospital for an outpatient check.

 

3.       It is important to get to grips with the low microbial diet, and also to prevent constipation, from early on.

 

4.       One can ask for other foods than those listed on the next day’s hospital menu, including juice or dessert for a meal where they aren’t mentioned.

 

5.       The existence of Fortisip.

 

6.       When one medical service provider requests a service from another one (for instance a radiology unit requesting the analysis of a tissue sample), they must put the patient’s doctor’s name in the “referring doctor” space – not the name of the organisation that sent through the sample – otherwise medical aid won’t pay.

 

 

Blessings

1.       The love and support of so many people – family, friends, ex-colleagues, circle dancers, …

 

2.       The absolutely amazing care from everyone with anything to do with the Haematology unit at Constantiaberg Mediclinic.

 

3.       Blood donors.

 

4.       All the care from Gail.

 

5.       My immediate family, including those who visit me: Julia (from far away), Jonathan, Odette, Tevya, Nina and Marjorie, and Rosemary, who is planning her visit.

 

6.       Renee, who has helped me to process the effect of this journey on me, at so many levels (and perhaps also the effect of me on this journey!).

 

7.       My own attitude, approach and experience of all of this – some of which come from deep inside me, and some of which are the sum total of the above.