Grappling with reality

[mensana]

It appears that my complaining is getting results. I saw the radiology oncology registrar last week. Unfortunately we had our first Covid lock down and the Cancer Council counsellor couldn't come with me. The oncologist was at home but later joined in via the phone. They gave me a run down about radiotherapy, but couldn't give me a starting date, other than maybe a week or two. Later it became two or more. At one stage I pulled the registrar up and told her what she was saying was grossly offensive, but it was like water off a duck's back.

I then went through some scans where they "mapped" my breathing so the radiation could be directed onto the cancer. They also measured and aligned me so that I could be set up exactly the same each session. They put small tattoos around my chest as permanent markers. Then they did a test run with me in the radiation machine. Finally it was back to a waiting game.

Very late last Friday a text message came saying I had an appointment on Monday at 2PM. It didn't say with whom, or where, and didn't have the name or any identification of the originator. I immediately rang the landline number it gave but the phone rang out. Tried ringing the mobile number where the text originated and got a message saying "This number is disconnected". So it remained a mystery, until Monday. Turns out it was from the Alan Walker Cancer Centre. The appointment was for an information session about chemotherapy.

When I turned up I was given an information folder and had the process explained to me. It varied a bit from what the oncologist had previously said. But I was told the chemo would start on Wednesday, two days away. I was exhilarated finding out that finally, six months after diagnosis, something was going to be done. At the same time there was a feeling of dread over the possible side effects of the treatment. But, as they say, "No pain, no gain". I asked about the radiotherapy but they knew nothing about it. On the way home I felt that at least something was finally happening. And the feeling which has been haunting me the past several weeks that I hadn't a chance of survival, is being replaced by a glimmer of hope.

This morning (Tuesday) there was a phone call from the Alan Walker Centre to say my radiotherapy was starting tomorrow, same day as the chemo. All of a sudden everything is happening. It pays to be the squeaky wheel, although I'll believe it when it actually starts to happen.

[mensana]

Now I believe it's going to happen. Wednesday I had my first treatment, finally! Had a morning appointment for chemo which turned out taking most of the day. Gave me four pills that had to be taken an hour before the chemo starts, some were antihistamines. Meantime they had a saline drip in my arm.

However, after they plugged Paclitaxel in the drip line things rapidly began to happen. First it was hot flushes, then a bit dizziness and tightness in my chest. This only took a matter of minutes. There was intense pain in the lower back around the kidneys which started to shoot down through the glutes into the upper thighs. My head began to spin and I saw 'stars'. Breathing became harder and I started to black out. Told the nurse I was in a bad way and going down fast. She immediately cut off the drip and pressed an alarm. People began running in from all directions. Ended up with over 20 crowded around. They hooked me up to an ECG. Blood pressure ran amok. But surprisingly, to me, blood oxygen level was 100%. I managed to not black out and was able to tell them what was happening.

Only 7 ml of Paclitaxel had got into my veins before they cut it off. Worried me as I thought they may abandon my treatment. After a half hour I'd stabilized and they said they'd continue with the Paclitaxel but at half the rate, I'd get it over a period of two hours instead one hour. They pumped some more antihistamine into me before continuing. Once there was 40 ml in me I relaxed and the rest of the two hours passed without any side effects other than a slight headache.

Carboplatin was then plugged into the dripline for one hour without any side effects. The whole process took much longer than had been anticipated. There was still the radiation to go through, so it was a long day. Next chemo is Wednesday, radiation is daily on week days. It may be psychological but I'm already feeling better knowing the cancer is no longer just running wild. So the show is finally on the road. Fingers crossed.

[Budgie]

Hi @mensana ,

I'm glad to hear things are finally on the move for you.  I really hope the treatment does a good job.  Take each day as it comes.  You probably won't notice many side effects from the radiation for a week or so. Some people don't have many side effects at all.   Do you have to travel from Humpty Doo every day or are you staying close by to the Alan Walker Centre?  When I was having my first lot of radiation, I had to travel from the Mornington Peninsula into Melbourne which could take anything from 40 minutes to 2 hours if there was an accident.   And while I  didn't have many side effects at the time, just the commute was enough to zap my energy.  So keep your strength up as much as you can.

Good luck 😀

Budgie

[mensana]

@Budgie, thanks. It must have been difficult with that commute on top of the treatment. Were you driving yourself or using public transport? I live further out than Humpty Doo but Cancer Council will only pick me up from there. As of last Friday I'm driving myself as the side effects are negligible and not likely to be a problem for a while yet, if at all (hopefully).

So now I've had one chemo and three radiation treatments, it still seems unreal. Friday I also had my first Covid-19 vaccine. Only felt the jab and no other effects. However Saturday there was some nausea and slight pain around the jab site. I put it down to the vaccine and not the treatment, although the listed side effects for both have a lot of similarities.

This coming Wednesday I get the second cycle of chemo. During the anaphylaxis last week they tagged me with a body label and were ready to ship me off to RDH. But they managed to work their way around it and all was well. So, with that and five radiation treatments lined up for during the week I'm well and truely on the way.

[Budgie]

@mensana, I am fortunate enough to have a hubby that has accompanied me to every single one of my appointments since diagnosed.   Because I've been on chemo nearly every day, chemo brain is rife in my mind.  That, coupled with the amount of pain meds I'm on leads me to not trust my driving capabilities, so I haven't driven for quite a few years.  Hubby doesn't mind as it gets him away from work for a while 😉.

I'm glad you weren't badly affected by the Covid jab, as I've heard alot of people have been hit pretty hard by it.  Did you get the AZ or the Pfizer?

You mentioned the similarities between the side effects of the chemo & Covid jab.  That has been an issue for me sometimes because so many drugs have the same side effects, & because of the cancer, I now take so many medications 😖.   But anyway, such is life! 

Your next lot of chemo should run more smoothly for you.  It's all happening now & I'm very glad for you 🙂.

Take good care 

Budgie 

[Hannah30]

Hi

Thanks for your story

I also live on a rural property but unlike you I have been wallowing in my diagnosis and unwilling to work in garden - lost interest.  Your story is inspiring especially as my cancer is mostly non symptomatic at present and end stage is down the road a few years (albeit painful if I decide the bone metastases are enough.  Will probably allow mets to migrate to somewhere that will kill me more quickly or take an overdose of sleeping pills.)

However I am also grappling with reality.  Swinging vastly between optimism and delving into alternative treatments as well as cancer hormone therapy and then digging up information that the cancer treatment has a shelf life and my estimated time of life is about two to three years.

I also need a sounding board.  I am living with a support person whom I feel I have to protect from the worst of this reality shift, and my two daughters who I desperately want to see live in Sydney and are under lockdown orders at present

[mensana]

@Budgie, don't envy you chemo every day. I get it once per week and have only done two so far. But it's getting at me already. From the day after the second dose I'm nauseous most of the time, some things taste bad and I find it difficult to eat although forcing the food down adds to the nausea. Guess that's my life now, for a while at least.

The vaccine was Astrazenica. I did full disclosure on my treatment so there wouldn't be any surprises. Second dose will be in mid September. They said side effects were variable and unpredictable. A friend got the Pfizer (both) and had issues for a while after each one.

Thanks for your support, take care yourself.

[mensana]

@Hannah30, your feelings are quite understandable, I've been riding that "wild roller coaster" as well. You often can't help think that everything is out of control around you and you're powerless to do anything about it.

A while back I met that head on by going to the cemetary, picking out a plot and paying for it. Also organised the headstone. That was "Plan B", 'Plan A" was to live happily ever after. It made a big difference psychologically, I was no longer just a helpless victim.

And then there's the project to build my house. At times it didn't seem I'd live to see it completed. But the plan in my mind shows how it will all look when finished. You'll be only too well aware, having a rural block is a full on job. There's a lot I've had to abandon but I'm still picking up little bits. I try to focus on what I can do, not on what I can't.

Everyone's circumstances are different. We all have to find our own way through as best we can. There'll be good days and there'll be bad, I've had them all. Just gone through three consecutive bad days, and hoping today is not going to be a fourth. But it is what it is.

The main thing, I believe, is to set plans or goals (or whatever else you might call them). Doesn't matter how many. The future is uncertain, there are many possibilities. And don't hesitate to reach out for help. The Cancer Council is a tremendous asset, just a phone call or even a face to face. They have helped me a lot. There's also this forum where you can see how others are dealing with their issues, and where you will get support.

Remember, you're not only a cancer patient. You're a whole human being, with history, memories and experiences, with likes and dislikes, with strengths and weaknesses, with family and friends who are part of your life, and for whom you are a part of theirs. That's all still there. It's something to hold onto.

My headstone has this carved into it:
Carpe diem
Get the facts
Get real
Deal with it

[Budgie]

@mensana, has your oncologist or GP offered you anything to keep the nausea at bay?  If not, ask for something; either Ondansetron or Maxolon are good; and try eating smaller meals, more often thru the day.  It does help.  Also peppermint & ginger are great for keeping nausea away.   With water, try to only take small sips, not large mouthfuls.   Things will get better, but they'll probably get worse first.  Take it easy.  If it gets to a point that you can't eat, see a dietitian.   One should be included in your welfare team.  Actually,  don't wait till you can't eat, see one before you get that bad 🤪.  

Seriously tho, I hope you find ways to ease your side effects.  Take it easy, & take care.

🙂

[mensana]

@Budgie, they have given me anti nausea pills but I have an aversion to drugs. I tend to put up with small discomforts if possible. Saw my GP for the first time in a while last Tuesday, He'd been away on study leave. But we had a good discussion.

He wasn't happy I got Astrazenica instead of Pfizer, but past history now. He's very much into drugs (for me, not for him). Because things had mostly improved just recently he wants to attribute it to the drugs. That's except for sleeping. Some nights not getting any sleep, others only an hour or two. This is my biggest worry.

Works out Thursday evening I dozed off and missed my Melatonin tablets. Didn't feel I needed the Ventalin so gave that a miss. And never took the cough syrup, Duro-Tuss, as the oncologist said the coughing was from the radiation and the cough syrup wouldn't help. Basically, I went to bed without any drugs. Slept for about four hours. Woke and laid in bed another few hours without coughing. During the day there were bouts of coughing but all in all it was a pretty good day without nausea or indigestion. Eating reasonably well, although there are some things I don't seem to like any more. But best night/day in a while.

GP is concerned with me driving myself to the treatments each day but I'm monitoring it carefully and will get help if necessary. Meanwhile, I've done three chemos, only another three to go. Radiation is everyday, so still a few to go. But I am basically halfway there. Soon I'll be onto the next stage.

Thanks for your advice, it's always very helpful. Take care yourself.