A lot of my friends have recently asked me if the chemo hurts or burns as it passes through the veins. I remember the first time the nurses connected me to chemo in the ward back in May. Not knowing what to expect I felt rather scared and waited with baited breath for any feeling or change in my body.
Nothing happened. I slept, ate, talked, laughed and did all the usual things just as before, but with the added pole and chemo bags hanging from it to push around. My appetite increased due to the steroids I have to swallow while having the chemo, and the night duty nurse Bec was always kind enough to make vegemite toast and a cup of tea for Sharleen and me, around 1am when she came to do the obs. Bless her, she still does this, but during my last visit to the ward this enjoyment was an impossibility for me with my ulcerated mouth and throat.
So, no, chemo doesn’t hurt at all. The main problem I have as an out patient is the heavy bag I have to lug around with the 2 cads safely stowed, Eric and Oscar. Oscar has a refill every day but Eric has his thick mixture (very pretty red stuff) which slowly drips through my veins over the entire 96 hours. Oscar’s bag of purple fluid weighs at least 2kg, which isn’t hugely heavy, but when energy levels are low, it’s a load to carry around everywhere. Going to the toilet is a chore, because the bag has to be carried ensuring the lines are free and clear of any snags. Bed time means a change in how one sleeps…..I tuck the bag between pillows and cushions to keep it from falling over should I roll on my side, snagging the lines and stopping the procedure. The boys object and beep loudly whenever this happens.
The week following the chemo is a very different story. The steroids stop, the white and red cells suffer, blood tests show the kidneys are not getting hydrated enough, and energy levels are almost non existent. Daily injections cause joint pains, pins and needles and numbness in the fingertips and toes, sometimes extending further into the front pads of the foot. I use a heat pad on my feet often to relieve this horrible feeling.
I haven’t had a lot of blood transfusions as my levels pop up well enough when the injections stop on the 5th or 6th day, and my body is happy again about not getting the extra oomph from the steroids. No wonder those weight lifters and body nuts have so much energy and enthusiasm for movement etc. Some patients seem to have blood transfusions on almost a daily basis but then I have no clue as to their suffering. So many of the outpatients look far worse than I am.
Usually extra fluids sort my levels out pretty well and help me feel a bit more like staying upright. I think I’ve had about 10 transfusions in total which is far less than others I’ve seen getting hooked up with it. This last course of chemo is being watched closely by the doctors and nurses and I guess that has something to do with my rapid downturn in health after the previous dose. It gave us all a bit of a scare and a wake up call. My body is not holding up against the chemo poison as well as it was in the early part of treatment. Hopefully a lot of the pain, ulcers, infections can be avoided this time…the lack of energy is a given though and I will just have to ride it out as always.
Emotional changes are difficult to handle – well they were for me anyway as I’m normally very capable of holding in the emotions until alone when I can cry or sit and reflect and not worry anyone else in the family. This is listed as one of the side affects of this type of cancer, but it was a shock to me as to how ‘sooky’ I became. I have my bad days when all I want to do is cry, but try my best to hold it in. In the last weeks I didn’t succeed though and cried often, which was rather embarrassing for me but accepted as nothing unusual by the nurses and doctors. It was harder to see tears spring into Tim’s eyes whenever he was the unlucky one present.
The emotional hump doesn’t allow for any spare energy to deal with outside problems to be considered or dealt with. Problems bothering other family members, friends etc have to take a back seat until I can again deal with either helping or simply coping with the information. At this time there is only enough energy to cope with my own problems, pain, fears, uncertainties while trying to stay upbeat and positive so I can beat this thing.
From what Kirk Morris has said, Heffy has been sent packing, but until the next lot of tests are done, this information cannot be guaranteed. Follow up treatment hasn’t been considered yet, because it’s not known just what might be needed at this stage.
On my return to our unit following the last stint in Ward 5C, we discovered a wet patch in the carpet right next to the dining table. No taps or pipes nearby and neither of us had spilt anything. After a couple of hours it was bigger. By this time I was exhausted and in bed, so Tim went to reception to inform them of the problem. A couple of the exec staff came to inspect it and the decision was made for us to move units. Exactly the same layout, slightly different colours in the furnishing, but the art work is duplicated.
Tim packed up our stuff while I stayed in bed until the last minute (feeling guilty by the way), and my earlier statement that we will need a truck to take our stuff home, was proven to be correct. How did we accumulate so much gear? Tim’s computer, printer etc added to the amount of stuff, and my magazines which I can’t bear to throw out, also were culprits. I have stopped having them sent down from home (subscriptions), so I’ll have a pile of them to read when I do get home. Anyway, the water apparently came from pipes between our floor and below’s ceiling…last time this happened the whole unit was saturated they told us. Not good.
This hotel/resort is also for permanent residents who have purchased their units, the usual vacationer’s use, (hence the noisy buggers on the weekend nights) and a portion of the units scattered throughout the various buildings for the cancer outpatients, sponsored by the Leukaemia Foundation. Some of the cost is paid by us, but it’s just wonderful having so much financial assistance from the Foundation. Worth remembering in my will when I decide to update it again.
The beginning of this week has been a busy one and involved a lot of time spent at the hospital. One reason was the new PICC line to be inserted. Kath who did the deed on the 6th Oncology floor was meticulous and fussy and let me watch the procedure on the screen. It helped distract from the painful pulling and pushing feelings as the line was passed up the vein toward my heart area. Tim came into the room as well and wasn’t looking too healthy at one stage when it was more than a little uncomfortable for me to handle.
The disappointment, angst and frustration we all felt later when the radiologist declared the end of the line was too high in the chest. A couple of hours later, Kirk and Kate investigated the situation, demanding a full radiology report, which showed the student radiologist had taken an x ray of half my chest which didn’t give the full picture of course. The decision, thankfully was made to use the PICC as is rather than take it out and insert another. I wasn’t looking forward to that believe me, and I reckon I’d have bawled like a toddler had that been the case.
The second day was the lumbar puncture day, done by the sweet female doctor from Ward 5C who took such good care of me, Raheena, overseen by Abdullah who apparently is the expert in LPs in the hospital. He tried to talk me into having no sedation, saying he could guarantee no pain….I didn’t believe him and opted for the sedation. Thank goodness I did as I felt pain during the second and third drawings of fluid which was bad enough with the sedation. I dread to think what it would be like without any. For the next 2 1/2 hours I had to lie flat on my back to allow the fluids to settle again. An enforced rest if you will.
Thank you again for all the support, loving and caring messages, and lots of encouragement my beautiful friends, both personal (some I’ve known for too many years to mention!) and the many lovely face book friends I am blessed to have. I feel I know you all very well and love seeing your comments whether on my posts or not. Sometimes I only have the energy to ‘like’ the comment, so please don’t think I’m not making an effort to join in the conversation.
My family has been supportive and caring too, which I appreciate greatly. It can’t be easy watching and hearing the reports of my progress and sometimes back flips on this trek.
So I hope this has helped with the queries on how this thing affects one. It’s not a journey or affliction I would wish on my worst enemy. The initial terror of the diagnosis keeps one’s mind alert and wary, and that’s not such a bad thing really. With this being the last expected dose of chemo, there are still the questions of what if and what next. Next week will be the down week as always, but hopefully with the extra blood, fluids and general care I can take myself, the infections and pain can be avoided. Keep your fingers crossed please.
No matter what happens over the next few weeks, I still have a time here before being able to return home to Maryborough, Daisy, Chilli, Tiger and Missy Clarice, not to mention my wonderful in-laws Mary and Adrian, and my grandson Steven. I am so looking forward to that day! No doubt I’ll cry like a baby on arrival.
So far this week things are ok. Eric complained last night saying his times were not correct, so we had them fixed today at the chemo ward by Michael. Oscar has been refilled and is his little heavy self until morning. Eating and drinking are not a problem as yet, with my appetite behaving like a normal person’s ….for now. I’m gaining a bit of the weight I’ve lost lately.
Much love and big hugs to each of you. Stay safe in Perth with all those windy and wet storms, and stay warm in Victoria. By the way Doreen, I must mention I re-read your last letter while feeling better, and howled laughing at the antics of your little granddaughter. She is a gem!
Till next time, maaawhaa.