So... just to avoid jumping straight into continuing where I left off last week, like any good soap opera, I have decided to take this episode off on a parallel storyline 😀.
I have realised it's been a few weeks (actually 5 😮) since I did a stock take of my current status of pains and ailments, so here goes.... done in my own imitable style lol... you have been warned 😋.
In terms of where I am pain wise / other updates this week...
- Boob is still blue. Even after surgery 8 weeks ago. And despite continual daily washing in the shower lol. I am now just disappointed that it is not luminous. Would save excessively bright lighting to read at night if I could have used it as a torch... (just joking 🤡🤡🤡)
- Both scars healed completely and I am now discovering the wonders of Bio-oil... if you believe the hype, it will make my scars magically 'disappear' 😀.
- My lymph node scar actually does show a 'divot' out of my sideways profile under my arm. It doesn't bother me - if I lose weight, maybe the rest of my skin / size will shrink to match.... and if I don't, then it will be one of those badges of honour I will wear with pride of my survival 😀😀😀.
- My left arm (lymph node one) had been feeling slightly better, but it appears that the chemo may now be attacking the healthy repair of nerve endings... so actually it is more tingly than before, and to actually touch it can hurt sometimes... it's a bit like if I run my hand down whole arm, the whole thing is like getting mini electrical shocks... so the quick answer is for me NOT to run my hand down my arm lol...
- Still having issues unscrewing some jar lids with my left hand as it requires too much effort.
- Because of the nerve damage, I am having some issues fully raising my arm above my head just now, and weirdly, sometimes my elbow doesn't want to straighten out either... am hoping that all these effects are temporary, as otherwise I am going to start looking like some kind of weird Quasimodo creature!
- Have a constant runny nose, which is more just an annoyance than anything else.
- I have discovered that my skin is drying out quite quickly as a result of the night sweats, and the chemo itself. For the first time ever, I am now actually regularly moisturising my skin all over - I should really have made more of an effort before I got to this age 😜. On the upside, the moisturiser is working in the main - but I have been offered 'cow udder' cream when things start getting worse. (Not a word of a lie btw - it was discovered by vets massaging cows udders... and it's quite expensive supposedly!!!)
- Had to cut my lovely long nails down short... it feels random to say this, but even my long nails touching anything or texting actually sent little flashes of pain up my fingers - this is neutropenia - nerve pain.
- Started to have on/off back pain. Having asked the support groups, this is quite common as it's the cells in my bone marrow trying to replenish themselves after the chemo attack of last week. I will of course have this verified when I go back to oncology for chemo next week... just to have the facts lol.
- Clearly last week's blog documented the various side effects of the chemo plus viral infection, but generally I am now keeping in good health, although I have discovered that if I go too long without food, my body physically starts shaking. It's not a good look. And I think I might get cranky too lol. 🤔
- Sleeping patterns are varying - if I get between 4 and 6 hrs sleep a night that's good... but if I get really tired through the day, I tend to have 15 minute power naps without much warning lol.
- Have started having much changed taste buds, and my mouth starting to dry out and feel quite sore. Discovered that trying to eat something with chillies in it, really not a good idea 😢. Normal mouthwash and mint imperials were also too strong for me, and gave an unfortunate burning sensation, so I will speak to hospital when I go there next week, but in the meantime I have ordered special mouthwash and toothpaste via Amazon, at to be honest, quite eye watering prices - £10 for a small bottle of gentle mouthwash for people undergoing chemo and £7 for the associated toothpaste!!!
- Perversely, since my head shave, noticeable fuzz had already grown back in the 9 days before I had chemo. I can't decide if my non chemo hair is almost blonde nowadays (I was mousy brown), or if it is actually coming back grey (silver highlights) naturally... but all this has shown me is how little hair I actually do have physically growing out of my scalp pre- chemo!
- My eyes are starting to get quite dry and crusty at times, and a few eyebrow hairs are now starting to come away when I cleanse my face or if I itch them (they are quite itchy - am guessing this is the beginning of the hair follicles disintegrating).
- My arms are starting to wear lovely shades of bruising at different intervals and spacing up both arms... the rest of this blog will explain why later lol. But in essence, I don't think I will be wearing vest t-shirts by choice anytime soon 😜.
I think that's covered everything... after discovering the joys of lactulose solution (better than laxido or fybrogel in terms of taste, quantity required and quality of product, I can now give an independent review lol), there are no issues with bowel, bladder or stomach thankfully 😀😀😀.
My appetite is to do little and often - so think I am ok in that arena too now.
So.... returning to the big drama that was the tail end of last week... the thing to remember as you read this - I am absolutely fine now, and can actually look back and laugh. 👌😜❤️
Thursday was not a great day. And that may even be a slight understatement.
(Yip, sometimes even a drama queen like me can be understated lol 😜.)
After a horrendous night, and literally feeling like I could quite happily roll over and die with the head and back pain, sheer exhaustion, not being able to keep anything down, the dry retching, the whole body and muscle pain from being sick, the chills and the fevers, the swollen stomach, the bloody snot clots from my nose.... I phoned the cancer treatment hotline. I also managed to stand on my scales to note that I had lost 5lbs in 3 days... I was pleasantly pleased for my diet, but clearly that was not what the hotline wanted to hear.
They slightly misrepresented my symptoms to the hospital, as I had explained my urine was still pink from the red chemo....that translated in their message as being blood in my urine, but aside from that, the service worked fast, and I was asked to attend the Acute Medical Unit at St Johns, preferably within the hour in case I needed emergency treatment.... keep that phrase in mind, when I then explain what actually happened in reality... 😜.
First off, the unit is located on the far side of the hospital, on the second floor. I had to stop for a rest half way there as I was quite knackered. Following the signs in the hospital, the name of the unit changed twice as we progressed along the corridor, and then there was no signage apart from Ward numbers once we actually got onto the second floor.
Once we worked out where we actually supposed to be, we got buzzed in and asked for my referral letter. Twice. Despite me saying that it had been via the cancer hotline just an hour previously.
They also asked I was there for EMA or PPA unit.... at which point I think I maybe wanted just to stab someone... 🤐😢😫. I mean wtf is with all the changing acronyms for someone who really just wants some kind of magic pill to make her feel better???
Then I got ushered to a bed, and what began as a very long day of testing and chatting began.
First off, after about 20 mins, I was seen by my key nurse. So I explained all my symptoms which I had explained on the phone, and then got my blood pressure, temperature and weight checked.
(At this point I sent Dave home - I had an impending spidey-sense that I was not going to be getting out in under an hour... and there was nothing for him to do other than pace the hospital waiting for me.)
After about another 20 mins, then the doctor arrived and asked me to tell her all my symptoms. At which point she took more notes, did the listening to my heart, chest, liver, kidneys, and did that hollow tap thing on various parts of my body. She then did the feeling and prodding all over my lower torso, and actually it transpired I had a really tender area over my gall bladder. Discovered that when I nearly hit the roof with the pain of her prodding her fingers in deep, whilst asking me to breathe in....
Anyway... after this she said that she wanted to send me for chest x ray, possibly an ultrasound, do a urine sample, do a mouth swab and get me fluids, anti sickness and painkillers, but the immediate thing was to get blood tests done asap.
So with her lovely Irish brogue, she then proceeded to butcher my arm. 🔪🔪🔪😰😰😰
She took 3 attempts (and about 20 minutes) at getting the cannula in, and it was so painful, that literally I sobbed in pain, and my whole body was convulsing. I tried to tell her that it didn't feel right - even through my fear of needles, I know when the cannulas are in, as I have had quite a few in my time. However, she kept stroking my arm, and apologising for hurting me, to the point where I think she was upset herself... so I then apologised to her for being so bad at getting needles in my arm... it was a vicious cycle.
However, when she then broke the news to me that she couldn't get blood out of the arm she had just knackered, and that was only going to be good for putting things into my arm, she then asked if it was ok to take blood from the other arm, but this time with a smaller needle... at which point I was really quite anxious... which maybe didn't help of course. But genuinely, so far in all this process and having surgery, I have never had any issues with anyone getting blood out of me, but this poor woman took yet another 15 minutes and 2 different locations to get blood out of my left arm... and physically drawing the blood was for the first time excruciatingly sore.
With the benefit of clear thinking now I am better, I am guessing that me being dehydrated and having chemo in my veins, as well as nerve ending pain will have contributed to all of this drama... but genuinely I don't think I have ever cried so loudly, and been in so much distress ever before. 😢
Anyway, once the torture was over, the curtains remained closed around my bed as they had decided I needed some privacy to calm down. My cell inmates were an interesting and nosy bunch...
I should point out at this stage, I was knackered from no sleep, really splitting headache, and I had some sensitivity to light. And I was dead dead grumpy. So having noisy and tactless fellow patients did really not improve my humour. And there was rubbish playing loudly on the tv too. As I said... really 😡 lol.
Then... after about another 25 mins, the senior doctor came in. She also asked me to give her a rundown on my symptoms. Turns out there was some concern I may have gall stones, so I had to go through more prodding and poking in the tender area... and yes, it was still sore 😢.
Anyway, she also went onto explain they were very worried about me not being able to keep anything down, so she needed to get the fluids into me, and I would have to be able to eat food and demonstrate I was not going to be sick before I could even think about going home. She also couldn't prescribe any drugs until they blood test results came back 😢.
So I offered to try tea and digestive biscuits.... but just in case, I also asked for a sick bowl...
Anyway, I have to say, that things started moving rapidly at that point - the senior registrar came in to see me, as did the on-call Oncologist and the pharmacist - all separately. At each point, I had to reiterate my symptoms, what drugs I had been taking (none for 2 days by that point) and which point I had practiced it to perfection and could cover it off in 5 key bullet points.
Basically they all agreed I needed anti sickness meds ASAP, and that going forward my chemo treatment needed to include longer course of steroids to help sustain my body, permanent anti sickness tablets through 4 months of chemo, and possible pain relief that would not interact with the other stuff. Oh, and the lactulose solution as all these tablets together have the added bonus of causing constipation. And we can't have that now, can we? 😜
Anyhow, I was finally allowed some drugs. Oral tablets, as well as through the cannula... 😢.
The tablets were fine, but I knew as soon as the drugs were going into my arm, there was something wrong - it was really painful going in. Like liquid fire. I did mention this to the nurse, who asked if the doctor had got the cannula in first time... so I had to say no...
Anyway, she said she would keep an eye on it, and actually put an extra bandage over it so I didn't have to worry about keeping my arm rigid.
So... next thing was that I was whisked off in a wheelchair for my X-ray (speedy jump the queue service if you are brought from a ward 😀).
Unfortunately I had missed lunch by this point, but Dave had swung by with rescue sandwich and lucozade for me... but interesting that I was supposed to eat before I got to leave and I didn't even get hospital lunch to test the theory!!
Good thing was that I managed to keep the sandwich down, but that wasn't quite enough to prove me well. The senior doctor came back and said that although absolutely the best place was for me to go home to avoid any extra infections from hospital, I just needed to persevere and get iv fluids in me... so that took a wee bit longer to arrange....
In the meantime,the ECG technician came and ran a trace on me, and the on duty senior doctor had changed over, so he also came by to ask about my symptoms and tell me what the next steps were.
On good news front, my bloods were fine, although my lymphocytes were a bit low and they thought I also had a viral infection.
Anyway, he then asked if I had any questions, and I said to him that my arm was really sore with the cannula in... at which point he looked at my arm and exclaimed that the iv fluids had to stop immediately (they had been running for over an hour by this point...). Turns out my cannula was not in right, and all of the iv fluid had gone into my tissue as opposed to my vein, and my upper arm had literally doubled in size without anyone noticing. I mean, I don't normally like to be petty and say "I told you so", but in this case I really felt I merited the right! 🤒
Anyway, the offending article was then quickly removed, and the relief was immediate. Happy days!!! ❤️❤️❤️
The only downside is that I then needed to lie flat with my arm elevated for a few hours until the liquid could start draining away and they could check for any adverse reactions.... so... realised at that point I would be staying for dinner....
After a few hours, I was feeling great. 😊
All the drugs had actually kicked in, I no longer looked grey, I felt I could even smile at my fellow inmates... right before I put my headphones on, put my skull cap over my eyes and listened to my audio book lol.
The only downside is that I found it really difficult to use my phone as my right arm was elevated and had to stay still, and it takes ages to text anything with just my left hand... I feel this may be something I need to develop given that anything they need to do to me will generally be on my right side due to dodgy lymph glands on other side...
I ended up having 3 course dinner in hospital, and it was quite tasty - I avoided the tapioca and semolina though. Reminded me too much of what I had seen in previous 24hrs!
As soon as I saw the magic green bag with my drugs I knew I was on the home stretch. The senior doctor came and gave me a hard look and asked if I was sure I was not going to be sick... and I basically I lied and said yes. To be truthful I think 3 courses had been a tad over adventurous given I had not eaten properly for a week, but there was no way I was planning on staying the night. I mean the staff are all lovely, but I just wanted to go home....
Anyway, finally got home at 8pm, 11hrs after arriving at the hospital for emergency treatment required within an hour lol.
Come Friday - I was a brand new woman. Felt like I could wear my pants outside my trousers, and maybe don a small cape. 👩🏻🎤😀. Oh the miracle of drugs 😀😀😀.
I was up and dressed by 8am, having had a great sleep for 6 solid hours, had breakfast, went a wee walk with the dogs (with a few breaks for energy levels), and kept all my food down, and then played catch up with all the messages I had received and basically ignored over the course of the previous week.
Saturday and Sunday were the same! Coffee and cake out with the neighbours one day, and then lunch out the next...
The only hiccup was that the completely amazing anti sickness meds can cause insomnia. And they have given them to me, a serial insomniac at the best of times. Oops.
Oh well, I am pretty sure we can get a concoction where everything will balance out eventually... 😀😀😀.
Rest of this week was excellent as I got my work laptop kick started, got back into the swing of things and even made it into the office to report for duty. Happy days... all's well that ends well this week.
There were a couple of other stories to share, but will save them for next week - have just realised that I am writing a novel here... but hey, this was started as my therapy activity and record of events... if no-one reads this far, then I am cool with that lol.
Just need to keep reminding myself... I can get through this.
And I most definitely will.
Super Linz 👩🏻🎤 - special power: humour, sarcasm and resilience lol x
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