My musings and ramblings in a blog. By recording my thoughts and my fears I think this will help me come to terms with this disease and maybe reassure others who might be unsure. I will also post pictures of my knitting which keeps me sane!!
What they don’t tell you
Not quite halfway through this chemo shite and these are my observations on common side effects that no-one talks about too much as people tend to focus on the bigger effects. Which is quite right. A lot of people end up in hospital on a regular basis through having this treatment either very bad side effects, bloods low, infections etc.
It hit me today about the smaller side effects that have such a dramatic effect on our everyday lives.
OMG the crying comes on and you can do nothing about it. It hits you like a ten ton lorry, boom… there you go, take that. You feel very, very sorry for yourself.
It wears you down, everything small thing you try to do it seems it like climbing a mountain. I walked up the stairs and had to sit down on the bed as I was puffing and panting with the effort of the walking.
No energy to do anything, you just want to sit and do nothing
No concentration for a few days. I will get up to get something and stop and think ‘what was I going to do or get?’
Horrible tasting mouth
Urgh , coffee, tea everything tastes horrid. Does go after a few days and settles down.
Didn’t suffer with this during menopause but now… duvet thrown off in the middle of the night!! Hot flushes during the day just sudden sweats, horrible!!
No hairs up my nose so it likes to ‘run’ more than normal.Always have a tissue to hand.
Nearly all of my hair has gone and I feel I’m getting used to it in as much as I will answer the door to the postman/postlady and think nothing off it and wonder why they look embarrassed!! Poor things. AND the hair below…. go to the loo and wipe myself with tissue and bits of tissue stick to my skin as no hair!!! Sorry needs to be talked about .. these are facts!!!
These are my main side effects. Nothing as bad as some people I do understand but, they get me down. I just want my life back and I keep thinking I have got until at least June/July before the finish line.
Little things, but the sccumulate till you just can’t take even the slightest extra thing!
Have you had things gettinginto your eyes from lack of eyelashes?
Hi there Taralou
I’m a new member here as of like 10 mins ago, I created an account, logging in & your post “smaller side effects no one talks about” was what came up first. It was such a relief to read your post, that decided to share one of the many side effects that I am currently experiencing on the medications I’m currently taking for cancer treatment. (I hope I’m in the right group here ). The one side effects that I’ve been getting and has caused a lot of concern for me is “Memory Loss”. I had no idea the medication had such a huge impact on my memory, I was never told it would /could be a side effect. It affected me in such a negative way, as I couldn’t understand why I was forgetting the simplest of things like people’s names, it was having an impact on my work abilities, I felt really stupid at times and was made to feel stupid because I couldn’t remember certain things or 2 mins after being given an instruction I would forget what I was told to do. I started losing my confidence, I’ve never been an academic person but I am by no means stupid. I then began to think maybe there is another underlying problem such as early Dementia and that really scared me to no end.
Yesterday I went to see a Dr, not about this, but for something else related to my cancer treatment. At the end of my consultation, I mentioned my concerns about my memory loss I was experiencing and that I was really concerned as it was having a huge impact on my daily life, both at home and at work to the extent I was getting quite depressed about it. He then explained that the medication I’m taking does have that impact on some people and no I didn’t have any underlying problems. He then took the time to discuss other side effects that may happen which I might not be aware of. I felt like a whole new person when I left the surgery. I was so relieved to hear that I was not losing the plot and my brain is still working. Moving forward I have to try and find ways to deal with this little glitch, I was told by the Dr to start writing things down to keep me on track both at home and at work, so I’m off to buy a little note pad today. I just hope I’ll remenber to take it with me to work
I hope by me sharing my story, it will help someone else who may be experiencing the same thing but like me, didn’t think about the medications causing the problem.
Hi there Taralou . Welcome to the website. You did well to talk to the doctor and identify side effects when we know we can deal with this stuff and go forward. Please look around this site there are many folks posting and you have a world of information at the click of the mouse. Are you in touch with Macmillan nurse as they are brilliant also the 08088080000 number for all sorts of help.At the bottom of the page are links to all sorts -- the download leaflets are on --- be.Macmillan. JOIN as many post site as you wish to gain knowledge or just a supportive chat there are lots of subject matter to explore. All the best pchad.
Many thanks for your comments however, I am not new to the site, have been on here for some months now!! I have not talked to my doctor either about the side effects these are completely my observations.
I know my way around the site as I have a blog and also started the Craft thread which is very successful.
I am not in need of the Macmillan nurses at the moment but do have one who has been with me from the beginning.
I am sorry if this has sounded negatve as it is not meant to and I am sure you mean well but I must wonder if you thought I am someone else you should have responded to.
We’d probably never have the treatment if we knew what was to come. The chemo ... for me was the easy part looking back. It’s when all the treatment’s done & you get that terrible fear that you’re all alone, & just waiting for it to come back. But on a much brighter note I loved having no hair. I was a bit shocked at first when people used let me go first in the queue, but decided to take advantage of the situation. We were also allowed to go to the front of the queue at the hospital for our bloods too, there was nothing on earth like that walk of fame.
All the very best to you xxx
You have just hit the nail on the head with the small side effects. I have just had second round of chemo and before going I came out in extremely itchy hives for about half an hour. It seems that this comes out when I become anxious and goes when I manage to calm down. I've also found that if I become upset my hands begin to shake although this doesn't seem to last long either.
This second round of chemo has been worse that the first, although I haven't had the headaches this time it seems all of the other effects of the chemo have been exacerbated. Tiredness, nausea, forgetfulness, no taste buds etc.
It didn't help that I felt as though I was an annoyance during the chemo. To explain, I currently get my chemo through private healthcare that my husband has. It has been extremely useful up to now as I was diagnosed just before xmas and the NHS was at breaking point so I wouldn't have been this far ahead in my treatment as I am now if I had gone that route. The only problem is that at the hospital I'm being treated at they had a power cut so that on the day of my chemo there was a couple of extra patients and the main nurse was on holiday, which meant the other nurse who took over who is a ditherer didn't want me there because there had been problems with my porth a cath in my arm (this had been sorted earlier in the week by the senior nurse) which she didn't know.
So I arrive at 11.00am. I sit in the chair waiting. An hour later she comes in looks at the cold cap machine, says it's not working yet, walks out. Also she says I'm just sorting the lady in the next room out. She and another younger nurse come and go for the next hour looking at the cold cap machine that neither of them know how to use properly and say its getting colder. Finally at some point they say lets put it on. The nurse put the cap straight onto my head and the lowered temp of 3 oC rather than setting the machine to cool down slowly and for my scalp to acclimate to it. About three quarters of an hour later the younger nurse comes in to put the needle into the porth a cathe, (needle too big but as it was in and worked it was just secured with tape). She then left me with the cold cap on. half an hour later older nurse comes in (I'll just give you your pre meds and be back in half an hour).
One hour ten minutes later she comes back with chemo drugs and gives them to me. Once drugs administered she says that the cold cap needs to be on for another hour and a half and leaves again.
An hour and a half later. The last patient in the ward. She turns the cap machine off. I have to wait to get the hat off as my hair was stuck to it with icycles. Finally I get the hat off. I feel extremely ill, I have a headache due to the cap and it being put on me after the paracetamol I'd taken to avert the headache had worn off. I was stressed and really upset with the whole scenario and I don't want to go back as I have no confidence whatsoever in what had happened.
Also she had said earlier that she had tried to cancel my appointment but that my oncologist said it should go ahead. As though that was a bad thing. Just because she didn't want the extra work. I didn't get out of my cap until 3.50pm. So I had been sat in a chair with cold cap on for approx3 hours without being able to go to the toilet or move around.
The question I have is how long should it take to have chemo?
Sorry I seem to have gone off the subject but had to get it off my chest.
Hi yellowdaffodil I am so sorry to hear of your awful time with the chemo treatment. Unfortunately it is the nurses that can make or break how you feel. I can honestly say I have gone through the NHS and cannot fault the whole team since the beginning.
When I go for the treatment the nurses are all so welcoming, other patients all sit and chat and, to be quite honest, we have a bit of a laught as well. Which really jhelps and relaxes everyone. We even get tea/coffee and biscuits.
How long chemo takes will depend on what regime treatment you are on. At the moment I am on EC which is administered by a nurse so takes about hour, hour and half from start to finish depending how busy the unit is.
But even waiting about is very comfortable and we are never made to feel a nuisance etc. The nurses are wonderful and will talk and listen to any woes you might have and always reassure you. In fact the nurses ALWAYS are telling us to go with ow we feel and listen to our bodies. Nothing is too small for them.
I do know with the cold cap that you have to wear it for about an hour before and after treatment which will add to your time there.
I hope your next treatment is better than the last. take care and good luck. xx
Thanks for that I seem to have gotten myself into a bit of a pickle.
I think I'll query how long when I go in next to get the port flushed.
Hello Taralou what they also dont tell you is that it can affect your nails and hands. Told the Oncologist today that my fingernails and toenails feel like they have been trapped in a door even tho' they look fine Also the soles of my feel tingle with pins and needles as do my 1st finger on both hands with loss of sensation. He said that "some of that can be permanent "! Priceless!. But lets consider the alternative ........no lets not. Just saying
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