Hi everyone , whatever stage you are at dealing with this foul disease I hope you can enjoy some of this sunny day. Unfortunately I find I can not. I have had 1 infusion if carbo caelyx for my first reoccurrence and I am finding my skin is super sensitive and turns very red even when I walk out in the garden Just for 5 mins. Can deal with that by covering up, high factor sunscreen and staying in the shade . Worse than that though is that my eyes have also become highly sensitive to the brightness & it is triggering awful migraine - type headaches. I have taken to wearing my Prescription sunglasses indoors - look like someone from the Mafia!! Just wondered if anyone else had experienced this and if you have any tips. I wondered about really dark sunglasses. Working in my very large garden is what is keeping me sane in lockdown so would be grateful of any ideas to help me continue .
Thanks
Jan. X
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Litchick
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Hi. That's interesting about the migraines. I was on carbo/caelyx from October to March so didn't have too much problem with sun, but suddenly in early February I started getting migraines every day and the sun did trigger them though I'm not sure that's how they started. I saw a neurologist after two weeks (I was lucky she had a cancellation) and she prescribed a course of steroids which fixed the problem. I didn't think it would work because I had been taking the steroids after chemo but they did the trick. You might check with your doctor. I was also prescribed tryptophan but haven't used it. Knock on wood they haven't come back. I was supposed to get a brain scan but once the virus took off I was afraid to have the MRI. You shouldn't have to suffer migraines on top of everything else!
My eyes were very sensitive to light after chemo and still are. I got new glasses with the lenses that darken automatically in the light and it’s solved my problem and I don’t have to keep changing glasses the whole time now.
Hiya and thanks for the suggestion. I have been trying today without any success to get hold of an optician to discuss this. Hoping it may be an answer.
My skin is much more sensitive post chemo, I’m six years on from diagnosis. I wear factor 50 sunscreen most days and it certainly helps. I too love to garden and have found being able to get out there and dig/potter/pot on etc particularly helpful during lockdown. I’m sorry I can’t help with the sensitivity you are experiencing with your eyes, I think a call to your CNS for advice is the way forward. I hope the rest of the chemo does it’s job for you. Stay safe ❤️Xx Jane
Hello thank you for your response. It’s good to ‘meet’ a fellow gardener. It seems to me that just when we need it most we have been gifted with the springiest if springs - the flowers and tree blossoms are simply glorious.
If you normally wear prescription glasses, you can buy sun over glasses which you put over your ordinary specs. I use mine a lot because they exclude almost all light round the sides- they curve round the sides a bit over your own glasses, unlike prescription glasses which are flat. I also wear them to keep pollen out when that's high, or if I have to go to the eye hospital and have those ghastly drops which mean you absolutely cannot bear any light at all for a few hours. I got mine off Amazon
The Rapid-Eyewear tortoiseshell ones were the nicest looking ones. I bought a set of two others because one was for night driving, but they're not so nice, look a bit cheap. Well, they were cheaper!
Too right! Though its not easy these days, what with never going anywhere except for chemo and bloods, and most particularly not being able to get my streaks done - as each day passes, more brown hair grows and I loathe it... Why am I not grey, its infuriating at my age (70)...
Hope the sunglasses work for you - I keep the naff pair indoors for 'migrainey' days and the other pair is in the car for when I go out... also very useful in winter when the sun is low and you're driving, by the way...
I’ve seen lots of on line advice about managing and styling your hair in lockdown and have friends who colour their own , have you tried any of those over the counter products? Fortunately ? when my hair grew back after frontline it had turned grey. Oh, and very very thick and curly - with the texture of horsehair🤭. It looks best kept short so I have hacked it with some sharp scissors and it looks ok - ish - to the untrained eye .....at a distance! 😂
Not worried about the cut - mine's just about shoulder length, and I hacked an inch or so off myself about 5 weeks ago, and will be doing it again shortly, though its quite difficult to do the back; mistakes notice because my hair's dead straight, but I don't suppose anyone looks much anyway! As for colour, pretty sure i was told no hair colour till after chemo, so lockdown or no lockdown, I still can't have it coloured. MIght risk having a go at trying to put half a dozen lighter streaks in, got the product, but chemo nurse says no to even that... I don't really get it, because doing streaks means it doesn't contact your skin at all, just the hair...
Great your hair grew back thick - mine's just getting thinner (thin enough already) but I'm only on carboplatin, so not expecting to lose it all. If I did I could wear a wig at least, though I'm guessing they're hot at this time of year...
Hiya, I am so glad you are 5 years post chemo- your outcome gives hope and inspiration . My first chemo was during the winter months so maybe that’s why I wasn’t warned. As I’m shielding my only outings now are for a blood test one day and chemo the next but I shall be rocking that ‘someone famous ‘ look with my tortoiseshell over glasses when they arrive from amazon!
Keep on keeping well. 🙂
Jan.x
Strangely I did have a migraine after cycle 1, but nothing since (I had my 4th today. After the first dose they opted to give me Paracetamol and Lorazepam right at the start of treatment each time and I’ve been fine xx
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