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maggie aitken
Member
since
19-04-2017
31
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5
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18-01-2018
05:13
it exists. dont take any more of this nonsense, hope you have been able to move on since this post! x
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18-01-2018
05:12
well, what a world of fun we live in! Since last post, I have run out of excuses for pain - shoulders, arms and hands are sore, sometimes extremely so, and despite a couple of attempts at treatment via GP, it is not easy to get a decent sleep... so off to the surgeon on friday next. But I had to arrange it myself to get that, on the advice of my highly qualified sis, who is an experiencd medical pro. Dont muck about, go to your specialist, she aid, and so I did. Why isnt there a recognised pathway? I agree that there ought to be openness and honesty about side effects, because how else can we progress? Cancer treatment ought to be a partnership between treatment providers and ourselves, and there ought to be mutual respect. This doesnt mean that recognition of negative issues will make it harder to deal with everyday life - but the feeling of not being an equal and open partner could easily do so. Take note, edical professionals! Anyway I will report back with progress and send every single bit of love and best wishes to you all... one thing to try, oddly enough, might be Vicks direct on the sore bits. Anything is worth a try - though the antihistamines didnt do much!
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19-12-2017
09:18
1 Hug
hello Pam, and like you I am well into the herceptin treatment every three weeks and finding the side effects hard to live with - I am trying out anthistamines, more to find any relief, and will see my GP today .. at the hospital it is about the therapy and anything regarded as serious not about acute discomfort, but I have not had a decent sleep for ages and am taking too many paunkillers which dont work anyway... I am sorry that others are experiencing the same thing and will keep you posted!
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09-11-2017
10:44
I am now on herceptin, every three weeks by injection, and of course, compared to chemo and radiation it is a doddle .. but I agree, it does tire you out, and I am also experiencing quite worrying dizziness and tiredness, enough to make me go for a blood pressure checkup today. I am very aware of my poor old body having been under a serious lot of battering from treatment, and feel that, ap present, I am recovering from the cumulative effects of treatment plus the impact of herceptin - and that's a lot, when you think about it. Good luck to anyone in a similar situation, onwards and upwards! (or sideways, maybe!)
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13-08-2017
06:43
Hi, thanks for that at the end of week one nd 12 sessions to go, have developed a lump -very near the surgical scar but it's not fluid, so it's been checked and we will have the oncologist take a look, but other than that and realising that all of this scary technology is benevolent and the end result of a lot of work by good people, it's OK. Of course compared to Chemo, it's a doddle : I have what's called a frozen shoulder so the main practicality - and I hope the only one! - is getting arms into position for the zap. Ow! Here in Scotland treatment is via the Beatson Charity, who also supply a load of complimentary therapies, and we have a holistic centre called Maggie's (no relation) which is about support, therapies and a gentle caring atmosphere, right next door. I really do send all possible best wishes to everyone going on this journey, may your experience be positive and outcome successful x
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30-07-2017
03:57
starting on august 7th, look forward to hearing how everyone gets on! Best wishes, as ever ..
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30-07-2017
03:54
You dont have your troubles to seek, and all of our best thoughts and wishes are with yu and family : on the chemo front, I've just had my fourth and find that it is almost 'nomalising' (but not quite of course, as this is such a unique life situation to be in) - like you round 3 seemed a faster recovery but it turned out that the white cell level meant delay of a week til round 4, and so I am being (this is day 14, we would expect to be knackered!) extrordinarily (neurotically? probably!) careful about healthy diet, bacteria, cleanliness, infection etc - all of whih is a complete pain for anyone remotely associated with me, but with any luck, for the last time... radiotherapy starts on 7th, but the locale is a Beatson (which in Scotland are the delivery organisation for radiation and a lot of cancer treatments) where I have taken advantage of somecoomplementary therapy sessions, and ajacent is a 'Maggie's Centre' where relaxatation, meditation, counselling and companionship are to be had, so that will really help a lot. I dont know what the therapies are, but, hey, who cares ... So, short answer is that by round 4, you know what to expect but having come this far, extreme care is needed as effects are cumulative and, as life doesnt stand still, we want to be in a position to get on with the lives of ourselves and families. For you, with worries about your little one, that means being good to yourself and, right now, including the prioritising your own wellbeing. I know that's not easy with a sick child, but we want a healthy you and daughter! I feel sure you will look back at this as a diffcult time in your life, but one where, having come shining through such a rotten time, certainly a very steep learning curve, you got through with renewed commitment and priorities, towards a happy, healthy future for you all. Everything passes, especially the hard times, they just seem to take longer ... all very best of best wishes, x
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17-07-2017
11:36
dont know about amazon, but instead of a pencil I have a wee powder eyeshadow (brown) with brush which works really well, you can be as defined or otherwise, easy to apply, and if you overdo it, removal much easier!and as I see that my hair regrowth is going to be absolutely white, which will be lovely, I may invest in a grey powder shadow.
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17-07-2017
11:31
mine was a bit one sided, not a joint planning more of a technological occaision: was CAT scanned and had tattoo marks made to demonstrate precise position for treatment.. all done in less than 10 minutes, and I am told that actual appointments, inclusive of getting changed and dressed again, are 12 minutes!
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29-06-2017
03:15
My chemo regime, AC, is noted for irritating the bladder, and as side effects get stronger as treatment progresses I suppose it was a matter of time before irritation began to be an issue. Especially for a more than ample 64 year old! From a minor issue, requiring care and cleanliness, to the start of what could have been nasty, took place really quickly - overnight in fact. Warm damp weather wont help I suppose. But - drinking cranberry juice, though it is sugary, really does neutralise acidic fluids, removing one of the causes, and it acts fast too. Then, in conversation with Boots pharmacists for confirmation of what I know already, nothing like plain yoghurt, liberally and often applied, to reduce inflammation and heat. Savlon or similar antiseptic prevents any infection setting in, and the seriously scary issue of broken skin in such a singular area has been avoided. Now, today, we have avoided infection, thank heavens - clean underwear every time, clean cotton, minimal soap in laundry and dried outside if possible, same for towels, lose the panty liners (to encourage airflow), lots to drink and close watching. Better than even more antibiotics and even more side effects, and embarassing examinations. But still, take a sample to Doc , just to be safe.
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15-06-2017
06:48
I am so very sorry, especially as you feel so alone - which is different from being on your own. Round 3 of 4 comes up for me on Monday and I must say I am not looking forward to it one bit .. there's no doubt that it is awful, and nobody in their right mind would do this unless they had to. I know that worse things happen, but because there's not a lot of choice, there cannot be consent - and that's a big thing for us as reasonable human beings. Plus the after effects - well there's a scary list and nobody can definitively say what you will experience. Well, nody actually knows though a good guess is usually possible. No wonder you are terrified - that's the logical response. I know I am. But having others around doesnt really help. Even with company you are on your own with this. But you are ging to be fine - not at once, not for a while probably, but you are going to be fine. You can do this. And, in terms of after and side effects, talk to friends, online forums, macmillan's talk line (free) which is really good. Tell people how you are feeling. Dont wait - get this out into the open and you will get past it and reclaim your life. In practical terms, better safe than sorry, nobody will disrespect you for being careful. Have the emergency plan ready to go, if needed. This is serious stuff, we dont take chances or let anxiety dictate what we do. But, take a good book, you may well be hanging about for ages, I know I was.You dont have to be brave for anyone. I am certainly not. Be good to yourself, respect yuur feelings because they are yours, and because there is a reason for them. If anxiety is damaging you, please please talk to someone. The MacMillan line is free and they are marvellous. They can also find sources of support, I have used these and been able to move forward. Fear is the killer. You have Cancer to deal with - the worst has already taken place. This is the fightback, even though you are not in control. But the treatment and care reflect the value placed on you. You matter. Soon, next year maybe, you will sit in the sunshine and reflect on a fight well fought, and a victory achieved despite it all. Promise. I send best wishes, and respect for an independant and brave individual. Let's do this. Maggie x
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07-06-2017
06:14
and talk to your sis. If she thinks you are kiding things from her, life will be much harder for her to deal with than facing difficult news together x (and that's enough grannying from me for one day)
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07-06-2017
06:13
W : I hope you dont mind me shoving in here, I just so felt for you ... i think it is difficult moving from our comfort zones into this medical zone, which is so strange and alien and everyone chatters away as if you know what things mean. It is difficult at this time, but if you have a question - ask them. You can look at Google all you like, but a straightforward chat is the most effective way and I hope they will be able to reassure you a bit - clearly the lack of definitive information leaves too much room for doubt, and that for us in this situation is really deadly. On the other hand, quite often we dont get information because either they cant be sure, as everyone is different, or possibly it is something - usually about side effects - that we dont want to know and, understandably enough, they do shrink from our reactions! All this resolute cheeriness can be wearing. I think we ought all to be as straightforward as possible - in my first round I took an absolutely psychotic steroid reaction resulting in a change of chemo treatment, but much harder on me (though not merrily belting round aldi spending a fortune on rubbish).. but at least I know why. You dont, and you ought to. And I feel sure, you are the kind of gal to go and find out - meanwhile all hugs and best wishes, I feel so much for you younger women (I am older and tougher, though fragile as hell of course): wish I could take on some of your worries.
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06-06-2017
01:40
my daughter has lupus so we are quite sun aware, but it appears that anything above a factor 30 actually blocks the healy effect you get from sunlight too... you live and learn!
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06-06-2017
01:38
there is the option of a collection of fabulous hats, from the internet and quite cheap, two arrived today - a velvet paddington cloche and a lovely grey with crochet flowers. Also have indoor hats and caps and scarves. Not usually one of make light of difficulties, as a right old grouch recently, sometimes we need to be the best of what we are at any given time. For me, that's the hat!
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06-06-2017
01:36
i found a swelled up quite badly, a shame because i love the sun and the garden...
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06-06-2017
01:36
late reply and hope you are much better now, but .. I made up a mouthwash gargle of bicarb and lemon juice, as it has some anti bacterial .properties, and I have also been using it is an air freshener - just a tiny amount of bicarb (as it will show is wee white things around the room) distilled water from the kettle, proprietory lemon juice. Or fresh if you are either organised or posh, nt like me! Threantened mouth and throat issues have not deveoped, though I bet they do now, but hope this helps .. poor you
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06-06-2017
01:32
I looked up foods that help in producing white blood cells, and came up with a list of colourful, healthy fruits and veg - it is from the USA so some of hese are not familiar, but they are not keen on meat, on household products containing parabens (such as aerosols or home smellies) and generally if a veg or friot has a vital colour and is fresh, it is gd for you! It does work, food being one way you can sort yurself to a degree, and control, which is also quite important, and the idea of being healthy in every other way - especially once this is over - matters a lot to me. I also make soups, eat portions of fruit and smoothies, and look to have balanced carbs from oats, rice etc. Good luck, all best wishes
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29-05-2017
04:35
I suspect that being the support system is probably even harder than being the person affected by cancer, and so I thought to post a thread to say a hige thank you to all of you engaged in this effort - I see what it costs my daughters and son, and I know it will be the same for many of you. It's a process, and if we can be open and honest we will progress, and maybe come out the other end stronger. But we did no choose this, we did not give consent, so I would say that if you are having a tough time emotionally, practically or feeling annoyance, guilt etc (all the things that can realy do damage) - Friends will support you just as much as you are giving suppport to your loved one. And they will be glad to help rather than feeling helpless on the sidelines. And as for us, well, if we can stand the impact of treatment, we must be a tough old bunch ... dont be scared, if you are honest with us that means we can be honest with you. And that is quite something! Well done, each and every one of you, it might not always feel that way but you clearly are getting it right. and - thank you x
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