Well done Phil,
If you’ve started chemo you will already know some of the bad feelings and effects, so I’ll tell you a couple things I learned:
Always take a note book to any appointment, write down any instructions on pills and medical terms. You must take anti-sickness pills (like ondenestron or Cyclizine Hydrochloride) in good time before chemo or they don’t work. Other pills ( like Dexamethasone ) should be taken by 4:00 in the afternoon or you won’t get a good night’s sleep so make sure you write down all about the drugs and always ask about them.
When every drink tastes like mud, Ribena and Coke/Pepsi still tase reasonably normal and on any occasion when food won’t stay down or you feel sick but need a snack, Coke and Ginger biscuits taken gently will get you through.
Chemo gets rid of all those annoying skin blemishes like skin tags, but they will come back in a year or so. Most important is that you will get over chemo and it won’t affect the rest of your life so once you finish the course its all good in that respect - unlike radiography which is permanently destructive.
Watch out for really cold weather and snow. without nasal hair its hard to breath and without eyelashes, snow flakes are really annoying. so always wrap up well when its cold.
So enjoy every good day and just keep your mind on getting through one day at a time and one glorious day you wont need any more cannulas, unless you are good for Herceptin…
you can do this, and this time next year life will be good!
Thanks Ian, good tip about the 4pm thing, I have found myself waking at about 5am recently. Interesting about the skin-tags, I tend to get lots of them. I will have to have radiation but I’m not quite sure about its long-term implications, I know you get a big bit of discoloured skin but I can live with that, what else am I missing? Oh and I’m on Herceptin, at least for now, BP’s in the sky so you never know.
I’m ever so glad for you putting your hand up, I’ve found it hard to accept how fed-up I have been with all this because I just keep feeling others deserve to ‘moan’ more than myself - I’m loved, great job who are being ace about all this time off, family’s great, no body-image/hair issues - just don’t feel like I should complain but that doesn’t stop the worries. So great to know that someone else in the same situation came out the other side, I’m determined to use this as an excuse to fix the work/life thing and drop a few pounds etc. So it’s really nice of you to reply 
Phil,
The whole treatment of cancer is a blancing act destroying cancer cells versus colateral damage. Chemo is fascinating really becuase you are taking poison in controlled doses working on the basis that cancer cells are fast growing cells, so the poison targets all fast growing cells - like hair follicles and you will be able to tell how many chemo doses you have had by the ridges on thumb and big toe nails, where growth is temporarily stopped by the poison. Of course you need to accept that it is simply colateral damage of killing any wayward cancer cells before they grow anywhere else.
Radiotherapy feels quite good, it is like spending a long day at the seaside and then being really tired in the evening. But where Chemo is temporary, anything subjected to rads is permanently atrophied - my wife has no working saliva glands and I have very poor lymphatic drainage of my left arm, which at best is a nuisance and at worst is annoying enough to make me consider self harm. radiotherapy is damaging and irreversable, so you want a complete buy-in from consultants, oncologists and radiotherapists over area covered and amounts given.
So why have it? Chemo doesn’t necessarily kill all cancer cells and if any cancer has been accidentally spread locally during surgery, or if the surgeon missed an affected lymph node, the radiotherapy is the final mopping up operation of frying cells until they no longer work and can’t hide or support a cancer cell. The danger of not having it is that cancers may develop in unwanted places like bones or organs which is the dreaded secondary cancer.
I have always had a full beard, if nothing else it hides my face a bit. When you have radiotherapy they use what I assume are lead shapes to mask areas like your jaw bone from the destructive rays. Every one of my oncologits and radotherapy staff were female so probably regard facial hair loss as a bonus but because they don’t even think about beards, they didn’t mask my complete chin area and I have an unnecessary triangle of very thin hair among the otherwise full beard re-growth. It may seem trivial to some but to me it is a big thing, I can live with covering up my 1/4 hairless and scarred chest but my beard is part of my visible personality.
So always take notes, always ask questions and remind female medical staff that men have needs too. We are all looking for the best outcome, but we also want best quality of life too.
best regards,
Ian
Thank you for the extra details, a lot of that was quite new to me, I have no issues with how it affects my looks in any way - but the lymphatic damage sounds…odd I guess, must do some more reading about that as just the full node removal seems to have little impact on me (so far - wasn’t done too long ago). That said I live down in Dorset and we sometimes get mosquitoes so I’m going to have to avoid them forever.
The truth is that in some ways I needed a kick up the arse for the last couple of years, I’d just got too content in some ways - although I’ve had many, many dark thoughts about the cancer ‘taking’ me it had galvanised my mind about how things will be IF I get through. My (nearly 17yo) son has been a great help but he’s something of a done-deal in terms of personality, me popping my clogs wouldn’t change him too much I don’t think, but my 13yo daughter isn’t there yet and I want to be around so that she can finish becoming who she’s going to be without this millstone around her neck. My wife’s mother died of breast cancer when she was only 17 and I’m not sure she ever dealt with it well, so if I can hang about a few years I’ll be happy that she’ll be who she always was going to be. May even sneak in a few extra holidays in there with my wife sometime too
Thanks once again, in some ways just having you to talk with has been the best thing I’ve done on this site - thank you.
Hi Phil,
I hope this is a good day for you. What I meant about RT damage is that you need working lymph gland AND working skin because the fluid being drained is just below the surface. I don’t know if you felt as if your shoulder socket was “heavy” after surgery but that is how mine feels for most of the time. Strangely I also have the feeling of pressure under my shoulderblade so my hypothesis is that with fried skin and lymph nodeson my front, maybe my arm can only drain accross my back to the other side of my neck or even the other shoulder?
Anyway the reality is that I have a permanently warm armpit and less space in the sleeve of all clothing - especially suits and motorcycle gear. When I walk, I put that hand in my pocket to stop me swinging my arm, or it gets hot and sore in no time at all. So when you combine that with a chest scar stuck to my chest instead of a nice moving breast and nerve damage in upper, inner arm from the mastectomy, my new “normal” isn’t all its sometimes cracked up to be and on a bad day I could cheerfully hit someone who says “but you’re all right now though?”
My daughter was 13 and my sons were 20. 22 and 24 when mine all started so I know how you feel about family futures, but 5 years later I have a lovely family, fantastic wife and life is good. If you see any statistics on male longevity after BC, don’t take too much notice as most men are over 70 when diagnosed and usually have other life threatening problems to contend with while you are in your prime and a good candidate for old age.
Your treatment is very tough on your wife and children, so try and avoid stress. My wife (teetotal non-smoker) had tongue cancer surgery in March 2007, I had BC surgery in September 2007 and my wife had neck surgery, chemo and RT in early 2009, so I know how hard it is to see your partner suffering and feel utterly helpless. It did however make us a closer family. It is much easier being a patient than a carer so be kind…
If you have any specific questions fire away, but remember that we are all different.
best regards
I had my mastectomy last Thursday, it did not go as we’ll as hoped. I was told that all went well but it did not.
Two hours back on the ward I started to swell up above the right breast and under the right arm it ballooned out and was a deep red colour a Doctor was called and said that it could be Bleeding in wound the wound area.
So i was nil by mouth again and found myself in the Theatre early next morning after three hours later back in my bed and still sleepy I was told that when they opened me up again and after a clean up they found three places which were bleeding, these were sorted out and all was well.
I am now black and blue from my shoulder to my backside and told it would recede in a few months time.
I am back at home very tired and been spoiled by my dear wife May.
Next appointment at the Breast clinic 29th November with results and treatment required.
Best wishes to you all, Derek (now renamed Tinger)
Sorry to hear about that Derek, did they do a sentintel or full lymph node removal at the same time? My mastectomy went ok, well better than yours seemingly, but they did have to go in for all my nodes a fortnight after (and at >1day notice). That was more complex, had a drain tube sat on a nerve so I was glad when that came out.
Wives are brilliant aren’t they, I’m sure I’d do a far worse job for her than she’s doing for me right now - don’t know where she gets the patience.
Good luck and let me know if you want or need a chat ok.
Hugs,
Phil.
Hi Tinger,
You struck unlucky with the post-op bleeding, I’m surprised you weren’t filling up drain bottles with blood but maybe you didn’t have any? I had 2 drains in and wasn’t going to be freed from the hospital until draining had finished, so having the op on a Thursday and draining on Friday I remember it being touch and go whether I escaped before the weekend “shut down”.
Make sure you do the arm exercises to avoid “cording” and the more active you can be with your arm and chest, the less problems of stiffness you will have later. You probably don’t feel like it right now but it really is worth the effort.
very best wishes
Thanks for your good wishes,as you will know I still feel very tired,you can’t sleep well in hospital,especially over four nights.
I have one J PAC drain in place producing 50 ml per day so not to bad. Thanks for your advice re the arm exercises whiich I will do As you advise.
Kindest regards. 
Nothing specific to add, other than how glad I am that the three of you have found other blokes to talk to. And Phil, don’t you DARE feel as if your cancer is any less worthy of people being bothered. It ALL sucks, and there isn’t any competition on here about who’s got off easier or not.
And thank you also for being kind to your partners. As clunkshift says, it’s really tough on them too.
CM
x
Can I add something to what clunkshift said? He said that chemo has no lasting effects whereas radiotherapy does. I think this just underlines again that the experience is different for everyone, and that you can’t predict in advance how any one individual will respond.
I have had no ill effects whatsoever from radiotherapy, but over five years on am still dealing with the chemo after effects. My memory is poor, at work I am constantly writing myself notes, and at home the kids are used to me remembering nothing. I have lost a lot of the sharpness that I had previously, I could work things out quickly before, I had always been bright, but now I often feel that my brain is in a sort of fog. When someone tells me something at work I often have to go away and process it to fully understand it whereas I would have been completely on the ball before. I also have problems with words (a documented chemo side effect -nlm.nih.gov/medlineplus/news/fullstory_129042.html). This article refers to a difficulty in choosing words - I would describe it differently, it is a difficulty in accessing words. A bit like when something is on the tip of your tongue - you know there is a specific word you are trying to get at, even have an abstract impression of it in your head, but somehow can’t access it.
Sorry, I’m not trying to put a downer on anything, not moaning, but just saying that you never know how you will be affected long term, if at all. We are all different.
Hi Roadrunner,
Thank you for your input about the effects of Chemotherapy, I think we are all too aware of which long-term problems affect our lives the most and in a general euphoria of just having survived, we tend to overlook those which affect our daily lives least.
I also suffer from “chemo brain” over words. I proof read English translations for a Polish friend and I know exactly what you mean about words being just out of reach. I often have to use a thesaurus to pin down the missing word, which of course you cannot do in normal conversation and similarly, at work I sometimes cannot quite remember a technical word that I have known for over 30 years.
So as not to hijack this thread, would you be willing to join a thread on men’s experiences? When I was first diagnosed I couldn’t find any other men to speak to and I think it would be a good resource or reference for our fellow sufferers.
There are other issues too aren’t there? Those things we can’t discuss with women like libido, or lack of, and what the effects of taking hormonal drugs for 5 years may be – after all, up to the 1960’s the treatment for men included castration so are we simply having a chemical version or is it just the general effects of ageing?
Just like women sufferers, we have issues of confidence, self-esteem and general “wellness” as well as the direct effects of cancer treatment I am still finding it hard to adapt to the new “normality”.
If you guys will join in, I’ll start a new thread and maybe other survivors will add their experiences; tell me what you think.
Hi Clunkshift,
I am sorry but I think I am guilty of misleading you. I am not a man. I tend to read any posts that interest me, regardless of which section they are posted in, and then reply if I think I have anything useful to add. I did that here without making it clear who I am. Sorry
I am a little worried about my J vac drain it has been in for 8 days now, and it has only reduced from 60ml to 40ml a day and it has been 40 ml for the last 4 days.
Bearing in mind I had to go back to the theatre to have some bleeders sealed inside where the breast was removed,you can see why I am a little worried.
When I rang the ward this morning with my 24 hour reading I asked the sister about my concern she said don’t worry about it as it will be ok.
Best wishes to you all.
Tinger,
I understand your concern but “long term drains” is something outside my own experience. I re-checked my notes and mine were in for just under 4 days.
I do wonder if the body takes advantage of a cavity to drain into anyway but all I can say is that as long as you are draining fluid rather than blood, its probably a good thing; when I was alll sewn up I had a really thick feeling all round my shoulder joint which I was told was fluid so You should just trust them but keep reminding them of your current state.
very best regards.
Clunkshift,
Thank you very much for your input,when I phoned the ward to give them my reading I spoke to the ward sister she asked about the color and said if it was slightly pint then there is nothing to worry about.
They only take it out when it is below 25 ml.
I shall be happier next week (the 29th) when I know the results and the treatment required.
Best wishes to you.
Tinger, there are several ladies on here who had drains in for a couple of weeks. I think it very much depends on your surgeon and how they like to do things. Some surgeons won’t leave them in more than a few days, others are more flexible. And you don’t want to end up with a seroma (fluid collecting inside you) as that can be very uncomfortable.
Clunkshift, if you felt comfortable doing so, you could share discussions about libido with us, and we would only empathise, not criticise. It’s something nobody knows about before going through cancer treatment. Even if you completely ignore the worries about body image and the exhaustion, there are physical side-effects of the treatment that can affect sex for both men and women. Women may suffer vaginal dryness or atrophy, reduction of lack of sensation so reduction in orgasm, either intensity or getting there at all. Men can get the male equivalent of those side-effects, and it can be really, really difficult to discuss them with non-cancer-sufferers when you get the response “you should just be glad you’re alive.” That’s NOT a helpful response, although I’m sure very many of us have heard that particular phrase.
Problem is, I don’t think any of us have found a good solution to the problems, other than keeping up the practice (“use it or lose it” being a mantra). So gentle perserverance and sympathetic treatment from your partner is probably the best medicine.
Doesn’t this cancer stuff just SUCK!
CM
x
Stick with it Tinger, as I unfortunately have a cautionary tale about un-drained liquied.
Just after my chemo was finished I was looking forward to getting the RT over with and putting it all behind me (keep a naive thought with you at all times, it helps with optimism) but betwwen an initial planning session and my first zapping session the centre of my wound scar ballooned into an impressive abscess which required surgical draining.
This of course delayed the RT for about 6 weeks while I went around with a packed, open wound. the consultant did say that a possible cause was fluid remaining under the scar, which is why they left my wound open but packed it to “dry out” while it healed up.
So if your drain fluid is just straw colour with a pink tinge, it’s well worth being rid of it in the long run.
ChoccieMuffin,
The whole hormonal thing is so hard to quantify and My wife and I are definitely atypical of the physical side. She had major tongue surgery (1/2 removed & rebuilt) and RT after throat surgery and now has no saliva and is incapable of kissing, which kind of puts a damper on “getting in the mood”. That coupled with menopausal dryness on her part and hormonal treatment and possible dysfunction on my part means that “practice” is a 5 year-old memory and becoming more distant. The difficulty would be separating any age related failure (54/58) from lasting effects of treatment.
So to Phil and Tinger I can only advise that you keep good notes and try and identify changes as you go - and keep practicing when you can.
very best wishes
Quick for for you boys, in case you want to join in with some seasonal craziness - if you wander round the forums there are all sorts of threads, and some of them are quite bonkers and good for a giggle.
Anyhow, I mentioned you three here in your own corner, and thought I’d give you directions to Benchland, and invite you to auditions for our virtual Christma Panto. It’s all very very silly, but might make you smile.
This thread is very long and has been going for over a year. It started off as a place for the f*****g furious bench, where we can sit when we’re really, really cross about something, and kind of grew and grew like topsy until it’s a whole virtual land filled with all sorts of benches - CBA bench, knackered bench, and the guilt lake were we throw all our guilt into the alligators who live there. Very silly, complete nonsense, but you might feel inclined to join in. (Mention you’re a boy and you’ll definitely get a part in the panto!)
http://www.breastcancercare.org.uk/community/forums/stop-feeling-guilty-small-rant-benchland?page=96 from post 2899 by grumpy is a good place to pick up from, with grumpy’s crazy plot for the panto, and then it degenerates from there…
Clunkship,
Thank you for more input,I got a phone call yesterday to come in and have the drain removed. I must say it is now more comfortable without it.
Now my May and I are waiting for the 29th when I go back for the results and for the treatment plan, we are hoping for the best news.
Kindest regards.
I