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I can't be the only one?

83 REPLIES 83
clunkshift
Member

Re: I can't be the only one?

Well done Lads,
BC is never over but you can adapt to the "new normal" and continue with most things that you enjoy.
NOw to get my clove on and go and play in the workshop...

best wishes to all.

Tinger
Member

Re: I can't be the only one?

Hi Phil BM
I am very pleased for you that you have completed the worst of you treatment, best of luck to you for the future.
I had my final Chemo last Friday, and so far I feel quite well, I already have my appointment for my CT scan and for planning my Rads, it next Tuesday, I am pleased that it is so soon.
Like you I shall be pleased when it is all over.
I wish you all the best of luck, Bless you all.
MarthasSOS
Member

Re: I can't be the only one?

Congrats on completed your treatment Phil - I wish you all the very best for your future xx
PhilBM
Member

Re: I can't be the only one?

Finished my primary BC treatment today with my last radiotherapy - so bar some more herceptin, a load of scans and starting tamoxifen I'm done. Been quite the struggle, mostly with the chemo, but I never thought I'd see today so I'm more than glad it's finally hear. I'll never be exactly the same person I was but in a strange way I feel stronger for what I've been through.
Good luck everyone.
Tinger
Member

Re: I can't be the only one?

Hi Westside sue,Clunkshift and all,
Just to let you know I have done very well after my 5th chemo (2nd T ) my Oncologist prescribed two lots of mouthwash Benzydamine andChlorhexidine Digluconate, they were a great help and cleared up the mouth ullcers within a week which helped me with eating etc.
I will be having my last chemo session this Friday like everyone I shall be pleased that it is all over, we'll the chemo anyway, then I have the rads later to look forward to.
Best wishes to you all, keep smiling and be as happy as you can be,with a bit of luck the Summer will soon be with us.
WestsideSue
Member

Re: I can't be the only one?

Gutted - just an aside - you mentioned work problems. You are protected by the Disability Discrimination Act immediately upon dx of cancer. If you are having work related problems, do pop along to your local CAB for advice.
Tinger - taxotere is hell. I ended up on oromorph to survive it. The taste thing is cured, rather bizarrely, by eating a chunk of pineapple before food. Got to say, I now hate pineapple, but it did work!
All the best to you all x

clunkshift
Member

Re: I can't be the only one?

Gutted,
No-one wants to go though all this anxiety and pain, so I find it best to be frank with everyone. The thing to remember is that cancer is never "over", "cured" or "finished".

I recently went to the doctor with a suspected lump in my remaining breast, he didn't have the benefit of another breast to compare it with and referred me to the consultant.
The consultant agreed that it merited investigation even though it was not the same as my original lump. they did an ultrasound scan and found nothing, so we (note joint decision of consultant and patient) agreed to wait 3 months and see if it changes.
So I could have 3 months of worry, but after all I've been through I have learned only to worry about what has been found rather than what might happen.

Your concerns are very real, as is your right to be received and examined as a potential BC patient.
I tell my employer everything, then they have no excuse for not being sympathetic. I don't expect understanding or sympathy but I do expect respect and acknowledgement of my genuine needs.

Anyone who can dismiss cancer or belittle its effects and needs is little better than pond life. Your health and family are paramount, everything, and I mean everything else is of far less importance. This is hard on your wife and children, so don't make it any worse for them - be open and honest and get through it all together our family is much closer through my wife and myself getting through cancer treatment and our outlook on life is better too.

with best wishes for negative results,
Clunk

gutted
Member

Re: I can't be the only one?

I guess I am just being too sensitive, obviously, I am not as hard done by as so many others, I clearly have no right to feel embarassed or uncomfortable, what is ok for some must be ok for all. I should jusy shut up and accept how lucky i am.
clunkshift
Member

Re: I can't be the only one?

Tinger,
I'm so pleased that the second taxo wasn't so bad for you. It almost seems as if you strat getting used to FEC and then the change to Taxo is really hard but i can't really say why it seemed so tough.
Anyway, you only have one more to go and then in about mid June you will start to enjoy the tastes of summer.
Taste will come back, but not as quickly as you might hope.
beware of the cumulative effects of radiotherapy, after the first couple you think that there is nothing to it, but as it accumulates you get that feeling of weariness like you've had a long day at the beach and have a touch of sunstroke.
Again, it doesn't last but don't plan to do anything special like holidays or family functions during that time as it becomes very tiring.
best wished for the final stabbing session,
Clunk.

Tinger
Member

Re: I can't be the only one?

Hi Gutted
As Clunkshift has said please don't be embarrassed about BC, I was diagnosed last November I had my right breast removed and I am now on my fifth Chemo out of six.
I had Prostate cancer six years age and I was lucky all tha cancer was in the gland so I had a radical prostatectomy, I got over that ok.
I have never been embarrassed over my BC I have always been happy with my treatment and I have always been treated with the utmost respect by all the Doctors and nurses etc
Please have a positive attitude about your illness and things will get better.
Best wishes to you, keep us informed.
PS Clunkshift I had my second T last Wednesday and I am getting on fine. Much better than number four, my last t is on the 26th of April,
clunkshift
Member

Re: I can't be the only one?

Gutted,
I wouldn't bother about being embarrased by breast cancer, men have breasts too, or in my case one breast and a scar.
I'm not familiar with the treatment for Prostate that you mention but BC usually involves surgery, chemotherapy and radiotherapy. The Surgery will leave you lop-sided in the chest and prone to lymphoedema in the adjacent arm for the rest of your life, Chemo makes you feel awful and is a great hair remover while radiotherapy fries flesh and muscle and renders good giblets inoperative. When that is over you take hormone tablets for 5 years which has several side effects but mainly loss of libido, erectile dysfuntion and general impotency.
Sorry to be so brutally honest but I've been through all that and am still around to provide for my family, watch my children mature and enjoy life. I'm not embarrassed about breast cancer any more than I would be about prostate cancer as neither show when you wear clothes. My wife has had tongue and neck cancer and nothing disguises either of those, so not just no sex but we can't even kiss properly.
Feel free to rant, its good for the soul.
best wishes for good outcomes.

gutted
Member

Re: I can't be the only one?

I was recently treated by Brachytherapy for Prostate Cancer. I am still having problems on that score. While attending a Dermatology clinic on March 21st I queried a lump in my left breast. The dermatologist seemed very worried by it. he immediately referred me to a Breast surgeon. I am due to see im next Wednesday. I was told not to worry about my prostate problems for about a year before they eventually agreed (at my pressuring them) to do a biopsy. The biopsy team were hostile and treated me as though I was a timewaster. The result however was positive. I am thus quite worried about how seriously the latest scare is being taken, until i pushed and asked to see the internal referral letter they were reluctant to admit that the referral had in fact been marked as urgent and my appointment was in 3 weeks time (7 weeks after i was referred). It has now been brought forward to next week, the first available slot. I have not discussed my prostate cancer with anyone other than my wife and only told my children when I had been treated. I am far too embarrased to discuss the possibility of breast cancer with anybody as it is seen as a female problem. My employers have been bullying me relentlessly since I was diagnosed with prostate cancer, lord knows how they will now react if i am confirmed as having breast cancer. I do not know where to turn!
Tinger
Member

Re: I can't be the only one?

Hi James,
I am thinking of you today, and I wish you well, I was diagnosed with BC in November last year I had a mastectomy in early December plus removal of some nodes which were positive from my left underarm.
I started my treatment regime on Jan the 4th it was 3 FEC + 3 T Chemotherapy. I had my 5th chemo last week and my last will be on the 26th of April.
I will have a few weeks off and then start 20 sessions of Radiotherapy 5 a week for 4 weeks.
Juat one thing James just think positive, and for sure you will come through this problem with flying colors .
Best wishes to you, let us all know how you are getting on.
James__M
Member

Re: I can't be the only one?

Hi, I'm having a Mastectomy & Sintinel Lymph node op. on Monday. Naturally a bit anxious. Would welcome any feedback from anyone whose been through it .
Tinger
Member

Re: I can't be the only one?

Hi Clunkshift,
As you stated the Tax has been very very hard on me and my good Wife, i have nver felt so ill in all my life. Things are now getting better after 18 days since my first T.
I am now eating most things and putting on some weight, my main problem now is my stingy itchy eyes but i have got eye drops from the chemist and they are a lot better.
My next T is on the 3rd of April delayed from this Friday because of Easter, i am pleased really it gives me a few mor days to get stronger, dont worry i will get there. only one more to go after next week.
Thank you all for your good wishes, i would like to wish that you all have a nice Easter and then perhaps we will be getting some fine and warm weather
clunkshift
Member

Re: I can't be the only one?

Tinger,
Thats how I felt about Taxo but I deliberately didn't tell you That I found it hard.
I can sympathise with the weakness, Just walking from my car to the office door was only about 50 yards but it felt like a marathon.
As for taste, you've lost it but its only temporary, so just eat and drink whatever you feel like as long as it doesn't sting your mouth its ok - fish & chips (but no vinegar or sauce) is ok but no curry, its too spicy! I indulged my love of sausage rolls and pork pies...
However, you will feel better after a week or so and now you only have 2 more to go.
You can do this, and by the time we reach May, it will be all over and the weather will make you fel better too.
Stick with it, you're doing well.
very best wishes,
Clunk.

Tinger
Member

Re: I can't be the only one?

Hi sunshine Lilly ,Clunkshift libra lady.
Another update I had my first Taxotere on the 8th of March and I have been so ill spent the last 9 days in bed, I am so week my poor old legs are my main problem.
I have lost 12 pounds and my taste is so terrible I think that I may have turned the corner now at least I hope so.
The three FEC were fine but the T was terrible.
Best wishes to you all.
Tinger.
Tinger
Member

Re: I can't be the only one?

Sunshine,
you have done so well so far please just get on with the rest of your chemo,and forget the rads for now.
I will be thinking of you on Friday when I start no 4 of six ie 1st tax.
Good luck.
Tinger.
sunshine_lilly
Member

Re: I can't be the only one?

hi all, just been reading, best wishes tinger, and ladies,
im due my 5th chemo friday im on fec x6 and then 5week radio, although i should be relieved that my chemo will soon be over cant help but feel panic as scared what this one will bring, been really down mentely, they lowered one of chemo drugs last time, as bloods were low, and been having lot of side effects, but my 4th i havent been so bad phiscaly, havent had as much sickness, and sore mouth, eyes are lot worse, and iv got 2 small bloodf clots in chemo arm that become very painfull during and after chemo, also they are finding it hard to get bloods dreading tomoro, and friday.
how do i get through these last two chemos, without now worrying about radio therapy
xxx
Tinger
Member

Re: I can't be the only one?

Hi Libra lady and Clunkshift,
Thank you for your kind comments, my oncologist was happy for me to have the first tax on Friday, he said that I am a little anaemic , so I have to have an iron tablet every day.
I must say for some funny reason I felt much better at the Lincoln Oncology department it is such a lovely place and the staff are lovely. They really pep you up.
Thanks again for your input, I will let you know how I get on with the tax.
Best wishes to you all.
Ringer.
clunkshift
Member

Re: I can't be the only one?

Hi Tinger,
I'm sorry to hear that you are having a tough time, but as Libralady says, your "suitability" for treatment is really down to your blood test and the Oncologist. I only had a one week delay when my blood count wasn't good enough but you really don't want to delay anything as the treatment is accumulative (as you are experiencing) and you don't really want your "level of treatment" to fall until it is all over.
Taxotare is not better or worse than FEC, its just different. You certainly wont miss the Epirubicin (the viscious red one that makes you pee red afterwards) but Taxotare is tough in a different way.
On the food side, since you probably can't tell the difference between tea and coffee anyway, unless you are diabetic just go for anything you like the taste of - I was heavily into Pepsi and Ribena drinks and ginger biscuits - anything that tasted of something but didn't sting my mouth. As for food, jsut go for anything you fancy; its not junk food if you can eat it! You can go back to proper food and drink when you finish the chemo and can taste again
Just stick with it Tigger, you can do this and the benfits are huge.
Any time you feel down or rough - tell us and someone will sympathise because we all remember how bad we felt. Feel free to have a good rant now and again; but not at your wife or family as it is really tough for them too.
I hope test and meeting with Onc go well,
Spring is coming, it will be a good summer and you've got a life to pick up again in less than 3 months.
very best wishes,
Clunk

Libralady
Member

Re: I can't be the only one?

Hi Tinger
sorry to hear you arent feeling to bright at the moment. Let your Oncologist advise you as whether to delay the start of your Tax. I know when i was going through chemo I do recall a couple of people delaying as they felt awful. In any case your chemo would be delayed automatically by a few days if your neuts were low so its not unheard of.
I also had FEC x 4 and Tax x 4.
Just 9 weeks left Tinger....focus on that end date - it will soon be here. Its such a great feeling when the last chemo is done and dusted.

Lisa

Tinger
Member

Re: I can't be the only one?

Hi every body,
I thought it was about time I gave you you an update on my health and my treatment, I am now half way through my treatment ,
finnished 3 FEC and I am due to start my first of three taxotere On Friday.
First two FECs I had little problems did not loosely appetite and ate well. I have had a bad three weeks since last FEC,
i have lost my appetite and I feel so tired all the time, I am due a blood test in the morning and an appointment with my Oncologist.
i don't no weather to cancel this weeks T,I don't feel I am strong enough to have this first T, as I have lost 8 1lbs in the past three weeks.
What do you think ?
Best wishes to you all.
kellyd77
Member

Re: I can't be the only one?

Hi Phil, just to say no youre not the only one, but i know taht it seems like you are. My husband was diagnosed in April 2012 and had a mastectomy, they also took some nodes to see if it had spread, which unfortunately it had spread into some of the nodes so he had another operation to remove the nodes. That, thank god removed the cancer and he then had 6 treatments of chemo and is now taking tamoxifen for at least 5 years just to reduce the risks of it returning.
remembering how we felt right at the beginning of our journey, was scary, you just think, how can he get it hes a proper mans man!!! hes a scaffolder for gods sake, thats all i kept thinking, but he was so strong, as im sure you will be, i hope you have loads of support in place and just keep thinking positive
everyones experience of surgery and chemo and other treatments are all different, so dont think about how it affected other people, you are you and you will have whatever (if any) side effects that occur and you deal with them as they pop up
i really wish you all the best Phil, no one ever asks for this, but keep strong and there is light at the end of tunnel
all the best
kelly x
Tinger
Member

Re: I can't be the only one?

Hi Peter,
I had my first chemo,on the 5th of Jan, I was a bit rough for 5 or 6 days then since then I have been alright.
I got my appetite back and I am eating well.
I wish you all the best, it is not nice is it but you just have to look positive and get on with the treatment.
Good luck.
clunkshift
Member

Re: I can't be the only one?

Hi Peter K,
Welcome to the club that you never wanted to join.
As someone else said, it depends how physical your job is. The official line is that everyone is affected differently but you will suffer the effects of the surgery and chemo is controlled poisoning so that if you are on a 3 week cycle, you will feel quite battered for 3 - 5 days after a chemo session and then you will improve every day until just before your next treatment you might even feel quite good - then back to square one again.
I also felt that the chemo was accumulative as recovery was a little longer each subsequent time. But there are some unknowns about how sick you will feel in the first few days and how bad the drug side effects will be; any sort of steroid will rob you of sleep if taken too late in the day and other drugs mak make you feel somehow slightly removed from reality, but the unknown is how much and for how long.
After mastectomy, your upper arm on that side will have a sort of nettle-rash tingle and you'll probably have no feeling in your armpit. they will show you what arm exercises to do, so make sure you do them every day.

About being self-employed, in this I can sympathise. I am a self employed engineer and spend my day in front of a computer, so it's not exactly strenuous, but I found the mental detachment was hard for me.
I had Chemo on a Thursday, spent Friday & Saturday in bed, moved around a bit on Sunday and went to work on Monday. It was a 45 minute drive so I went early and didn't take my pills until I was safely at work to reduce the side effects. At work I shuffled along like a man of about 90 yrs old (I was 54) and it was tough to concentrate.
I would imagine that if I had a physical job like a plasterer, I would have neede to take on a lad to do the lifting and holding as you really would struggle with carrying and positioning a sheet of plasterboard certainly in the first week of the cycle.
On the other hand I was riding motorbikes in the 2nd and 3rd weeks when I felt like clearing my head a bit.

The only light at the end of the tunnel is that it is usually finished in about 21 weeks - about 4 months.
I hope that helps you to plan things.
Very best wishes
Clunk.

clunkshift
Member

Re: I can't be the only one?

Hi Tinger,
Indigestion will be a problem because the chemo kills off the friendly bacteria in your gut but the acids are still active, so acid reflux can be a problem. Make sure you drink lots to keep things well flushed and try to eat food that is easily digested.
My big fear used to be hiccoughs because once they started, they could carry on for over an hour and made everything sore.
Well done, it sounds like your using the tablets well.
Clunk.

Tinger
Member

Re: I can't be the only one?

Hi Clunk,
Just an update, I this is my best day this week am beginning to get back to my old self.
The worst problem has been the indigestion it kept awaits wake and it was bad when I tried to take in water, and I was not eating enough. Got some tablets so I am ok Now, best of all I have had no nausea .
Today my apatite is back and I have been fed well by my dear wife, it feels so lovely not been hungry all the time, it's the 8th day after first chemo and all is well with me.
Best wishes to all the new guys .
sdfmeg
Member

Re: I can't be the only one?

Perhaps you could spend more of your time on admin and looking for new business leads whilst you're doing the chemo, Peter, so you would still be doing enough hours to qualify for working tax credits? I think it's sixteen hours, but not sure. It might be worth contacting Macmillan or CAB for advice - or you could try the turn2us website if you wanted some sort of an idea before getting in touch with anyone. Should come up if you google.

chascat
Member

Re: I can't be the only one?

Hi Peter, it depends what you do for a living, I worked through chemo but am an administrator and work from home, I think if your job is physically demanding you may struggle. Might be worth contacting Macmillan to speak to a benefits advisor x

Louise_BCC
Member

Re: I can't be the only one?

Hi Peter

Firstly, welcome to the discussion forums, I'm sure you'll find them to be a supportive place for you.

Whilst you're waiting for others to share their experiences, I just thought I'd let you know about a couple of our services which you might find helpful.

Our Helpline are available to talk through any concerns or issues you might have, they're on 0808 800 6000, weekdays 9-5 and Saturday 10-2.

We also have an 'ask the nurse' service which is available by email. Here's the link to the information about both services:

http://www.breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions

Hope this is useful

Kind regards

Louise, Facilitator

peter_k
Member

Re: I can't be the only one?

Best of luck everybody..I got Diagnosed on the 8th jan this year....im worried about something..THE CHEMO...
Im self employed and its been a very bad last 3 years..Will Chemo stop me from working?..Its just i cant afford time off

Thanks for listening...
Tinger
Member

Re: I can't be the only one?

Clunk,
Thank you very much for your good wishes I have been lucky so far no sickness at all.
I am feeling tired today but I am in good spirits.
Kindest regards.
clunkshift
Member

Re: I can't be the only one?

Tinger,
I wrote a reply but somehow it was lost...
I am so pleased that your chemo went well, now just make sure that you have plenty of rest through the grotty bit and don't push yourself too hard - but keep up those arm exercises!
You made good time through the day and I hope that continues too.
keep us up to date and fire off sany questions to us.
very best regards,
Clunk

Tinger
Member

Re: I can't be the only one?

Well I am now a chemo man. I had my first FEC today, I was very apprehensive when I got to Oncology at ten am. I was called in at ten,ten by a very nice staff nurse.
She sat me down and put a hot bean bag on my hand and arm, gave me an Emend anti sickness tablet and explained in detail what the procedure would be.
I felt at ease after her chat, the Oncology suite at Lincoln County Hospital is very nice, the staff are so helpful,plenty of tea and biscuits and a sandwich for lunch.
All went well and my treatment was completed at two thirty.
It is just after nine i am writing this in bed and so far no ill effects apart from feeling very tired.
A very happy new year to you all.
Tinger
Member

Re: I can't be the only one?

Thank you for your good wishes,I hope you have a a good Christmas and best wishes for the new year.
The heart check yesterday went very well, no problems at all,on Friday I am having a CT scan on my chest abdomen,pelvis with Contrast ie some dye to drink and the scan 1hour later.
I will then be able to start the Chemo.
Seasons greetings to all at Breast cancer care.
clunkshift
Member

Re: I can't be the only one?

Have a really good Christmas Tinger and enjoy all the different tastes and flavours. Keep us up to speed on your progress and ask anything you like.

Tinger
Member

Re: I can't be the only one?

I must say that I was givin a stack of books to read when I was diagnosed with my breast cancer, they were all very helpfully to me.And I must say the were all Came from Breast cancer care.
Now my own update information I had my appointment with the oncologist yesterday who has agreed that I am to have 6 times FEC T & 4 weeks of rads. The chemo to start after Christmas.
Because of my age I will have to have an angiogram to check my heart ,prior to the start of my treatment. I was given more books on chemo,rads and tamoxifen.j
Mitch
Member

Re: I can't be the only one?

Hi Phil,
I had breast cancer 12 years ago and there used to be around 4 regular guys posting on this site, in both the mens' section and the regular sites. Recently all seems to have become quiet during the past 5 years.
Unfortunately men are not well-known for discussing their feelings, so the men's site is not well supported. Many of the postings are from women enquiring about the breast cancfer of men they know.
I hope you are able to get any information you want from the Breast Cancer Care booklets, but keep looking in at this site too.
David S

Tinger
Member

Re: I can't be the only one?

Thank you so much for your latest input, this is how I felt last night whilst trying to get to sleep.
I felt that I was being put off the chemo by the breast consultant. I will certainly ask the ? What treatment would you sugest to a 50 year old man.
I was going to ask about if there was any residual cancer cells left behind when my breast was removed, I want my best chance of surviving for a few more years.
I feel my best chance is to have the chemo.
Kindest regards.
clunkshift
Member

Re: I can't be the only one?

Tinger,
I think the first question for oncologist ought to be along the lines of: what treatment would you suggest for an active 50 year old man with the same diagnosis...
The surgeon only removed 4 nodes and found markers in 50%. By comparison, my results were 2 out of 10 which is 20% and i had chemo.
I thought that the chemo was to chase down any escaped cancer cells and kill them off in a whole body treatment, while RT just fries and atrophies the local area.
chemo is horrible at the time, you feel awful for about 3 or 4 days after, then you improve daily and in the 3rd week just before the next treatment you are nearly feeling ok - then you have another poisoning. 6 sessions at 3 weekly intervals is 18 weeks, so really you are looking at 6 months before you feel ok again.
I had my chemo on a thursday, had friday in bed, recovered saturday and sunday and went to work on Monday admittedly at a desk job but I still did things on the other two weekends and got on with life.
I had 3 x FEC and 3 x Taxotare folloewd by 5 years of Arimidex/Tamoxifen tablets.
our priority is always Outcomes - length of life but also quality of life.
keep making notes, read up anything sensible and satisfy yourself that you are receiving the treatment best suited to you on that basis.
very best wishes.

Tinger
Member

Re: I can't be the only one?

I just wanted to update you re me visit today with my Consultant after my op and to find out the details of the test results on the tumor and the lymph nodes.
4nodes where removed two had signs of cancer spread and two were clear.
As for treatment it was suggested that I will rads on my armpit and around they removal site on my Brest,as far as chemo this will be discussed next wednesday when I see the oncologist and my breast consultant.
It was suggested that the benefits of chemo for me would not out weigh the side effects, but it is my desion.
The reason is I am a very fit 77 year old going on 60 gent.
I am confused as I would like to live a lot longer and I just don't know what I should do,at the moment I favor deciding on having thr chemo.
Best wishes to you all.
Tinger
Member

Re: I can't be the only one?

Thank you for your info, I shall certainly do as you suggest, note book and pen,and of course my Dear wife.
I shall let you know the details on thr 29th.
Best wishes.
clunkshift
Member

Re: I can't be the only one?

Thats great news Tinger, Now you can move on from being a bag man to being a chemo man.
As I often say, go to the appointment armed with a notebook and write everything down, so you know what the treatment will be, what chemicals will be used, What provision is made for side effects like sickness and what the proposed shedule of treatment is. It is all a bit of a shock at the moment and you may feel an information overload, so the notes will help to make sense of it all.
When they explain about your operation and their findings, write it down so you can be a clever clogs and say you are a DCIS (ductal carcinoma in situ) or similar as the acronyms save a lot of typing. They should talk of lymph nodes and/or sentinal nodes having markers or not, what sort of node clearance was done and how many tested positive. They should also give you a cancer Stage of I, II, III or IV. I realise that you may not know or care what any of it means but you make be asked for travel insurance or other insurances in years to come so it is handy to have it written down.
Don't be afraid to question an oncologist or ask them to spell medical terms. You should ask if your treatment is the current "standard" or "new thinking"; try and make the Onco explain their reasoning.
You may get such information as "dont carry heavy shopping bags". For men this is a little odd but what they mean is don't carry a sustained weight on your mastectomy side, as this causes the muscle to bulge with blood while the weight in your hand will slow the return flow, which could induce lymphoedema.
All this will sound bleak but I have tested my lympho arm with some serious cuts falling off a trials motorbike and a severe test when chopping firewood and hitting my knuckle instead. Neither of which brought on Lymphoedema but I still wont carry things in that hand or do gardening without a thick leather glove.
best regards and don't let it get you down.
Clunk.

Tinger
Member

Re: I can't be the only one?

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
ChoccieMuffin
Member

Re: I can't be the only one?

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...

clunkshift
Member

Re: I can't be the only one?

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

ChoccieMuffin
Member

Re: I can't be the only one?

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

Tinger
Member

Re: I can't be the only one?

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.
clunkshift
Member

Re: I can't be the only one?

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.