Cancer aftermath [Archive]

Clunkshift

11-06-2008, 07:30 AM

Cancer aftermath – those ever present niggles

Oola, If a spleen can be vented, or ideas exchanged can I do it here? I don’t want to cloud more serious threads.

I find that medical web sites and indeed medical staff who lack personal experience of living with the after effects of cancer and cancer treatment, can be very glib about the ease of returning to everyday life, but sufferers know that what may seem a minor niggle to others, is a b****y nuisance (sorry, vexation to the spirit) to those who have to live with them.

I know it isn’t the end of the world and that (probably) it will be gone tomorrow but that little niggle is going to upset my plans for the day and really p**s me off (sorry, spoil my repose).

My niggle is on the verges of lymphodaema; though it may come across as the verge of hysteria. I have been enjoying the summer weather by riding my motorcycle to work and intended to do so again today, but when I awoke form an admittedly fitful night’s sleep, I found that my left arm and hand have spent the night hoarding fluid and the back of my hand is swollen in a puffy manner, my upper and lower arms feel slightly enlarged by quite solid compared to my right arm and my armpit, encompassing my shoulderblade and breast-less chest area feel solid and tight.
I didn’t do anything to cause it, I didn’t even lay on that side, and the only thing that I can imagine that I may have done is to have bent my wrist by “fisting“ the mattress as I slept. So I have driven to work in the car as I know that my motorcycle suit will be too tight round my shoulder joint and my wrist and hand will also make the glove too tight for comfort.
It doesn’t quite stop there either as flexing my fingers or wrist produces a sensation that is just of the fiery side of tingly.

Do any other Lymph deprived or Lympless people suffer this?
More to the point, has anyone found a way of speeding up the fluid draining so that it might feel normal again today rather than tomorrow?
I am at work so resting my arm and hand in a large tub of hot water is not an option ( I don’t know if that would work but it is something I would try at home), but some subtle rubbing may be possible under the subterfuge of pensively studying documents.

Any thoughts?

Clunk

Primrose

11-06-2008, 08:50 AM

Oh! Clunk

I just wrote a long reply - nothing really helpful - but just my thoughts. Husband called me downstairs to check my Herceptin appointment and I came back up and finished reply. Sent it and gone! So I think I must 'copy' it if I get so far and then maybe I can paste it. There is no way to save a draft - having said that this site is much easier to post messages so well done Oola's partner. Must be a 'time out' thing.

Will write it all again later,

Gilly

eleanor2

11-06-2008, 02:39 PM

hi clunk i am so sorry to hear of your dilemna and can see that this after math of cancer is causing you so much suffering.i have no right to really say much here not having cancer .but i am a great believer in massage for fluid drainage.the heat and stimulation and manual force moving your whole system along.find an essential oil that suits you with a carrier oil and it can be a pleasure as well .hope you got through the day o.k.you definately sound a fighter.

Primrose

11-06-2008, 07:53 PM

Hi Clunk

Here I am again and will try to remember all that I said on my first posting. Lymphodaema - I am being told that I am lucky it hasn't come yet for me!

I do know there are clinics for lymphodaema do you have them around your way? Better still, can I remember you saying you had a company nurse, if so perhaps she could learn massage of the arm for lymphodaema? (I see that eleanor2 has also mentioned massage) I think I have seen arm massage advertised at the hopsital carried out by the Red Cross.

My Mum, bless her at 85, was telling me the other day that years ago her next door neighbour had BC and had trouble with her arm. The GP told her to go and clean her windows only using the affected arm. She said she had already done them so he said go and do them again. Apparently it helped - so - do your office windows need cleaning? Only joking!

I have seen ladies and a man wearing one of those tubular elastic supports on their arm - have you been told about them?

For me at the moment it is the pain in my shoulder which is a pain in the a.. and although I am told it is weak muscles I feel it is more like tight muscles. Still I see physio next Tuesday and my requested check up with the consultant on the Wednesday so will have a further chat about how much exercise should I do with that arm. Mind you I went to Remedial Pilates before Herceptin so it got a good move around then - like your windmill - but mine was flat on the floor.

Hope you get a good night's sleep,

Gilly

Clunkshift

16-06-2008, 09:36 AM

Gilly,
I don’t know how you women manage to post so regularly; I am so sick of looking at a computer screen for most of the working day, that I often don’t switch mine on at home in the evenings, and sometimes not at all on weekends.
I became so used to losing texts of e-mails before I sent them that I now type everything in MS Word, save it, then paste into e-mails – and then I find that my font size is twice the normal side and have to reduce the font and repeat the process…

I e-mailed the hospital on Wednesday, to no apparent effect, and then phoned them on Thursday. I actually spoke to the lympho nurse (does that make her a lymphomaniac?) and she said that the specialist that I e-mailed had arranged an appointment with her for 7th July and sent me an appointment letter (a letter in response to an e-mail? Well she is Irish).
The lympho nurse said that she will demonstrate the massage techniques at the appointment, so I will take my wife with me for instruction; meanwhile, I have 3 weeks to wait.
The lymph nurse had the temerity to suggest that the vibration from riding a motorbike might be causing the problem, so I googled vibration & lymphoedema and found that the cutting edge research is all about vibrating devices to help clear the fluid.

I was short of patience and entertainment on Friday morning, so I took my arm to the doctor’s surgery. I enjoy watching all the careful seating choices as people come in; no sitting next to the opposite sex if an alternative is available, no eye contact with younger people of opposite sex, don’t sit opposite someone with nice legs or you can’t look down to avoid eye contact without seeming like a voyeur etc. I take the easy option of bringing a paperback with me (Pies and Prejudice by Stuart Maconie) and thus avoiding any human contact whatsoever but still like to see the choices and their repercussions when new contestants enter the waiting room.
My GP took the view that as I already have an open chest wound, ifection could be the cause, so he would give me antibiotics to err on the safe side. These tablets are a new type to me; there are only six tablets which are taken in pairs for three days, then you wait 7 – 10 days to see if they work; well it is four days so far and my hand and arm feel better but my shoulder still has that “encased in concrete” feeling.

On Saturday I went in for my own vibro-massage an exercising by mowing the lawn and some manual weed clearing. The mowing didn’t bring any fluid to my hand so that shot down the nurse’s theory – much to my satisfaction.

One of the women in our church has been through the BC (chemo / radiotherapy / tamoxifen) mill and suffered very slightly from fluid build-up. She briefly showed me the massage movements (we did it in the church car park to confuse passers by) and she said that she was given a compression sleeve but they are allegedly bespoke items and I would have to be measured for one by the hospital, so I’ll find out about that in 3 weeks time.

Meanwhile I’m thinking of joining the Lymphoedema Support Network. They are a charity so my joining will be a good donation and I might actually contact someone in the medical world who knows what they are talking about.

If it wasn’t for having had about a month of fluid freedom, I would still have thought that it was a normal and permanent effect of surgery, but now I know that these things are a sign of lymph gland malfunction or overload I want to overcome it. My friend at church lost 22 nodes (all clear) while I only lost 10, so I’m aiming for improvement somehow.

I hope your shoulder improves soon and that they find suitable exercises to give you freedom – especially freedom from pain.

Clunk

Rustic Pumpkin

16-06-2008, 10:28 AM

A friend of mine who used to cross stitch regularly was unable to after her surgery (seven years ago now) due to the discomfort and fluid build up caused simply by the needling technique she used to stitch. One day she saw my leather quilting thimble and she took one and tried it out. It provides enough protection to her fingers from the needle that she is now able to cross stitch again.

I'm sorry, Clunk, that this doesn't answer any of your questions or help you any, but I mentioned it here in case it can be of help to someone else.

Primrose

16-06-2008, 11:02 AM

Clunk - I should not be on computer as much I am like a naughty teenager on MSM!

Found all your news made such interesting reading. My Mum and all her sisters joined the Lymphoedema Siociety five years ago when the eldest of them in her late eighties was being neglected by the GP. All of them have 'big' legs and thought it was hereditary just the way they looked. Anyway some internet research, etc produced this action because we put a name to the condition.

Can you imagine this? My Mum (in her eighties) younger sister and a driver taking their eldest sister to A & E refusing to leave until she was helped. (GP said he couldn't do anything and she didn't need hopsital care.) She was admitted and stayed in there for eight weeks. Last year unfortunately she died but had a more comfortable few years and was convinced she was helping her sisters with their own health and changed her GP.

Well I am off to my requested hospital appointment on Wednesday to see what is going on. By the way I cleaned the windows using my left arm sometimes. Still aches never mind.

Have thought about taking up knitting again to see if that helps - can you get vibrating knitting needles???

By the way your wife is a true example of how to 'move forward' and you deffinately chose the right woman to marry.

Have a good day,

Gilly

P.S. If the cutting edge research is about vibrating devices for Lymph. then I suppose when we sit in the waiting rooms we can see who is quietly vibrating.

Clunkshift

22-06-2008, 08:28 PM

I should probably feel thankful for medical attention but I always end up feeling patronised.
I have been on antibiotics in case my slight arm lymphoedema was being caused by an infection, so all I had to do was wait until my chest wound heals up and then I can get on with radiotherapy.
I won’t bore you with the details but suffice to say that a permanent stomach upset goes with the antibiotics.
The x-radiators phoned on Wednesday to see how I was and when I said that I still had a hole like a piggy bank slot in my chest, they asked who my nurse was. I didn’t understand the question at first but they somehow assumed that I was seeing a nurse almost every day and when I said I didn’t have a nurse in that sense, they called me in on Friday so one of their nurses could have a look.
Not being one to disappoint a nurse looking for trouble, I managed to get my armpit, scar area and remaining breast to come up in a nice angry looking rash before the appointment.
The nurse said “I don’t like the look of that”. I said “I don’t like the feel of it, never mind how it looks”, as it was hot and itchy in that nettle-rash kind of itch.
She tried to remove my dressing, but I wouldn’t let her and removed it myself – it isn’t half as painful when I do it. She looked at my wound, pronounced that it wouldn’t be ready for another 2 weeks and then started to dress it again.
The thing I really hate about some nurses is they way that they always know best. My wound has been happily healing with just an oversize adhesive dressing but she started to put material in the wound. I tried to let her know gently that I knew what I was talking about by saying “my consultant said that I don’t need calcium alginate in the wound, it just needs a normal dressing”, but did she listen – no. Then she put in a piece of gauze and produced a smaller dressing to hold it in place. I said, “I have larger dressings than that or they won’t stay on”. But she didn’t listen and put in on.
Then she made an appointment with my GP about the rash. She was convinced that I was allergic to the antibiotics which I had been taking for the past week. I said she wouldn’t get an appointment with my GP and sure enough I had to see a GP in another surgery about five miles from the village where I live. And even better, she fixed an appointment that gave me 45 minutes to get to the surgery which was 35 miles from where she was standing – on a Friday at 4:30.
I arrived at the surgery a mere 10 mins late and saw a very kind doctor. As I removed my shirt, the new dressing and its contents fell to the floor…
Having re-dressed my wound with a simple, but larger dressing (and no fillings) he said the rash was probably a combination of heat and fungal irritant and prescribed so cream. Well the cream seems to be working but I still have the heavy feeling around my shoulder joint from shoulder blade, through armpit to scar area.
So although my hand and arm are normal, the lympho feeling is still all round my shoulder – has anyone else suffered this or is it a “man thing” because of the mastectomy? From the mastectomy , my scar ends in a lump (almost like a false nipple) but at the armpit end; just where my arm can rub it. I am tempted to invent a cupless bra for mastectomy men to stop this rubbing but I fear the market is too small to make it worthwhile.
In this summer weather, jackets are uncomfortably tight in my armpit, so motorcycling is hampered by lack of loose clothing.
I know that compared to others, this is a very minor irritant but I just feel grumpy and in need of a whinge.

Oh Gilly, I tried rubbing a bit of alchohol on my shoulder, but nearly broke my neck trying to lick it off
(Benny Hill circa 1965)

Primrose

24-06-2008, 06:42 PM

Hi Clunk

Moan away and don't forget it is best to get 'three quotes' or 'opinions' in medical areas.

So I hope you are doing OK and you have managed to train your tongue to come out further so you can lick the alchohol.

You mentioned about joining the Lymphoedema Support Network. I may have said my Mum belongs to this. She has just phoned asking me if I would like to keep the article, in her News Letter she received today, it is specifically about Lymphoedema after BC Surgery.

Thought you may be interested.

Gilly

Clunkshift

24-06-2008, 07:31 PM

I sent off my cheque last week so I may be lucky and get the newsletter with my membership.
I'm ok most of the time but at the end of a long warm day, I just feel uncomfortable, itchy, hot and grumpy - and there is nothing handy to kick.

25-06-2008, 04:03 PM

Clunkshift, you do sound lovely and I'm so glad that you've stayed with this thread even though you must feel like the odd man out. I've read your posts with interest even though I haven't replied. Your perspective on BC should be compulsive reading for all of us, and for the medical profession (I have a nurse for a big sister and she has always known best. I think it must be a qualification for the job and the NHS just hones the skill. I worked in the NHS too, and often felt just like I was talking to my sister)
I think it is appalling that you can't have a reconstruction because you are a man. Unless it is something to do with your physionomy, I can't see how it can be justified. I know that you said that you don't want to go topless, but then neither do most women I know.
I have some thoughts on radiotherapy too. I know that you can't wait for yours and you've been through much worse through chemo, which I didn't have to do, but I must tell you I hated my radiotherapy. The people were lovely and it all went smoothly. But lying there in the room when they all vacated it really brought it home that it was me it was happening to and no-one could really share it.As well as the purple tattoos, I had a deep tan, one line of which I can still see after 2 and a half years, and tenderness and achiness, but most of all I was really grumpy. I hated having to watch the clock every day until time to set off for my appt, which was the same time every day for 6 weeks. Although I wasn't allowed a day off, my machine was, so I had a couple of days off. My temper was vile. I exploded at the slightest thing. One day, when I found a mouse had eaten a t-shirt, brought back for Alaska for our godson, I stamped around the house roaring like a lion with anger! I was very tired and couldn't explain why when, inlike you, I stayed away from work until the end of my radiotherapy. Maybe I'm just a wimp. Anyway, when I did go back to work, I resigned, as I was lucky enough to have a wonderful Fire Officer husband who'd just retired with a good pension. For ages, I had an aversion to HAVING to be anywhere at a particular time.
Anyway, what prompted me to reply now was the lymphodoema. I know a man whose wife was so impressed by manual lymphatic drainage (MLD) after her breast cancer that she learned to teach it. I have only minor problems with my sampled lymph glands, but he told me to internet search 'MLD' which would find me all I needed on it. I might try it on my pesky right ankle and foot, which goes puffy and gives me tingling etc whenever the weather warms up. I'm not overweight, don't smoke, get lots of exercise and, like you can't find what triggers it and can't get rid of it once it comes.
Sorry it's such a long reply,, but your posts have prompted thoughts for a few weeks now. (Even asked my husband what relationship 'Clunkshift' had to motorbikes and got a complicated answer about clutches, gears and toe action)

25-06-2008, 04:15 PM

PS Clunkshift
Forgot one important thing about radio that I wanted to tell you. A bit personal really, but I feel safe here. Not a lot of women will admit to getting the odd stray hair around their nipples, but I do. My irradiated nipple hasn't grown any in 2 and a half years. On a man's chest, a patch of hairless chest might look odd, especially as the radio is so accurate that you get straight lines of tan, so might get straight lines of hairlessness. Don't know what yours looks like normally or after chemo, but thought I'd warn you.

sandybay

25-06-2008, 04:32 PM

Dear Clunk,

just to say how much I agree with JG about having you onboard.
It does us good to have a cockerel in the henhouse - just hope you can
put up with the clucking. It's good to have a male point of view sometimes.

I imagine talking about your treatment and feelings to your mates may be difficult. Men, bless 'em not the most emotionally literate of the species.
You are very welcome here and glad you have RM members to share concerns with.

x Sandy

Primrose

25-06-2008, 04:55 PM

Clunk

Did I tell you I took Radiation Remedy Tabs and Radiation Skin Gel with the consent of the medical staff? It is suggested you start tabs so many days before radiotherapy starts.

I do not know if the tabs helped with tiredness - I wasn' too bad.

Got them via www.shopatpennybrohn.com

Hope all is going well,

Gilly

Clunkshift

26-06-2008, 07:20 AM

JG & Gilly,

Thank you for your posts, I have felt incredibly isolated by having breast cancer, I have just one male friend that I can talk to (bore witless) about my progress; to the extent of an hour long phone call in works time! Otherwise men ask how I am but I know that they don’t want any details or even a progress report and some even take a slight backward step when we meet as if BC might be contagious. Fortunately women are exactly the opposite and are probably most interested and supportive because it is BC.

I am indebted to you ladies that discuss not only the treatment but all the little side issues – each one quite minor but more than a nuisance when added together.

I must confess to writing a kind of diary/book about my experiences and have reached 110 A4 pages so far, but I guess that in the end It will just be therapy for me rather than anything for publication; though a friend whose husband is a paediatric surgeon has read several excerpts and says that it should be required reading for medical students.

Men are not given any reconstruction on the NHS – end of story.
Following the Amazonian legend I could probably take up archery to some slight advantage and I do have more space for my wallet in my left inner pocket but otherwise, I feel mutilated and ugly. I joke about it and I even asked the consultant who was explaining the operation, if she could reduce to other side to even things up but really, it has lowered my self esteem considerably and I can’t write about it without my eyes misting up.

Thanks for the information on MLD, I will investigate that today.

Hair has been a problem throughout my treatment and to be honest, I was glad when my body hair came off during chemotherapy as I then suffered less from adhesive dressing removal. At first I accepted the standard nurse line that if they pull it off quickly it won’t hurt, but now I think nurses sense that they are on very dangerous ground and keep well back while I slowly and painfully remove dressings myself.
Because my radiotherapy has been delayed by at least nine weeks, where I had no hair at the first planning session, now I have a good covering again.
But the best news I have is that I have dispensed with my chest dressing at last and i feel oddly free!
I removed my chest dressing last night and the wound is dry and scabby looking so I have left it exposed as I will be seeing the BC consultant again next Tuesday and I shall call the radiotherapy centre to tell them of my progress. So I’m hoping that I can have the second planning session soon and get on with the treatment.

Gilly - Thanks for the information on remedy tabs and skin gel, I will definitely ask about this too, I’m not too proud to seek help from any source if it helps me get through the treatment; and my wife would have an easier life too if the side effects were alleviated.

So I look forward to a weekend where I can forget BC for a while and taking my wife and daughter to a horse “breed show” near Gloucester, I can just be “normal” – whatever that is.

Clunk.

p.s
The “clunkshift” comes from riding a BMW motorbike. Japanese gears change with a nice “snick” when you just gently tap the lever. BMW gears resist when you push on the lever; so you push much harder (or stamp impatiently on the lever) and it changes with a reluctant “clunk”. I have made smoother gear changes in a Landrover…

Primrose

26-06-2008, 08:13 AM

Good morning Clunk

Really pleased your dressing is now left off and the wound is dry.

Diary

I too kept a diary for months and when I have read over some of it again if feels like a different person writing it. Can you remember me saying on CL about an article written by a Psychologist who actually worked with ladies with BC? Until she too was diagnosed it changed the way she talked to her clients, her reference books, were not as relevant.

Support

Reading your posting a thought has occured to me. Why not see if www.breastcancercare.org.uk can find you Pier Support? I assume, and this can be a mistake, that you have heard of the organisation?

I stayed off their message board site and joined CL it became too depresing for me. However, I have used their Pier Support e.g. one to one with someone matched to you. This is where their challenge could be to find another man with BC who is a pier support worker - but - who knows they could have men on their books.

When I was first diagnosed I talked to a lovely lady who gave me support leading up to and after my op. Then because she hadn't had chemo they are ready to transfer you to another volunteer who has, etc. You can continue this support at whatever stage you are at and finish when you want to.

Finally 'pride' if you have too much it is possible to become isolated. Thank goodness you do not have it when it comes to BC.

Medical staff can become intimidating, exactly what I was up against when I was just about to have my op and I was told 'You are concerning me because you are asking too many questions.' The strength you would normally have to deal with these people are at a low after receiving a life changing diagnosis.

Anyway lets get 'normal'! Have a great weekend,

Gilly

lesleyhannah

20-07-2008, 08:08 AM

Hello again Clunk, Gilly and everyone

Like Eleanor, I can't comment on cancer treatment personally, but I do have experience of (generally young) hospital doctors and nurses, who don't seem to have the ability/motivation to imagine how a particular condition can affect your daily life. Do they really listen, or just wait till your lips stop moving so they can give you the speech they'd have given anyway?

It's good that you've made useful contacts Clunk. I think that's the important thing. If you know that what's happening isn't right then it gives you the confidence to challenge the indifference or medics. I must say some of the side effects you and Gilly have mentioned sound horrendous. I'm most impressed that you still manage to work through all the stress and hassle. I feel I know so many people on this forum now, and follow your stories with interest. I wish you all improved health and understanding medics.

Clunkshift

21-07-2008, 11:58 AM

Today’s radiotherapy session was much better. There was a different team leader who was friendly and bright, and they made lots of adjustments to the couch before I laid on it and they adjusted the arm and wrist rests to fit me (rather than making me fit the rests). It also took less time; I changed, had my 3 zaps and changed back in half an hour.
It all went so well that I dropped my bike in the car park while manoeuvring, just to add some pathos to what would otherwise have been a trouble free appointment. Fortunately I feel quite well and was able to raise 245 kg of bike back to the vertical and remount from the wrong side without any difficulty, so pride was the only thing that took a dent.

So 2 down and 10 more to go.

Clunk x.

dinger

21-07-2008, 01:24 PM

Well done Clunk so pleased it was a better experience for you today with more helpful staff x

Healing Hands

21-07-2008, 05:01 PM

Hi Clunk, I am a Aroma therapist and also I do Reflexology. Reflexology is one the best treatments for Alternative therapy.

If the lymph nodes become blocked or function improperly, toxins and waste build up. By deepening relaxation, reflexology causes all the systems of the body to function more efficiently.

By having reflexology the lymph system also removes excess fluid which has accumulated in tissue spaces.

If you have any questions about this Clunk then post me on the private message and will give you more information.

Reflexology is a wonderful treatment.

Primrose

22-07-2008, 10:56 AM

Clunk I am pleased all went well yesterday. It really is amazing isn't it with any treatment it is the skill of the person who is giving it that can make so much difference.

Radiotherapy is really easy after the chemo treatment and for you it must be such a relief to be getting on with it now.

Do you also have those silly upside down short ice cream cones to hang onto?

Well, what can I say - you men will try anything. Fancy showing off and throwing your bike around so that people can see how strong you are!!!

Take care,

Gilly x

Clunkshift

22-07-2008, 12:39 PM

Healing Hands,
I will consider reflexology as well as MLD but I won’t do anything until the radiotherapy is over as my daily schedule is a bit manic at the moment.

Gilly,
The Reading torture couch doesn’t have any hand grips, just ‘U’ shaped rests for upper arms and wrists. The final hand position is therefore quite random and may leave hands close enough to intertwine fingers, or within head scratching distance but at other times all you can do to stave off pins & needles is just rub fingers against each other – and it doesn’t work!

My sons think that my dropping the bike is just a ploy to gain wifely approval for a newer, smaller model (a newer bike that is, not a newer wife).

I did feel quite tired in the evening and went to bed at 9:00pm. I intended to read a book in bed but my eyes and concentration weren’t up to it. This morning I still felt tired and came to work by car, so I will have to make sure that I get a lot of sleep during the radiotherapy as it obviously is making me tired.
Tomorrow’s session is at 8:40 so I may well be tired by the end of the working day. Other sessions are closer to the middle of the day which is probably better.

Clunk x

Primrose

22-07-2008, 02:04 PM

Hi Clunk

Your sons have you sussed!

Yes - I had the 'u' shaped rests also but again I suppose it is the skill of the technician to have got it the position right for you.

It all seems so strange lying there and do you get that feeling 'what if I want to sneeze, what if my body suddenly jerks (not that it usually does), etc.?

I passed the time away on the second and subsequent sessions counting the shapes in the light above - how sad is that!

Poor you with the tiredness. My sessions were always around the 4 pm mark or sometimes in the evenings if they had a 'breakdown' during the day. Being in the Hostel gave them flexibility with our appointments. So maybe my tiredness would have come in the evenings or during the night.

Of course I didn't have to work but we talked a lot (you know how tiring that can be) and I walked quite a bit. Maybe my Radiotherapy Tabs did help - who knows.

Take care - what model are you looking at my the way???? Only joking - keep dropping this m/bike and your muscles will develop even more.

Good luck tomorrow.

Gilly x

Crocus

22-07-2008, 02:35 PM

Hi Clunk, glad that the radio therapy session went well, as you say only 10 to go. Just don't drop the bike again eh? Might have a dent or two after 10 more 'drops'! x

Primrose

19-09-2008, 09:12 AM

Clunk

Just thinking of you and hope you took to Herceptin OK.

Big Sis xx

Clunkshift

22-09-2008, 03:56 PM

Big Sis,

Apart from the "pin the tail on a donkey" cannula insertion and the long wait for the infusion, it was all quite straightforward.
They kept me on a very slow saline drip throughout the "observation" hours and I felt ok - until I tried walking down 4 storeys of stairs (in an attempt to "loosen up") and then walk out to the car. My knees and ankles felt weak, my stomach felt strange and I had no energy. How can sitting in a chair for hours be so tiring?

Fortunately swmbo drove home but I was really feeling odd (slightly feverish)and slept like a log that night.

The following day I felt good (see friends support thread) but I was short on energy and the fiery feeeling in fingers and wrists was joined by achy knees and shoulder & arm were quite prickly too.

Ater a weekend I feel more "normal" as far as energy goes but the fiery figers & wrists remain (although they come and go through the day) so I guess they are from the Arimidex rather than the Herceptin.

How have you managed 11 pincushion sessions without punching anyone?

best wishes and prayers,

Clunk x.

Primrose

22-10-2008, 07:23 AM

Hi Little Bro

I am off for my 13th Herceptin this afternoon and I hope I get a chance to choose a nurse!

How is it going for you?

Speak soon,

Big Sis xx

Clunkshift

22-10-2008, 12:25 PM

Sis,

I hope this turns out to be a relaxing afternoon for you. Now that you have passed the halfway mark, each one is "one less" isn't it?

I went to hospital with my wife today and am feeling tearful and crushed.

It is 18 months since her big cancer op and she has had a slightly painful feeling on the other side of her neck recently. After seeing a doctor on Friday, she had a phone call yesterday, calling her in to the clinic today.

I went with her as we both fear the worst. The maxio facial specialist felt a slight lump and took a needle sample (2nd attempt). We are going back tomorrow for an ultrasound scan and then next Wednesday for another appointment with the specialist.

This is on the opposite side to her previous operation where they removed lymph node as well. This is probably a lymph node and could be a cyst - but we are both expecying the worst outcome.

I have my next herceptin next Friday afternoon but right now it doesn't seem very important at all...

much love,

Little Bro xxx

Katelb

22-10-2008, 02:48 PM

Clunk,I can imagine how fearful you must both be feeling,very special thoughts and prayers go out for you both,I shall think of you both tomorrow and next Wednesday,and of course on Friday with your Herceptin.xx

keepersdaughter

22-10-2008, 03:58 PM

Clunk thinking of you and your wife. Hoping that is something very simple like a swollen gland or lymph node. Sending best wishes and positive thoughts to you both.

Primrose

22-10-2008, 06:58 PM

Oh! Clunk

What a shock to read this - my heart goes out to both of you.

I don't know what to say other than life just isn't fair you have both had your share now.

Let us hope that this is a false alarm and they are, as they should be, being ultra safe. Having and waiting for these results are like a living nightmare.

Sis xxx

22-10-2008, 08:58 PM

I have everything crossed for you and your wife Clunkshift
lots of love

Crocus

23-10-2008, 06:33 AM

Hi Clunk, I'm so sorry to hear about this! I've come to know you as strong person. As your Big Sis has said, let us hope for this to be a false alarm. You are a strong Christian as well Clunk, draw strength from this fact, draw strength from the Lord. I'll pray for you and your wife.
Crocus xx

dinger

23-10-2008, 07:49 AM

Clunk so sorry to read this news . Life seems so unfair at times and we can't help but ask why. You are such nice people and deserve the best of everything but sadly we can't change anything, I am keeping you and your wife in my thoughts and wishing you all the best . Love Dinger xxx

eleanor2

23-10-2008, 12:03 PM

clunk i have just been reading way back when things were hard but going well.now your spirit must have plummeted.do hope it is a false alarm.your faith in God is your only strength.in your weakness God is our strength.you and your wife will be in my prayers.hoping and praying for good results.there are tears in my eyes.i just cant imagine what you are going through.

Clunkshift

23-10-2008, 12:23 PM

Well the ultrasound scan has confirmed that there is a 2 cm lump under her muscle. So now we wait to see the consultant next Wednesday and hope that he has results from yesterday's needle biopsy.

We still intend to go on holiday in just over 2 weeks time but I can't see the present cloud lifting for a while.

I know that the original circumstances were different, but i can't help thinking about Margaret (emjay53). The boys are over 21 and the eldest lives in his own place but our daughter is 14 1/2 and right now, we don't know how much, if anything, to share our current circumstances and future fears with them.

It was a tearful parting when I dropped my wife off at home and came in to work and to be honest, I'm finding it hard to concentrate but I need to earn the money while I can.

Thankyou all for the thoughts and prayers, it really helps as this has been a 4 tissue post for me.

Clunk x

Primrose

23-10-2008, 01:23 PM

Dear Clunk

How are we managing to deal with so much? As I have said before they say stress can bring on these things but to me we have ended up dealing with far worse times now.

Wednesday must seem too long to wait to know what is happening. Your poor wife you must want to be with her it has to be so hard for you.

I met a lady in hospital having her second operation for breast cancer, same time as me, after her first one ten years earlier. She said the consultant told her it was good news it was a different type than the first!

I am sure Margaret comes to mind it is only natural. When you say about your daughter, I too, had a similar scenario. Do I tell my Mum I was off for tests after she had been nursing, with my help, her partner of 35 years with cancer and he died in the March. So I chose not to until I had my results in June and could not change what was about to happen.

For me, not having a God to talk to, I chose the Consultant Psychologist as you may have read in previous postings. My family gave me as much as they could but I needed to talk.

Can I share something else with you now Big Bro? It is not about C but what else I am trying to deal with. Our daughter has not been well for 2 months and she suffers from a Bi-Polar illness. She was taken into hospital about 4 weeks ago, the nature of her illness is that she has rejected me totally. She has said some terrible things but I am just trying to say it is the illness talking but it is not that easy.

BUT - she met a man one week prior to being admitted who claimed to be a Macrobiotic Practitioner and was convinced he was going to get her off her medication and cure her through diet. He turned out to be violent and the hospital team had to get a warrant, for police protection, to get to her in the house and then they were finally able to get the Doctor to admit her.

Since in hospital they originally denied him access to her so he threatened to kill a nurse and the police were called. A few weeks later she was well enough to have an un- escorted leave and met him again!

I could say so much more but the bottom line now is she has rejected us all and is planning to get married! So we are trying to deal with that and trying our best to support her teenage children.

We have taken as many steps as we can now to make sure she is safe even in hospital but as you can imgaine our next fear is what happens when she comes out.

It is as though I have lost her. No matter what age our children are we want to protect them. I am fully aware of the un-treated tragic consequences that a bi-polar illness can bring and that is now also giving me sleepless nights.

Your wife and you will know when the time is right to talk to your children especially your daughter. You can only do what feels right at the time. Maybe there are no wrong decisions, when we are faced with these situations, because they are made out of love and we are trying to make them as best we can at that point in time.

To have to be at work and not by her side must be so tough for both of you.

I really just do not know what else to say my thoughts are with you both.

Sis xxxxx

P.S. Clunk please do not even try to respond to my problem. I am just trying to say we seem to be being pulled into so many directions through serious illness. It seems we are trying to support our loved ones and at the same time remain positive about ourselves.