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What a way to start November

1 Nov 2015 11:23

Good morning "gang" and a pinch, punch, first of the month to you all.

I feel a bit sorry for myself today and would like some advice please.  After four sessions of chemo which, we all know, is not the best way to spend a day, and getting through the side-effects which, although not very nice, I was always able to tell myself that after three days at the most, I would start to feel human again.  I have now been put on radiotherapy and it was my first week this week.  I feel absolutely shattered, weak, sick and very sorry for myself.  When I told my consultant on Thursday the answer I got was along the lines of "if you think this is bad, wait until next week"!  I was told that any possible side-effects wouldn't start until the middle of next week but, being greedy, mine have started already, griping pains, diarrhoea, to name a few.  Even my poor little fat legs are so painful and weak and I can't stay long in bed as the pain in my hips and legs make it impossible to sleep.  Neither paracetamol nor co-codamol helps.  Has anybody some good news along the lines of: it WILL get better, not that it will only get worse?  My journey to and from hospital takes at least 2 hours each way and by the time I get home, I just collapse in the chair and sleep.  The annoying thing is I'm not usually like this. When I was diagnosed, naturally it was devastating, but I got angry with the cancer and called it all the names under the sun.  I got through the surgery and chemo with the same attitude but this has really knocked me for six.  I've not been able to do any housework or laundry so if there is anyone reading this who would like to do some extra vacuuming and ironing, then do feel free to let me know (hee hee).

My best wishes to all of you.

Battling Babe xx

What a way to start November

1 Nov 2015 12:34 in response to Battling Babe

Hi there,

Firstly let me say I love your sense of humour. I cant understand consultants who speak like that, That makes me mad, they really do need training in bedside manners. I had 37 radiotherapy treatment for preostate cancer but I was one of the lucky ones who didnt suffer bad side effects aprt from a little bleeding from the back passage which was sorted out with suppositories. I did suffer a bit of diarrhoea but I used imodeim instants and this controled it very well.

My team did tell me if I felt tired to go and lie down for a while and I did as I was told (honest) and after a quarter of an hour I was okay again. But in your case when you add in four hours travelling on top, which is tireing in itself, it's no wonder you feel tired. Speak to your team (not the consultant) as they may be able to offer something to help.

Best wishes and please let us know how you get on, Brian.

What a way to start November

1 Nov 2015 12:56 in response to woodworm

Thank you Brian.  I will mention it (and ask about Imodium as well), but certainly not to one of the doctors.  When I was told that I HAD to have chemotherapy following surgery, I asked how long I would have if I didn't have it.  Without breaking her stride while tapping the keyboard and staring at the monitor, the doctor just blurted out "months" and carried on typing! For what seemed ages but I suspect was only a second or two, I just stared at her in disbelief and, even now, I don't know whether it was the shock of what she said or the way she said it (most probably both) but when it sank in, I just burst out crying and STILL she carried on typing.  It seems we're on an "invisible" conveyor belt which mustn't stop, or even slow down, for anything.

How are you now Brian?

Do take care and, once again, thank you.

BB 

What a way to start November

1 Nov 2015 14:00 in response to Battling Babe

Hi BB,

I am so sorry you have such inconsiderate and rude doctors. When one has cancer, most people find that there is the cancer itself to deal with,but what some doctors dont seem to realize, there is also the emotional  and even mental effects it has on us and is certainly not helped by remarks like what you have had tossed at you. I was very lucky and had briliant treatment right from day one from all levels. The radiotherapy nurses were brialiant and I had many laughs with them. When a man is having radiotherapy to his prostate, the nurses always ask if you have drunk plenty of water as this limits damage to surrounding areas. This one day the nurse asked me the usual question and I replied, "If I drink any more water nurse. I shall look like a flaming camel". Back came the reply, "Would that be a one humped or two humped camel". Made the whole experiance of treatment so much easier.

I was very lucky and my PSA is still very low four years after finishing all treatment; thanks for asking. I got my Immodium from my local chemist shop and I used the instant type as it does what it says on the can (or in this case the packet)  and works within an hour.

Take care, sorry about the house work, my wife allready has me doing the vacuming and I am absolutely hopeless at ironing ha ha. Sending kind thoughts and best wishes your way, Brian

What a way to start November

1 Nov 2015 16:51 in response to Battling Babe

Hi, I too have a 4 hour round trip into London.  Standing the whole time on trains which sends me into meltdown for a few days before I go.  A year ago when it was suggested I have radiotherapy I couldnt face 6 weeks, every day, of this journey, but my specialist nurse told me that a few other people got the 7.00am train and she was sure it would be a lot of fun.  Now that was something I couldnt get my head around!! My oncologist told me if I didnt have the radiotherapy the cancer would come back and there would be nothing they could do for me and the pain would be excruciating!  She then left the room and sent in a junior doctor. 

Wish I could help with your housework but I can't even do my own!  :-))

What a way to start November

1 Nov 2015 17:18 in response to woodworm

Hello again Brian.  Yes, having friendly staff makes such a lot of difference.  When I had to go in for the investigation, they forgot to arrange an overnight bed for me and their attitude was almost as if it was my fault.  A bed was eventually found in a private room.  Goodness me.  I had edible food and staff kept coming in to talk so much so that I wished they would go so I could get some sleep.  After my operation, I was put on a ward.  The food was awful and the same staff who I couldn't get rid of before didn't even say hello unless I spoke first and then they just answered and left.  My radiotherapy is to my pelvis so, like you, I have to drink like it's going out of fashion but if that is going to help, then I'll certainly do that.

Do you mind me asking which hospital you were in?  The staff there sound so caring as well as professional.  It does make all that difference, doesn't it?

So as you're refusing to do my ironing and vacuuming I shall have to get myself well watered and rush around like a lunatic trying to at least get some of it done before it all starts again tomorrow. 

What makes it even worse is that the DLR staff are supposed to be going on strike on Tuesday and Wednesday so I think I'll take a tent up there and camp overnight as I've no idea how long it will take me to get up there and back home again.

Do take care.

BB

 

 

What a way to start November

1 Nov 2015 17:37 in response to Pauline4

Hello Pauline

I'm sorry that you're going through all that.  It certainly is no fun at all travelling by train at any time these days, but certainly not at 7am.  What a ridiculous thing for your specialist nurse to say.  And the comments from your consultant is certainly far from caring.  As it's a London hospital you go to, it sounds very much like the one I go to.  They may have the technology, they may have the equipment, but the attitude of some staff leave a lot to be desired.  The ones I have come across are very fond of telling me what I should be doing/able to do when they, themselves, have not been through it and haven't the faintest idea of the real side effects and how it affects us and the way we feel.  I asked my consultant why I was going light-headed for a couple of days after chemo and was it anything to do with it.  I don't know, I've not heard of that before, she said, before she turned round and started tapping on the keyboard and I was "dismissed".

I'm of an age where people used to have faith in the medical profession and even if they told you to do something really daft (by today's standards) you would do it because you just knew you would get better.  Oh, I must try not to think like this.  I have another four weeks (if I can stand it) to go.

I wish you well with your course of radiotherapy Pauline.  How many more weeks have you to go?

Do take care.

BB

 

What a way to start November

1 Nov 2015 17:54 in response to Battling Babe

Hi BB,

Yes, having good caring staff makes so much differnce. I was at two hospitals. Princess Royal at Haywards heath was where I was diagnosed but I had my radio therapy at the Sussex Cancer Centre. I could have driven there but as the parking was so difficult, I used my bus pass as there is a bus service which was only a five/ten minute walk away from my home and it dropped me right outside the cancer centre. So I only had about an hour to get there. I have calculated since, had I used my car I would have travelled about a thousand miles just to get my radiotherpy treatment. This saved me a small fortune in petrol and parking charges.

I also met some wonderful people as patients and I am still in contact with three couples.

Take care, Brian.

What a way to start November

1 Nov 2015 18:05 in response to Battling Babe

Ah, no BB, I never had radiotherapy and then refused chemo too.  I was given hormone therapy instead. Last time I saw the oncologist she said she didnt think the chemo would have worked anyway.  Mmm I think it does sound like my hospital - would never go as an in patient again!

Well I didnt know about the strike, thank God you warned me.  Will have to drive to an underground station on Tuesday when I have my appointment for the results of my scans. 

Good luck with the radiotherapy.  Will be thinking of you!

What a way to start November

1 Nov 2015 18:41 in response to Battling Babe

Hi Babe

You are having a bad time and with a consultant like yours, makes my blood boil that they can be so inconsiderate.

I was treated for Endimetrial cancer that had spread to a lymph node in my groin so after chemo was offered radiotherapy.  I was told of all the possible side effects and to report any as soon as they happened, the treatment was for 20 sessions once a day for 5 days a week.  I started with diarrhoea almost right away but as I had been told I went on a low fibre diet - which basically comprised of eating junk.  No fruit, no brown anything and only a few veg  beans, peas, sweetcorn and green veg were out. Tomatoes without the skins and seeds were ok and a small portion of potatoes in fact the nurse said its the only time we encourage you to eat unhealthy. I was also given emodium tablets once the diarrhoea started and also strangly fibregel which if for constipation but taken together it sort of worked.

They told me that I would get tired and not to resist the tiredness but go for a lie down.  All of these things you should have been told.  I also started taking vitamin and iron tablets but that was just me.

I cant tell you it gets better but with the diet and medicine it was controllable.  The rushing to the loo lasted longer than the treatment but has eventually  gone back to normal (I finished my treatment in mid May). I am careful what I eat before a long trip out though, just in case.  The doctor told me to introduce food back into my diet gradually and if anything really upset me then cut it out again for a while. 

I dont know what your cancer is so you may have to check this out before you try any of it.

Also if you are having treatment to the pelvic area have they mentioned using a dialator after treatment has finished?  Have you got an assigned McMillan nurse you can contact and talk to about this.

As for the cleaning and ironing sorry cant help just about caught up with mine, although Hubby does the vacing and has learnt how to use a duster he is hopeless at ironing so t-shirts got tumbled then put on hangers so the creases drop out.

Keep on battling

What a way to start November

1 Nov 2015 20:39 in response to woodworm

Hello Brian

Oh yes, what would we do without our Freedom passes?  Even with mine I still got lost each day last week as I was trying different ways to get to the hospital.  Two buses which is the easiest for me take about two hours and because of road works almost everywhere in central London, there is often only single lane traffic.  Consequently a ten/fifteen minute journey now takes fifty minutes and because the buses are so behind schedule, they terminate at earlier points in order to turn round.  Last week I found myself chucked off the bus at the Tower of London which made me quite paranoid as I thought they hate me at the hospital and have told the bus to send me to The Tower!  If my little fat legs hadn't been hurting so much and I had been more awake, I would have enjoyed looking at Tower Bridge and The Tower but I  just wanted to get home and collapse in the chair.  I made it by finding Tower Gateway DLR, changing at Shadwell and taking it from there.  Perhaps I should try a Boris bike once my legs start doing my bidding instead of their own, or even a motorised wheelbarrow.

It's been nice "talking" to you Brian and I'll say night night for now.

Take care.

Carol (BB)

What a way to start November

1 Nov 2015 20:57 in response to Pauline4

Hello Pauline

How are you getting/how did you get on with the hormone therapy?  Are there many side effects to it?

I hope your scan results show an improvement on Tuesday.  With a bit of luck the DLR strike may be called off.  I have checked and it seems there will be a bus replacement service for some areas, if the strike goes ahead, but I don't know exactly where.

Oh, by the way, wonders will never cease.  I asked at the hospital reception how I would find Cheapside.  I had been told that there were quite a few shops along there and although I can't yet walk that far, I thought I could get a bus and be nosey out of the window in readiness.  The receptionist said he'd never even heard of Cheapside.  I came out and saw a (horror of horrors) traffic warden so I asked him.  He was so helpful and at one point I thought he was going to take me there.  It's only a few minutes from the hospital so the receptionist should have known.  I caught a bus along Cheapside to The Bank and came home via DLR.  So although I've lived in London all my life, I'm still finding strange little ways to get to places.

Once again, good luck on Tuesday.

It's been nice "talking" to you Pauline and I'll say night night for now.

Take care.

Carol (BB)

 

 

What a way to start November

1 Nov 2015 21:18 in response to river56

Hello River

Thank you for your very helpful advice.  I, too, had endometrial cancer which had spread to the lymph nodes and even though I know it does me no good at all, I still wonder if things could have been easier for me if I hadn't had to wait seven months before I was diagnosed!

Yes, I'm due to see the "naughty nurse" about a dilator on Wednesday and have even been given details of a "women's only" emporium.  That made me smile (a bit, anyway) because, to be honest, I have no colour at the moment, I have no hair to speak of (I wear a wig and a hat pulled down over it), my legs don't let me walk very far or fast and I feel slightly Tom Dick most of the time since radiotherapy, so who, in their right mind, would want to be intimate with someone like that?  Yet I have still been given these things which now makes me think that maybe there is light at the end of the very long and winding tunnel after all.

Night night River and do take care.

BB

What a way to start November

3 Nov 2015 18:25 in response to Battling Babe

Well dont fancy no ironing or housework. But just joined this group. Can say to you that i have completed radiotherapy on july 31st, and i had similar feelings of fatigue and exhaustion at start of treatment and would fall asleep on the way home and as soon as got home. It does get easier!! But i have still got bone pain and some tiredness but not as much as while having the treatment and first month after. I do take letrozole which also causes bone pain. You will feel better after its completed and gradually get some energy back.

What a way to start November

3 Nov 2015 19:39 in response to Battling Babe

Hi, Carol, took me 2 1/4hours to get to the hospital today and then had to wait for 2 hours for my appointment and another 2 hours home.  And, on top of that I had bad news because my tumour has nearly doubled in size.  So I have stopped the Letrozole.  I also arranged for my care to be transferred to another hospital.  Life is full of ups and downs and we have to weather them and get on with it.

I hope your journey today wasn't too bad, Carol, and that your treatment went well. x