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First day done & dusted

pializ
Posts: 257
Joined: Nov 2012

So far so good! Taking this day at a time & trying to be prepared at the same time.

Radiotherapist advised me to use aqueous cream or aloe vera. Told me with aloe vera I could apply in the morning but no need to remove it prior to radiotherapy. I'm on prophylactic antibiotics too for the duration of my treatment.

I slept better last night waking today at 6:30 (it has been 4:30 for past week or so).

Unfortunately my Oncologist is not a Positive Polly, and my mood has dipped after each time I see her. She has even told me that I might not get my last chemo as I might not tolerate it. So that makes me worry that I am not as strong as others as most do seem to get protocol. It takes me a while to bounce back from news like that.

I have to rely on my own inner strength and eat & drink well to endure this brutal treatment (thank goodness it is relatively short).

Thank you all on here for you unswerving support & advice

Liz

LaCh
Posts: 509
Joined: Dec 2012

I've just started treatment as well, today will be day number 3. My advice about negative spins or predictions from ANYONE, stranger or doctor or anyone in between is to remember that no one knows what lies ahead, no one can tell you what you'll experience or how well you'll tolerate any given treatment. If they knew all that, they'd also be able to give you the winning lotto numbers. Listen judiciously and then put such things were they beling, in the "Oh, yeah? We'll see," file. Because no one knows what lies ahead nor what sources of untapped strength lie buried inside a person.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I'm sorry your oncologist is a downer. I think it's unfortunate when a doctor cannot give a person hope. I realize they cannot give guarantees, but you are just beginning and to already frighten you by telling you you may not be able to get the second round of chemo is, IMO, unprofessional. Unless this statement was based on some underlying condition, I think your doctor just should have not said this. I will say, however, that I know of several people who did not receive the second round of chemo and seem to be doing just fine. I hope you don't have to join that list and will get both rounds. My best advice is to remain positive and really determined to prove your doctor wrong. In order to do this, eat well, rest whenever you can or when your body tells you to, and surround yourself with only positive-thinking people. I realize you can't fire your doctor at this point in time, but the other people in your life need to be supportive and not at all negative. People who can't be need to be off limits, at least for now. I found that helped me very much.

As LaCh has mentioned, strength is something we sometimes don't know we possess until we really need it. You know the old saying--"A woman is like a tea bag. She never knows how strong she is until she gets in hot water." I think you can do this--both rounds!

pializ
Posts: 257
Joined: Nov 2012

Hi Martha, As far as I can make out, it is because of small bowel area that needs to be irradiated, but it's hard to pin her down on that. Asked what will determine whether I get 2nd round of chemo, she said it would depend on weight loss. I could in fact benefit from a bit of weightloss, but am not going to try during this time. Am following low fibre diet (although not much info on this over here in UK & Onc has given me no guidance at all. She will only refer to dietitian WHEN I have lost weight!!!! That is NHs, so no chance of firing her. She is who I get. Negative Nellie. She upset me so much last Wednesday she spent 40 minutes on the phone with me Thursday am. Not reassuringly, just information as to where I can get treatment for radiation enteritis!!! Positivity is not her forte I guess. I get that on this site and Macmillan. (& I will do my utmost to prove her wrong). Just settling into treatment now though and tying to put a bit of ME into everyday, whether that is painting (walls, nothing exciting or too strenuous) or family history etc.

The people who did not receive second round of chemo......do you know why that happened?
Naturally I am concerned, but I cannot predict my response to treatment as yet. It will be what it will be.

I love the tea bag analagy too. Used that on Facebook the other week, because I am strong (like my tea that way too).

Thanks Martha, good advice as usual
Liz xxx

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

The people I mentioned who did not get a second round of chemo were just a handful--most are able to complete both rounds. However, Mitomycin can be difficult to tolerate, especially for anyone who is HIV+, and sometimes has to be reduced or even omitted during the second round of chemo. There are some people who also can have adverse reactions to 5FU. I still think you can do this and show your doctor that you aren't going to let a little chemo get in the way of curing your cancer.

pializ
Posts: 257
Joined: Nov 2012

Hi there, thanks for your supportive response. Most people are. I have met some fantastic people during this journey, just that Onc is Negative Nellie. Oh well, as long as she gets me to cure point that's all I need. I have so many more positive people in my life (online and in the flesh). I AM stronger than she thinks, & I am taking care of myself as best I can to give the treatment it's best chance of working. As for predictions, you are so right. As we can see, so many have got through this, maybe not all straightforwardly, but they have got through it. I don't see why I am so different! I am a tough cookie!

How are you doing with treatment? Are you having any side effects yet? I hope you have some practical and emotional support during your journey! What dog do you have? We have 2 English cocker spaniels. Like chalk & cheese. Meg is quiet and content whilst Gwen is a little bundle of mischief.They are very entertaining!

Thanks again for taking the time to respond
Liz x

Marynb
Posts: 1134
Joined: Aug 2012

I don't think your doctor should be saying negative things at this point! Use your sense of humor with someone like that. If she says something like that again, just smile and tell her that you are a lot stronger than you look and flash her a muscle! Stay positive.

Also, I would not have any lotions of any type on my skin for radiation treatment. They were very emphatic about this at the hospital that I went to, and it is a top rated hospital. Why would you even need it during radiation?

Hang in there! You are doing great and soon this cancer will be a thing of the past!

pializ
Posts: 257
Joined: Nov 2012

I guess it has taken me a while to get to know how to deal with Onc. Like most people I guess I have been caught unawares with a) the diagnosis & b) I work in the NHS as a mental health nurse, and not used to 'cold' people who are supposed to be in a 'caring' profession. Now I feel stronger again (no-one can keep me down for long. I am due to see her next on 2nd January. I could wish her a Happy New Year! After all is said and done, she isn't on my friend list (nor would be), just get her to cure me.

Apparently water based products are OK to use????

Thanks so much for responding. Your support means a lot
Liz xxx

eihtak
Posts: 822
Joined: Oct 2011

Liz, they are all right about that inner strength. Use that negative comment against her to prove her wrong! Maybe thats even what shes looking for. I had a multitude of issues going on, and at one point my surgeon (who I highly respect) turned negative on me....I really believe now he knew I was competitive and just wanted to get me fighting. It worked!! We are here to help 24/7 when you need. As always, all in my prayers.

pializ
Posts: 257
Joined: Nov 2012

I am a tough cookie & I will do my best to prove her doubts unfounded. I am eating and drinking as well as I can to help bowels during this brutally caustic treatment.

It's good to know so many of you have got through this and have the good grace and kind hearts to support those of us facing/going through treatment and beyond. My turn to do that soon.

Thanks you
Liz xxx

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

Seems odd that she would say weight loss could prevent you from getting second chemo, unless you were underweight to begin with (which you say you are not). I've only heard about fevers and low blood counts as reasons to stop chemo. I too had a negative Dr. - the Radiation Oncologist - he seemed to think the way to go was to tell me the worst that could happen... Repeatedly..... I don't understand why any Doctor would do this.....But I think you have the right attitude - PROVE HER WRONG! And maybe as someone else said - it's good to get mad....... I think it makes you fight harder! My thoughts are with you - this is a tough time you are in.... Keep leaning on everyone here....

pializ
Posts: 257
Joined: Nov 2012

Ha! I was losing weight with Slimming World (just started in USA) which is just healthy eating. I was still following it (loosely) prior to referral for cancer (my head was all over the place after that). I could have done with losing about 21 lbs (I had already lost 21 lbs). So thank goodness I didn't reach my target weight. Gives me a bit of spare to 'play with'!
With fevers and low blood count, who can tell which patient will have problems??? Weight loss....well I guess that's on the cards for all of us. What I don't understand if that was her criteria for me not having second chemo, why not be proactive and give me some diet advice? Thank goodness I have got that from all of you on this site! At least I can be proactive. But no fruit and veg......now that is harsh! This time of year those gorgeous clementines, pomegranates etc. & sprouts. I just love sprouts (I know not everyone does lol. Still, a girl has to do what a girl has to do (especially to prove someone wrong). Thanks for allowing me to lean x

AZANNIE
Posts: 372
Joined: Mar 2011

Sorry about your oncologist. Don't know how she would know about your tolerance to chemo. I was surprised that I tolerated chemo well. I was probably down to 90 pounds by second round of chemo - small but mighty is my motto. I'm 18 months post treatment now.
Yes, thank goodness the treatment is short!
Best of luck to you!

Ann

pializ
Posts: 257
Joined: Nov 2012

Maybe she just wants to make sure I understand it might not work out for me, but hey! Shouldn't Onc be supportive & encouraging? I don't mean give false hope, but no need for negativity. This is a hard enough diagnosis and journey as it is! Anyway, as long as I do my best (& try to avoid too much weightloss) that is my contribution. The rest is up to the protocol. If she says about no second chemo I will get second opinion at that point!
Thanks
Liz x

pializ
Posts: 257
Joined: Nov 2012

I recently acquired copies of letters to my GP from my oncologist,  in one letter, she said she had explained that omitting the second round of chemo would reduce the risk of late effects to my small bowel (They were treating a much larger area than usual due to a lymph node near the  pelvic wall.....it later turned out to be most likely my right ovary, but that's another matter), but that I insisted that I wanted the second round as per the standard protocol.  In the UK, it seems that standard does not include mitomycin in the second round of chemo. Anyhow, I had my both rounds, & coped with treatment incredibly well. 14 months post treatment,  & I have multiple bm's most days, but other than that, and some worsening of pre existing arthritis,  I am coping just fine. Now and again the enormity of what has happened can overwhelm m, just for a few moments. I can be reminded that my mortality remains more 'on the line', but I quickly remind myself that is just a thought at this point, & not a fact. Sadly, my little cocker spaniel has just been diagnosed with transitional cell carcinoma of her bladder. It is inoperable. But we will enjoy each & every day we have her. Cancer sucks!

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