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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

Michelle, just read your good news, I'm so pleased for you xx

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Re: April 2018 Chemo Starters

It’s good to hear life is moving on for everyone.

Gygi I’ve just re read your post when I first read fod (finalchemodate) I thought it was a type of medication 😂 I use my phone and the writing is so small! That’s my excuse anyway!! I’ve heard a couple of people say their hair has come back white or with a Mallin streak. I think it does return to normal. I can understand why you don’t want everyone asking about summer. We have certainly had an unusual summer, hopefully out first and last like this! At least work will be a distraction from all of this especially as you obviously enjoy your job.
Dorabel it’s great to hear you cheering your hair on! I think once it gets past the first cm or 2 the frazzled ness will disappear.
Christine well done on changing this dressings I’m glad recovery is slowly but surely happening.

My surgeon rangbyesterday with the pathology report. It was completely clear, no cancer in the lumps or lymphs! So even though the chemo was hideous it worked. Although I do wonder if I needed to 2 FEC. Could I have just had 4 Docetaxol with Perjeta and Herceptin for the same result? I will never know but it will be interesting to follow how future treatments are given.
Radiotherapy and then I’m done! (Apart from the herceptin injection!)
X
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Re: April 2018 Chemo Starters

Hi everyone. Glad to see life is getting more back to normal for everyone as the chemo effects recede.

gygi, i hated the injections and got quite down towards the end, dreading do it. so glad to have finished those and do feel for you. we do what we have to do but don't have to like it. Hope you can stop soon. i have so many bruises on my thighs i am wondering if a clear area will be found for herceptin jab on friday.

 

I had to change the tape dressings over my scars this morning and hated the idea but luckily it all went well. i was told to take the tape of in the shower and give the area a wash with perfume free soap before reapplying. i took ages easing the tape off but all looked ok except for the area where the last drain was which is still oozing slightly. New tape put on is a bit more patchwork but does what it needs to do. Belly button still not healing but i have no feeling so at least no pain. plan a short walk alone this morning. progressing each day but very slowly.

 

Michelle all the best for the 13th. Hope that will be the end of the major treatment. 

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Re: April 2018 Chemo Starters

Hi guys hope you are feeling ok today. Thanks Michelle I'm feeling a lot better now. Pottering around, legs are very achy (herceptin side effects I think) so I can't always sleep well. Taking stuff to try to alleviate it. Hopefully as I get used to herceptin more it will fade.
My hair is thickening up but coming back white! Lol I start work Monday (inset) Tues I'm off & also seeing the oncologist. I'm not looking forward to the first few days of "how was your summer?" It was what it was .... I have slight neuropathy in my fingers of my right hand pins and needles but also hoping that will fade as I move further away from fcd (finalchemodate) Dorabel glad you enjoyed your hols X Michelle I'm going to start swimming mid September. Hope your recovery is going well Fiona. Christine I think you have finished your blood thinners! I'm envious I still have to inject every night. Take care Gigi x
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Re: April 2018 Chemo Starters

So glad you are recovering well from surgery, Michelle.  The exercises will help with straightening your arm, it just takes a while.

 

Docetaxel seems to be cumulative in its side effects, which could be why the awful taste in my mouth is gone while yours is still there.  I had only 3 doses.  My nails are in a bad state & my fingers still hurt.  However, I’ve been on holiday & that was the best thing I could have done.  I’m wearing a wig most of the time as my hair is still only a faint fuzz about 1cm long.  The ends are frazzled, probably because the first growth was so damaged by the chemo.  Just the fact that it is growing at all cheers me up.

 

I hope you get good news on the 13th.  Fingers crossed for then.  xx

 

 

 

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Re: April 2018 Chemo Starters

Hi I thought I’d check in to see how everyone is doing?
Christine how is recovery now the drains are all out? Hopefully you are finding things a little easier.
Gygi how is your recovery from chemo? Has the fatigue finally let up now? You must be going back to school soon, how do you feel about that? Are you having radiotherapy or is that it for now apart from herceptin?
Dorabel hiwnis that final cycle going? I hope the se’s have been minimal, you must be almost finished. My hair has finally stopped falling out now and has been growing back well, although my scalp is still visible in parts. I know I said the mouth taste had gone but unfortunately it hasn’t! Some days are worse than others and it’s worse in the evening but it hasn’t quite disappeared, although I did have 4 cycles of Docetaxol so maybe it’s taking a bit longer. At least we will both have a few weeks break before starting rads.
Fiona how are you doing since finishing chemo? Have all of the SE’s gone now? How are your aches? Are you done with treatment now? I hope you are back to creating your pottery and feeling well.
I am 12 days post op and everything is going in the right direction. Drains and clips out, dressings off. I’m doing my exercises but can’t straigthen my right arm properly yet. I’ll keep trying. I’ve heard swimming is good for the tightness and numbness I will try that after I have seen the surgeon. My next appointment is on 13th, I will get the results then so here’s hoping the chemo killed it all!

Happy recovery to all xx
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Re: April 2018 Chemo Starters

Sounds as though there’s still confusion at the hospital, Christine.  It’s good that you got some reassurance about the pain.  If it’s any help, I had nerve pain down my arm after lymph nodes were removed.  That was at the beginning of February.  The pain, along with the tingling and numbness has gradually faded and is almost gone now.  It has taken ages but I’m very glad it’s happened.

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Re: April 2018 Chemo Starters

The appointment that was booked should have been a follow up with the consultant but not sure what happened as when we got there it was a dressing change appointment (I already had one booked the following day which i had to cancel). the nurse was very reassuring and said it all looked healthy and was probably nerve and muscle pain. It does still hurt quite a lot and yesterday i sneezed and actually screamed with the pain that shot through my breast. Hopefully it will all die down soon.

 

I am using a blood thinner (tinzaparin) that makes me very itchy so I am not really sleeping that well. Using one a day allergy tablets i bought over the counter but i am needing to take a second one in the middle of the night or i will scratch my skin off. Anyone else had to do this or had this problem? Only 2 more doses to inject so hoepfully all will clear up after that. 

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Re: April 2018 Chemo Starters

Hi Christine how are you today? Has the pain subsided? Hope you are able to sleep ok. Thinking of you Gigi x
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Re: April 2018 Chemo Starters

Received a call from the hospital today as a follow up to my complaint and she was very appologetic. I do feel they have taken it to heart and agree i was failed on monday and left alone when suport should have been available.

 

Now the drain is out it is a lot easier to do things so i am moving around more. i did move strangely last night to get out of a chair when a sharp pain went through my right breast. Seemed to be when i put weight on one hand/arm. it happened again tryint to get out of bed this morning so phoned the hotline to make sure it was ok. They don't think there is a problem as there is no sign of blood or swelling. I have an appointment anyway tomorrow so will check this is ok. Feels a bit tender on the top part of the breast. Can't find anything online that mentions this and it is so difficult to know what is ok and what needs attention. i feel like i panic about everything. Assume i will relax a bit once i get used to what is what.

 

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Re: April 2018 Chemo Starters

Oh this is good news, Christine.  I hope the inflammation goes now that the drain is gone.  After the awful time you had, this must be a relief.  It’s not right that you had such a runaround, and at a time of such acute vulnerability.  Now that the surgery is done, things will, I hope, get better.

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Re: April 2018 Chemo Starters

That is really good news Christine. I hope the rest of recovery is smooth for you x
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Re: April 2018 Chemo Starters

Yeah! Good to hear. Hope you rest well tonight x
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Re: April 2018 Chemo Starters

well drain out as apparently the body can start producing additional fluid because the drain is there so the fact it went up is an indicator is had to come out now. The site is inflamed but not infected so all good. So glad it is gone. 

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Re: April 2018 Chemo Starters

Hi Christine, hope it comes out today and everything is okay. Good luck for this afternoon and wishing you an easy journey to the hospital. Thinking of you x
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Re: April 2018 Chemo Starters

Finally got to chat to some one who contacted the consultant and the drain is coming out this afternoon. I think there are concerns about it. Volume last night double the night before and seems the liquid is very red. Need to get to the hospital (one that does have parking thank god) by 2 and will see what happens after that.

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Re: April 2018 Chemo Starters

also the problem in researching online is that there are so many different sorts of drains. Mine is a small plastic sphere (under vacuum i assume) that is connected to a bag. Once a day i reverse the clips top and bottom so the contents can be squeezed out and into the bag to measure before putting the clips back in palce and replacing the bag with a new clean one. I don't have a big bottle  

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Re: April 2018 Chemo Starters

Thanks everyone. Feeling a bit more up beat today and determined to get answers. I will check out that download Gygi. Guys seem to have better info than the Marsden on there website. When i had my chemo port fitted Guys had really good info that i couldn't find elsewhere.

 

I did call the hotline again this morning just wanting the answer to the basic question how do i get new bags. The girl seemed to be the sort to get things moving and asked a number of questions no one seemed bothered with yesterday. It feels like she will get me answers but time will tell. The problem with living in a town with a satellite chemo unit of a major hospital is that the main parts of the hospital are some distance away and not easy to travel to with DIEP surgery. My husband is working from home this week but has needed to do so much for me I don't like to have to ask him to transport me to unnecessary places.

ktk
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Re: April 2018 Chemo Starters

Hi Christine, hope you have a better day today. When I had my drain the Community nurse came and removed it st home. They gave me a yellow toxic waste bag and I had to arrange for the council to come and collect it. I’m sure human body waste does not belong in the general waste, but nappies go in there so maybe it is ok! Kxx
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Re: April 2018 Chemo Starters

Hi Christine
hope it get resolved today hopefully by the hospital's initiative or as you say the local hospital. You shouldn't have to be ringing around and trying to sort this yourself. Guys have a booklet I found quite helpful if you haven't got one already it is download able and called going home with a drain. Thinking of you x