New to this site.: Hello, having read some of the... - My Ovacome

My Ovacome

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fionai profile image
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Hello, having read some of the blogs, I have decided to try blogging myself.

I was diagnosed with stage 3c in October 2011, I had surgery followed by 4 1/2 sessions of carbo/taxol (reacted to 5 th carbo).

Had the all clear in August, but ct in October showed suspect area in pelvis. Ca 125 was 14.

Ca is now on the rise again, it is now 40, I have bloating, and abdominal discomfort.

I am due to have a ct and see my oncologist on the 1st February.

So far this sounds ok, but I only have one kidney and am experiencing kidney pain, I have been advised that it only just survived chemo, the last hitch in this tale is that have had back surgery in the past for herniated discs, and have now been advised that I have a bulge pressing on the spinal nerve .

I am now wondering what options I have, is it worth putting my kidney through more chemo, and should I have another back op?

If only things would go wrong one at a time!

I have a wonderful husband, but he has a global job and is due to fly to the states the day after I see my oncologist, as for the other man in my life, he is a very stroppy 16 year old who has all the trates of Harry Enfields Kevin.

I have decided to write this as a way of keeping the monkey on my shoulder ( my name for my cancer) in check, and not sending me round the bend.

I realise this is a new way of living life and any tips would be great.

Thank you

Fiona I.

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fionai
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15 Replies
BusyLizzie profile image
BusyLizzie

Hi Fiona,

I know how hard this journey is when your husband is working. I was dreading the end of Christmas and losing my husband back to the rat race again. When you are together, you feel together you can tackle anything and life is not being wasted.

I presume you were diagnosed in Oct 2010 rather than Oct 2011 and that was typo? The kidney and back problems must make this a triple sized problem for you, and my heart goes out to you. Are there chemos that you can have that are easier on the kidneys? An ovacome nurse may be able to advise you about some of these points, but I am sure your oncologist will be ontop of that anyway. I guess if I were you I would discuss this quandry with as many professionals as I could (specialist nurse, surgeon(s), oncologist and GP) and then make a decision based on which I proiritize as the worst issue for quality of life which needs sorting.

I am a fellow oc 3c sufferer with no remission from first line chemo so I know how horrid this all is without the added issues.

Take care, thanks for blogging and please keep us updated as to how things are going. The best of luck for Feb 1st, and I say when you are ready to blog we will all be here.

Love Lizzie

X

P.S. I hope Kevin has a Perry sidekick!

fionai profile image
fionai in reply toBusyLizzie

Hi Lizzie

Thank you for the reply, I have confused my diagnosis date, I am afraid that I am not a simple case.

In october 2010, I had back surgery, this was followed by further spinal work in december. It was in february having had a pelvic and spinal MRI that my cancer was spotted, I had no signs or symptoms, but that is the nature of this beast.

I will take you advice and ask more questions, I think the best place to start is with my GP, as he receives all of the letters from my medical team.

Aside from this dire topic, who is Perry, I have not seen much of Harry Enfields programs, but I think hubbie would like to strangle my son, as they have been trying without success to fix a moped.

Let us say that words were exchanged, and when I grabbed the dog to take her for her walk, fists looked like they would follow.

Oh the joys of living in a household of men!

Take care.

Fiona.x

BusyLizzie profile image
BusyLizzie in reply tofionai

Hi Fiona,

Perry is Kevin's best friend and is played by Kathy Burke brilliantly.

This was the shortest clip I could find on youtube. Perry is on the back seat. They are using 'Dad's taxi' to come home from a party.

youtube.com/watch?v=I5KrBYm...

I have no children, but from what I hear it could almost be a documetary about most teenage boys!

Love Lizzie

X

fionai profile image
fionai in reply toBusyLizzie

OMG!!!

What a hoot, thank you Lizzie.

My teen is a cross between Perry and Kevin, he grunts a little more than Kevin.

I think I will show him that clip, I may get a reaction, or even a smile!!

Take care.

Fiona.xx

BusyLizzie profile image
BusyLizzie in reply tofionai

Glad it made you smile. What you have to realize though is when they are with Perry's parents, the roles are reversed.

Love Lizzie

x

wendydee profile image
wendydee

Hi Fiona!

It must be hard to face this when your husband has to go away. If you get to feeling a bit in need of positive ideas, type "Keeping positive" into the search box at the top of this page, also there are hints about other ideas on there in back questions and blogs. There's quite an archive! All the best. It's good to have someone on here to "talk" to when you need a friendly ear.

Love Wendy xx

fionai profile image
fionai in reply towendydee

Hi Wendy,

Thank you for the tip, I will take a look at the archives.

Positive is something I have in buckets, it is just knowing which bit of me to be worried about. I am starting to feel like I am past my sell by date!

Take care.

Fiona.x

wendydee profile image
wendydee in reply tofionai

Never past our sell-by dates, well not for a long time yet! Although some days I do wonder about my little grey cells going down the pan ...another story! I'm glad you're feeling positive and love your sense of humour!

All the best with whatever comes next

Love, Wendy xx

fionai profile image
fionai in reply towendydee

Hi, thank you for getting my sense of humour, what else can you have in this bazar situation.

One good thing about this is that I am having a ball, now that may seem strange, but things do not bother me so much now, e.g. road rage.

I have forgotten what little grey cells are, I suppose that is chemo brian (my excuse).

Hey, what ever comes next can only get better (I wish)Take care.

Fiona

My husband also travels to work. Please post here as often as you want to. I too have compromised kidney function, effectively about one and a half kidneys - I have been assured that there's lots of things that can be done to protect kidney function & some chemos are gentler that others.

I'm not a professional, but you do sound quite reasonably down. It might be worthwhile to see a counsellor or get some anti depressants or anti anxiety meds from you gp.

As for your 16 year old, he might benefit from some straight talking from both you and your husband. Equally, he's probably feeling pain and distress also. Again, a counsellor could help. I think Macmillan have some who have specialist training to help with children.

Take care,

Chrissie

fionai profile image
fionai

Hi Chrissie,

Thank you for the reply and advice.

I realise that my blog could read that I sound down, but I am just trying to decide a plan of action concerning my diagnosis.

I am an ex staff nurse, this at times does not help.

I have been living with the shadow of cancer since 2006, when I was diagnosed with adinocarcinoma of the salivary gland, that resulted with having part of my jaw removed, my kidney was removed a year later and the remaining one has only just survived the last lot of chemo.

I do have a counsellor and the last thing I am is down, I am just used to taking a proactive stance concerning my medical care and at the moment my body seems to be having a field day concerning bits going wrong.

My back is the main issue as I am very active and refuse to sit around, I need further spinal surgery and I am not sure if that would be a good idea if I am going to be having chemo soon.

As for my teen, you are quite right, I will enquire about the mac support for him.

Take care and thank you once again.

Fiona. X

nandi profile image
nandi

Just wanted to wish you all the best. I know what you mean about the need to be active, walking with my husband and our dog is the best alternative therapy I have. Hope things get resolved quickly for you. I agree with Chrystnh your 16 year old is probably very confussed and worried.

Best of luck

Dorothy

fionai profile image
fionai

Hi Dorothy,

They do not say mans best friend for nothing, I spend so much time outside with mine, and it is so sociable.

I am seeing my mac counsellor tomorrow, I will enquire about the teen support.

Thank you for the reply, this site is a great help.

Take care.

Fiona.X

Lily23 profile image
Lily23

Hi Fiona

I'm not sure if this is of any use to you but yesterday when at hospital with mum, her consultant explained that as Mum has kidney problems, he is only to give her Taxol this time - - simply because it's the liver, and not the kidneys, that take the hit. It's the carbo that is synthesized by the kidneys, taxol by the liver.......

I didn't know this so it may be worth bearing in mind.

The best of luck to you.....

Fond Regards

Lily.

fionai profile image
fionai in reply toLily23

Thank you for that Lily,

I am unable to tolerate Taxol, as I was on the cargo/taxol regime and had a lot of side effects due to the taxol.

As for the carbo, I had a severe allergic reaction to that and only completed 4 cycles of it.

I do not believe in doing things by halves, hey ho!

Take care.

Fiona.

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