*^*^*^*^COPING WITH CANCER --- <<< SUPPORT THREAD >>> ^*^*^*^*^*

[KittyLetteMeEatAnEasterEgg]

Hi,

i thought it might be a good idea to start one of these as its something that affects so many people and its just devestating. Hopefully we can support each other

This is a thread for anyone who is being affected by this awful disease, whether it is you, a family member or friend that is diagnosed feel free to come her and share how you feel, im sure as in true mumsnet spirit there will always be someone here to listen .

xxx kitty xxx

hi all, been having a few 'head-in-the-sand' days and ignoring this thread - it's all catching up with me again today so am coming to post too.
My mum was diagnosed with stage 3c ovarian cancer at the end of January. It was totally, utterly out of the blue - she is (well, was ) a fit, active and v. slim 57 year old who had never smoked or drunk to excess or anything. She went to the GP after work one day because she'd been feeling really bloated for a week, was admitted to hospital that evening and had the debulking & staging surgery 5 days later. She's just had her 3rd round of chemo.

My parents live in Germany and I'm in N. Yorks., so it's a bit difficult to see them but we do get together lots and talk on the phone all the time. I went to see her shortly after the surgery and that was really hard.

I've not seen her since she started chemo - she was v. ill after the first two rounds - as it turned out she was severely allergic to one of the medications - and she didn't want to me to see her in such a bad way.
We're now all going over to stay with them for Easter. I'm looking forward to seeing her and my dad but I'm so nervous - she's obviously lost all her hair since I last saw her and I'm getting really stressed about seeing her with her wig on for some reason (although she has assured me that the wig is better than her real hair ever was!). I also find it just about impossible to plan more than three months in advance and the fact that ovarian cancer is an absolutely shit cancer to have looms very very largely in my mind.
My parents are wanting me to find a villa on Tenerife to stay in for the Christmas holidays for us and them (we usually holiday together) and I just can't bring myself to do it. After all, the chances are high that my poor mum will be back on chemo then. But I can hardly say that!!!
I just feel like my whole life has been turned upside down by this fcking cancer. My parents were planning on moving in with us after retirement and building works on the granny flat were due to start this year. My parents could always be relied upon to help us out with childcare in the future should dh and I want a weekend away, and were about to be named as guardians for the children in our wills - it broke my heart having to email the solicitor and tell her that we need to change the guardians.
I try not to think about it too much because it's just such a fucking depressing thought. I just hope I can keep myself together when we're there and cheer her up.

Geekgirl - I am so sorry about your mum. It does sound like it was diagnosed quickly though? I dont know the details though. Certainly the fact that she has had surgery immediately is a positive, if not scary and dangerous thing.

My mum, unfortunately, was not offered surgery, she was given chemo which started about 6 weeks after she was diagnosed. I beleive that this was for 1 or both of 2 reaqsons. 1. Her age. She was 65 years old, smoked up to the last 5 years before getting it (also researched and smoking is not linked with ovarian cancer), however also had a seperate tumour in her lung (which was successfully treated with the chemo). 2. It had advanced too far by the time it was diagnosed, and they knew treatment would be pallative, even though she was not told this. She did not want too much info at each stage/told me that was the case.

Certainly, she was not given chemo as quickly as your mum, no operation to remove anything, which leads me to suspect the above.

Your mum has obviously had intense treatment which will certainly be hard to deal with, and make her very very poorly, but the speed of it being done I think is something positive to hold on to when things feel tough.
I hope that makes sense. I beleive that perhaps in my mum's case the urgency just was not there.
BTW, I know how hard it is when you plan the future with your mum. My mum was moving to Plymouth to be near me and my first grandchild, to be part of her life, look after her when I went to work, be part of my life as I missed her.
Sending you big hugs and your mum lots of positive vibes.
[[[[hugs]]]]

Pavlov - so sorry about your mum too it must have been awful to have no chance of recovery. I'm so so sorry about your dd missing out on having her grandma there .

I do hope that the urgency of it all in my mum's case is positive and also the fact that the surgeon was able to remove all the visible cancer (but she had ascites which was full of cancerous cells so there will be seedlings). Ironically enough she went for a screening check-up last summer and the gynae told her that her ovaries were shrinking (normal in post-menopausal women apparently).

Good god geekgrrl, you really have had it tough.
It is awful when they live so far away.
My dad is 6hrs drive away and I completely understand your concerns about seeing your mum at easter. The physical changes are hard to ignore but the person inside remains the same. The changes are so much more noticable when you have not seen them for a while.
I really surprised myself and managed to keep my act together the whole time I was there,then sobbed all the way up the m5 on the way home.
I wish I could offer more advice but it sounds like we are walking the same pathe at the moment, so all I can offer is sympathy/ empathy.

Just found this thread, really good one to start Kitty. So sorry that everyone is going through this.

We are just taking a deep breath at the moment. My Dad was diagnosed with bowel cancer January last year, just days after my mother had a hip replacement and I was looking after her (they aren't together). He was incredibly lucky, it was caught very early and they were able to remove it with out the need for chemo or radiotherapy.

About a month later, my Mother in Law rang from Spain where they live to say that she had been diagnosed with cancer of the esophagos, which has a really poor prognosis. Her 80 year DH who had a triple bypass 3 years ago is looking after her, which is really rubbish, but so hard to know what to do. It has been a roller coaster year since then, DH has been 3 times out there to say his final good byes as she was thought to have just a few hours left. She opted for a new drug treatment combined with radiotherapy & chemo instead of surgery and amazingly, the cancer is supposedly now gone from her esophagos. She since then has had pneumonia, shingles (got into her brain & caused her to fit), heart failure & diabetes.

Amazingly she is still with us and I answered the phone to her yesterday for the first time in goodness knows how long. Her speech is very slurred, she can't walk but she is still here and hanging in there. We have no idea what the future is for her and I think everyone has given up trying to predict and are just taking it day by day.

Geekgirl, I really do feel for you so much - the distance just adds a whole new dimension to it which is really hard to deal with.

Will be thinking about everyone on this thread.

I have woken up with butterflies in my tummy. Dad's got an appointment with his consultant today.
He has just finished his first lot of chemo - the three week on one week off thing- so he has done one month.
I always get confused as to whether that is a round or a course.
Anyway, he has never had good news at one of these appointments, so I am bracing myself really.
I have no idea what is going to happen at this appointment - whether it is just a chat or blood test or scan or what. As I have already mentioned it is very hard to get any details out of my parents about what actually is going on.
It is at 2.15 and I know that from then on I am just going to be waitng for the phone to ring.
I hate those phone calls.

Oh, spudmasher, thinking of you.

Will be thinking of you today Spudmasher. I'm not sure but I am going to guess that the 3 weeks on, one off is a round and that so many rounds make a course.

good luck spud, the waiting is just horrible, isn't it?
I can really relate to a) how hard it is to get any details out of your parents, I always worry that mine won't tell me the full story and b) what you said further down about being concerned for your mum - I feel v. sorry for my dad, my mum has never been all that nice to him and has actually been outright nasty to him during the past 2 months - I guess because she is so scared and stressed and my dad is the one she takes it out on.
Hope today doesn't bring bad news for you. xx

So he has only just stared really then hasn't he?
Surely this will just be a kind of 'How are you getting along with it all' appointment?

yes, it sounds like it could well be just an appointment to see how he is doing with the chemo and everything. They don't really seem to talk more in-depth about the cancer until the current course of chemo is finished (from what I can gather, anyway).
My mum's oncologist has told her that he won't go into prognosis etc. until she is done with this course (in June).

Sending lots of kind thoughts your way today Spud - I remember how awful the waiting is, and then the torture of drying to drag anything meaningful out of my parents!

Will keep everything crossed for him too - he could do with a bit of good luck

Thank you.
I'm not at work this week which under normal circumstances would be a really good thing but the kids are being angels, the house is clean and tidy, 16 raggedy ann aprons are finished, the business plan is written, the cupboard under the stairs has been cleared out, I've spent ages on mumsnet......
I'm not good with time on my hands!!!

I don;t really ned any support right now but wonder if it might help if I tell you my mums story...

She was diagnosed with aggressive bladder cancer about 3 years ago and told it was already in her lymph glands and "realistically we're not looking at a cure" - I accompanied her to the appointment as she is divorced and my sister was away on holiday. It was the day I discovered that my third (and final) IVF had failed. It was not a good day. She had a 5% chance of surviving two years but the doctors agreed with her that they would fight as long as she wanted to...

...three years later after gruelling Chemo and radiotherapy at the Royal Marsden, she has been in remission for two years and looks after my wonderful DS oe day a week. She is remarkably healthy for what she's been through.

You can live with cancer and life can still be good.

Good luck everyone.

and someone below (possible hereditary breast cancer?) also mentioned possible cancer of uterus in teh family. I'm at high risk of cancer of the uterus (for long boring reasons I won't bore you with) and have had several biopsies but it ALWAYS has symptoms and has good success rate if caoght early. Get any abnormal bleeding checked out. Most commonly is light breakthrough bleeding between periods - if it happens on a regular basis go to your GP. I live with this risk and am reassured that its not going to catch me unawares. Ovarian cancer trickier (I worry about my IVF but there isn;t a proven link between the two) but I beleive that you can have blood tests to check some indicator if you are high risk?

Ironically I am being refered to a consultant about a mole which has grown back TWICE after being removed and is now bleeding - one cancer I never thought to worry about because I NEVER sit in the sun!

A positive story.
Thanks Suejonez

Hi everyone

im sorry i havent been around for a while, ive kinda been aoiding this thread, im trying to put it all to the back of my mind.

which has been working i suppose but then ill just be lay there at night and it all comes over me out of nowhere and my chest tightens, just this realisation of whay may be to come.

im thinking about you spudmasher, keep us informed of whats going on.

suejonez im so happy to hear your mum is fighting so hard and is now happy and healthy and also sorry to hear about your mole,

my mum made a joke of her skin cancer because she smokes so much and always asuumed that would get to her first. im sure its nothing tho, but these things have to be checked dont they?

and ((((((hugs))))) to pavlov and everyone else who has been through and is going through all this.

bloody hell, todays one of those 'cant be arsed days' for sure!

someone kick me up the arse, tell me to stop moping and go clean the house!

I don;t think my mole is anything to be worried about - its been biopsied once when it first started bleeding so its unlikely to be malignant now (not impossible but unlikely). Also I went to the Dr immediately that I realised it was back and a funny dark colour so its still extremely small. Hopefully even if its nastier than I think, it will be relatively easy to treat.

Spud - good luck for today, for your dad, and also for you too.

I think but please do not take it as correct for sure, that today is a check to see how he is managin on the chemo, they will check platelet levels etc to make sure he is fit and healthy enough to continue the next round of chemo, check what if any side effects he may be having and to see what can be done if he is to make these more bearable.

Geekgirl. I really do think, if they have been able to remove all visible cancer, that your mum has positiveity on her side.

Can I just say something that partner said about my mum's chances of recovery. 'even if there was only ever a 1% chance of survival, there is no reason why that 1% is not your mum. And she has her own odds'. It is true. The odds apply to a generic group of non-real people. real odds do not work to formula.

Great news about your mum Suejonz.

Spud, my mum had terrible platelet and white cell levels. She had several transfusions and stopped her chemo early because she got life threatening pnemonia and was hospitalised for a month! Doesn't necessarily impact in the long term prognosis.

Hope your mum can find a way to deal with it - it is hard and scary. And (rereading your original post) you couldn;t bore people more than I did - mum with advanced agressive cancer and me going through adoption. That was life - I had nothing else to talk about. Now I bore people with how fantastic my DS is and how well my mum is! Fantastic but still boring - but I don;t care .

Not boring at all Suejonez!
Your posts have got me through the morning along with all the other lovely people.
I feel a lot more positive and reassured now.

and we didn't get any positive news until the radio finished. IIRC they did blood tests and may have done scan after first round of chemo - same as your dad three weeks on one week off. They checked her cancer markers also but her's never really showed much so that became a bit pointless. Some peoples cancers show in cancer markers in the blood (I think certain cancers show them others don't) and so they can get some idea of whether the cancer is responding to the treatment.

Do you know if they are giving him chemo for palliative care or if they are trying to get it under control? With my mum they weren;t actually trying to cure her but it wasn;t palliative care, they ere trying to shrink the cancer enough to give her more years with the view of repeateing the treatment at some point in the future if possible. They only decided to do the radiotherapy when the cancer responded well to the chemo and they couldn;t detect any cancer left in the lymph glands. They decided it was worth trying to nuke the primary cancer at that point.

My sister and brother and I went to chemo with her in turn. We had a mantra "good chemo, bad cancer" and (bizarrely) spent a lot of those times laughing.

My mums GP told her that very many people these days die WITH cancer not from it ie they live with cancer and eventually something unrelated kills them. No one focusses on learning to live with cancer but that can become important once the inital shock has worn off.

Palliative - just trying to slow it down and ease the symptoms.
Tumor is in his bladder and has gone right throught the wall of it,it is in his lymph nodes and an aunt let slip last week that it is secondary in his bowel.[hmmm] Not sure if she has got the wrong end of the stick there or if dad has really tried to hide this from me.
Can't believe he would hide something like that to be honest. She must have got it wrong.

dazie just to let you know that my brother had hodgkins when he was 23 yrs old ,glad to be able to tell you he made a complete recovery ,the only thing was it was over 25 yrs ago and they didnt take sperm from him before his chemo so he was left sterile,but he is alive and well.Also my sis in law currently has cancer of the spine which has come from when she had breast cancer 14 yrs ago .she has had radio therapy and is having some trial tablets.they are not planning any more treatment for her at the moment,i dont know if this will change because even though her breast cancer was so long ago ,this is now a secondory cancer. think the tablets are to help with bone strength.

spud - my mum had bladder cancer, through the wall into the lumph nodes!