To think that cancer is awful and that the treatments for it are almost as bad as the disease itself?

[poshsinglemum]

My mum has cancer. It started in her mouth. She had an operation whereby she had half her tongue removed and built with part of her arm. It was the biggest tumour they had seen in that hospital.
It came back on her neck and she has had chemotherapy and now radiotherapy. With her chemotherapy she felt sick, her mouth blistered and she could hardly eat. Her hair fell out.
Radiotherapy is more painful. Her face has swollen up and her mouth has blistered up. She's in agony and can't eat or drink. She's going into hospital to so she can be tube fed and have proper pain relief as she still has two weeks to go and the side-effects are going to get worse.
Dad has taken her to hospital nearly every day for about 6 months. he's also working as a teacher and is knackered.
It's an awful illness and it's terrible seeing her in so much pain and so scared for her life. The treatments are awful too. Anyone else going through this? How do you cope as a bystander?

What's worse is there is no guarentee it will get better. If she hadn't had the operation then she would certainly be dead by now. the tumour would have chocked her.

I don't know what to say but didn't want to read and run . I am very sorry to hear about this, and I very much hope the treatment works out. Very un-Mumsnet hugs to you and your family. I really hope everything is ok.

I do think what they can do nowadays is amazing though as a few years ago they wouldn't have been able to do anything. The fact she can talk when not in agony with a tongue made from her arm is fantastic!

posh, so sorry to hear that you're all going through this. My mum had cancer a few years ago - parotid gland but she just had surgery and managed to avoid radiotherapy.

I'm not really sure what to say that would be of any help to you but I'm sure just being there for your mum and trying to keep a bit of normality in her life would be a good thing. Just keeping her up to date with things that are going on with friends/family when you go to visit - maybe bringing in a DVD and some snacks and just sitting together?

Sorry, I'm really no help at all :(

I agree, it's absolutely awful and I'm sorry that your mum and family are going through it. Sadly, these are the only treatments available.

As a bystander to my Dad's suffering, it was hell

BUT the major surgery he had and the following chemo gave him another 4 years he wouldnt have had without it, and of those years, at least 3 of those were good for him and us - and for those we were all very grateful and to dad, it was all worth all the pain, just to see his grandchildren grow up a little more

In answer to your question thou, does your mums hospital not offer volunter hospital transport to take your mum? This helped saved mum and I's sanity as we werent always relied to take him

And I hope her MacMillian nurse has been offering a lot of help and suggestions for both your parents needs?

I know exactly what you're going through
I watched my mum have 3 months of radiotherapy and chemotherapy for nasiopharyngial cancer (tumor in het nose) she was 61

The treatment is savage and there were days I thought she was dead
It's just awful and i would have done anything to free her for justvone day of the pain

We moved my mum to sue Ryder when her testament finished and they took her off the cocktail of drugs that were making her hallucinate

Her cancer came back and she died 2 years ago

I don't know what quality of life she would have had without the treatment but she was left with no saliva glands so could only have liquid food for the 2 years she survived

I don't know what to say to you except make the most of every good day she has. There don't seem to be any guarantees with this type of cancer. I hope and pray that your mum is one of the lucky brave people who beat this awful illness

Posh, I am so sorry for your mum and dad, and it is very hard for you too.

Please remember that there are over 200 different types of cancer, and that treatments vary considerably depending on where the cancer is, how big and what stage/grade.

For many people, the treatments are not pleasant but nothing like as severe as for your mum. I had cancer and had major surgery and was offered radiotherapy, but after a great deal of thought declined it.

These days, medical professionals dealing with cancer work very hard to make sure patients and their families understand the treatment options on offer and are making decisions based on what they feel comfortable with.

Six years on I am still here. Sadly, a dear and very close friend currently has terminal bowel cancer and I've been with her through it. When she was having chemo, I often used to take her to appts and we'd chat to the other patients. One of the other guys having the same treatment as her was still in work as he felt well enough, and not all treatments these days make you lose your hair.

For anyone who is reading this and is scared, please don't be. There is lots of help and support available.

OP, have you thought of setting up a rota for taking your mum to hospital to give your dad a break? Many charities will help and often friends will be happy to. When I was going to the hospice as a day patient they had some wonderful volunteer drivers who helped transport me - I was so grateful.

Does your mum have a specialist nurse she and your dad could talk to about getting extra help? Macmillan are very good too.

It's not easy watching someone you love go through this. All you can do is everything possible to make the practicalities as easy as possible for your mum and dad, and be strong for them.

Here's hoping for a positive outcome.

Posh I'm here if you need support
But you must take all the help that's offered to you as this will take it's toll on you. Your mum will be worried about you too

I couldn't have coped without friends babysitting for me and supporting me.
Sue Ryder are wonderful as are the Macmillan nurses
There is help out there if you ask
My mum wanted to spend time with me and my boys. Nothing more

I don't bloody drive. Otherwise I would take her in every day. This is now why I realise I should have learned when I was 17 (although I have almost passed)

But thank' sfor all your support everyone. I didn't mean to sound angry. I am angry with myself for not driving though.

Posh so sorry your mum is going through this and that your family is suffering. I have some experience but I was a much younger bystander - but I do remember my mother really suffering trying to do the best thing for my father, twice.

I think the hardest part (apart from treatment) was that my df was in denial and refused to ever speak about it.

It was so hard for him (even now 15 years on) and hard for the people around him who felt so helpless.

I do feel for all of you.

poshsinglemum, so sorry to hear about your mum.

YANBU

The disease is brutal, the treatments are brutal. On the other hand, my father-in-laws treatment gave him two and a half years to say goodbye, put things in order, and I think he made his peace with what was happening. He was very brave.

Another nine months and he would've seen his first grandchild . If they had come up with another treatment or drug I think he would have tried it to have that.

I really feel for your mother and your family. Hopefully she and your father will get some respite while she is in hospital. Certainly, the pain relief should be better controlled while she is there.

About fifteen years ago my sister had lymphoma and was in severe pain but this was moderated by the morphine drip she was on. Watching my sister's pain has been the worst experience of my life.

I discovered in October that I have advanced (but contained) cancer of the stomach and on Monday week my whole stomach is being removed. The doctors are hopeful this (together with a further 9 weeks chemo) will result in a total cure.

The chemo has been and, presumably will be, a bit of a bugger but so far I have had almost no pain and am therefore seen by many as being very phlegmatic about what I am going through but, compared to what my sister and your mother had to go through, my cancer has been a doddle. I have also been extremely fortunate in avoiding radiotherapy.

I know it is extremely difficult but what I really want is for my family to carry on as normally as possible because I don't want to feel I'm causing them pain.

YANBU

It is an awful disease, and the treatments sometimes seem to make the suffering worse.

I don't think my experiences will help to put you in a more positive frame of mind, but in terms of practical support don't dismiss your local hospice. I know everyone thinks it is the last resort, but that isn't true. They are very good for respite care and pain management, and our experience was that the nurses there were 100% better at dealing with the family members than the hospital.

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So sorry - it is so tough for those who love us - I have seen the emotional pain on my OH's face. Having been through lots of treatment - I can tell you that warmth and humour is really the best help. It's hard - but if you can, try not to break up in front of your mum - we look for strength in our loved ones. My OH makes me laugh and you wouldn't believe the black humour we laugh about. Having complete R/T, the nurses put on a tape - Dirty Dancing's Having the Time of My Life. I laughed and they mistook it for pleasure - so they played the damn thing every time I went in there.

Make sure you get all the support for your mum you can - yes food-wise but also counselling if you can. For some people, this helps.

TheBeast - I am so sorry for your double bad luck - with your sister and yourself. I also have lymphoma and it's a bugger. I can only say that the upside of R/T was a very very gorgeous male nurse.

poshsinglemum - of course I do not know you or your family but please accept some cyber hugs - quite sincerely. Make sure you regularly talk to the consultant about pain relief and just continue doing what you are - being a sweet, loving, caring daughter. That will be her biggest comfort.

I am so sorry - what a distressing time for you, your mum and your family.

I agree that although we all welcome the huge improvement in outcomes, the treatments are astonishingly (understandably) aggressive and those undergoing treatments have no choice but to submit to them, and to watch and try to support is incredibly hard. I also know it is the logistics that add extra stress and distress - how will X get to Y, who can stay with Z...

My 30 something sis, 40 something aunt and mum have had it in the last four years, new tits all round and lots of terror... (and how I hear that axe swinging above my head).

How to be supportive? Depends on the person, some people like positive thinking, some black humour, I am sure you know what your mum needs and don't worry about doing the "wrong thing".

How to cope? Talk if you want to talk, go to bed early and sob if that feels right - hope your mum improves following her stay.

How horrible for all of you.I had chemotherapy and radiotherapy 4 years ago and the treatment is vile but the disease is aorse.We allow ourselves to be butchered,fried and poisoned in the hope that eventually we will live a few years more.Your mum is blessed to have a dd who cares so much.
Positive thinking.......yeah right-you try being 'positive' with a guillotine poised over your neck.Be there,cry with her if need be but not unless she does,try to share a joke or two,dont knock daytime tv.Buy posh fizzy water and serve it chilled with lemon as that can be tolerated when ordinary water tastes 'thick' and nasty.Make her rest.Tell her that the side effects will pass [true] that there is always hope [usually] that someone has to be on the good side of the statistics.Most of all be there-with her as well as for her unless she says she wants time alone.A baby monitor may be good so she can call you if she wants to.make sure the loo paper is soft and plentiful and whatever she can eat,give her.
Good Luck

poshsinglemum - I hope that talking about how we deal with our own cancers helps you understand some of what your mum might be going through and that you do not feel we are hijacking your thread.

I also find black humour works best for me and really don't want too much doe eyed sympathy. I have however learned to accommodate/deal with and, in fact, be grateful for whatever people bring to the party. For example, despite being a virulent atheist, I happily accept that people telling me they'll pray for me are offering me a part of something which is important to them, and thus making me feel important in their lives. I also appreciate the kind comments above.

I also have to compete with my sister :)

This is difficult if not impossible as she completed her Masters thesis in hospital and, thanks to a very supportive Uni, graduated in the hospice with a huge party because she wanted her sons (then 10 and 12) to have a positive memory of her last days.

I'm skiving off work and mostly sleep and eat.

PonceyMcPonce - Food was my main concern but once I discovered I could eat what I wanted, just smaller portions more often, I found it relatively easy to consider my future positively. I was very worried that I'd be forced to eat mush.

Punkatheart and all other cancer sufferers on MN, hang in there and good luck!

My FIL is oing through this for the second time, it is a horrific disease.

Did anyone else watch Horizon a while back about advances in gene therapy hopefully meaning that such brutal treatments will be a thing of the past?

I hope and pray this becomes reality soon.

Hi all. thanks for getting back to me and sorry to hear those of you are going through similar. I was horrid to mum the other day. Weve always had a tricky relationship and sometimes I forget she's ill. i do love her though.