I am a long term loiterer and occasional poster on here but have followed many stories on here and would really appreciate some advice/real life experience etc.
My better half has been suffering for a bad back for 2 months and it had been diagnosed as muscle strain but unfortunately she got admitted to hospital to be told she had terminal cancer in the multiple places including the spline. Basically since it has spread so much they won’t be able to get rid of the bone cancer but she is starting chemo in just over a week.
As you can imagine we are devastated but so worried about our 3 daughters aged 21 and twins aged 13. They have all been amazing and visited in hospital and generally been supportive to each other. The eldest has even decided to Everest off road when back at uni to raise money for Cancer Research. This is the way we let people know through social media.
After week of infections she is hopefully back home soon and then in for day patient chemo in just over week. If anyone has any tips, foods, advice or even personal experience that would be awesome but I also know what a raw subject it is.

That’s heartbreaking stuff mate, I have no words, only hope. 💙

As above little practical advice just hang on in there and hopefully there’s a treatment she’ll respond to.

As an aside my mum was diagnosed with Stage 4 lung cancer that had spread throughout her body 2years ago and she is still here living a full life after responding remarkably well to treatment.

You’re in my thoughts today.

Sorry that is really shit news for you all to receive.

I might not put this across very eloquently. My brother in law recently died of cancer. He never admitted to himself or to others that he could die from it.

He went from being slightly unwell to passing away within 3 months. Even a week before he died he was chasing the next round of chemo, and still saying his excruciating back pain was sciatica.

He never prepared for death because he was too busy fighting, and never wanted to admit he could die, so never properly said goodbye to his family.

Think about how you can make the time you have left good. That may not be chasing chemo cycles. What will the chemo achieve, it may prolong life slightly but at the detriment to quality of life.
Discuss palliative care now while your partner can. None of this is easy, or what you will naturally want to discuss, but can potentially make the end point better for all.

Give each other lots of hugs and talk, be there for each other, ride your bike if you feel you can, and come here to off load.

As FunkyDunc says hope for the best but prepare for the worst.

All the best to you and have a man hug.

Funkydoc. I did wonder about the benefit of chemo but the doctors are keen to start straight away and talk of time. The chemo is being used to control the bone cancer rather than get rid of it and we are insistent on making memories for the girls who all ride/race bikes.
I have been out a couple of times when I cant sleep but turn into a blubbering wreck as I have always used my time on a bike to think.
My eldest daughter has been unbelievable. she has been a rock for her younger twin sisters and so brave. If anyone is in South Wales on the 10th October it would be great to get as many people joining her for a lap of her of road course.
Cheers everyone

So sorry to hear this – life is unfathomably cruel sometimes.
My younger brother died from Colon cancer 7 years ago (he was 36) he found that trying to exercise where possible (even if its just a few mins on an exercise bike or a walk around the garden) really helped with his mental state, and following the ‘eating for cancer’ type diets gave him something to focus on and made him feel like he was personally making a difference.

Its a difficult journey – but there will be highs – she is still your wife/mother of your kids/etc and there will be moments of normality.

Regarding the kids (especially the younger ones) engage with School early on – they will probably not be the only kids going through this sort of thing and the school needs to understand when the kids are having a tough day.

Nothing to add other than to say my heart goes out to you and your family. **** cancer.

Heartfelt thoughts to you all, awful news. My wife was diagnosed with breast cancer in 2013 and as above talk to the school and uni, we found the pastoral support for the kids was excellent. It’s one of those times that no words seem suitable, making memories is important and thankfully we didn’t get to the point we needed to think beyond her treatment. If she is able keep active, both my wife and friends who had similar said that really helped them. Regards foods she did lots of research about different foods that might help and since then has taken daily ginger and carrot juice, it apparently helps with inflamation and other symptoms. There is plenty to read about it on the www. Sadly it seems all too common an illness, my mother in law sadly died of bowel cancer around 9 months post diagnosis 3 years back and today my father in law will find out if he has prostrate cancer. Get as much time together as you can, it sounds like your kids are fantastic in supporting each other and you both.

that sounds pretty shit, sorry to hear that is happening for you all, especially with the younger kids.

Everything that people have said above sounds spot on.

I can offer experience of similar(ish) scenarios that I had.

long time ago, when I was about 15 my mum was diagnosed with lung cancer and went through invasive treatment that had a massive physical effect on her. However it was successful and she is still with us 20+ years later.

However around this time last year my Dad got a diagnosis not dis-similar to what you guys have. He went for chemo and radio therapy, I dont think he really wanted to go for the treatment but my Mum encouraged him to go for it, I think she had a bit of false hope based on her experience. However he died about 9 months after the diagnosis, they initially gave him no more than 6 months, if he was lucky.

In one way, it was good to have some time to try to have time and chats with him, however he pretty much shut down about any deeper conversations, but even being able to see him for a more days was good for us at the time. But we got to have the grown up chats about what he wanted regarding care and all the difficult conversations around wills, POA, hospice/no-hospice living will type things. Sorry that sounds blunt and Im not meaning to sound like a dick. But as things progressed we were glad we had these chats early on.

It was hard to see the decline in him and watch the effect on him, however this was offset with the snippets of time.

there were only adults, no young kids involved so thats different to your situation.

Recently there has been a deal of reflection over both events and when my Mum wasnt well, In retrospect if she had died, I would not have been prepared for the actual event and for life after as there was no conversations around it and i think thins would have been really hard to process as I got older.

However I realised this as my Dad was diagnosed and I made sure I spent as much time with him or doing things for him as I could, work let me compress my hours so that gave me extra time to spend and even if it was getting him the paper, r driving them for treatment gave some feeling of usefulness.

This is all a bit of a ramblethon and probably not helpful at all. But I think what Im trying to say is to try to engage the kids as much as possible as early as possible and to get the difficult conversations/discussions out of the way as soon as possible, before time feels even more precious.

Mcmillan were great, I called them a couple of times, helped us register for the support we were entitled to financial and otherwise.

as people have mentioned, try to find a little time for yourself to clear your head when you can.

My heart goes out to you. I have no direct palpable experience I can draw upon, unlike some of the previous posts, but couldn’t scroll by and say nothing.
You’re in everyone’s thoughts now.
Get busy making memories, especially for the twins, but look after yourself too.
CD

That’s shitty news.

My wife was diagnosed at 33 years old with a terminal Brain Tumour. Out of the blue and knocked us for six…
If you’re lucky enough to have a Maggie’s centre close by, drop in for a chat, there wont be any pressure but we found them amazing, they’ll have information and support for you, your wife and the kids.
In terms of living, do nice stuff, celebrate life while you can and spend time with those you love eat well and get out and about, there’s nothing like a beach to sooth.

apart from that, all i can say is good luck!

Although I probably should I don’t have any wise words for you but my thoughts go out to you and your family. It’s obviously going to be hard for you all but remember you are not alone, make use of all the support services you can, even having a vent on here will help.

I have found that whenever I mention the big C to people they all have a relatable tale to tell it’s incredible how many people have been affected by this cruel disease. So on that note I’ll add my personal story. Cancer has hit our family hard over the years, luckily for me I survived stage 3 bowel cancer, however I have lost both my Dad & MIL to it. As if that we not enough my wife was diagnosed with stage 4 brain tumour and given 6 months to live. That was 16 months ago and thanks to Radiotherapy and Chemo she is still here today. Her symptoms are now getting worse and treatment options have run out. She is on palliative care from Macmillan with only a few months left.

We see her life journey as a book and we are clearly on the last chapter. We know how the book ends but luckily we have the opportunity to be able to maybe write some of that last chapter and hopefully make it a happy one. We have good and bad days of course but as I said before it’s hard for everyone and I don’t think there is a one solution fits all answer, everyone has to deal with it the best they can.

Good luck, be strong and try and find some happiness amongst all the bad bits.

Man hugs @ ya

Terrible time for you all, as much support as some strangers on the web can give you, were all offering it

Link to your daughter’s fundraising please !

So sorry to hear this.

Nothing to add, but from others experience, look for all the support options that you can to try and help you make the most of the time you have left, and get help to prepare for what will come – emotionally, practically and financially.

Investigate all the treatment options. Elderly family members who should have succumbed a year or two back are still with us as they have found treatments that have controlled the cancer and not affected quality of life too badly.

Hold on to each other. Give the kids time and space to try and deal with it at their own pace, which may be with help from support services rather than with you.

Thats sad to read. Try and make the most of the good days. Some people suggest making videos that your daughters can watch back as and when they want to. Not speeches, just videos of good days with smiles and laughter if possible.

Practically, get in touch with Macmillan and/or Marie Curie. They have a wealth of experience to draw on and can help you, your wife and your daughters.

and this;

Link to your daughter’s fundraising please !

Utterly shit news, sorry. There is some good info here https://cancercareparcel.co.uk/main/gifts-for-chemo-patients/

Other than that I can’t offer anything. Massive kudos to your daughter, the charity will really appreciate the fundraising, if you want the money raised to be spent targeting a specific cancer, or to stay in your locality tell the shop manager as they can do that for you when you hand it in.

F**ck cancer, it’s a **** of a disease.

Sorry to hear. My Ex just died from a very similar cancer diagnosed in December. She had a brain tumour when she was 12 and had that in remission all her life. She was a great advocate of her cancer support groups, Macmillan nurses and hospice care. Lockdown made things difficult so her sister made a FB group, gathered stories and memories and organised zoom meet-ups. I made (terrible!)travel films with her and carried it on even after we split as I knew they would be important one day for us all. Her sister loved this. They are all a very joyous family and I think it comes from having been through it all before when she was young and helping other families. You can’t help but follow their attitude.
Her final weeks involved a lot of pain and morphine and hospice care. Sadness and relief for many I think.

Very sorry to hear your news. My mother died a few years back at a relatively young age, pancreatic cancer in her case. And from that experience I’d echo the following:

Mcmillan were great, I called them a couple of times, helped us register for the support we were entitled to financial and otherwise.

It’s well worth speaking to them.

I’d also agree with whoever mentioned getting everything sorted now, while you can. My mother went downhill very fast in the last month, from being weak but completely coherent and able to care for herself, to pain, drugs and 24hr care.

I have very little to add other than to reiterate the suggestion to visit a Maggie’s Centre. I’m rather closely linked to them and I’ve seen up close the profound help that they have been able to provide for people in your and similar situations.

Thank you so much everyone. It is so good to hear stories and receive support.
We are being really positive as a family and she is now coming home today which is great for her and the family.
They have got pain meds sorted so hopefully with chemo we will have some good time ahead, even years.
Love to hear about things like the ginger and carrot to help.
Here is the link to the eldest daughters fund raising page.
Any money is gratefully receivers but not expected and any company over the ride would be appreciated.
The STW and cycling family as a whole are awesome
https://justgiving.com/fundraising/evie-lane1?fbclid=IwAR3G9qXycnmIt9IJmgOeDJShCWGpKpF5c7DWcesYgKaPEOBdZiCbxdRUrw8

I can’t really add to the many great posts other than for me ( 3 weeks post op for Pancreatic Cancer, a Whipple procedure) I am getting most of my useful advice from fellow sufferers via a facebook group. I really don’t do social media but made an exception. I’m finding real life 1st hand experience is what I need re day to day living and diet etc. Positive thoughts being sent your way and hats off to your eldest for being the rock you all need….at some point she will need someone to lean on I suspect. All the very best to you all.

I see your Daughter is already on the case with doing something positive, which is great and will lift everyone’s spirits.

My late brother was keen cyclist who rode London to Paris a year before he died.
After he got back we had a conversation about other rides he’d like to do – one of which was to ride from London to Mt Snowdon and to climb Snowdon at the end.
My response was something along the lines of “That is a long way to ride just to end up in bloody Wales”

Unfortunately he never got the chance to do this, and at his funeral i discussed his silly idea with some of his old school & uni friends.
11 months later 15 of us rode London to Snowdon where around 55 of his friends and family climbed the mountain and scattered his ashes at the top.
Since then we’ve also re-run his ride to Paris and cycled to Amsterdam, raising almost £100k for the charitable foundation set up by the doctor who treated him.
Our money has been used to fund a PhD project and various other research which we know has made a real difference.
We also made some amazing memories along the way, which whilst are not as good as having him around, they prove that light eventually does follow darkness.

I’m sure seeing your daughter complete that ride will give your wife a massive boost – don’t underestimate the power of people doing good things.

Thoughts are with you and your family.
Trying to think practically, I’d say have a think about anyone you’d like to visit,say any family that lives further away, and try to see them over the next week. Chemo can be such a different experience for everyone, but it can hit hard and leave your wife wiped out at times. The other thing is it wipes out your immune system, and at the moment shielding is “paused”, so use this week as well as you can because there’s every chance that you wife will be considered critically extremely vulnerable if shielding unpauses.
In fact echoing the comments above, use any days you can to make good memories.

Macmillan are great, talk to them , they have people to support your wife but also the family, you and your daughters.
Two places they may direct you for your daughters are:
Riprap.org.uk
And hopesupport.org.uk
They support children of cancer sufferers from teenage up.

Personally, I wouldn’t push the getting everything sorted , be gentle, do your own research and be ready to talk when your wife is. There’s so much to process for her right now.
Sorry for being a bit rambling, but if you want to message me I’ll try to put together a more coherent reply.

Hi
That is a hard read for me
My friend died a couple of months ago from the same, multiple marstisis bone cancer
He was diadnosed early and got a full chemo, radio and bone marrow treatment
In vain unfortunately
He took all the advise but in the end the treatment was pain control mostly with some life extending aspects
He planned his funeral, but was too ill to do any bucket list stuff, plus covid didn’t help
N h s were great, and the hospice care team

Sorry to hear that dcl, it sounds properly shit for the whole family. You’ve had lots of good advice from people with a range of experience, can I just add on one specific detail, if your wills are not fully up to date, get that sorted without delay. My sister was always just about to get round to it, through several years of terminal illness, and in the end left a mess of half-written details which dissolved towards incoherence as the pain killers took over. This wasn’t just a complete ballache for yours truly to sort out (more than 2y later still not finished) but also resulted in substantial family fall-out.

Of course it applies to everyone else reading this thread too, there’s absolutely no excuse for a functioning adult not to have a will even if they are 100% certain that the legal default is exactly what they want to happen. Newsflash – you’re all going to die one day.

My wife is a big noise in Macmillan in the North West of England.
Ring your area Macmillan team. They’re very good. They’ll offer huge support.

I lost my dad when I was 7 to Multiple Myeloma, I had really no clue what was going on at the time and sadly have very few memories of him.

I read this article on the BBC a while back and it really struck a chord with me and I bookmarked it. I wish my dad had left me something like this. https://www.bbc.co.uk/news/stories-47334604

I’ve not read the book mentioned in the article, but I like the title :- “lap of honour”.

Donation made to your daughter’s crazy ride.

So sorry to hear your news, properly grim.

My experience comes from my wife’s grandmother, who was one of the longest surviving patients with terminal bone cancer at the time she died, well over ten years. At the other end of the spectrum, one of my best mates lost a ~8 month battle with leukaemia.

I’d suggest with regards when to stop\when to fight, only you and your wife will know this, so trust yourselves. But in both instances the medical advice given to my GiL and friend was superb and pragmatic. My friend fought like f@#&, and when it became clear this was unsuccessful he was able to accept it and he had a few very precious months with friends and family.

The more people I know who have gone through it, the more it seems to me there’s no right way To ‘do’ it and every journey is unique. Lot of people rooting for you here.

There is a lot of dangerous quackery out there, so I don’t expect you to take this without some scepticism, but please read this mans blog.

https://www.mycancerstory.rocks/single-post/2016/08/22/Shake-up-your-life-how-to-change-your-own-perspective

Since my father was diagnosed with a stage 4 glioblastoma, I have searched for any and all information about incidences and likelihoods of cancer, medical or holistic treatments, foods to use or avoid.
Several things have stuck with me.

Cancer feeds on sugars, so starving it may help.
Turmeric, broccoli and garlic are all strong anti cancer foods.
Sunlight gives us vitamin D3 which helps the immune system (providing up to 70% reduction in incidences of respiratory virus infections, including covid -BMJ report)

I wish you and your family all the best.

Just wanted to add that thoughts are with you OP.

I work in palliative care and would just echo what others have said about engaging as early as possible with the support services near you such as Macmillan and if you can, get referred in to your local hospice.

Many people think hospices are a place just for the last days of life but they should in most cases provide support for anyone with a terminal diagnosis even if the prognosis is up to a year.

At the hospice I work, there is a very holistic approach and a level of care which you’re unlikely to get in mainstream NHS care (I also work for the NHS so not a knock, but just the realities of the pressures on NHS services). Support is provided for the whole family and includes help with financial issues, social care, counselling, bereavement support etc. The medics, physios, occupational therapists etc are all specialists and will have the expert knowledge and experience to give you the best possible support.

We sometimes see families that have been reluctant to engage with hospice services, fearing that it is in some way ‘giving up’ on their loved one, but then once they engage, they see what it’s about and wish they had been more open to hospice support earlier so I would just make the point to engage early if you can with any specialist palliative care resources available to you locally.

Best wishes.