Hi Andrew,

Welcome to Cancer Chat. I am sorry to hear about your Mum’s recent diagnosis.

My own Mum had breast cancer for 12 years and it was only in her last year that we were told it had spread to liver, lungs, bones and brain. She had palliative care after that, but it was heart-breaking to see how quickly she deteriorated.

A diagnosis like this affects the whole family and we experience a whole raft of different emotions as a result. Having two very young children will keep you busy with everyday things, which is probably good. Instead of worrying about the time she has left and how bereft everyone will feel when it happens, try to deal with matters on a day-by-day basis. This is much easier than looking at the enormity of the bigger picture. Try to make her as comfortable as possible and concentrate on making memories with her while she is able.

My children were in their early teens when Mum passed, so they were fortunate enough to know her and still remember her 20 years on. It is a great pity that it doesn’t look like your Mum will reach this stage.

There are many ways that you and your sister can help your Mum. They all sound very mundane, but will make a big difference to your Mum. She will probably feel very tired and her joints will possibly be aching. You can help out with day-to-day housework, washing, ironing, preparing tasty, appetising meals (chemo leaves a metallic taste in the mouth so all food tastes odd). She won’t want to cook when she is feeling nauseous and doesn’t want to eat. Are there any places she would like to go to or people she might like to see?

She may find holding a book, too heavy for her, in which case you can read to her. Make sure that her medication is controlling her pain properly, you can liaise with the nurses for this.. Just be there for her.  Does she like music? Perhaps you could download some for her. Take lots of photos of her with the kids. This may not be the ideal time for photos, but it is better than nothing and you will all treasure them long after she’s gone. The main thing to do is to make memories

I feel for you. This is not an easy stage of the cancer journey. Somehow or other you find the strength to cope. I hope that your Mum gets her treatment plan soon.

Please keep in touch and let us know how things go. We are always here for you whenever you feel like talking.

Kind regards,

Jolamine xx

thank you for your reply Jolamine.

I think we're lucky that my brother is still at home so when he's not working he can help with those day to day things around the house. 

I don't work Mondays and my wife and I don't send the kids to nursery that day so I think going forward I'm gonna try and make as many memories on those Mondays with my mum and my young kids grandmother. My son is 3 in October and loves his granny and grandad, we've already been recommended books for kids that may help explain death when the time comes more so for my son than my daughter as she's only 1 in November coming and will probably have no memory of her grandmother only for photos which I think is hurting my mum more than anything else because she adores her grandchildren and my brother isn't married yet so they're the only ones she has. 

While she's able her and my dad would like to plan a short trip to Rome, somewhere they've always wanted to go so my brother and I are trying to facilitate that for them while shes still able to do that kind of journey. 

I will keep in touch, while I have had plenty of friends contacting me offering support its nice to read others experiences of similar situations on a community like this! 

thanks x

Hi Andrew,

Having your brother living at home should be a bonus at this stage.

Making memories is far better for all of you than dwelling on the inevitable. It also promotes a positive attitude which makes the situation easier to cope with for all of you.

I haven't read it myself, but I believe that Cancer Research has advice on how to break the news to children, which is very helpful. Your son will definitely remember her, but children are very matter of fact and often deal with things like this better than adults. Sadly, your daughter probably won't, but look on the bright side, your Mum has seen you and your brother grow up, seen you get married and seen her precious grandchildren come into the world. This is a lot more than many people get.

I do hope that your Mum is fit enough to go to Rome, but I would advise you to look into travel insurance before you book the trip. There are some specialist companies who may cover her, but they all come with increased premiums. There are several discussions about insurance if you use the search engine on the blue bar at the top of this page, it will bring you to previous posts and suggestions for companies which might cover her.
I would expect you to hear soon about her chemo and I sincerely hope that it does what it's supposed to.

Take care,

Kind regards,

Jolamine

Been awhile since I popped on here and gave any update. My mum ended up back in hospital over a fortnight ago she had bad swelling of the stomach and the bowels weren't working as they should. Just over two weeks she was kept in as they drained the stomach twice in that time of fluid and helped to get the bowels working again. Sadly in that time my mum was stuck to a bed and wasn't eating or sleeping and she has now been moved to our local Marie Curie hospice for recupreation a skeleton of woman that was admitted weeks before. 

The hospice are positive that its only a short-term stay for my mum to get her strength back and then they will let her home again but she knows herself that in such a short few weeks since original diagnosis her body is changing fast. 

On a personal level I'm not sure how I'm coping, as mentioned before I've two kids at home (3) and (1) and we didnt take them to visit while my mum was in hospital to protect them more than anything but they did go to visit yesterday at the hospice and it was the best medicine my mum could have had. 

My employer has been so good to me that during those tough last few weeks I've been allowed to work from home as the hospital was only a few minutes from my house and made visiting after work much quicker plus just being at home away from the office but still having impact on work was good to have some breathing space. I'm back in the office today, a few times over the last few weeks I've had friends advise me to just phone in sick then get a line from the GP but i've done my best to meet my employer half way but at times that thought of time away has been tempting...

thanks for letting me ramble on .... lol 

Hi Andrew,

Thanks for the update. I am so sorry to hear of the deterioration in your Mum’s health and hope that the hospice can nurse her back to better health.

I am glad that you brought the children to see her in the hospice. Going back to the previous generation, my 2 were about the same age as yours when their Great-gran died. She was in her 90’s and was in a nursing home. My youngest had a great rapport with her and it did her a world of good to see the children.

It didn’t scare the children, as we had told them before that she was very sick and they were prepared for that. My son is now 41 and my daughter is 39. Both have a vague memory of that visit to this day, but they took it all in their stride at the time. The one thing that upset them was that we didn’t bring them to the funeral. My daughter in particular was very upset about this.

I am glad to hear that your employer has been so sympathetic and has been so helpful in giving you time off to work at home. I can understand why you are tempted to go on the sick, but with a good employer, I’m with you. I would rather do things above board when you can.

I am thinking of and praying for you all and hope that you can help her make that trip to Rome.

Kind regards,

Jolamine

Hi Jolamine 

thanks - since my post we've had the kids up a number of times more, my mum has a nice private room and just off from it is a sitting room so we're all able to move in there when we visit and let the kids play as my son is bouncing off the walls when he visits and my daughter is only beginning to try and walk so its fantastic for my mum to just sit back and watch them both. The hospice is such a more welcoming place than the hospital and my mum has really come round to liking it. Obviously she still wants home long term but she accepts the need to be there. 

She got out yesterday for the afternoon to have lunch with my dad and do some shopping, she even popped by the house as I don't work Mondays so that was a big step forward for her in her recuperation. Its my son's 3rd birthday tomorrow so we'll be visiting with the kids and bringing some cake and we've planned to have a small family getogether on Sunday and the hospice will allow my mum time out to come if shes not discharged by then.

I've worked out with my employer to have next week off part unpaid and part holidays as I don't have enough time left for a full week but my wife being a teacher is off next week for half term so id requested if I could be off to have some family time myself and if possible perhaps take my mum out for an afternoon from the hospice. 

We're still not sure how long she has we're all working on short term goals make it to my sons birthday this week then make it to my daughters first birthday next month then push on to my mums birthday in December and Christmas and then just keep taking it from there. 

Its good to be able to share this I have plenty of friends and family who would listen the same but its nice to have a forum like this to confide in. 

thanks 

Hi Andrew,

This latest update sounds much better. I am glad that your Mum has settled in the hospice and is happy there. It is also good that you are managing to bring the family up to see her regularly. I am sure that her afternoon out with your Dad must have been a great boost for her.

I hope that your son’s birthday goes well tomorrow and that you all enjoy his birthday cake. I also hope that she can join in the celebrations on Sunday. It sounds as if you are doing the right thing by trying to make memories while you can. Working on short term goals is much better than panicking about what will eventually happen. Sadly, there is nothing that you can do to prevent this, but this way you will have no regrets on how you’ve coped with the precious time that she has left.

I shall be thinking of you at the weekend and hoping that you can all be together to enjoy yourselves.

Kind regards,

Jolamine xx

Hi 

well thankfully my mum was able to make my sons birthday and she really enjoyed being there, we also had her up to the house during the week for dinner but with my week off we couldn't do any trips I had in mind as my mum just hasn't the strength for anything like that. 

Wrongly in my opinion she got let home Friday past from the hospice an Saturday I got a call from my brother to find she had a small fall on the landing and struggled with the stairs from living room to bathroom an only for my younger brother being there to practically carry her up my dad who's in his 70s couldn't have coped. 

My mum is now afraid of the stairs and from Saturday has restricted herself to only upstairs, we moved a tv into her room for stimulation. The mood has changed over the weekend to anger as she had a different idea of how returning home would go. My issue with getting home at the weekend was because nothing is in place i.e an extra hand rail for the stairs or probably what she really needs a chair lift. 

I'm worried sick about her as she has snapped at us all over the weekend an noone can excuse her as in her position stuck to your room you'd be angry too. I took last week off unpaid and Im back in work this morning but I'm worried and the worry from her diagnosis is in my wifes opinion running me down since her diagnosis all those weeks back I've had headaches, lack of sleep, vomiting bug and a chest infection and weeks ago I got rid of one stye an now last night my other eye is all puffed up. Like I said before my employer has been so flexible even in permitting me last week off unpaid but I'm getting to point here were I may just need to go sick and ask my gp for a line something I've never done in my life as my sickness record has always been good. 

thanks for letting me get this off my chest. Having to go home and co run a house with two little ones its hard to have time to sit down an process all thats going on and my wife is really concerned i'm run down with stress and anxiety. 

Hi Jolamine, 

We're expecting my mums welfare contact to visit today so i'm getting out of work to be there and listen to whats said. My younger brother has done a good job since Monday of chasing them on my mums behalf. 

I also have the same concerns you raise that the longer my mum spends up in her room the more she'll become a custom to it. I was over again yesterday and she was in much better form but still admitted to me that she couldn't carry on like that to the end its no way to live and I agree with her being isolated in her room is not what we all wanted/expected. Her physical conidtion has really deteriorated over the last lot of weeks, to touch her she's just all bone and skeleton. 

I can't thank my employer enough for how accomodating and supportive they've been. I spoke with my manager yesterday for a catch up after being off last week and explained the latest information an he was to shocked my mum was home and didn't have a care package in place. He instructed me to speak with HR and discuss options as my holiday balance is empty until January and with a young family I couldn't afford any further unpaid leave. 

Speaking unofficially with a senior HR consultant she was very supportive of my circumstances and actually said off the record that with my years of service I'm eligible for upto 8 weeks full pay with a doctors note providing I explain on it all the medical issues I'm having, stress, anxiety etc so I was very reassured by that conversation that If I have to push the button an go off sick my employer has my back financially as I was worried I'd only get SSP on sick an not full pay. 

I have made an appointment with my GP but as with all doctors I couldn't get anything until way into next week so in the meantime ill continue to take each day as it comes and judge when best to push that long term sick button. 

thank you again for your reply 

Andrew