Hi Sigill79, this is my first post on here too as I'm trying anything to ease the suffering my Dad is going through. You sound like a really nice person, caring for your mum & you have your own health problems too. Your mum sounds like she is suffering from side effects of chemotherapy. My Dad is 84 & was like your mum, fit as a fiddle. He worked until he was 78 years old in the building trade. So your mum might be strong enough for next round of chemo because she is fit even though she feels fatigued. My dad is stage 4 palliative care chemo & radio. Unfortunately, they caught my Dads stomach cancer too late & it has spread to his spleen & pancreas & more worryingly in his spinal cord near vital nerves so might lose the use of his legs. Can I ask, is your eating & drinking? Try everything to try to build your mum's strength back up. My Dad has stopped eating & won't drink anything now, not even a cup tea because the steroids have stopped working & everything is making him feel sick. But because he has looked after his body all these, he is some how still fit enough for each chemo session. I think your mum has age on her side & is fit apart from the cancer so hopefully she will bounce back. I would ring McMillan & nutritionists to get advice. That is what I'm going to do on Monday morning because my Dad is only suffering now and he isn't receiving proper palliative care. Please keep me updated. Although this is an absolute horrific subject, it's good to talk. 

Hi Mark1978, so sorry to hear about your father. I wish you all the best and hope that the chemo does give him some strength. This is a terrible time and it is difficult to cope. Unfortunately my mum passed away 2 days ago. She battled as much as she could but she was too tired and we had to let her go. I wish you well with your father and hope you manage to get him the proper care he needs. All the best.

Simon

Hi Simon,

I must confess that I felt like you when my mum died. I didn’t want her to go, but I couldn’t let her suffer and was glad that she was no longer in pain. Unfortunately, her pain was not well managed, even in the hospice and, I didn’t know enough about cancer at the time, to ask for more help. Eventually, a nurse told me that she felt that mum was suffering more than she was letting on. When I agreed, she asked if I would mind if she gave her an injection. This did ease her pain, but she died 2 hours later.

Don’t worry about crying so much. This is a good stress reliever and will help you to cope at the moment. The tears will gradually fade with time, but there is no hurry. You said ‘I know that she is looking over me and I am sure that she will guide me wherever I am.’ I felt like this too and, if you can hold on to that thought in all you do, you will cope with all that life throws at you from here on, as she will be in your heart forever.

I expect that you won’t have arranged the funeral yet, but I hope that you can hold it soon, as we all dread having to meet family and friends for such an occasion and you cannot really start to grieve until that is behind you.

I imagine that the house seems very quiet and empty at present and it will take time to get used to this. You will find it strange when the hospital bed goes back and the carers are no longer coming, but never feel that you are lost or alone. from what I have got to know of you in the short time we've corresponded, I know that you are a lot stronger than you think and, I am sure that you will continue to make your mum proud in the years to come.

Thinking of you.

Jolamine xx

Hi Jolamine, I'm really sorry that your mum had to go through that. It's really hard to know what to do, you care about them so much and you don't want them to be in pain and yet you can't let them go. I'm so sorry that your mum was in pain. Mums are so tough that they never let on about what they are going through. Whenever I asked my mum how she was she would say I'm alright. She was always trying to protect me and I imagine your mum will be doing the same for you. I'm glad she did get some pain relief but I know that's no consolation as you lost her 2 hours later. I'm so sorry.

The tears do come and they are very random. The slightest thing can set you off and yet other times you feel more in control. I think as you said there is a certain numbness at the moment. I don't quite feel like it's all happening, it feels like I'm not really there. I do believe mum is watching over me. I will hold on to that as I know she will give me the strength to get through this no matter how hard it gets. Yes the funeral hasn't been arranged yet, I believe it will be hopefully organised this week. I don't think you can properly grieve either, too many things going on at the moment. I know once the funeral is over it will fully hit me then. I'm not looking forward to the funeral, I feel like I will break down. I know I need to do it for my mum though.

Thank you again for your caring words. It does feel very empty at the moment. I didn't mind the bed staying the first night but I'm not sure its helping now. I think mum is in the sky looking over me so the bed doesn't really signify anything now. It will be very different once everything has gone though and nobody comes round. I think that's when I will need to be really strong. Thanks Jolamine, that is really nice of you. I don't feel strong but I'm sure with my mum with me I will get through this. My mum always said I will get through this and I want to try and make her proud and show her I can do it. Thank you so much. X

Simon 

HI Simon,

I only wish that I had known as much about cancer when my mum was alive as I do now. This has only come with personal experience and 2 bouts of breast cancer in the past 11 years. I am fortunate in that I am still living a busy and fulfilled life. Both of our mums seem to have been very strong right to the end. Sadly, mum wasn't in the hospice long enough for her care team to get to know her properly and, she never let on just how much pain she was in. Knowing her as I did, I could see it in her eyes.

Don't worry how random your tears are at the moment. Sometimes, it's the slightest thing that will set you off. Still, you need this release valve to stop you breaking down altogether. You will find a certain numbness at present, yes, but you will also be in denial that she has gone, to some extent. It probably feels at times as if it is happening to someone else and you are just looking on.

I doubt that the bed will be left in the house for long. My mum-in-law's bed was removed just 2 days after she died. I was glad, because I think that my father-in-law found it hard to cope with it being there afterwards.

None of us look forward to a funeral, especially for someone you hold so dear to you. You will get through it for your mum's sake and, I am sure that you will do her proud. Have you thought bout what type of funeral you want for her, or what readings, hymns/songs you would like? Are you going to have someone to stand up and say something about her life, or are you going to leave this to the celebrant? There are a lot of things that you could be thinking of in advance of booking the funeral.

You are right that the hard time will come afterwards, when the house is quiet and there are no carers popping in, but you will cope with this. Don't look too far ahead for now. Take things day by day, or even hour by hour, if need be.

Take care.

Jolamine xx

Hi Jolamine, I'm so sorry to hear that. You sound like a very strong person to go through what you have. I'm glad you are doing ok although I'm sure it is very tough. My thoughts are with you and I hope you continue to be ok. It is very difficult isn't it. We are very lucky now to have so much informatIon available to us. Sometimes it almost feels like too much but I'm glad it's there. There are also very kind people like yourself that help me through this and explain what may happen through experience. I can only imagine how hard it was for you when you didn't have access to any help. I think your mum does always hide pain but as you said you do know when something isn't right and you can tell with the eyes.

It really does at times, it's almost like it's not really happened. I've gone through it but it's not quite real. The main thing I get is sudden waves of panic when I released what's happened. I  think it's too much to take in all at once, it's so final I can't even begin to wrap my head round it. I do understand when you say take it an hour at a time because you really don't know how you will feel from one minute to the next. It is a rollercoaster.

They have said they are going to pick up the bed and the oxygen on Wednesday. I'm not sure how I will feel when it's gone but I know it probably doesn't help having it there as a constant reminder. I'm sorry your Father-In-Law found it difficult. Sometimes I think it helps and other times I think I'm just clinging on and need to let it go. I know my mum isn't there anymore, she's looking over me now so the bed doesn't really mean anything now.

I am worried about the funeral but I will try and cope for mum. I don't want to break down although I know I will be devastated. My mum was never too fond of any hymns but my sister knows a song she would like so I said I'm happy with whatever she would like. I thought about standing up but I'm not sure I could do it without breaking down. I think we will leave it to the person who is doing the service. We unfortunately had a family member who passed away last year and there was a lady who did a really good service so I think my mum would like to have her do it if possible. There is a lot to think about, we are registering her death tomorrow so I think we will go down to the funeral directors then to finalise the details. Thank you so much for all your support Jolamine. X

Simon 

Hi Simon,

I'm glad to hear that they are picking up the bed and oxygen on Wednesday. It will seem strange at first, but the sooner it's done the better. I am sure that you will cope with the funeral, if only for your mum's sake. Don't worry about the possibility of breaking down. There is no shame if you do. Remember that this is all very 'new' to you. I am glad to hear that you know of a good celebrant. We has a humanist ceremony for both of my in-laws and the celebrant was really good.

They were both keen ballroom dancers, so we played some of their favourite songs instead of hymns and then we read some poetry. There is no point in pushing yourself to speak if you don't feel that you could do it. What a lot of people do is to write down what they want to say. If they feel like speaking at the funeral on the day they can. If not the celebrant can say that this is what you want to say, provided that she has a copy in advance.

If you are registering the death tomorrow, do you know about The Tell-us-once Service? It is worth looking at this before you go, as they can notify a lot of different people for you. If you want them to do this, you'll have to bring the necessary papers with you - this site will tell you more about it:-(www.gov.uk/.../organisations-you-need-to-contact-and-tell-us-once). You can also do this on-line afterwards, but if you have everything with you tomorrow, the registrar will do it all for you when you are there.

I hope that you manage to get everything you need to get done tomorrow. I'm sure that you'll feel happier once you've got the funeral arranged.

Kind regards,

Jolamine xx

Hi Jolamine, yes I think once the bed is gone it will be better. It is a constant reminder at the moment as soon as you walk in. I think I found it helpful at first but I'm not sure it is now. Thank you, I hope I will be able to get through the funeral, I'm sure I will for my mum but I know it will be tough. That sounds really good, I believe the woman we want to use is a humanist too. I do like that as the services can be whatever you want and don't have to be too traditional. It sounds like you had a really nice service. I think it's nice that you don't have to do the traditional things and you can play the music you like. My mum never mentioned any hymns specifically so I think she would prefer a nice song.

I think I will probably leave it to the person holding the service. I did want to speak but I know that my mum knows what I want to say. I think I might be adding more stress on to a already very difficult situation. Thank you for that Jolamine, when mum passed they did give us a bereavement pack which told us about that tell it once service. We did that over the phone I believe. I know you can't go anywhere with Covid at the moment. I had never heard about it before so I'm glad it is available. There would be nothing worse than keep getting letters and phone calls for mum now. The funeral directors are going to come round on Thursday to discuss everything. I think I will feel better once I know when it will be so I can try and prepare myself. Thank you so much. X

Simon

Hi Simon,

Yes, both of our services were really personal and, I'm sure, would have been my in-law's choice had they been able to make it. The gentleman came out and visited us to get a potted history of their lives. He took various memories from different members of the family, then sent us a copy for us to amend before the service. Although he had only met my father-in-law once and never met my mother-in-law, he spoke as if he had known them for his entire life. I hope that your lady does the same for your mum.

I am glad to hear that you have the funeral directors coming round on Thursday. It always feels better to have that organised and to get some time to prepare yourself mentally for it. If you feel that speaking at the funeral would be too big an ordeal, don't forget that the celebrant can say anything that you might want to say on your behalf. I am glad that you had already found out about the Tell-Us-Once Service. It should be especially helpful at present, when you don't want to have to travel to too many places.

It's good to hear that the bed and oxygen are being uplifted tomorrow.

Kind regards,

Jolamine xx

Hi Jolamine, that does sound very nice. It must be difficult to speak but it's good to know that they are very friendly and want to help you. Hopefully the people we get are the same. There's so many good things I can say about my mum I wouldn't know where to start but hopefully they can guide us with that. If they send us a copy before that would be nice.

I am not liking forward to the funeral directors coming but I know it needs sorting out so better to get it done. I think it's because it all feels so real and at the moment it's like I'm not quite there. I think it will be good to prepare and know what to expect. I'm not sure whether we can say a few words or they will write it for us, I think we will find out more tomorrow. Yes I didn't know about that service. It's definitely very helpful, much better to let everyone know at once rather than getting upsetting calls of people are asking for her. With the Covid as well everything is difficult these days, nobody wants to let anybody in if they can help it! They did take the bed Jolamine but not the oxygen. That is being picked up tomorrow. It does feel strange without the bed but I am glad it's not there now. I don't think it was helping. Thank you so much for all your support Jolamine. X

Simon

Hi Simon,

You should find that the funeral directors will point you in the direction of what you can do, but if there is anything that you particularly want to include in the service, you only have to ask them. Another thing we did was to place a photograph beside the coffin in the crematorium, which added a personal touch. We also collected donations for Cancer Research at the end. The crematorium staff brought these back to me before we left the crematorium.

I am glad to hear that the hospital bed was uplifted today and that the oxygen is going tomorrow. I know that this makes it all seem very final, but it is better to face this sooner, rather than later. You will soon get used to the house without all of the extra equipment.

I shall be thinking of you tomorrow and, I hope that all goes well for you.

Kind regards,

Jolamine xx

Hi Jolamine, many thanks for your kind thoughts. The oxygen did get removed today which is a relief. I didn't mind it being there but I know it wasn't really helping. We did get the funeral directors round today. It wasn't too bad, they just asked us the basics about the service and which songs we can play. We did manage to get the woman we wanted to do the service which is very good. My mum really liked her when she did a friends funeral. They said the date for the funeral had to be June 2nd. Apparently they are very busy with the bank holiday, I don't mind waiting. It will give us more time to sort out any remaining things. 
That sounds nice with the photograph, my mum never liked having her picture taken though! They did offer us a donation service but I think we are going to do it ourselves. My sister will start up a page and we are going to donate to Springhill hospice that helped us. I will definitely try and do some kind of fund raising for a cancer charity in the future. It's awful that people have to go through this so if I can do anything to help I will. My mum got really good treatment and I am really thankful for that. l I want to help anybody in the future if I can.

The house does feel really quiet now, I know that's to be expected. I'm just trying to keep busy and not think too much for now. As you said it's all a bit of a blur at the moment. Nothing quite feels real. I'm just trying to take one day at a time for now. Thank you so much for your kind words Jolamine. X

Hi Jolamine, many thanks for your kind thoughts. The oxygen did get removed today which is a relief. I didn't mind it being there but I know it wasn't really helping. We did get the funeral directors round today. It wasn't too bad, they just asked us the basics about the service and which songs we can play. We did manage to get the woman we wanted to do the service which is very good. My mum really liked her when she did a friends funeral. They said the date for the funeral had to be June 2nd. Apparently they are very busy with the bank holiday, I don't mind waiting. It will give us more time to sort out any remaining things. 
That sounds nice with the photograph, my mum never liked having her picture taken though! They did offer us a donation service but I think we are going to do it ourselves. My sister will start up a page and we are going to donate to Springhill hospice that helped us. I will definitely try and do some kind of fund raising for a cancer charity in the future. It's awful that people have to go through this so if I can do anything to help I will. My mum got really good treatment and I am really thankful for that. l I want to help anybody in the future if I can.

The house does feel really quiet now, I know that's to be expected. I'm just trying to keep busy and not think too much for now. As you said it's all a bit of a blur at the moment. Nothing quite feels real. I'm just trying to take one day at a time for now. Thank you so much for your kind words Jolamine. X

Hi Simon,

I am so glad that you managed to arrange the funeral today and, that you got the celebrant you wanted. 2nd June probably does seem a long time away, but it will come around quite quickly. Everybody is having to wait longer as a result of the pandemic and, the bank holiday will push it back further again. It does give you more time to sort out other things.

It is a nice idea to set up a page for the hospice which helped you. It would also be lovely to fund raise for a cancer charity later on. We don't always appreciate the needs of people with cancer until we see it first hand.

I lost my mum to secondary cancer 12 years before I was diagnosed and, there was just no comparison between the diagnosis, treatment and aftercare which we both received. This is why I'm so grateful to the people at Cancer Research, who strive continually to improve the lot of those of us who are diagnosed.

You should feel a little better tonight knowing that the funeral is now in place and you have a date to work towards.

Take care.

Jolamine xx

Hi Jolamine, yes it does seem a long way away but I know time can creep up on you. There seems like lots to do but I've just been doing bits here and there. I'm going to sort cloths out for the funeral next. I did forget about the bank holiday and with the Covid problems I'm guessing it's a lot harder to get things done quickly these days. I definitely agree, I have been lucky that I haven't been affected by cancer in my life until now and now that I have seen what this horrible disease can do I really want to try and help. I know there's only so much I can do with my current condition but every little helps. Even fundraising or helping out anyway possible would be good. I just want to try and give some thing back.

I'm so sorry both you and your mum have been affected, I must say you are a very strong person Jolamine. I can only imagine the differences now with cancer treatment. I do know my grandma had it but she died before I was born and my mum said they couldn't do a lot for her. From what I have learnt so far the improvements in treatment are amazing. My mum had SRS treatment for the brain and even though we didn't get the time I would have liked I did feel like it worked and made her a little better than she would have been without it. Everyone we have dealt with has been so helpful, my mums treatment has been as good as it could be. Also forums like here where you never think you will find yourself have been amazingly helpful. Very kind people like yourself really help when I wasn't sure and was looking for support. My mum, me and my sister have found a lot of kindness through her journey. I have been lucky to meet some fantastic people just like yourself.
Cancer research is a great site, I am very thankful for places like this. Yes I think I can now try and build myself up and get ready now I know when the funeral will be. At least there's a date for me to work towards. Thank you so much Jolamine. X

Simon

Hi Simon,

Cancer touches a number of families nowadays and, it is great when someone wants to join the fight and give something back in any way they can. I am sure that you will find a way to help despite your current condition, but give yourself time to grieve first. I believe that nearly all charities have suffered a huge shortfall in their contributions due to the current pandemic and many are realy struggling.

I am glad to hear that you feel happy with all that was done for your mum. When my mum was diagnosed, she was just told that she had breast cancer - no mention of type or grade. There was no discussion or choice of treatment. She was told that she would have a mastectomy and radiotherapy. She had horrific burns from the radiotherapy and was then left to her own devices. There was no such thing as after care and no support groups.

By the time she discovered that it had spread, it was too far gone and she spent a long time in hospital before she was moved to the hospice. My experience has been so different from start to finish. Diagnosis is much more specific and there are various choices for surgery and treatment. Radiotherapy treatment seems to be much moe controlled these days. There are so many different support groups to help mentally and physically and after care now has high priority. We really are very lucky in comparison.

It makes such a difference to have all this support and it really is helpful for cancer patients and their families. I was a strong person before I was diagnosed, but I must confess that I fell to pieces when my cancer was confirmed. However, I have become more positive as the years have passed, thanks to some fantastic support I've had on this site.

A forum like this is one that nobody wants to join, but it is invaluable at our times of need. I am glad to hear that you feel happier now that you have a date to work towards.

Kind regards,

Jolamine xx

Hi Jolamine, I was suprised at just how many people are affected by cancer. I think it takes yourself or someone you know to have cancer before you even realise it but now I've been through this I do want to help others if possible. I know a lot of charities are struggling, this COVID has been a terrible thing.

I will, I know at the moment I'm not able to properly grieve. There's lots happening which is keeping me busy but once everything has settled down I think that's when it will hit me. At the moment it's quite surreal and you are just getting through it because you have too. I did have my worst day so far yesterday but that was because I started thinking. At the moment it's best not to think too much as it then starts dawning on me and it still doesn't feel real at the moment.

I'm so sorry to hear your mum went through that. I have never known it any other way than this so I presumed they can tell you exactly what kind of cancer you had and what stage it is at. It sounds like these are not things that were available before. I did look at brain radiotherapy and realised that it used to be Whole brain only which carried a lot more symptoms so I know my mum was lucky to be able to have SRS instead. I'm glad you got better treatment although I know that's no consolation after what happened to your mum. I think we are lucky that there are people out there for us. I remember my mum saying there were no such things as support groups many years ago, you just got on with it. I can't imagine having no way of finding out information or having people to support you. It must have been very difficult and lonely. I think you are very strong. I don't blame you for falling to pieces, I don't know the feeling but I can only imagine how life changing it is. I don't think anybody will know unless they have gone through it. I am glad you are feeling stronger now. From what I can tell you are a very kind caring person and the support you give others means a lot. It really does to me, just to know there's someone there if you have any worries means a lot.
It really is a godsend here, this is the place you never know about until you have to. I am very thankful it is here and also very grateful I met you. Yes I feel a little bit more settled, I'm still don't feel like it's really happening but I imagine that's a common feeling after going through a loss. Thank you so much for all your support Jolamine. X

Simon

Hi Simon,

I suspect that many people are unaware of how prevalent cancer is in the general population. It is great that you want to help when you can. Wait and see how you cope with your grief first before comitting to any fundraising. Some people find that it helps them to have something to do whilst grieving and, this helps them to get through it, but others could never do it.

I am so sorry to hear that yesterday was a bad day for you - you will find that some days are worse than others. Yes, my poor mum had a terrible time. She developed metastases in her brain, bone, liver and lungs, but was offered no treatment whatsoever at that stage. Many of the diagnostics, tests and treatments that we all take for granted, were not available. There were no support groups and not everyone had access to the internet. We really are very fortunate now, by comparison.

This is indeed the forum that nobody wants to join, but when we do, we do get some great support and, this is a tremendous help as we travel along our cancer journeys. I am glad to hear that you are finding my support  of some help. I only wish that I could take all your pain away, but alas, we both know that this is not how it works.

Please don't beat yourself up when you have a bad day. This is like a rollercoaster. One day is not too bad, then the next is really hard. You never really know which mood you are going to face each moring. When you have a bad day, just put it behind you and try to find something good in the next

Take care.

Jolamine xx

Hi Jolamine, yes I know at the moment I think I need to fill my head with things but I know that's not always possible. I keep saying to my dad we are not grieving yet. We are just going through the motions and it will really start once everything settles down and th me funeral is over. I do hope to help in some way, whenever I am able to. I know my mum would want me to do it but I also know she understands I will need time to get over her not being here.

Days really are up and down. Some times you feel ok and others you are breaking down thinking you can't do it. I know there's nothing you can do and you just have to go with it. I am spending a lot of time just trying to keep everything going at home. My sister is helping with the cleaning so that's one less thing for me to worry too much about.

I'm so sorry to hear that. It must have been so frustrating to not know what was going on apart from it was spreading and there's nothing you can do. We are very lucky in comparison. There's a lot of support out there if you look for it. I'm sorry your mum want able to have any of the treatments that we have now.

You are a very big help Jolamine, believe me. I am eternally grateful that I found you here. Sometimes you just need someone to help you when you feel out of control and you did that for me and you still are doing it. A lot of time's you aren't sure if what you are feeling is normal but it's reassuring when someone says it's ok and it's normal to feel like this.

Thank you Jolamine, I am just taking it day by day at the moment. I know there's not much else I can do at the moment. I have to just go with it and do the best I can. Thank you again.

Simon

Hi Simon,

Your feelings will change from one minute to the next. This is normal, so don't worry about it. How are you managing to cope at home? I am glad to hear that your sister is helping out with the cleaning, but will she be able to continue doing this, or do you need to make other plans long-term?

How is your dad coping with all that is going on?

I'm here for you anytime.

Kind regards,

Jolamine xx

Hi Jolamine, thank you. I do feel up and down from one hour to the next but I think that is to be expected. My sister is coming round when we need her to help out. I can do some stuff but other bits make me too dizzy. She is looking to do it for the long term as far as I know. She said she will do it as long as she's able to but obviously if she can't we will have to try and get some outside help. My dad still insists he doesn't want carers. He is managing but only just, he's but one to show emotions so he just does his own thing but he must be feeling the difference without my mum looking after him. I said I wouldn't be able to care for him like my mum did but he insists he won't have carers as he can do it himself. For the mean time I will have to leave him too it, I'm just about managing myself so I can't really look after him at the same time.
 

My sister did organise carers before and he could have had them. We got as far as picking the companies we were going to use but he said he can do it himself. I think he is going to get worse without care but i told him I can't do it because of my own issues. I still do bits where I can but it's not enough I don't think. I think he will have to try on his own before he realises he really does need help, at some point in the future he may get more ill and then change his mind on what help he needs. Thank you Jolamine. X

Simon

Hi Simon,

I hope that you've been feeling a little better these last 2 days. Finding your feelings varying from one hour to the next is to be expected at this stage.

You are right about your dad. He will probably eventually come to realise that he cannot manage on his own, although it sounds as if he might be stubborn enough not to confess to this for a while after he knows that he should accept any help offered. Taking on the cleaning etc, is a lot for your sister to take on permanently, on top ofher other commitments. Just make sure that she is not taking on too much.

Thinking of you all.

Kind regards,

Jolamine xx