Hi Sighill,

I am so sorry to hear of your current circumstances. This is a particularly hard and heartbreaking time. I have been through it with my own mum. While you have her try to  get past the fact that you are losing her and support her as much as you can. Tell her how much you love her and don't leave anything left unsaid. 65 is certainly not old, but sadly cancer is no respector of age.

Do you have any help or support to care for her or are you trying to do this on your own? In situations like this, you somehow or other find the strength to get through this ordeal, but it helps tremendously to have someone to support you.

Thinking of you both and I sincerely hope that your mum's tiredness settles down soon. Please keep in touch. We are always here for you.

Kind regards,

Jolamine xx

Thank you for the kind words Jolamine. It means a lot knowing that there are people who can support you through this. I do have some support. My sister comes round and helps out. My father is at home but he is disabled so not able to do much. I know you are right about appreciating my mum while she's here. I do always tell her how much she means to me all the time and I appreciate every minute I can spend with her. It's so difficult thinking of what will happen in the future without her. I can't bear the thought of living without her. She's everything to me and I don't want to imagine her not being here. I think everything will be so empty. I think the pain of seeing her get worse is unlike anything I've ever felt before. It physically hurts, I have never felt pain like it. I am trying best to get through it and enjoy the time I can spend with her. Thank you so much for the support, it means a lot. X

Hi Jolamine, I do understand about treatment. Originally I wanted my mum to have everything we could get but they only offered her radiotherapy. That was before they found out she had brain Mets so that treatment came first then it was supposed to be on the lung next. Once I saw my mum in discomfort with the cancer I did change my mind about the treatment. I originally wanted her to have chemo or radiotherapy and everything they could give her but I don't think I can see her in pain. It's too much. It has too be what she wants. I want her to be here forever but I can't see her suffer. She needs to be here as long as she can and she's comfortable. 

I'm glad your mum found peace. I'm sure she is very proud of you. I know my mum just wants me to be happy. She has told me to try and get on with my life and be happy. I do want to do that even though at the moment the thought of living without her makes me feel like I can't get through it. I know I will but it is so hard. It feels like your chest is being ripped apart.

I do have a photograph and I already have it up in my room. I think that will definitely help. I want as many memories as I can possibly have. She's such a big part of my life, I want to keep her with me always. Thank you for the kind words Jolamine, it means a lot. I hope she can get home soon so we can look after her. X

Hi Simon,

It is so difficult to watch a loved one suffer, especially when you know that it won't increase their chances by much. It is so hard to do what your mum wants, whether or not you agree with this decision, but it is the best way.

Can I be very rude and ask what your medical problems are and, will you still be able to live independently after your mum has passed? This is a personal question and, you don't have to answer it if you don't want to. I just worry that there may be other contingencies to be considered in the meantime.

I am sure that your photograph will help greatly. Although you want as many memories of your mum around as possible, remember that you don't need to create a shrine. Many of these memries , you carry in your heat and always will. It is not always healthy to have too many physical reminders around you, as you will also have to eventually move on with your own life. This may sound harsh, but I am sure that this is what your mum would want.

I hope that you don't find me too frank. I tend to tell things as I see them and certainly don't mean to upset you.

Kind regards,

Jolamine 

Hi Jolamine, yes I do understand it's my mum who's important here. She needs to do what she can but when she's not strong enough she needs to be able to go peacefully hopefully. That's not rude, it's fine. I have an undiagnosed condition with severe dizziness. Basically I've had many tests over the years and they could never find out what caused it. It  affects me as I can only have my head in certain positions without causing the dizziness to flare up. My mum has always looked after me and done as much as she can. I am managing to do as much as I can but my sister does come round to help with the house as it's too much for me to try and look after everything. If I do something or clean up I usually need to have a rest after until my head has settled down. I am unable to work or drive and just go out when I have too as it's quite difficult. I do manage if I have to go somewhere though as long as it's not for too long.

I do understand what you mean, my first thoughts are to have as much stuff aroumd me as possible but I know that might not help in the long run. My thoughts are everywhere, I don't really know what I want. I just want my mum here but I know that's not going to possible at some point. That's fine Jolamine, it's helpful to speak to someone who understands what I'm going through, to know that it's not just me who feels like this. I appreciate you helping me through this. Thank you. X

Simon

Hi Simon,

I am sorry to hear about your condition, but it sounds as if you could live independently with the help of your sister, or a home help. Your dizziness must be quite frustrating at times, especially when it remains undiagnosed. Does any medication help you?

Kind regards,

Jolamine xx

Hi Jolamine, it is very frustrating. As it's dizziness most people think just get on with it and I really would if I could but it is very debilitating. I would love to be able to do normal things but my head won't allow it. I even paid to go private and they still couldn't help me. I've tried to learn to live with it. I take an anti depressant through the day to help with anxiety and Diazepam at night to help me sleep. I really did struggle to sleep originally so I am thankful that these medications help me. I do think I would be able to live on my own if I had some assistance. At the moment I'm still at home due to my illness. My dad is here but he has his own problems. He's not very mobile so it would be me doing most things. I would be able to manage with help though, I'm sure my sister will help out where she can. I think because my mum has always looked after me it's even more daunting to try and think about doing even normal everyday things. I have had to start doing more things since she became ill and I am finding despite the fact I have some bad dizzy spells and have to stop I have been managing for the most part which I am grateful for. Thank you Jolamine. X

Simon 

Hi Simon,

I can only imagine how difficult this must be for you. Have you had any recent investigation for this problem? Scans and tests have come a long way in the past 18 years and, it might be worth re-visiting the problem to see if you can get any answers now. I have problems with dizziness myself, so know how debilitating that can be.

I can understand how much worse this all seems to you, when your mum has been caring for you and your dad all this time. It would be one thing to care for yourself, but quite another when you'd have to care for your dad as well. It is great to hear that your sister will help out where he can, but will this be enough for you?

Sorry to raise these questions, but I always like to be prepared for any eventuality.

Kind regards,

Jolamine

Hi Jolamine, sorry to hear you have dizziness problems as well. It's really frustrating isn't it, people don't quite understand when you say you are dizzy. They think what's wrong with you. I did have prolonged tests over a couple of years and they couldn't pinpoint the problem so they more or less said carry on there's nothing we can do. I do try and carry on with it as best as possible. It may be time for me to be rechecked at some point though. Maybe something new can be done. My doctor always seemed to think I had checked everything and there was nothing more they could do.

My dad is able to do certain things but he is limited. He has had 2 strokes so he isn't really safe as far as cooking or anything like that. We were looking at getting carers in for him but he decided he doesn't need them. I believe he does but I can't make him do it if he doesn't want to. I think if he does get more ill he will realize there is no choice for him. My sister is very helpful, she does have her own family though so she can't always be here. I am managing to get by on my own though. I just have to limit what I do. I was looking after my mum before she went into hospital and I did struggle a little more then. I feel like there is less to do now. I think that's because I'm so worried about her when shes here I'm trying to look after her. I think I let the stress get on top of me as well. Hopefully when she can come home I need to relax more. I can feel myself on edge constantly worrying and I know that doesn't help anybody. Thankyou. X

Simon 

Hi Simon,

It might well be worth getting things checked out again, as medicine is advancing all the time. If your dad doesn't want carers in perhaps you could get them in on your behalf? If you are having dizzy spells too, it cannot be too safe for you to do the cooking any more than for your dad. Although it is great that your sister helps out all she can, it isn't really fair to depend upon her totally when she has her own family to take care of.

You may find that there is a lot more to do when your mum comes out of hospital, so it might be worth revisiting the subject of carers with your dad in this respect. Instead of having to do the more mundane tasks, this would give you more quality time to spend with your mum and, this is so precious at this stage.

Kind regards,

Jolamine xx

Hi Jolamine, yes it's definitely something I'm open too. The only difficulty is travelling as these tests are usually quite a distance away from me which in turn affects my head again. I know I will have to do this though if I want to get anywhere with my condition. I generally know when I will have the dizzy spells so I can usually stop when I need to. It's more like once I start feeling it then I have to rest for most of the day and see how my head feels the next day. I think I can manage most bits, I just can't stand up for too long or that usually makes it worse. My sister is busy and she does have her own business so I know she cant always be here. 

I think you are right, I'm not sure how it will be. I would definitely imagine there will be a lot more to do. The caring will be more full time than before. I will try and ask him again, he just shut down the idea completely stating he doesn't need them. He's trying to prove his independence and sits on tablets and computers all day. He has bad legs which need checking as he's prone to infection and he doesn't do it. He will end up very ill himself if he is not careful. He had an infection last time in his leg and ended up in hospital. My mum used to look after him but she has had to stop since she got worse. It's really tough at the moment. I just want my mum to get out of hospital, she's not happy there and no one has really told us how she is doing. It's so frustrating with covid, I just want to see her. She sometimes gets confused and I don't know whether it's the medication or the cancer. They said they will reassess this week and tell us what's happening. You just get that constant dread feeling in your stomach. Every time I wake up I think how will I get through today. I know I will but it is hard. Sorry to go on, I just feel like I have so many things happening and it's hard to stay in control. Thank you for listening Jolamine, it's very kind of you. X

Hi Simon,

It certainly sounds as if it might be worth revisiting this to see if newer technology can shed some light on the problem. Once you know the cause or trigger, you might be able to find a cure for this. I didn't realise that your sister also runs her own business. She must be a very busy lady already.

From experience, I expect that care of your mum will be more 'full on' when she comes home. You may find that she is bed-bound and may eventally have to deal with incontinence issues and a lot more washing. You may also find that it is difficult to find tasty *** bits of food that she can eat as her tastes could vary from time to time. You will also have to watch her medication and liaise with nurses and doctors to ensure that this changes as she needs more pain relief. You may find that she needs to be washed and changed more regularly than usual and, it can be difficult to do things like washing her hair. This can also become a 24 hour a day job, which is just not possible for 1 healthy person to do on their own. Perhaps you and your sister could put it to your dad that this is for the benefit of all of you and not just him. 

Having carers in will ensure that you get incontinence pads, creams and whatever is needed to help to keep your mum comfortable. I can see where your dad is coming from, but I fear that he is only thinking of himself and not of the additional burden that is likely to be placed upon you and your sister. It sounds as if your mum would qualify for carers on her own behalf. Perhaps this is the best place to start?

You have so much going on in your life, I'm not surprised that you feel confused. I hope that you hear more about your mum's condition from the hospital this week. It is so frustrating when they don't tell you anything.

Kind regards,

Jolamine 

Hi Simon,

It certainly sounds as if it might be worth revisiting this to see if newer technology can shed some light on the problem. Once you know the cause or trigger, you might be able to find a cure for this. I didn't realise that your sister also runs her own business. She must be a very busy lady already.

From experience, I expect that care of your mum will be more 'full on' when she comes home. You may find that she is bed-bound and may eventally have to deal with incontinence issues and a lot more washing. You may also find that it is difficult to find tasty *** bits of food that she can eat as her tastes could vary from time to time. You will also have to watch her medication and liaise with nurses and doctors to ensure that this changes as she needs more pain relief. You may find that she needs to be washed and changed more regularly than usual and, it can be difficult to do things like washing her hair. This can also become a 24 hour a day job, which is just not possible for 1 healthy person to do on their own. Perhaps you and your sister could put it to your dad that this is for the benefit of all of you and not just him. 

Having carers in will ensure that you get incontinence pads, creams and whatever is needed to help to keep your mum comfortable. I can see where your dad is coming from, but I fear that he is only thinking of himself and not of the additional burden that is likely to be placed upon you and your sister. It sounds as if your mum would qualify for carers on her own behalf. Perhaps this is the best place to start?

You have so much going on in your life, I'm not surprised that you feel confused. I hope that you hear more about your mum's condition from the hospital this week. It is so frustrating when they don't tell you anything.

Kind regards,

Jolamine 

Hi Jolamine, I think it would definitely be worth looking into. I've always been put off by the fact that my doctor says I've already been everywhere once and he doesn't think they will find anything. Apart from feeling rough from the travelling it would definitely be worth it if they could help me. I've pretty much just accepted that I will always have this problem and tried to learn to carry on as best as I can.

My sister is very busy, she has shut her business for the time being though to help with my mum. I know she can't be here all the time though. We are In touch with district nurses and we also have Macmillan nurses who visit every few weeks.I think we will need a lot of help as I know it will be far too much for me to do myself. You have already mentioned things I didn't even think off. Hopefully once she gets home from hospital they will get everything in place and give her the care she needs. I think her morphine has been raised so she will definitely need a nurse to come round and help. I'm not sure how mobile she is but from what she said I don't think she can do anything by herself but she has started physiotherapy so hopefully that will help her get a little strength back if possible. I know the food will be difficult, she wasn't eating very well at all and I know she is still struggling to get much down. I can only encourage her, I know if she doesn't want to eat I shouldn't force her no matter how hard it is to see her not eat. 

I think my dad thinks he will be able to help but I don't think he will be able to do much. As long as my mum gets the help she needs that is the important thing. I did speak to the doctors finally. They said they her calcium levels are getting back to normal and I think she has 3 days left on the antibiotics and then they are going to decide the next step and see what amount of care she will need. I think the cancer is now affecting the kidneys as she is passing blood. They said they may look at radiotherapy for the kidney later on. I think she is having some pain in her back as well I'm guessing because of the kidneys so the medication will need to be upped. She also now has a catheter in, I'm not sure whether that will be able to removed later or not. I just want her home although I know it will be hard. Thank you for the kind words Jolamine, it means a lot. X

Simon

Hi Simon,

It would surely be well worth the travelling if you managed to get some answers? I am so glad to hear that you finally got to speak to a doctor today. It is good to hear that her calcium levels are improving and that she only has 3 more days of antibiotics. I would imagine that the pain in her back could well be due to her kidney problems. Be prepared that they may well leave the catheter in as this means that they don't have to move her to get to the toilet, especially if she is in pain. Still, it sounds hopeful that they feel that they may be able to give her chemo later on.

I hope that I didn't upset you by mentioning the things I did, but I felt that you are better to be aware of what you may be facing. Just be sure to ask about arranging carers when you know that your mum will be getting home. I do so hope that she continues to improve and that she will be allowed home soon.

kind regards,

Jolamine xx

Hi Jolamine, no don't worry that's fine. I appreciate you being honest. It prepares me for the reality of what can happen. Thank you, I believe there is a meeting tomorrow between my sister and the social services so hopefully they are looking into letting my mum come home. She said she doesn't feel great but I know they are still giving her antibiotics. Hopefully she can feel a little better and be able to come home soon. I think she would need to have the catheter left in for a little while. I'm not sure how her pain is but anything that helps her would be better. I'm hoping maybe my sister can video call from the hospital. They are only letting her in as it's a meeting to see about where to go from here. I'm glad mum will be able too see a familiar face. I managed to speak to her tonight and she seems ok but still a little confused. She thought it was morning even though it is night. I worry that she's getting confused and she may never be the same. I know there's a chance it's the infection although I believe this can happen with the cancer too. I'm glad I managed to speak to her though. It's so tough when you can't see her but l am keeping my fingers crossed I will be able to soon.

It would be worth it to find anything out with my dizziness. I've spent so long just accepting that I have this problem so anything that could be done would be amazing. It's something I should bring up with my doctor. Thank you for your support Jolamine, it means a lot. X

Simon 

Hi Simon,

I hope that your sister manages to make some headway with social services tomorrow and that your mum can get home soon. I'm sure that your mum will be delighted to see a familiar face in person. What an awful year we've had, when we cannot even visit our loved ones in hospital! It is easy to get confused in hospital, where one day seems the same as the next. In better times we would have visiting times and relatives to keep us right.

I'm glad that you managed to speak to her tonight, even though I can tell that you are upset by her confusion. Confusion can come with cancer, but here's hoping that this is more to do with the constraints of the pandemic than anything else.

You should certainly have a chat with your doctor about re-visiting your condition after so long. Be prepared to insist on getting a referral to get this investigated, as it is all too easy for GP's to let sleeping dogs lie, but it's not them who have to deal with this day in day out.

Jolamine xx

Hi Jolamine, thank you for the kind words. Hopefully we find out more tomorrow and we can start to begin getting mum home. Yeah I'm glad that she will finally be able to see a familiar face. It's awful what's happening with this pandemic. I really feel for all the people who are suffering with this, it really doesn't seem fair. Any other time we would be with our loved ones every chance we got as you said. I am a little worried about the confusion but as you said when you are in hospital every day can feel the same and you don't really know what time it is. Hopefully it is just that she has been resting and was a little groggy when I asked. 

I will do, I know doctors do like to push things to one side if they can. You seem to have to really work to get things done. I will definitely push though, as you said it's easy to do nothing but another to live with it. It can be quite difficult. Thank you again Jolamine. X

Simon 

Hi Jolamine, I just got some awful news. My sister was supposed to be going to find out when my mum could go home but my mum had been put on oxygen. She was having trouble breathing. When they checked they found out her lung had collapsed and the stent they put in was no longer working. They were going to see whether they could drain some fluid from her lung but once she had a scan they found out that she had had a heart attack. The doctor them said there's nothing more they can do and my mum said can I go home. We have just had oxygen and a bed delivered and she is coming home tonight hopefully. I am absolutely devastated and partly numb. I just keep crying. I jist want to be with her. They asked the doctor how long she had left and she just said not long. I don't know whether that means days or weeks. This Is so heartbreaking, I feel like my world has just stopped and I'm struggling to function. X

Oh Simon,

I am so sorry to hear this, but I am glad to hear that your mum is managing to get home. It sounds as if they have been quick to deliver the hospital bed and oxygen and I hope that they have put a care package together for her too. It sounds as if your mum is being strong about this and is still able to express her wishes, when she asked to get home.

 You will feel absolutely devastated, but you will need to be the strong one for your mum from now on in. It is so hard to cope when you know that there's not long left, but at least she is home with the family again. I'm sure that you'll all find it easier having her in the midst of the family again - so much better than not being able to even visit your mum in hospital. It is hard to know whether it is days or weeks and, this is something which we all want to know at this stage.

It goes without saying that I am always here for you.

Kind regards,

Jolamine xx

Hi Jolamine, thank you for your kind words. My mum is home now. I am still shocked but it is good to have her home. I feel like there is a little more calmness now as I can help her. It is such a terrible feeling when you cant see your loved ones. It almost feels like a reassurance that she's here now. The hospital and doctors did amazing. They got the oxygen here within 3 hours and the bed was there at night. I was so happy to see my mum, the relief was huge.

It is hard when you don't know how long you have left. I just want to enjoy the time we have, how ever long it will be I know it won't be long but I do feel lucky to have her home where she wanted to be. My mum is a lot happier at home which makes it easier for me. I am a bit worried everytime I walk out of the room but I guess that's normal. I'm sleeping with her and my sister is round too to support. We have had lots of support, the district nurses and carers are coming round 4 times a day which is good. Hopefully my mum can stay pain free. Thank you so much for the support Jolamine. X

Simon

Hi Simon,

I am so glad to hear that your mum did get home last night and I expect that you are all feeling much happier about this. It is so hard when you cannot visit a loved one in hospital, but all the more difficult when you know that the time is limited. There is always the knowledge that they could pass without any of the family being present - I expect that this was a scary possibility for your mum, as well as for the rest of the family. The hospital has done well to arrange all the necessary contingencies and to get her home as quickly as it did - it just shows that they can move when they want to!

You know that your time togethe is finite, so I'm delighted to hear that you want to make the most of whatever time you have left. If there's anything that you want to speak to your mum about, make sure to do it soon, as there may come a time when she speaks less and less and sleeps a lot more. I hope that her confusion is not so obvious, now that she is back home again.

How is your dad coping with having the carers in 4 times a day? We had this with my mother-in-law and, although my father-in-law found it an intrusion, he couldn't have managed without them at the end. Keep an eye on your mum's pain levels. If you don't feel that her medication is managing this, mention this to the nurses, as they should be able to keep her comfortable, provided that they're aware of the need to do so.

I sincerely hope that you can all get some quality time now that you are all together again.

Kind regards,

Jolamine xx

Hi Jolamine, yes I think the relief of getting her home was huge. I know it's going to be tough but I just want to try and make the most of it. I know that she could become more and more sleepy. I try not to think about it to much but I know I need to say everything I want to now. Her confusion doesn't seem as bad so hopefully she can stay like that for as long as possible. I think being in the hospital was too much for her. She said she couldn't take it any more. 

My dad is ok, he's not really getting too involved. He's not a big fan of carers but  as it's just for my mum he doesn't really mind and accepts it. I'm sorry your Father in Law didn't like it. We get a lot of visits and it feels like my mum is getting more tired but I know that is natural. She is managing ok for pain at the moment. I will be sure to tell the nurses if anything changes. We are just trying to make her breathing comfortable as she constantly feels hot. We have a fan next to her and are using a cold rag to cool her down. I feel happy that I'm spending time with her but sad that's she's dying. It's a whole mix of emotions. It's too much to process but I know I need to take one thing at a time.Thank you for everything Jolamine, your support means a lot to me. X

Simon