Clare UK

Great news about the bird Janet!

Okay so it's now Wednesday here in the UK but yikes I'm tired just reading this. And hungry too! Busy two weeks with mum in hospital and then organising the funeral which was Monday. Went really well too - but more on that another time. It's after 1am and I'm tired

We met with the minister today to discuss mam's service. Although she wasn't religious, she was very traditional so we opted for a reading from the bible and asked for recommendations. This was the first one he read. It really touched me and was so appropriate God looked around his garden And found an empty place, He then looked down upon the earth And saw your tired face. He put his arms around you And lifted you to rest. God's garden must be beautiful He always takes the best. He knew that you were suffering He knew you were in pain. He knew that you would never Get well on earth again. He saw the road was getting rough And the hills were hard to climb. So he closed your weary eyelids And whispered, 'Peace be Thine'. It broke our hearts to lose you But you didn't go alone, For part of us went with you The day God called you home.

Thanks everyone for your warm wishes and kind words. Funeral is on Monday. My autocorrect just tried to change "on Monday" to "onion day" - it must know that I will be shedding a tear or ten that day!! I'm still waiting for the news to sink in really. Everything happened so quickly at the end, just two days before, Mum was still leading a relatively normal life - well, the new normal. But I mean still walking about, we'd been shopping a few days before with the help of her wheelchair. Although sudden, I'm relieved it was this way. Mum would have hated to have been bed ridden with an oxygen mask, continuous pain relief through a syringe driver etc. thankfully although this was the case for her last hours with us, she was too confused to understand. Love and miss her so much!

Sorry for the belated post but this is great news! Congratulations!!

Oh Erika, I'm so sorry to read this. Hugs to you and your family xxx

Hi All, Mam decided to give the new treatment a go but the side effects were so bad for her that she didn't want any more. A neutropenic score if 0 and a week in hospital recovering were just too much. Five short weeks later, she was suffering dizzy spells and after a fall at home, we took her to the emergency room on Tuesday. Severely dehydrated, they put her straight on an iV for fluids. With no fluids coming back out, despite a catheter being fitted, a scan on her kidneys revealed that there was no blockage but the cancer had spread. With no further treatment available for her, she was made comfortable and, with family around her, she died quickly and restfully yesterday evening, 10 months and 1 day after her diagnosis. At the same time as being devastated, I am so very thankful that when the end came, it was quick, almost virtually painless and she had very little awareness at the end of what was happening.

Sadly the weather is the same gear in the North East of England. More snow this morning. Am so looking forward to summer. Although spring would be a welcome interlude right now! But, the main news today is I went ice skating. I'm still in one piece and managed to stay not quite upright, but on my skates at least! Lots of wobbling but didn't fall over. It's certainly a lot harder than I remember. I'm certainly not going to give up though! There are too few ice rinks here in the UK so I'm planning on taking full advantage of there being one just around the corner from me.

Hey everyone. Not sure if I'm posting in the right day here. I get so muddled with my days now that I'm not working. It's Tuesday here, I think. Anyways, how's everyone doing? Awesome to hear You finally got your bird Janet and I love the name. Unusual, especially for a bird!! Can't wait to hear more as the two of you get to know each other. It's been a while since I've been on. A bit of a hectic week as mum was admitted into hospital with low platelets / white blood count and a neutropenic score of zero (yikes) After her new chemo last week. My hands are so dry they're painful from the extra hand washing and alcohol spray! She's on the mend though and will hopefully be home in a few days. We had snow again yesterday, sunshine today and more snow forecast tomorrow then again later in the week. Wish spring would hurry up and arrive already. Am taking advantage of the extra time to myself whilst mum's in hospital though to recharge my batteries and I'm going ice skating tomorrow morning. That should be fun - haven't been since I was about 15, which was almost 20 years ago now. Fingers crossed I can still skate and I'll be back tomorrow night to let you all know how many times I fell on my backside! Anyway, just thought I'd pop in and say hi. Good luck in Boston Janet. Hope the trial is something that can work for you and enjoy the dinner with your family x

Well guys, a bit of an update. Mum has changed her mind about the chemo treatment. I'm not entirely happy about it, purely because I think that her mind was changed for her... When she told me, there was lots of talk about how she felt selfish for not trying the chemo after she spoke to my stepdad. So, off to the hospital we went today. Her new chemo treatment is Topoteacan - may have spelt it wrong. It's an oral chemotherapy drug, so she gets the tablets from the hospital and takes them at home for five consecutive days. Another 21 day cycle with a maximum of 6 cycles. So, keeping our fingers crossed and trying to stay positive. It has just a 15-20% success rate, but who says mum can't be one of those people. She took the first tablet today so I guess we'll find out over the next few days about how bad the side effects are going to be. Also, the Macmillan nurse ordered a wheelchair for her this week which will be good. She rarely leaves the house these days but only because she feels too tired walking. So, with the wheelchair, we're hoping we can at least take a short trip around the shops together. Fingers and toes crossed and I'll keep you all posted. Hugs Clare

Happy Friday from the UK! That's right, 1am and the usual insomnia. A little more surprising than usual today as I've been up since 6am and feel like I haven't stopped all day! Great to read some positive news today with lots of topics updated with positive results. Although my apologies because as yet, I'm not overly familiar with names Although today was the start of a new chemo day for mum (more on that on my thread which is still on Introduce Yourself in a bit) I guess I should move it to somewhere more relevant? A mini project for next time I guess. Anyway, even though it was new chemo day, today felt like a bit more of a normal day with a friend around for coffee this morning before heading to the hospital. All followed with a trip to the ice rink with my boy after school. He's got the most bizarre skating style you ever saw, but he's determined he wants to be a hockey player so he keeps on practising. I'm tempted to get him some private skating lessons - it's just so hard to commit to being able to take him at the same time every week at the moment. Definitely have to agree that getting the bird cage means that convincing hubby to get a cockatiel is definitely a case of when rather than if. Got 2 friends coming for dinner tomorrow tonight. They're my two best friends, and have been for almost 20 years, but I'm a bit worried about it if I'm honest. One if them I haven't seen in 4 months and the other not since a week or two before Christmas. I definitely feel kind of disappointed with them both that they've not been there for me when my life is falling apart. When the situations were reversed and one of them lost her fiancé a few years ago, I dropped everything, even my job and my family, to be there for her. Not that I literally left my job, but I took time off to be there for her. And I guess that I'm disappointed that despite the fact she doesn't have children and works from home, I've had less than a handful of text messages, not a single phone call or visit in over 2 months. Anyway, back onto a positive note, I've arranged to be at my mum's for 11 which means I even have time to meet another friend for breakfast in the morning so we're heading out for bacon, eggs and coffee! Cannot wait! I think this last week I realised that I was getting myself far too stressed and if I don't take care of myself, I'm not going to be in any fit state to take care of mum when she needs me the most. So, my promise to myself is to take a few hours a week to do something for myself, be it brunch with the girls, a manicure, or even just catching up with my favourite TV Show, then everyone will be so much better off. So, that's how I'll leave you for today, loving myself so that I have more love to give to everyone else x

Finally feels like spring is on it's way here in the uk. The sun was shining earlier, birds singing in the garden. Just a quick check in today as I'm exhausted. Only 9.30pm here and I am already in bed. Enjoy the rest of your day guys x

Thanks Randy! I guess for me, just coming here and typing away helps. I still don't really talk much to anyone about how I feel. As my partner and I found out last week, this isn't really the best approach. The day before scan results, he asked me to make him a cup of coffee and I had a complete breakdown. Screaming that he expects too much, doesn't support me. I'm embarrassed to admit that I was punching and kicking him before I collapsed in a sobbing heap on the kitchen floor. Bless him, he just gave me a big hug and let me cry. Thankfully I didn't hurt him. But I've never been a violent person, I've never hit anyone in my life so I was mortified afterwards. So now, I'm trying not to bottle up so much and I guess if posting here doesn't help, then I'll visit my GP about counselling... (Hugs) to all!

Thanks - will head over and have a look x

Thanks guys. She has an appointment with the cancer nurse tomorrow to discuss in more detail but she is 99.9% certain she doesn't want to go through a new type of chemo. The oncologist already advised that side effects are much worse with this second treatment. The first treatment was a great help and gave her a much improved quality of life for around 4 months. Now though the cancer has really kicked in and she is so unwell that I doubt she would be strong enough to go ahead with more than 1 or 2 rounds anyway. I guess a big part of tomorrow's appointment will be what will happen if she doesn't take the chemo. Neither of us have really gone through this with anyone so not knowing what to expect is a huge fear I have right now. As for pain control, currently she takes Tramadol and liquid morphine. However, the nurse is already looking to transfer from Tramadol to a longer lasting morphine based painkiller. I'm just happy that she felt comfortable to discuss this with me. Although it was the most difficult conversation I've had in my entire life, so often she tries to put on a brave face and not let me know how bad it really is. Just leads to shocks at the oncologist appointments because the stuff she tells him is news to me too at times. I will support her fully whatever she decides. I would hope the rest of the family will too. I just pray that if she does decide not to take any more treatment, as hard as it is for us all, and as much as I don't want to say that final goodbye, that the end is as quick and pain free as possible for her.

Mum decided she doesn't want any more chemo treatment. I 100% support her decision, but yikes it is hard!

Mum was prescribed cyclizine in the end and seems to be working better than the metaclopramide ever did. Lots of news though. The steroids never really improved her appetite but a recent visit to the oncologist and he has increased the dosage again and for the next week she is taking 8mg. We have seen a rapid decline in mum's health though and scan results yesterday confirmed that just 3 months after her chemo finished, the cancer has grown again and is worse than ever. It's too short a timespan to give her the same chemo drugs as before which worked so well so instead she will start topoteacan next week. It's tablet form so will be taken at home for 5 days from 21. Some concerns over whether she's well enough to withstand the side effects though ;(

As a relative newbie and someone that doesn't log in that often, I read some, but not all. However, I don't fully understand what this topic is. Perhaps that's the reason for a lack of new posters?

Thoughts and prayers are with you and your family right now x I followed your updates closely as my mom's SCLC diagnosis was around the same time. May the happy memories you shared help you through the coming days, weeks and months xxx

Good idea. Will give that a try. Had tried mixing the fruit juices with lemonade or sparkling water to no avail but perhaps a smoothie would be better. Just doing some research on anti emetic drugs - currently dextramethasone and metoclopramide are not providing any relief. Has anyone here got any experience of taking Olanzapine?

Thanks everyone. Quick question though if anyone is able to offer suggestions. Just before Christmas, she told me she hadn't felt hungry for months, but apart from a few days after her chemo, was eating relatively okay. Not because she was hungry, but because she knew it was mealtimes and she had to eat. Hope that makes sense. Over the last 7-10 days, mum has been suffering with nausea and vomiting and not eating very much at all. Maybe a bowl of cereal and a few biscuits each day. I think though that she has stopped eating the cereal most days. And when she does eat it, she's normally sick a little while after. I gave up nagging her to eat as this was just making us both upset and I don't want to make a big deal about it. We chat about it and she is taking fluids. We spoke to the onc a little over a week ago and he gave her steroids to boost her appetite and stop the nausea, but they aren't working. Also, anti sickness drugs don't help her. She has meal replacement drinks from the hospital but most days, I can't get her to have these either. In 6 months, she has lost 21lbs - thankfully she had a bit of weight to lose and is, for now, sitting at a perfectly healthy BMI but she can't afford to lose much more weight. The doc already has her at high risk for malnutrition. Anyone have any suggestions? Or do I just have to wait this out until she feels like eating?

We got the scan date through - 2 weeks yesterday. If that's an emergency then yikes for everyone else is all I can say! Then back to the onc on 20th feb for results. Keeping my fingers crossed that on the day, I can keep it together for my mum and myself if the news is not good.

Also, I meant to day, Trawna, thank you for sharing your lovely story. It is truly heartbreaking and I just wanted to be able to reach through my computer and give you a hug. Yet at the same time, it is so uplifting. I hope that one day I can find the same strength that you all have and my love and best wishes to you all x

Thanks Guys. Feeling so much better these last few days. Reading everyone's messages reminds me that we still have a lot to be thankful for. Six months ago, we didn't dare hope that mum would still be here to enjoy Christmas and today, tomorrow or even next week isn't the end. I guess, like mum, I will have good days, awful days and several that are somewhere in between so I'm trying to stay positive and view each day and week as a blessing. Already mum is feeling a bit better, her cold is shifting, the new steroids have stopped the vomiting and hopefully over the next few days her appetite will pick back up. One ray of sunshine she sees is that finally she has a nice healthy BMI of 26 having lost 21 pounds over the last 6 months. So, if mum can find things to smile and joke about, then so too shall I!! Not that it's doing my BMI any good. For the first time in her life, she has a sweet tooth! I never saw her eat so much chocolate!! So, when her appetite is down and she can't eat, I've started asking her to share a regular sized chocolate bar with me. If I use the excuse I'm trying to lose a few pounds so don't want a full one, she'll have a small piece and then eat the full half that I've gave her She went out with her friends tonight, just to bingo. But the first time in almost 2 weeks which is good news and she has my son staying over with her tonight. He loves her so much. He's 9. He knows she has cancer, but I haven't yet told him that she's not going to get better and I haven't broached the subject of her dying with him. I will have to eventually. But, he hasn't asked and so I'll save that conversation for another time. So, progress indeed and I've decided there's no point worrying until we have the scan and the results which will be another 2-3 weeks yet!

Hey guys, thanks for all your warm wishes. Mum finally started to recover from the radiotherapy although still not as well as she was beforehand. She caught a bit of a cold over the last week so has been a bit worse over the weekend and really poorly today. We had an appointment with her consultant today and she has a new lump. Also, one of the ones which had reduced so dramatically during chemo you couldn't feel it anymore is also back. Her appetite is gone and she is being sick a lot. We have to wait for a scan to be sure but it looks like just 2 short months after her chemo ended, which had such positive results in giving her improved quality of life and dramatic pain reduction, we are already back on the downward spiral. I knew this would happen. I just didn't expect it to be so soon and for it to happen so fast. I always wondered if the radiotherapy side effects were really the cancer already starting to grow and that's why they seemed to get worse rather than better. I suspect my mom thought this too but didn't want to worry us as she was so matter of fact and unsurprised about the whole thing. I'm so scared. Apart from when I went away to Uni, there isn't a day in my whole life where I haven't at least spoken to her on the phone. The thought that she could have so little time left terrifies me...