A little sad

Hi ladies, hope everyone doing ok.

Just feeling a little sad and disheartened and you have been so supportive any time I post that I said I would do so again.

Mam has been on cyclophosphamide daily and avastin fortnightly since early November when she had ascites drained. She was great until Christmas but has been so fatigued since then. Her homecare nurse suggested 2 weeks of dexamethazone to pick her up, on previous chemo regimes she used deltacortril from time to time. The dexamethazone doesnt seem to have helped. I have started bringing her for acupuncture when she is stsying with me for chemo in the hope that it would help but she has only had a couple of session so far.

She is due more avastin tomorrow so we will see if that goes ahead, her bloods have been good so far. She has a scan next Tuesday and results the following Tuesday, the 10th, so I suppose we will see what the story is then and I imagine she will have to have a break or a change of regime regardless of the results. I had to see the GP myself today and in the waiting room was in the company of several older ladies with sensible shoes (mam is all about the sensible shoes!) and it made me sad to think of how much independence mam has lost and to think of losing her. In fairness she has bounced back quite well once off chemo but has had very little time off it since diagnosis 2 years ago.

Its a help just to write this, but im posting anyway as this is such a great group.

Mary x

29 Replies

  • Hang in there Mary. This is tough to watch. I sometimes think treatment is harder on those watching than those living it. Please take care of yourself. Mam is lucky to have you.


  • I also think it is difficult to watch your loved one suffering but the only way is to fight the nastly illness with all your might, who knows what new treatment is around the corner. Gillx

  • Dear Mary,

    Sometimes I think it is harder for people like you who are watching and caring than for the people who have the disease. Being sad is sometimes just part of the deal, isn't it, you'd be a robot if you never felt disheartened now and again. And then other times will come again where the sun is shining or you have a laugh with your mam and that's allowed too! I bet your mam is so proud of you for how you are looking out for her. Hang in there.



  • I think it's sometimes harder to watch. I was heartbroken when Mum was ill so I can understand. Xx

  • I have been on chemo for 5 of the past 10 years. The body really does seem to adjust to it, and able to get over side effects...I'm living a normal life with cancer. Now in my 11th year, and Chemo is my best friend!!!!!!! Currently not on it, but will have no problem if needed again. Tell her it is better than having dialysis everyday! Be grateful it is helping.

  • That's wonderful that you can live normally. Are you able to cope well with the side effects during chemo? Mam's body doesn't really seem to be adjusting, just getting tireder and able to do less and less, but maybe the cold weather is an extra burden on her right now. We don't know if this regime is helping, although her bloods are good and no symptoms of ascites.

  • Much harder at the beginning, but the years have made it as natural as "going to get my nails done". I've had ascites drained 6 times in 2 years and now, nothing in the past year. It is as if it is a "chronic" disease that I just live with. It gets soooo much easier as time goes on. But the big thing is this...do not baby her. Find a way to laugh at the stupidity of having cancer. I went alone for my chemos, then went shopping. She must train herself to treat it as if it were a mild inconvenience. Laugh at herself. Take her naps, but get up and be HAPPY. She must force herself. Everytime I went to chemo (over 50 times) I prayed "Dear Lord, let this chemo be gentle to my body but deadly to my cancer..Dear Lord, make me well" My mantra. I have seen women over the years make their own death sentences because they dwelled on the cancer. Put it aside and go on with life! ( Just to let you know, I was in late stage metatastic ) and I am going on. It does not control my life. My Drs. actually do believe that my cancer is being controlled so much by my attitude. Cancer is a living thing, and it hates when it is not noticed! No survivor shirts, survivor walks, etc. I know it seems harsh now for her, but she MUST live in joy! That's my advice and I'm stickin to it!

  • It's so great to hear a positive story. My Mum had treatment for Ovarian cancer throughout 2014 but it has recurred. She is so positive. She starts some new chemo on 13 Feb (Liposomal doxorubicin) to help manage the cancer. She's been told it will never go away but hopefully will be kept under control with the chemo. She is still quite strong despite being 78 and she is a very positive person. I'm hoping this recurrence won't be too much for her to cope with and that she will be able to keep up the fight. She was diagnosed on Christmas Eve 2013 but she thinks the cancer may have been lurking for quite some time as she had felt unwell for most of 2013. I think her cancer was graded 3c so I think that is quite advanced. So I always had a niggling worry about her getting over it. I'm really hoping that the chemo will keep her going for some time yet. It's been such a blow to her but I think she's slowly re-adjusting. :-)

  • Thank you!

  • Just read your post.so inspiraring.frist year iwas diagnosed was really anxious.,i now come to terms with it and treat it like any person chronic disorder.walking seen to lift my spirit.must release happy hormones.i agree laughing and joke about helps.being around happy people.working at charity shop two hours has helped.hope this helps.but don't want to come across as patronising.xxxx

  • Inspirational, hannakat. Thank you so mc uch.

  • HI Mary, its okay to feel a little down and sad as long as you can bring yourself back to the moment, It must be difficult for you to see your Mum tired and not herself. Look acqupuncture can do no harm. Would you bring her to Solas for a light massage, that sometimes helped me through the treatment. They would be qualified there to do a proper reflexology or head massage for Cancer patients. The weather is cold and its dull and dreary and it is hard to get yourself going from my own perspective. Another remedy for tired feet is bathe them in warm water with some epsom salts. That was the old remedy for feet, you can get the epsom salts in any chemist. I do it often and the magnesium is drawn into the body by the feet, I have to say that some days I get tired from Avastin but after a rest I come around again. I hope the treatment went ahead and that the scan isnt as bad as you fear. I know what you mean about sensible shoes, when we were small the most expensive thing we had were proper shoes and that kind of lives with you. Although I do buy shoes from Dunnes but the boots I am wearing now are fairly flat. These high heels do your back no favours. Wishing you all the best and I will say a prayer and light a candle for you both Joan

  • Thanks Joan. I have suggested Solas but she doesnt feel up to it right now. I do think the cold weather is bringing her down a bit too. She just wants to hibernate, which I empathise with as I have an underactive thyroid and find this cold weather tough too. For the first 6 weeks of this, Mam would find a little rest did wonders, but since Christmas she has been quite low. Its hard to know whether its the avastin or the cyclophosphamide affecting her most. I will discuss Solas with her again, and try the epsom salts too. Thank you for your kindness and all prayers appreciated.

  • Hi Mary

    Sorry to hear about the fatigue - hopefully it doesn't reflect anything too serious. My mother was sometimes tired whilst on cyclophosphamide (& needed her daily naps) and if your mum's blood is OK, perhaps they will just need to adjust the dose. My mother also had occasional breaks from cyclophosphamide, usually when being treated for infections. Whilst the tablets were working, the breaks didn't seem to affect the treatment effects.

    Regarding the sadness...as the other ladies say, it's normal to feel sad, especially when thinking about the future. If your mother is anything like my mother was, then she will also be sad and worried about the future and that won't help with the tiredness. However, if at all possible try to enjoy your mother being with you now and make the most of it. Hard though it is, it would be awful not to enjoy time with your mum now through thinking too much about something that may not happen for a long time.

    Take care


  • Thanks Emilia (such a pretty name! ). I suppose we wil know more after mam's scan. I know fatigue is so common with chemo, I suppose for mam it seems such a slog with no guarantees, so it is an exhausting experience. Mam is not a complainer so its hard to see her so obviously low. But hopefully things will improve and we will figure out new coping strategies. And I enjoy every minute with her, in a brief bright spell this eveningshe wss bouncing on my gym ball, she's great fun. Thanks again Emilia and hope you are doing ok.

  • Thank you all so much, Xx

  • Hi Mary. My Mum had 7 chemos and a debulking op during 2014. She's 78 but a very fit and active 78 year old. I took her for her first 3 month check in Oct 2014. The oncologist said her cancer cell count was back to normal and we were so thrilled. But when she went for the next three month scan on 6 Jan with a close friend, her cancer cell count (CA125) had gone up from 14 to over 300. She was so numb and so was I. In a nutshell, there is a recurrence of the ovarian cancer and cancer showing in lymph glands and pancreas. She is starting some new chemo on 13 Feb - Liposomal Doxorubicin. The oncologist says there's a low success rate - 15-20%. It's hard to stay positive but Mum is a very fit and strong person and I've heard so many positive stories about people who manage the cancer and live for years. I'm hoping my Mum will be around for a while yet. I think she is starting to adjust to the latest news and is realising that the cancer will always be there and that she will have to manage it. I'm finding it really helpful hearing other people's stories on Ovacome. I hope your Mum will cope OK with her treatment and tell her to keep positive. My Mum has been so positive throughout but I know she will be dreading starting the chemo all over again. I live over 200 miles away from my Mum which is tricky but I visit as often as possible and will spend as much time as I can with her. It makes you realise how precious they are doesn't it. Take care. Jane x

  • Thanks Jane. We were in a similar position at the start with mam, first line, she couldn't have surgery, the first 3 chemos showed treatment was working, but the last 3 didnt work at all. We were told further chemos would have very low success rates. She had doxorubicin next, and although she only had half the course due to side effects, it gave her 6 months off chemo, so I hope it is a good fit for your mum, it would be wonderful if it was, and hopefully any side effects will ge minimal.

    Take heart though, Mam's first chemo failed in june 2013, and we were told time was short, but she is still here, and not really any less well than at the start ( apart from side effects taking their toll from time to time). Mam is only 62, and i have heard people say, I think, that older is better with cancer, i suppose slower cell renewal or something, so I hope the extra years your mum has on mine are an advantage to her.

    It is hard to get your head around the fact that the cancer is there to stay and be managed, for both you and your mum, but all any of us can do is hang in there as best we can, and as a friend said to me, do what we can, with what we've got, where we are. It's a phrase that helps me, I hope it helps you, and I wish you and your mum the very best.

    Mary x

  • Hello Mary. Sorry for the delay in replying. I've been away for the past couple of weeks. I'm going down to see my Mum for a long weekend next Wed so looking forward to that. She had her first 2nd line chemo on Friday and the effects started to kick in today. She had a reaction to the steroids and her cheeks burn. Not sure what else will happen as yet. Gosh, your Mum is so young. My Mum is 78 but still very active and should be around for some years yet. I haven't heard of many ladies having the same 2nd line chemo as Mum. I keep hearing about this chemo called Gem??? (Would have to look back at some of the other messages to remember the name of it.

    It's so scary when cancer intervenes isn't it. It's like a roller coaster ride with lots of highs and lows. I'd heard that the cancer spread can slow down in older ladies. All we can do is wait to see how things go and just spend as much time with our lovely Mums as we can. It certainly makes you realise how precious they are doesn't it?

    I hope your Mum is still managing to carry on without too much discomfort. I know my Mum has been left feeling really numb with the recurrence and it will take a lot of strength for her to bounce back. There's a lot of adjusting involved and it must be so nerve wracking with each trip to the oncologist.

    Anyway, keep in touch and sending you and your Mum lots of positive vibes. Jane xx

  • Hi Jane

    Yes my mam is quite young alright. I suppose we are in the midst of this experience a bit longer than you, and have had several disappointments, each one is still a shock though. Mam had doxorubicin as second line, which would have worked well but the side effects were too strong. Gemcitabine was next, which was tolerable but she had only a couple of months free of treatment when that ended. That's probably the Gem you are hearing about.

    Thankfully things seem brighter here than they did when I posted initially, mam is still on avastin and cyclophosphamide, her scan showed things are stable, so the chemo is doing its job, and she is going to continue with the treatment for a while longer but can take a break when she chooses. She seems in better form, increased antidepressants, acupuncture, steroids, and maybe the slightly milder weather and brighter days all helping.

    I hope your mum is starting to get her head around things again and is in better spirits. It is a big shock each time there is a disappointment, and takes a lot of mental adjustment, not to mention all the hospital trips, side effects and drug regimes to fit in and remember. Will say a prayer your mum is doing ok and that this chemo will do its job. I hope you have a lovely long weekend with her and have some fun, I am lucky that for the current chemo mam comes to stay with me as I live near the hospital she attends, and if she is feeling ok its lovely, we don't do anything special as such, just lovely to spend time together. It's very precious.

    Take care


  • Hello Mary. Sorry for the delay in replying. I sometimes find it hard to find the messages!

    I've had a lovely weekend with Mum and she says I make her feel more positive when I'm around. Wish I didn't live so far away. We have a lovely time just chilling and watching movies. My Mum is so brave but I know the recurrence has been a huge blow. She starts off the day feeling very weary but seems to improve as the day goes on.

    I know she is feeling really down with everything and I'm just hoping she will adapt and manage the treatment. She was saying how lovely it was to feel well again before the recurrence. I'm praying she will find the strength to keep fighting but I'm seeing negativity setting in at times. She's having ups and downs which isn't surprising.

    Your Mum is being so brave. It's such a battle isn't it with the side effects and the constant hospital visits. You're so lucky to live close to your Mum. I'm glad she is stable at the moment. I think the fact spring is round the corner will help. I read some really positive stories about ladies who go on for years managing the cancer. It's good to hear these positive stories. I worry about my Mum's age though and about her ability to keep fighting. She's still a very strong person and she still looks really well.

    Best of luck and tell your Mum she's doing so well.

    Thinking about you and hope things remain stable for your Mum.

    Take care. Jane x

  • Glad you had a nice weekend with your mum, it sounds lovely. It must be hard for you both being far away from each other but I'm sure your support by phone etc is a big help to her.

    I remember one of mam's chemos in particular, she was similar to your mum in that she was at her best by evening time. I suppose on chemo you just have to strike a balance between listening to your body most of the time, and sometimes just pushing through the tiredness to do something you want to do.

    Dont forget about antidepressants or steroids for your mum if she is getting very down or very worn out, its something that can be discussed with some of her care providers, for us that would be a homecare nurse, or mam's GP, rather than the nurses in the oncology unit, but I'm sure there is someone you or your mum could discuss supports like that with. I know on mam's first line chemo she was miserable, but because we (maybe naively) thought it would work, and it was just a matter of getting through it, we didnt realise steroids might help from time to time, and we didnt have a homecare nurse visiting until the first chemo failed, Mam's treatments are now seen as palliative, hence the homecare involvement.

    Hope both you and your mum are having a good week.

    Mary x

  • Hello Mary

    Yes it is very hard being so far away. Mum always emails me at night and I reply in the morning and I ring as much as possible. She's currently having problems with constantly wanting to go to the loo (waterworks!). She's not getting much sleep because of this. I have been reading about this water retention thing on Ovacome - ascites I think, and it needs draining off. I was wondering if it might be that. Just hoping it's not another growth pressing on her bladder.

    There's a problem finding a vein now when she goes for blood tests and chemo. I was reading about these lines you can have inserted - some of the ladies on Ovacome were mentioning them. I think you have to be careful showering but they sound worthwhile. Poor Mum was bruised to bits last time the nurses tried to find a vein!

    Mum doesn't actually have a nurse to talk with. I've said she should talk with Macmillan but I think she's always been nervous too - probably the denial thing.

    Like you and your Mum, we thought Mum would get through the first line chemo. The surgeon said she was so pleased with how the op went and she thought she'd got all the cancer out then at the first three month check the oncologist said the cancer cell count was back to normal. Mum was so positive. Then when she found out the cancer had come back at the next three month check the bottom fell out of her world. Her CA125 went up to over 350 from 14. I could never understand how it could happen within three months.

    So, we don't know if this chemo will keep things at bay. You don't want to hear words like 'palliative' do you but I think you just have to start to accept them. I did mention the anti depressants to Mum and were you taking your Mum to acupuncture?

    Well, thinking about you and your Mum. I'm hoping to go down to see my Mum on the weekend of Mothers' Day.

    Take care. Jane X

  • Hi Jane, hope all is well.

    I had typed a reply but accidentally deleted it, maybe no harm as it had turned into an essay! So I'll try and be more to the point!

    Mam had similar vein problems so has had a port in for the last year which works well and takes some of the hassle away. It doesn't seem to bother her or cause any problems.

    In our area we have Homecare nurses, I'm not sure if they have the same function as Macmillan nurses but it's probably similar. They have visited since Mam's first line chemo failed quite quickly, they are a good source of support, information and a friendly face. They help in practical ways eg obtaining practical supports like handrails, I can't think of better examples as mam hasn't needed anything like that, but most importantly, symptom and side effect management, for example it was them who suggested steroids at times, which were a great help. And don't worry about the palliative word, it is a shock at first, but it doesnt mean it's all over.

    Maybe you might like to speak to a Macmillan nurse yourself, and then you could reassure your mum? It is a scary thought to speak to anyone, I remember being terrified posting here in case I'd get a chorus of negative replies or that people wouldn't be gentle, which of course wasn't the case at all. Also, maybe there is a local cancer care type centre such as Penny Brohn that you could speak to and encourage your mum to visit.

    Mam has been on antidepressants before at times, and was on them pre diagnosis as she was very tired and getting down, of course we didn't realise the underlying cause of the tirednes. So she has remained on varying low doses, and also finds Xanax helpful, she can get very anxious so keeps her on an even keel. I find acupuncture helpful so have started bringing Mam, she isn't sure if it's helpful but its not doing any harm.

    This has turned into another essay! So I'll say bye for now, hope some of this helps.


  • Hello Mary. Oh no, sorry to hear you deleted your essay!!! But thanks for the useful info.

    Mum went to the docs this week about the constant peeing and had also noticed a smell, and handed over a urine sample. She went back today and they confirmed there's an infection and have prescribed a strong antibiotic. She said she's going to fill me in fully in her email tonight. She always emails me before she goes to bed and I do a reply in the morning.

    I'm sure there must be support available for Mum but she is such a proud person. She is entitled to a reduction in her council tax and is entitled to attendance allowance but she won't apply for it. She's so proud. I'm sure she could get a blue badge too as she still drives. She just won't have any of it. Drives me mad!!!

    I have suggested Mum has a chat with a MacMillan nurse but I think she's still in denial. The recurrence has been such a blow for her as she thought she'd won the battle when the first three month check went so well.

    It's really useful chatting to you and other people who are going through similar experiences. My Mum is 78 but she is so active for her age. I'm just hoping she can plod on for some time yet. It's so sad because she had a really old dog and she couldn't really go far because of the old dog. She had an ultrasound in Oct 2013 which showed up a mass. She was in a lot of discomfort then and her old dog Jake (18!!) was on his last legs. He was put to sleep in Nov 2013. Mum couldn't have coped with him much longer as he was incontinent and the carpet was covered in puppy pads!! So, it was such a sad time for Mum being diagnosed and losing Jake too. She could really do with a pet right now to take her mind off things and I sometimes think it's a shame Jake hadn't been younger. She was hoping to have some trips and things and after the positive result at the three month scan she booked a London theatre trip her, my sister and me at the end of June and I am praying she will be able to go. She also booked a holiday with the gardening club for September. I really hope she will be able to do these things but it's difficult to feel positive sometimes isn't it.

    Anyway, we must keep positive for our Mums even though it is a roller coaster ride.

    Catch up again soon. Jane x

  • Hi Mary. Mum emailed me and she has a urinary infection and has some very strong antibiotics to take. She's due to have her second chemo next Friday but this may delay it. She's really upset and wished she'd gone to the doctors sooner. I'm really worried about the possible delay to the chemo. I wonder if it will mess things up. We don't even know if the chemo is working yet as she's only just had one. It's so worrying isn't it. X

  • Hi Jane.

    Your poor Mum. That was hard to lose her dog at the same time. Hope the infection is improving. Unfortunately there are setbacks like that from time to time but don't worry. And a delay in chemo is not uncommon and not to be worried about unduly, mam had several delays, mainly due to low white blood cells.

    My mam is very independent, she accepted the cancer and failed chemos etc quite well, but finds it very hard to stand back and let people do things for her, she has been a farmer all her life as well as housewife, and an avid gardener, dressmaker, painter and decorator, you name it, she could do it, and do it well, a woman of many talents. She still lives on the farm, my brother is the farmer now but mam and dad are very involved, and she finds it very hard to be in the middle of it all and see my brother under pressure and not be able to be 'useful' as she says.

    She is very tired at the moment, she is with me and is due for chemo in the morning. She is afraid to take a break from it, this chemo is a longterm type thing I think. Poor dad is so worried, he is 11 years older than her and they are together since she was a teenager, so almost 50 years, and he just adores her.

    What is your mum's GP like, do they have a good relationship? Mam's GP was a great help and a couple of times when mam was very panicked after bad news and wouldn't talk she was so upset (she's not a cryer!) when we couldn't seem to console or counsel her, we called the GP and she came out to mam and chatted to her and tweaked her medication and things.

    Talk soon, thinking of you and your mum


  • Hello Mary. Sorry for my delay in replying. I'll send a reply in the next few days. I've had a lovely weekend with Mum. Got here on Thursday evening and will be driving back to Carlisle this evening. My laptop is almost out of power and I don't have the charger with me. But will be in touch very soon.

    Take care. Jane X

  • Hello Mary. I've had trouble finding these messages again!!

    How is your Mum doing at the moment? I came back up to Carlisle on Sunday night. Mum said today she is in a lot of discomfort. I think she's feeling pretty low. She has had her third white blood cell injection today and doesn't want the fourth one as she was violently ill last time.

    Like your Mum, mine is very independent. She won't accept any benefits and I'm sure she'd be entitled to some and possibly a blue badge. She's so proud. Your Mum must be so frustrated. My Mum certainly is. She is 78 but has been so active and well. This illness has really knocked her about and she is feeling so low after thinking she'd beaten the disease at the first three month check when it went so well. She booked a theatre trip to London and the end of June for her, my sister and me and booked a holiday with the gardening club in September. Now she's going to be wondering if these things will happen. I'd dreading her next CT scan. The oncologist said they wouldn't know if the Caelyx is working until 3 or 4 chemos.

    It's so sad for your Dad too seeing his once active wife affected in this way. My sister's mother in law was diagnosed with bowel cancer and the treatment seemed to be going really well then in November last year the was rushed into hospital and died really suddenly. I think it was a respiratory problem. It was such a shock and horrible for my sister's two children to have both grandmas affected by cancer. So, my sister, her husband and two children came over to Mum's on Sunday (my sister only lives around 15 minutes away - lucky thing). We all went to Mum's church for the Mothering Sunday service and, as you can imagine, it was very difficult for my brother in law. We all had lunch together. I had to head back to Carlisle on Monday night but had a lovely weekend with Mum. She loves having me around and feels so positive. But she's sounding low today and I think the side effects are kicking in.

    Yes, I think the chemo is a long term thing to manage the cancer. You do hear these miraculous stories though don't you!!

    My Mum's GP is absolutely lovely and gives her all the time she needs. She lives in a great village and is involved with the church and the choir and has lots of friends who help to take her for her hospital appointments (and there are loads aren't there!!). I just worry about her quality of life deteriorating because she'd hate to be housebound and I think she would just give up.

    Anyway, sorry Mary, I'm rabbiting away here!! I don't work on a Wednesday and I'd better go and do some more housework now!!!! Parents' evening for my 12 year old son from 4.30pm.

    Well thinking about you and your Mum and family. Keep positive - roller coaster ride isn't it.

    Keep me up to date with how things are going. Jane X

You may also like...