So Down Today!

Hi PattyK. I would be tempted to ring your 24 hour chemo support line. This may just be a case of the chemo blues but it’s always best to get a professional opinion if only to put your minds at rest

Please let us know how you get on?

Take care

Karen x

Hi Karen!

Thanks. Have bit the bullet and tried to get in contact with The Beatson Cancer Helpline. All I get from that is `there are high call volumes` and please phone back in 10 minutes they're supposed to be open form 8a.m.-8p.m. I've been trying since 4.30p.m. but for some reason they consistently have high call volumes and asking you to phone back in 10 minutes.  Then I tried to phone the National Helpline the number on the same card as the Beatson and they tell you to leave a voice message. Now I am on NHS24, but all operators are busy. Don't know who else to phone but I feel I need to phone someone. Typical Friday night when everyone wants to go home. Will keep trying. Thanks again.

Vicky xx

Just been on to the nurse at The Beatson Cancer Centre in Glasgow. She spoke to Jay and went through some questions with him. He says he has been experiencing some slight blurred vision and that his legs and ankles feel really stiff- not sore just stiff and his balance is slightly off as well it's like getting back to when he first came out of hospital, and I had to help him with stuff. She said to try to take Ibuprofen and/or paracetamol for any pain. I had no idea he could take this and neither did he because of the number of tablets he is already on but she said it's ok to take these. It's just that he says it's the way he's feeling and doesn't know what it is that's wrong with him and he hates feeling this way. We're starting to `snipe` at each other as well for the least wee thing. The nurse did say though that it is normal to feel like this while going through chemotherapy and for the fact that they upped his dosage because he was tolerating it well. While she was on the phone, she asked me to take Jay's temperature (they gave us a thermometer away in his cancer information pack) and it read 36.30 which is normal she said anything up to 37.5 is normal but if it goes over that then they want to investigate. So, I have to give him Neurofen and before doing it take his temperature to make sure its ok and she said she will call back tomorrow to see how he is. So, for now we just need to go with the flow, but they will check in with us to make sure he is ok. Take Care. 

Vicky xx

All the best, PattyK, you've done the right thing. Hope Jay feels a little better now.

I really hope he feels better soon xx

Thanks everyone!  He's much the same today. He got up this morning and usually has a bowl of cereal before his chemo tablets and only ate about 2 mouthfuls of that didn't even want a cup of tea or coffee. He did say though that the stiffness seems to be easing off in his legs and ankles but he is still in that frame of mind he doesn't want to do much of anything as he said he just feels he's no `get up and go` and it's more or less `got up and went`. We have our little granddaughter coming for a sleepover tonight so hopefully this will buck him up a bit seeing her and be a distraction for him. He's sleeping a lot too he's actually sleeping through the night and as I'm a `snorer` apparently, this doesn't seem to wake him just now either but as the nurse more or less said to us last night this can be all part n parcel of the chemo and the further on it goes, unfortunately the effects can get worse. Thanks again.

Vicky xx

@PattyK. Thanks for the update Vicky. When I replied yesterday I initially posted that I remember having the chemo blues and just felt fed up to the back teeth with the whole cancer shebang. I used to count up how many tablets I was taking a day/week/month/year. Asked why I felt more poorly after having the cancer removed than I did when I had it?! Would I ever go back to feeling like ‘me’ again? Chemo is draining physically and mentally and sometimes you feel like just pulling the covers over your head and wishing it would all go away. Hopefully your granddaughter will give him a bit of a boost - our 4 year old granddaughter loves sitting on my hubby’s knee drawing on his iPad (although she can be a fidget!) or watching a film together

I then deleted this as I remembered all the warnings about chemo complications and thought it better that you got medical feedback. 

I can imagine how hard this is for you to see your hubby like this and you’re probably doing your best to cheer him up - we have a photo of my hubby with his daughter at a wedding and you can see me in the background with my picc line in. I commented on how tired he looked in the photo and she replied ‘yes he was so worried about you’. Are you getting out and about and looking after yourself too? Going out with a friend for coffee will give you a break and boost your spirit. Jay can stop at home and watch rubbish tv and you will come back refreshed with lots of stuff to talk about?

Sending you a big virtual hug - you know we’re always here for you 

Take care

Karen x

Hi Vicky 

It’s been well over a year since my chemo. I hate to say it but I think the nurse is probably right. That might sound a bit gloomy but I wanted to try to explain something. It’s a bit complicated so bear with me. When I was at my lowest with chemo it was grim for me BUT I honestly believe it was worse for my wife. When you feel dreadful things become quite binary - I will either live through this or I won’t and the second is not an option. I hope that doesn’t sound crass. Of course, this will not be everyone’s experience. For our partners on the other hand, it’s very different. They see us suffering and want to make it stop. They worry about just how bad it is (in truth I don’t think even the person going through chemo has a clear sense of that - it just is). Our partners have a million and one other things to worry about besides, whereas when we are at the lowest points of chemo there’s not much room for worrying about ‘stuff’. What I’m trying to say is, your husband is having a rough time and is dealing with it in a very ‘husbandy’ way and roughing it out. That’s probably OK. You are important too. Don’t forget to look after yourself. I’m not sure I explained that very well. Perhaps others can make a better job of it. 

Warmest regards,

 Tom 

Thank you so much! Was just about to ring the helpline but I got messages up here from you Karen and Tom and reading them has eased my mind a little. He has gone back to bed just now for a nap- considering he only got up at 9.a.m. and has just sat in the chair for most of that time. I feel so guilty because I am feeling resentment as well that I know I shouldn't in that he is not doing the simplest of tasks i.e., answering the telephone when it is just lying a few inches away from him. He says he can't really describe how he is feeling he says it's not like he's got toothache or something and can say I've got toothache he just feels like shit- there i've said it and not blanked it out this time but it's how Im feeling just now. He doesn't have a high temperature i've been checking that regular and it's within the limited number, he's not got covid because I did a covid test with him earlier this week. It's the eating thing that's getting me because he doesn't feel like eating. He's a big bloke and loves his food and even through this treatment he's been eating as normal but now it's as though he'll take just one or two bites of something and then leave it. Granted since he got his operation and stoma operation his food portions have reduced because his stomach can't take large amounts anymore and where he used to polish off a full curry or pizza, he only takes about half of it now or gets smaller portions. He's asked that we get a fish supper takeaway tonight seeing as we're having the wee one, but I don't even know if he will eat that. He's asked for a cup of soup for lunch, so I suppose that's a food intake of some sort. As you say, it just hurts for me to see him like this knowing there's not really much, I can do. He still has another week to go on the Capecitabine and when we see the oncologist on the 10th of November, hopefully they will do something to reduce the dosage maybe but then I fear that if they do that the treatment may be less effective? Like you Karen he is just so pissed at having to take all these tablets and every time I put them out for him, he groans and says `not again` it's as though it's a never-ending cycle and the week off from treatment he's just getting back to himself and then he needs to start again at the end of that week. In saying that, he has been much of himself while going through the treatment and just carried on as normal and it's just in this last week he has begun to feel really awful. The nurse we spoke to last night says she will phone today to find out how he is. I'll keep you all updated. Thanks again for all your kind words.

Vicky xx

It is almost impossible to describe the shitty feeling of chemo. I suppose it's like having the worst hangover you can possibly imagine, plus flu, plus that weird sense of doom you get when you are really unwell plus myriad other nasty and apparently random aches and pains. The other thing to bear in mind Vicky, and this is certainly what I experienced after the stoma op and even before chemo and radiotherapy, is he is probably feeling a lot of things besides ill. I felt (and still do sometimes) ANGRY. I felt disgusted and violated - sounds a bit extreme but honestly, when you've got excrement coming out of such an unnatural place it's hard to be positive about it. Add to all this the fear of simply not knowing how or when this will end and you've got a pretty potent recipe for depression. I'm not suggesting your partner is chronically depressed but the mind and body are inextricably linked and he is very likely to be experiencing symptoms of depression (which are not a million miles from the symptoms associated with  chemo treatment) like lack of energy, lethargy, loss of appetite, mood swings... I'm no medical professional so I don't want to get too specific but you might want to chat to someone about mental health. I am still seeing an AMAZING MacMillan psychologist nearly two years after my diagnosis. I'd say she has literally saved my life. Be kind to yourself. Do accept that you can't really understand what he is feeling (he probably can't either) and DO see if you can get some mental health support! Much love to you both. Tom