not been on really since 1st diagnosis as was keeping busy and getting things in order at home before the big op, but thanks again for your support then.
anyhow I'm 1 week post op, op went well had key hole and was only in for 4 days. I've actually felt a lot better than I thought I would and it's not been half as painful as I thought. That was until yesterday. I was sent home after op with catheter in place sand yesterday had to go back to have it taken out unfortunately my bladder barely performed and therefore I've got it back in for another 7 days, it's really knocked me I've been so positive and I thought everything g was going too good to be true, I'm terrified that it's gonna be damaged for ever. On top of this I get my histology results next Friday to see if I will need further treatment and this is also stressing me out I thought the waiting game would be over once I'd had the op. And finally the fragmin injections and the lovely TED socks are just another thing to add to the day to crapness that this is. I honestly feel like I want to curl in a ball not speak to anyone and just cry which is more annoying beczuse I'm usually such a positive person. Sorry for rambling on but feel like no one understands my partners doing a great job of looking after the kids and the house but I'm sick of hearing how tired he is and how hard work it is and huffing and puffing so feel like I can't put it all on him because I'll tip him over the edge.
i suppose I'm just looking for any peoples advice on firstly the cathter situation, how long did you have yours in for.
secondly is it usual for me to go from being so positive this far along to just wanting to give up.
thirdly how to handle your relationship through all this I don't want to blow into a massive argument and I know it's tough on him but at the end of the day he's not doing above and beyond he's doing what I use to do day in day out plus go to work and juggle the kids commitments.
fourthly what is the deal with these TED socks how long did you leVe them on for ???
totally understand how much the catheter can get you down. Take a look at my blog where I've written about it in some detail! I can't remember off hand how long I had mine in for but it was a number of weeks. After that I had to self catherterise for another couple of months. Now I'm totally fine. Well I say fine, I can wee, but when I need to go I need to go. But I'm more than happy with that because I truly thought I never would again.
Do you still have bags? I had a relapse and they had to put my catheter back in. After a while (like I say I can't remember dates now but all on blog) I had a flip Flo instead of a bag. A kind of tap! still grim but not as grim as the bags. I was also put on a daily dose of trimethoprim to stop me getting uti's. (I had plenty
To be honest anything you 'feel' is normaL. I found it was the period you are in now, when its all 'over' , the hardest. I even had my sister in law say about my catheter. 'Well it's a small price to pay' nearly decked her!
thankyou so much for your speedy reply, I've just spent the last hour reading through your blog and whilst I don't feel much more positive (not your blogs fault) I feel a but more normal that what I'm feeling I can relate to your blog completly. I love the bit were you talk about how with the diagnosis and surgery you just head down and plough through it it's the bit after that's harder when you can't do things for yourself, you can't wear your normal clothes cause your stomCh is massive and I have a piss bag stuck to my leg. Your blog is brilliant so thanks, hope you are doing well now x
I can't help with the catherter but I (hopefully) can with the other stuff..
In terms of feeling like curling up in a ball - I felt EXACTLY the same and it is perfectly normal. You have been through so much emotionally and physically and it kind of hits you after the op. All I can say is that it does get better. There were so many things I thought would never so back to normal but they eventually did. Be kind to yourself, treat yourself and try and rest as much as possible as this will help you recover faster. Also give yourself a break about feeling crap - it's normal and it's okay! Walking a little everyday also really helped me recover physcally and improved my mood!
I was told to wear my TED socks for 4 weeks - boy was I glad to get rid of those things!!! Straight in the bin!
I think the relationship thing is tricky. I think my husband was actually far more affected emotionally by everything than he let on - perhaps your partner is the same.... Honest heart to hearts is prob the best thing - you need to get stuff off your chest and so does he probably.
Oh, and with the dreaded injections....i planned to treat myself after my last one and i had a countdown! Hated those bloody things.
Sorry you are feeling down but yes it is completely normal! We can only take so much and at some point it hits home. You will get over this hurdle though, honest!
Re the catheter, I came home with mine and had it for 10 days. Mine came from a hole in my side and I was so ready to be done with it! To the point that I had a meltdown when they tried to move the date of removal by one day!
My consultant believes in resting the bladder for at least 10 days so maybe yours just isn’t quite ready. Mine was ok after the 10 days, a but numb maybe but full feeling ( or as much as I was going to get) soon came back.
Be kind to yourself, it’s still very early days, there is a lot to take in emotionally as well as physically but you’ll get there.
im going to have a look now at the partners section didn't realise there was one.
Ive had a complete meltdown on my district nurse and my friend today snot and everything and feel much better for it now think I was trying to be too positive about everything and it's all got on top of me, I keep forgetting I am just 8 days post op just feels like I can't remember what life was like before cancer came into it. I'm so glad to hear though that things went back to normal for you all and that's what will keep me going.
Ffinally one more question how long did you wait after your op to have a wine or 2 I really feel like a glass of red could sort me out ???
I am sure a glass of red will do you no harm at all! You have just had major surgery and you are physically exhausted. When you are physically exhausted it is really easy to become emotionally exhausted as well. Ever since your diagnosis you have been the star of the show, the batsman if you like. Meanwhile your partner has been the backstop, probably getting only a fraction of the help and support that you have. He needs support too which is why he can join the private section for partners. Quite a lot of relationships go to the wall after such a life-changing diagnosis so he needs to be handled with care. No of course he isn't doing more than you used to when you were fitter than you are today but it seems that for the most part men have no idea what hard work their women-folk do day in day out. I suspect that much of his grumbling is to do with the fact that he is absolutely terrified of losing you but daren't say that to your face. He can get counselling, so can you, and you can also get relationship counselling, though I expect it's early days for that just at the moment.
I would recommend that you have a glass of wine together and a heart-to-heart.
just wrote another reply to Greta about the catheter connundrum. Let's be honest, it's hell! I begged/pleaded and generally tried to con my way out of going home with it, then tried lots of creative ways of getting it taken out early...get me, I even developed a UTI....but the surgeon's wish was that it would stay in for 2 weeks post op. In the end that was 16 days as they only take appointments for 'trial without catheter' in the gynae ward at the weekends.
It made the recovery so hard...what the hell are you supposed to wear with these leg bags? And any teeny tiny tug on it was total agony. I had a constant desire to pee, and yes psychologically it was really diffuclt. My Gp (along wiht the antibiotics for the UTI) prescribed nortriptyline in the context of neuropathic pain , but they made me so dozy I ditched it after a couple of days.
Just give your bladder the time to heal. You'll get there. I had a similar situation to you after my c-section last year. They took the catheter out after 24 hours but I couldn't go enough (think everything was all mixed up with the hormones as well as physiological issues after the surgery) so I too had the catheter put back in for another 4 days at that time.
Since the diagnosis, although everything's happened really quickly, you realise how strong you can be. As a couple, we've had some major wobbles in the last few months - hard not to at the best of times with a little baby - but we will get through it. Don't underestimate how scared your partner will be. Whilst we're the ones going through this crap, they are sometimes left in the dark, and we all know that can be such a horribly worrying place. Most importantly - take the time to get better. It's going to be a lot of work for us all. I'm six weeks post surgery this week. Energy levels suck, but my body is healing.
Hi, I totally understand how you feel, I found out that I had a 3cm tumour whilst 34 weeks pregnant which resulted in a c section and radical hysterectomy all at the same time At a hospital which was an hours flight away from home! I had to stay in hospital for over a week with a bag attached to my leg, injections, socks, new baby, breastfeeding, build up of lymphatic fluid, had it all and to be honest felt like my head was going to explode! I remember getting home and crying every night that I had to inject myself which was probably due to the 3 hours of sleep I was getting every night! Eventually over time I started to feel half human again, yes i wanted wine and a lot of it! But gradually my walking and getting back to normal every day things helped and I felt like me again (well as much as a baby allows), now 8 months on, I feel proud of myself and what I have achieved and I think every single one of us should feel like this. Chin up, things get better and one day you will look back on this and think hey, I did that, aren't I ace :) xx
