Recurrence after 8 years

Hi Carry

I'm sorry to hear of your cancer recurrence. 

I really don't know if my ideas will help you but might reaffirm your thoughts. 

You could probably do practical things like making meals to freeze so you can eat well after your operation with little effort.  If you're house proud, maybe do the jobs that only need to be done once in a while, then you can relax knowing that you don't need to worry about them. Inform your family and friends and put plans in place for hospital lifts, visits and taking care of you whilst you recover. Don't be afraid to ask for help.  Finally, have a short walk daily to help with your general fitness.

Hope all goes well....and try not to worry!

Best wishes 

Helen x

Hi Carry 

I’m sorry you’ve had a recurrence after so long-it’s always devastating news. My cervical cancer recurred after 9 months, so a lot sooner!

I’ve had a total pelvic clearance surgery (more commonly I’ve found in the community called a total pelvic exenteration) and the main thing I was told by my surgeons was to be as fit as possible before the op. Unfortunately that was difficult for me as I was recovering from an open abdominal (failed) attempt at a hysterectomy. 

From my experience, I couldn’t really eat much in the weeks following surgery (I was in hospital for 2 weeks) and so I couldn’t manage meals. Small snacks was my limit. I had a lot of vomiting and many foods initially disagreed with my new colostomy. Housework of any sort was a non starter, as I was basically bed bound. I got up every day and could manage the stairs several times a day, but going outside for a walk was completely out of the question. Sitting for me was very uncomfortable and I couldn’t manage that for long until I had healed inside. So lying down was much more comfortable. 

I was completely and utterly exhausted, and needed help with absolutely everything. I had been warned about the fatigue by ladies I know who had been through this, but hadn’t appreciated how bad it would be. But you do need to rest a lot-this is a massive surgery with a huge amount of healing to be done inside in addition to the abdominal wound and stomas.

I’d be happy to answer any questions if I can based on my own experience-I appreciate you’ll have your medical knowledge to draw on too. 

Sarah xx

Thanks very much Sarah, that’s very helpful. I think we had a few communications several months ago on another forum, when everyone still seemed to be struggling to find a diagnosis and we were erring on the side of it being a new cervical primary as it was so early fir a recurrence.

Anyway it’s tips like that that I need, so many thanks. Do I need to make any particular preparations that would help with the stomas? I’ve named them Tweedlewee and Tweedledump

thanks carry

Thanks Helen, there’s some helpful tips there….much appreciated 

xx

I like your names! I honestly don’t think there’s much you can do to prepare for this aspect, although you may be provided with a “dummy kit” by your stoma nurse to practice putting a bag on which you can fill with water to simulate the feeling of wearing a bag and with a fake stoma which looks a bit like a door stopper! 

You could also watch numerous videos online on how the stomas look and how to change the bags. For me, neither of my stomas look like any I have since seen online. You see stomas with “spouts”” but I don’t have these as mine are flush with the skin. I didn’t watch videos or practice with the kit but others can find it useful. 

I felt I wanted to see what the reality was like and learn from experience, so it wasn’t until I’d had surgery that I understood what it would feel like. You learn to change the bags from much practice, and again I wanted to find that out myself rather than learn from a video. You learn your own ways of doing things as you progress, and I’ve watched stoma bag changing videos from time to time in the last couple of years, but to be honest it hasn’t changed the way I do things.

Sarah xx

Thanks again Sarah…….I’m not too worried about the actual care of the stomas, cleaning, changing bags etc. as I’ve done it fir others many times. It’s more any surprises you had when you first got home and any tips….I’m not sure what I really mean, maybe timing eating etc or supporting the bags in bed etc……..maybe I just need to wait and work my own way through it….thanks anyway.

Most important tip-get a waterproof mattress cover! You will need it. Bags leak and or burst especially at the start when the stomas are settling and changing shape. If you have a urostomy then you will connect your “day bag” to a night bag on a stand by your bed which holds more urine. I find wearing knickers is enough to support my bags-some people use belts and support belts but I’ve not felt the need. 

I found it very hard to eat-I could only eat tiny amounts for a long time and I still find it easier to have my last meal early-I don’t like to eat late. Little and often and keep drinking water. I was surprised how much I vomited-every day in hospital and every day for 6 weeks when I came home. Keep a bucket by your bed! I could have both bags bursting or leaking and be vomiting all at the same time and that was exhausting. I just didn’t have time to get to the bathroom.

Have bed baths when you can’t manage to get up-there was no way I could get to the shower every day. Accept that you need help with the simplest tasks like washing your hair, brushing your teeth. I had a bowl and toothbrush/paste brought to my bed when I couldn’t get up. I just didn’t appreciate the exhaustion and how much this took out of me. 

Those are some things that I experienced and I’ve spoken to many ladies who’ve had this surgery who report much the same. 

Sarah xx

Wow! I wish I hadn’t asked now! Sounds horrendous! I live alone and will have help for the first few weeks, but then I’ll be pretty much flying solo, although will have a lot of input from friends. consultant said I’d be in hospital for 6-7 days, which is a lot less than I was expecting, so means I’ll be earlier in the recovery than I thought I’d be…..daunting to say the least. Anyway, thanksor the info….I’m sure I’ll get by somehow.

I’m sorry Carry but this was the reality for me. I don’t know anyone who was in hospital for only a week so that is surprising to read. I was out after the 2 weeks because covid was just kicking off and we were going into lockdown so everyone thought I would be safer at home so I pushed for that. Most people I know personally and interact with who have had the surgery were in for longer. I would not have been able to manage at home after a week-I was in hdu for 2 nights before the ward.

Hopefully you’ve got someone actually staying with you for the first few weeks? Changing sheets and bedding for example needs someone else. I had a lot of bed changing! And as I’m sure you will know you won’t be able to do lifting due to the hernia risk. 

Sarah xx

That’s ok Sarah, I appreciate your honesty. Yes, my brother and sister in law will stay for at least 2 weeks. Should I see if they can make it longer? Following your advice, I’ve been looking at mattress protectors and thought I’d get ones that aren’t fitted as I’m sure I’d struggle with that, but hoped that just removing a smaller sheet would be easier. I might even get disposable ones for the first month or so (sorry planet)

Thanks again, your experiences are very helpful. X