1 week post surgery - recovery questions

Hello Figgywig 

You do sound as if you have had a rough time of it and I am really happy to hear that you are improving daily.  I know that many on the forum (me included) have had biopsies under GA which for me was just a day procedure but not the full tumour removal.  So I am hoping someone else with your experience can pick up on this.  What I am aware of is if the tumour is very very small and removed with good clear margins, then sometimes further treatment isn't necessary.  But your surgery sounds quite a bit more intrusive if you have had all these issues afterwards, I am just relieved that you were well-prepared.  During the chemo/radiotherapy I used incontinence sheets which stuck to the bed which were really useful, it is such a faff changing the bedding.

If the surgery has affected your bowel control, then I would wear incontinence briefs but if you just have a small amount of leakage then a sanitary pad worn a bit further back would be a further safeguard.  And keep a good supply of wet wipes on you, as well as a change of underwear.

I would think that when you feel less tender you can gradually go back to your normal diet - certainly for the time being until you know what the plan is.

I am keeping everything crossed that your daily improvement continues in all your issues and please let us know when you hear more from your team.  Or if you just want a listening ear!

Big hug

Irene xx

Thanks Irene - the info about stick on inco sheets sounds very useful.as I have been going through towels to protect the bed. I am going to look for some of those!

I have got large/long sanitary pads which have helped manage things a bit.

I am determined to get out to send my granddaughter's birthday present by the weekend so a grab bag is going to be kitted up.

I will say when I hear more from my team - and I know whether they got it all or what next.

Thank you once again for your considered and thoughtful reply.

Figglwig

Hi , 

take one day at a time .. my mantra is good days , not so good days but always positive days .. 

good luck 

Chrissie xx

Hi Figgywig,

Well, you definitely sound like you've been through the wringer but great to hear you are improving each day.

I would just say in answer to the points you have raised that the recovery from this is a big part emotional as well as physical so please don't feel you should be following any 'rules'.

Eat what you enjoy and does not upset your stomach. If you want to re-introduce foods like fruit and veg you have not been eating for a while, do so gradually. 

Don't feel you have to exercise, but stay active. Walk, get out and do things you enjoy and lifts your spirits. Buy small treats.

When going out, wear period or Tena pants with additional pads so you can easily change them and freshen up. Pack a small kit of wipes and spare undies - better to be overprepared and feel safe!

You can get a 'Can't Wait' card which you can use in shops etc and lets staff know you need to use the loo, even if they don't have a public one. I think Macmillan would know about this so they are probably a good place to start.

Allow yourself time to heal slowly and gently, please don't feel 'Well it's this many weeks, so I should be at this stage' You'll get there in good time. xxxx

Hi Figgywig , 

I’m pleased to hear you’ve had your surgery although having had a local resection myself I completely sympathise with the aftermath of the surgery. 

I was prescribed oramorph after my surgery which caused me awful constipation which landed me in A&E 5 days post surgery. Once I stopped taking any opiate based pain relief & started on some stool softeners things were much easier. 

I didn’t alter my diet too much, I didn’t eat much at all for the first week or so because of the constipation & the discomfort that was causing but once I had my appetite back I ate my normal diet although a low residue diet would possibly be wise for a little while. 

I wore pant liners for quite a while afterwards too as I had a little leakage post surgery but things soon resolved when I healed & I regained full control. 

I did go on to have a reduced course of chemoradiotherapy as part of the PLATO clinical trial due to a small area of my tumour only having a 1mm clear margin (at the muscle) my surgeon said he didn’t want to damage my muscle & risk any continence issues by cutting any deeper. I had 23 opposed to the normal 28 days of treatment & my radiotherapy was very direct as in theory there was nothing there to treat, it was described by my oncologist as mop up treatment & an insurance policy for a healthier future. 

I hope your recovery is a quick one & your PET scan appointment comes through quickly. Keep us updated.

Nicola

Hi Nicola

Thank you for outlining your experience - so helpful as I am revovering and wondering what next and if any further treatment is needed or any sort of just in case treatment was needed.  I am veering towards some fruit and veg but low residue mainly as I can't get the balance right with the laxatives.

I am hopeful that control will return soon having read your experience. 

Will update when I know.

Figgywig

I was watching one of the social media doctor's today and she has her own cancer treatment going on. She was saying that recovery is not linear. 2 steps forward one back...so a bit of food I fancy and will kit up and get out as it could be the tonic I need!

You are right about not putting expectations on what stage I should be at...I am where I am, doing what I can to get through this unexpected time.

Absolutely - and deciding that is how you are going to do it is quite empowering. XX