Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

@Acinonyx2 I'm going to ring first thing but do I ring the the hospital or my GP. I'm sure the nurse that did it said to contact them. Everything I have done gets infected. 😭

Ring the hospital first. It was actually the hospital nurse that eventually suggested I call the local practice so that they could look at it in person.

I was just saying to dh that it is the everyday miseries that are so challenging - the procedures that go tits up, the side effects. Someone was talking about their nails - something I am slightly obsessed with.

Just wanted to wave at @Acinonyx2 - I have HER2+ bc and it sounds like we have similar treatment plans. Anyway, I agree wholeheartedly about the everyday miseries: it was me talking about nails - they were fine while I was having docetaxel last autumn, but in January the skin around both big toenails became inflamed, bleeding and incredibly painful, and one of the nails has separated from the nail bed. Oncologists say it’s a tax side-effect and a podiatrist is treating the inflamed tissue with silver nitrate, which has turned both toes a rather fetching black colour. It’s such a minor issue compared with everything else, but I’d just started going for walks after recovering from surgery and it’s so frustrating having to stop again. Really hoping they’ll heal up soon!

Sorry, that wasn’t a particularly helpful grumble... But commiserations to all with infections and other complications adding to the treatment grind.

@HumphreysCorner My Picc site bruised massively and was painful for the first week or so. I do bruise very easily though and my insertion was pretty easy (except the wire wanted to go straight across my chest instead of towards my heart) but it was done in a cath lab so no having to move.

@ANightLikeThis I play guitar - classical style using all fingers so the neuropathy combined with my deteriorating nails is royal PITA. I have an ongoing online group but currently I daren't play between sessions as it stresses the LH nails - I can play with guards on the RH but can't get the hang of that on the LH. I gather it will indeed be months and probably worse before it gets better as they weak part moves forward. I will complete my moan by saying how royally pissed off I am that spring surgery will curtail my other main joy - gardening (from seed so labour intensive in the spring). As you say - these are small potatoes relatively speaking but these two things really got me through last year.

I've got my LH and RH wrong way around above

@thereisonlyoneofme

@gillmoregirl has a temporary ileostomy. If you scroll back a bit she writes about it in her post. I think 'productivity' must depend on how much of the colon is left. Its function is to remove liquid and nutrients. I'd guess they will only take away the part (ileum?) affected by your ovarian tumour. No need to remove the whole colon.

I had the first half my colon removed because my tumour was in the transverse section. No need for a colostomy and I can now eat totally normally. Bowel cancer, nothing to do with my ovaries or uterus, which had been removed 6 years earlier.

When do you see your surgeon? You might have more than one. I think Gilmoregirl did.

@Acinonyx2 Sorry to hear about the guitar playing: that’s such a shame. I hope your nails grow out and return to full strength as quickly as possible. Ditto the gardening - I also love it and, while my chemo last summer limited what I could do, it certainly made me feel more like myself when I could get out there. I hope you’ll be able to catch up with at least some sowing/planting in the weeks following your surgery. My mastectomy was two months ago and I’m finally feeling a lot more mobile, although I won’t be hefting compost bags or digging any time soon. I did manage a bit of gentle yoga today, though - small wins and all that. I’m ridiculously pleased that I can lift my left arm almost all the way up again, weeks after the lymph node removal!

@Thymeout thank you for tag. I hope you are doing well.

@thereisonlyoneofme I have a 3 month old illestomy called Bilbo (as in Baggins lord of the rings. ). It's definitely a life change but it is manageable and apart from a bit of sore skin which was fixed by calamine lotion I've had not too much bother. I have learned what times it most productive and quiet. Output varies depending on what I've eaten or drank as does consistency. At the start I was on low residue diet white bread potatoes etc but I've started to introduce more varied foods without problem. The key apparently is to chew well. I eat smaller portions now which is no bad thing. I use Salts Confidence Be Me bags and (touch wood) have had no leaks. It does take some getting used to and I'm
Still learning but please ask any questions and I will try to answer. No one chooses to have a stoma but it's honestly not as difficult as I feared. When is your operation?

@ANightLikeThis As I may (or may not...) have the same surgery - how was it - how long in hospital and how was the recovery?

Chemo 6 tomorrow and counting.

@Acinonyx2 I had a mastectomy + DIEP flap reconstruction, with a reduction on the other breast ‘for symmetry’, as the surgeons are fond of saying. I also had 11 nodes removed, with just one testing positive, thankfully. The surgery was long - 11.5 hours (I’d never had surgery before, so that was quite an introduction!) But I’m very glad I had the mastectomy, as there were still cancer cells present in the tissue that was removed. I was also grateful that I could have the reduction at the same time, or else I’d have been very lopsided.

I was in hospital for four nights (in mid-Dec; they were discharging patients quicker than usual to minimise COVID risk) and the first 24hrs were tough, as the blood supply to the reconstructed breast needed checking every half hour to begin with, then every hour, so there wasn’t much chance to sleep. Pain relief was more than adequate: I had a self-administered opioid (fentanyl, I think) available for the first 12 hours, along with paracetamol (IV and tablets) and ibuprofen, which I took for a couple of weeks. I was surprised how effective they were, tbh.

After the op I had a catheter, which was removed on day 2 of my recovery, and four drains, which were by far the most uncomfortable part of the experience. All were removed by day 4, before I went home.

Sitting up unaided was all but impossible on day 1, but the physio still had me out of bed and shuffling a couple of steps to sit in my bedside chair. By day 3 we were walking laps of my room and my strength/stamina improved little by little each day. I’m normally very active so, once home, the toughest part was having to rest constantly and relying on DH and DD to do the simplest of tasks for me - even now I’m having to ask DH to lift heavy things for me or reach items on high shelves.

I was unfortunate in that I developed a haematoma in the reconstructed breast that needed emergency surgery 3 weeks after the initial op, but that’s rare. I also had a seroma in my armpit that I had drained a couple of times, and a spontaneous bleed on the reduced breast (that was a fun morning!) but everything now seems to be healing OK and I’m regaining a lot more mobility in my left arm.

Despite the complications, and the longer surgery and recovery time, I’m pleased I had the DIEP reconstruction. I’d be happy to go into more detail about any of it, if that helps. And I’m sure that recovery would be quicker for a mastectomy without DIEP.

Good luck with tomorrow’s chemo, always great to tick another one off.

Hi @FrankieDettol - is today your appointment? Will be thinking of you

@Theresonlyoneofme Before my op I was given the opportunity to meet with the stoma nurses at the hospital. They helped me enormously, can you asked to be referred to your local team?.
I don't want to give false hope but I was also expecting a stoma after my hysterectomy.During the operation they were able to remove disease from the surface of the rectum and didn't have to make a hole in the bowel so a stoma was not necessary. When I woke up without one I thought they had not done the op.

@Acinonyx2 I have completed radiotherapy and so far all has been very manageable. I am waiting for problems as the brusque radiographer was very clear it will be worst at 2 weeks. So far I’m feeling just a little bruised.
The Herceptin is a doddle after chemotherapy. I get nosebleeds occasionally and my joints are stiff but I am also on anastrozole and I was stiff and aching long before diagnosis so it may just be me. The best side effect is mild anorexia which is helping me eat less and lose some of the chemo weight I gained with steroids and inactivity.
I still have numb fingers and toes, and a numb foot from the ankle fracture sustained during chemotherapy and a numb shoulder and armpit from the node clearance. Sensation is overrated in my view!
Today’s task is to plant out the broad beans I have been cosseting indoors. I grow organic fruits and vegetables on my allotment up the road and am embracing the no dig technique as my stamina is greatly reduced. Dilettante hoeing is my new normal.
What seeds do you usually grow? I’m sure you can manage some on the windowsill. Or seed potatoes in a bucket.
Greetings to all. I realise I am now further along the treatment path than a lot of you. How did that happen?
Top

@gillmoregirl
@ Thymeout

Thanks for replies. Im waiting for appointment to see surgeon. The tumour on my right ovary is "inseparable" from two places in Ileum and one on sigmoid colon according to CT report. Its bad enough having a debulking op in the future without a stoma as well. Depends on how much longer it will give me as to whether I will take the op.

@FrankieDettol thinking of you today.

@TopOfTheCliff don't go too mad. Easy does it.

Just waiting for a call back from the nurse who tried to do my PICC.

Good luck with chemo, tests, meetings and recovery.

HC x

Topofthecliff I have tomatoes and chillies seeds on the go. My potatoes are happily chitting at the moment. We are trying to attract more wildlife in our garden and made a pond last. year so hopefully tadpoles this year.
I love broad beans but I had to ban my husband from ever growing them again. The year we did he became so neurotic about black fly he drove me to despair! Happy Gardening x

@ANightLikeThis Thanks - I won't know which version of surgery I'm getting (or when..) until late March after my next MRI but forewarned is forearmed!

@TopOfTheCliff An allotment . I have a small, somewhat over-worked garden. Last spring I went for the Armageddon Garden with tomatoes, chillies, potatoes, cucumbers, lettuces etc and lots of herbs and flowers. I had hundreds of seedlings on the go all over the house in pots and trays - it got a bit out of hand! It also took a lot of monitoring - watering, and constant rounds of repotting then hardening off and April-May is the peak time for that. I would not trust dh to do it even for a week (he has form....).

I too would welcome some mild anorexia - steroids have me constantly hungry. Took a ton this morning and I am starving....

So I might do a few seeds but not business as usual. I think this year I will go for form over function and buy/order flowering annuals - go for a real flower festival look. Dh is fine for just planting stuff if necessary.

@HumphreysCorner I'm also waiting for my nurse to call back. I bet you 50p you hear first. I need my MRI rescheduled so I can get to vascular access first (and apparently I can't just ask myself). MRI had warned me, therefore, not to get an early morning appoint. My appt is 7.30 am and VA opens at 9

@Lizdeflores ah - you're giving me urges to chit potatoes. I did rather feel that the peas were more trouble than they were worth.

I meant not droll

@Acinonyx2 you can easily do a crop of potatoes with compost in a plastic bucket. No need to plant them out in a field

Back from the hospital and they have taken a swab and given me antibiotics.

I used to have an allotment and prefer growing veg to flowers. Last summer I did a Dig for Victory in my back garden in the hope of seeing my dgcs while shielding. It certainly got me out of the house during chemo. Watering was like having a dog to walk.

Things seemed to do better in pots than in the bare earth. Tomatoes (grow bags) did well. No blight. Ate every single one. Herbs. Runner beans up the wall were a bit disappointing. Only half a crop.

It was difficult to get hold of seeds, because everyone went mad, but you all seem well ahead on that.

@TopOfTheCliff I grew 2 bags of potatoes last year and got all of 2 meals worth. In a really limited space I prefer veg with more crop/m. So this year I think I'll but a couple of tomatoes in the 2 bags but not from seed if I only want 2.

@Lizdeflores I do like growing food but I also do love flowers so I think I do something a bit more special flower-wise and order some instead of just take the same old same old from the garden centre.

I started ordering seeds as soon as the first lockdown was announced - priorities! Tomato and chilli seeds far more important than toilet paper.

Was quite a saga in the end rescheduling MRI. Meant rescheduling surgeon to April 2 - so a long time until I now the kind of surgery I'm actually going to have and the recovery is radically different depending on that. Surgery ideally should be in April!

I'm enjoying the allotment love!