Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

@gillmoregirl fingers crossed your gp sorts you out some medication to help. My Mum takes 1 Zopliclone a night and it has really helped her get a decent sleep pattern back.

Feeling your stress with the GCSE results. I have one awaiting his next week. Have had to prepare him that despite his good mock results it might not come through the same. It's been a total headache for anyone expecting results across the board and doesn't show signs of improving yet. My eldest was doing her PGCE and that was up in the air for ages. So awful when they've worked so hard

@Minxmumma. It's awful for them. My DD is only child and a perfectionist so I'm also trying to prepare her that her results may not be what's predicted for her. Also had to cancel to Nice which was booked last year which has left her disappointed too. Covid just keeps on giving!!

Hope your son gets good news this Thursday. 😉

@iVampire thanks for your reply I'm hoping so too but I feel like I just know its not good news. Glad this thread is here for support tho as I really don't want to tell my family about it until I know for sure don't want them all worried and waiting for results. My only symptom is bleeding but if I get a little ache or pain my mind starts racing. Hoping I can get a blood test in the morning at least that will be a step closer to knowing what's going on.

@Notgettinganyyounger23 it is really horrible waiting for appointments when you have no idea what you might be dealing with. Much sympathy to you and I really hope you have nothing much to worry about in the end.
@Babymamma192 sending good luck vibes your way too.
Also crossing fingers for all the DCs who are waiting for exam results, or coping with disappointment.

@gillmoregirl after at least a couple of weeks of worse sleep than usual, i.e. utterly rubbish, I took a Piriton last night (the antihistamine that makes you sleepy) and I did manage a bit better. Hope you find something that helps.

I have developed several inner lip (both top and bottom) ulcers. They are driving me NUTS! Throbbing and making me feel like a duckface. Of course, all the foods I have been craving is spicy/rough/vinegary. Brushing my teeth with my usual toothpaste & toothbrush combo stings like hell.

Yeah, and my appetite is back with a vengeance. Totally making up for the first 3 days after chemo.

Wishing everyone a peaceful week. I had the most horrid burning sensation in my gut last night (after gorging on, yep, crisps, rough food everyone says to avoid ) I was convinced I was dying. Cue a semi panic attack and right on another cue DS waking up in the middle of the night and staying up for 2 hours.

@BitOfFun happy birthday!

Does anyone drink at all while having chemo? I had a small pale ale on Saturday (with crisps which caused me so much gut pain) and although at the time it was OK, I just felt bleurgh by the time I had finished it. (not envy) I think I won’t bother.

@Babymamma192 - I'm on my second round of this cancer lark. The first miraculously turned out not to be cancer after all. This time it's a different story. I had a tumour in my colon removed in late October.

In all that time, I think I've had to repeat at least 4 blood tests because something happened to the sample. Nothing to do with needing more info. Just getting lost in transit, or an accident in the Lab. It might be that they want to do full genetic tests, or simply that someone's spilt the sample.

I doubt that you'd be getting investigated at all, if it weren't for your family history. It's so common for mothers of newborns to turn up with bleeding from pregnancy-induced piles. So it's v good that your GP is on the ball, and that you've pushed for a colonoscopy.

It must be so difficult for you not to let your fears run away with you with such little ones, but hopefully they will turn out to be groundless. Fingers crossed that you'll find out soon, and in the meantime the best solution is to try to put the brakes on and take it one day at a time.

Good luck!

@balkanscot I was feeling really well towards the end of round One FEC chemo so I thought I would try a very weak gin and tonic to see what it was like. It tasted like chemical poison! I was so disappointed. I won’t bother again. I felt weird too.
I have been reading up about healthy eating for cancer and preventing recurrence and it looks like alcohol and sugar intake are both associated with higher cancer rates. It would be a big deal to give up both but it looks as though as an intervention it is as effective as chemotherapy or hormone blockers.
That really wasn’t what I wanted to find out.

Feeling rubbish today. My gut is sore from top to bottom
Keep on keeping on folks.

TopO

@Thymeout Thank you for your message it has really helped me to control my worrying....think I've read it about 5 times this morning.

I phoned the Gp and they said they need to do the blood test to check my iron...(not sure if they did it the first time they took blood) so im going for the test on Wednesday.

Going to try and keep busy and not think about it too much.

How are you doing? Hope the recovery for the operation is going alright

@TopOfTheCliff
sorry to hear your feeling rubbish today I hope you have chance to rest and hope you feel better soon!

@Babymamma192 thank you for your kind words.
I think the secret to getting through times of great anxiety is to live life moment by moment. What do I need to do today to get through? Can I fill the next hour with something calming like a walk outside or some sewing or music? Does meditation or mindfulness help? Can I phone a good friend for a chat? Or tidy out a cupboard? (Bonus your house gets decluttered )
You are right to keep busy and before you know it this will all be sorted out.

Xx TopO

Hi all

Just back from a cheeky pre-transplant wisdom tooth extraction...ffs! But barring weekly picc and bloods (which are easy) I think I'm clear of hospital visits for a few weeks.

I've managed two little walks too over the weekend - 1m and 2 miles - now it's pissing down. But I'm planning to try and go out a bit every day if I can

@balkanscot tbh I haven't felt much like drinking. When I've been admitted for my inpatient chemo the staff always told me to enjoy a glass of wine and good dinner before coming. I think I've had a total of 4 beers since March (it's no fun drinking on your own/over zoom).

Hey @Babymamma192, do you know when your colonoscopy will be? I would push for it a bit, not because I secretly think you have bowel cancer and I'm not telling you, but because it's the only thing that's going to bring you peace of mind!

I wouldn't suggest pushing so hard if you had bleeding only and no family history, but it's normal that you're feeling worried and frankly, life's too short for that nonsense.

I agree with the above comment that at 12 weeks pp it's not that weird to be bleeding, haemorrhoids are SO common. But better to get everything checked and the bonus is that if there are any polyps they can sort those out at the same time.

My motto has always been 'worry is not preparation', but of course preparation is preparation and making sure you are proactive in taking care of your health is essential. You're doing things exactly right, keep pushing your doctor(s).

Missed your post there Otter, hope the tooth (or absence thereof) isn't giving you too much trouble. I had a wisdom tooth out maybe 6 or 7 years ago and it was fine within a day or two. Hope yours will be the same.

Have been thinking about you @KentishMama and hope surgery went well and that you are home soon.

Great news @Bloodybridget and @Minxmumma! There may be others, but I am a bit behind.....

And I hope you got some sleeping tablets sorted @gillmoregirl

I'm on my "off chemo" week, starting again on Thursday. Just pondering shielding at the moment and how to manage it. The DCs go back to school in 2 weeks, and I don't feel I can really risk the school playground, but ...... what do others do? The oncologist just said "use your common sense", in that DH has to go to work, and the DCs have to go to school. Currently I just go for an evening walk, and to hospital appointments, and am otherwise in the house. It will be a long 9 months!!

@Starmer I'm wondering what we should do re shielding too. DH can work from home but the DCs should go back to school in Sept, probably just after i start chemo. It would be lovely to be able to do drop offs and pick ups when I'm well enough but no idea what's sensible/safe!

@KentishMama thinking of you, hope everything went really well today

All done! Back in room and ever so sleepy
xxx

That's great to hear @KentishMama, hope you get a good night's sleep now x

I was speaking to one of the Drs on my team today as I was worried about my son going to school when I was preparing for surgery. She said that the surgeon's are hoping that some of the regulations may be relaxed soon.
Having said all that I'm not sure that I would feel ready to brave the playground yet, breeding pits of plague that they are! I have thought that if maybe I walked him half way and arranged to meet a friend I would ask them to walk him into school.

Shielding has already paused - presumably you’re surgeon isn’t talking about the hospital’s own pre-surgery tequirements?

At the moment, we can get out and about to many places. Except that we’re only meant to do so with full/proper social distancing, and other people who do not adhere to even a minimal interpretation often make this impossible.

Which is a bit of pessimistic note on which to start

@TopOfTheCliff yes, my surgeon said alcohol!!! I have never been much of a drinker anyway, but I do (or rather, did, past tense for now) enjoy a glass of wine/beer/g&t/Aperol spritz. I am sure healthy eating helps a lot, mainly in keeping one’s weight under control (and thereby minimising other underlying conditions that can develop as a result of being overweight). However, I am a feeling bit angry at all this advice at the moment as my cancer is a result of bad genetics (faulty BRCA2 gene), and no matter what (super healthy, clean eating, etc.) I still would have gotten cancer. It’s totally not rational to be like this but I hope that one day in the future genetics will have come in leaps & bounds and one would be able to rip this (and other bastard genes that cause life limiting diseases) bastard cancer gene out! Sorry, went off on a tangent here.

@InOtterNews I hope you have recovered from the wisdom tooth extraction!

@KentishMama Glad the op went as expected. How are you feeling now? Are you back at home?

@Lizdeflores my husband does all the drop offs/pick ups and as soon as he brings DS home he makes him change from his school uniform. Then bags the school uniform and puts it in the washing machine. We have also told head teacher to let us know as soon as possible if anyone in DS class develops Covid-19.

Went for pre-chemo blood test yesterday, then got a phone call from the ward to say they want the test repeated today as my neutrophils were low. Fuck! I hope they let me get on with it tomorrow, fingers crossed.

And the mouth ulcers, oh, the mouth ulcers! Bastards are massive - one on the bottom, the other on the top lip! Been gargling with bicarbonate of soda, tooth brushing is agony. Oh, yes, on top of those I also have a lovely crack in the corner of my mouth (right hand side). Feeling very much like Mariah Carey who I heard used to have a servant who was only responsible for holding the straw to her mouth when she wanted a drink (due to her, ahem, natural lips). Not that I have a servant who does that for me...

Thanks for asking @balkanscot. I'm back at home. Not in too much pain, but I think I may need a quiet day. Managed to get up and was getting ready and then had a super dizzy spell. Now in bed with my legs up...

Weill, I still have Shröedinger’s boob

Or in proper medic-speak, atypical lobular hyperplasia. So they want to do another biopsy - vacuum assisted, get bigger sample. It’s not the unit protocol to go straight to excision - it’ll all depend on what they find. But if I felt strongly that I didn’t want repeated assaults on the boob, they might consider doing that instead. I’ll have to get googling (responsibly, of course). They did say 9/10 second biopsies show no cancer cells. But seeing as I’m already the 1/1000 screening mammograms who needs a procedure beyond 1st biopsy, I’m not sure I have much faith in the numbers any more!

@iVampire we can be vacuum assisted biopsy friends then as I need to go back for one too. Appointment is on 1st September. Doc said if this comes back showing anything then I will need an excisional biopsy

Snap - that’s the date of my appointment too!

They were keen to stress that nothing cancerous has been seen so far - it remains a 3 (now called B3 as it’s after first biopsy) - genuinely indeterminate. I’m not wild about the prospect of being in the tit vice again, and I hate the stinging when they infiltrate the local. But I guess it’s a lot better than a surgical excision, which would also be the next step if they’re not happy with the second set of results

On a brighter note, my foot ultrasound was today as well, and I have to wait for the full results at outpatients (2 Sept - I’ll be up and down to the hospital like a yo-yo) but the radiographer did say he saw nothing worrying, and he certainly got good shots of the lump. Also ECG on 2/09 and need to get bloods taken that week ahead of haem outpatients on 7/09 (but if blood results OK, that may well be telephone)

My latest athletic madness is a virtual LEJOG (Land’s End to John O’Groats) - I’ve got a year to do it, and at this rate it’s going to end up all walking to the hospital and back!!