Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@OrdinaryLife I have been scavenging for more pillows - dd has temporarily donated her Gryffindor cushion.

Acinonyx I had my lumpectomy and sentinel node clearance last year (march) but because of covid I couldn't have my non-cancer side done at the same time, so have been a c cup on one side and gg the other for over a year. Bit the bullet and paid to have this op ad I was told I'd have another 18 months - 2 year wait on the NHS and I couldn't cope mentally with that. Am hoping this will help me to move on a bit.

I am so itchy - can't wait for the dressing to come off. I'm not sleeping well and feel grumpy this morning!

@Zorgothslugofdoom really hoping these will come off for good on Monday. Also itching. Amazed I can function on so little sleep.

I'm hearing that a lot of women had one side done - seems a very false economy not to mention distressing for the patient. It was mentioned to me - but my surgeon was able to get both done same day thankfully.

The outcome is pretty good except for the wretched allergy business.

Sorry to hear of post surgery woes. I sleep on my right side which is the op side. Have my op on Friday which I'm dreading. Also the surgeon uses glue instead of dressings. Tomorrow I'm having a wire put in and the radioactive injection ready for the day after.

My hair is growing back, I can't stop feeling it.

@MrsPnut boo to your port. I insisted they removed my PICC at the last flush, the wire barbs were imbedded in my arm so very painful when pulled out.

@Bloodybridget I've just done some little jobs in the garden as I won't be able to after the op for a bit. I don't feel unwell at all with the high BP. I'm using dad's BP monitor twice a day and it's not too high, only at the GP and hospital.

Lunch time, enjoy the sun if you can.

HC x

Hi everyone, I'm new to this thread. I had a tumour removed from my forehead on 31 May after a biopsy showed cancer cells. I was meant to find out my results on Friday but it's been sent to London (I'm in Ireland) for a second opinion so looking at another four weeks waiting.

@HumphreysCorner I'm constantly stroking my own hair! It's about one cm now and starting to get tufty.

@RocketPanda welcome. Sorry you have such a long wait - waiting for results is so very tedious!

Welcome @RocketPanda to the club no one wants to join. The waiting for results is awful but unavoidable - try and keep busy and avoid googling (says she who knows waaay too much about cancer pathways now). Its good to get a second opinion early on so they can get you on the right treatment path though.

Good luck for the op @HumphreysCorner hope it goes smoothly. I also keep stroking what little tufty hair I have

Hi @RocketPanda I'm glad you found us a four week wait is a long time you will always find a listening and understanding ear here.
I woke up today to find a msg from the gp asking me to make a telephone appt to discuss some recent blood test😱 They said it was non urgent so I'm trying to put it to the back of my mind.
Yesterday will be a year since I my diagnosis it's also my wedding anniversary so I intend to drink and be merry.

Thanks for the welcome

Happy anniversary @Lizdeflores
I have to say this is the first wait I've had. I had my first appointment then four days after that I had my biopsy, results the week after and date for surgery. All in all it was done in four weeks.
I have a skin graft on the part where my tumour was and finally it's been confirmed that it's taken so that's good news.

@RocketPanda Welcome to our lovely supportive thread. I hope your wait goes quickly.

@Lizdeflores Happy anniversary and enjoy your drinking and merry making.

@HumphreysCorner Good luck for your op, I hope it goes smoothly and your healing is non eventful.

I had chemo today through my port, and I got a little anxious at a couple of points about the needle becoming dislodged so the nurse stopped the IV and did a draw back from the other opening on the line to show me the blood. I do feel a lot more comfortable that it was that nurse and she was great.
I had a little afternoon nap and woke up with a hankering for something delicious to eat so we have been out for tapas. The were fully booked up but I used the bald head to my best advantage so got a table. We were pretty quick and now I am stuffed.

I had my post lumpectomy results appointment today. It was generally good news as my lymph nodes were clear so I just need radiotherapy. The less good news is that there wasn't quite a big enough clear margin with the tissue they removed so I've got to have another surgery in a couple of weeks to remove a bit more. I'm disappointed as I'm healing well but it needs to be done

@barkydog that's good news, but disappointing about the extra surgery

@barkydog good news on the nodes but bummer about the surgery. You do have to be a bit zen about it - but maybe after having a bit of wailing and thrashing first (that's how it works for me).

It's DD2's 15th birthday on Sunday and she wants to go out for a meal. As my op is tomorrow what are the odds of me being able to go? Probably very low.

@RocketPanda welcome to you, such a long wait. The worst bit.

@barkydog shame about the extra surgery but your news is good.

Going to wrap presents while I can.

👋 to everyone.

HC x

@RocketPanda. Welcome and hope your wait passes quickly.

Thank you to those who gave advice about ice gloves and socks. I had Docetaxel yesterday and asked about them. They didn’t seem to age heard of them. I was surprised as they’re a major cancer hospital. Anyway, it took the choice element away as their were none. I have had no side effects so far, I presume because it was only yesterday and I’m still on steroids. When might I expect neuropathy and bone pain to set in?

@HumphreysCorner Even with my super speedy recovery, I was still not up to going out and sitting that quickly after my surgery.
I had my surgery on the Wednesday and was out the following Tuesday for my hairdresser to wash my hair and I was pretty mobile within the house the day after surgery onwards.
Can you compromise with a takeaway this weekend and a meal out in a few weeks? My DD1 turns 15 in 3 weeks and I know it is a tricky age.

@MrsPnut I've booked a table and said the 4 of them can go but she doesn't want to go without me. I bought some fancy plates and serviettes so we could have a buffet tea. So difficult as it's DD1's 18th in 3 weeks so after Sunday it's full on all about her birthday.

@HumphreysCorner That does make things difficult. I'd really see how you go and maybe make that the only thing you do that day so the family need to wait on you for the rest of it.

Does anyone have any ideas on how I can boost my haemoglobin? It has been dropping steadily with each chemo and whilst it is still over 100, it might not be for long.
I do know about green leafy veg but I'm not that keen.

@HumphreysCorner I think a nice tea at home will be good and a meal out later. My dd turns 16 in 2 weeks - big birthdays are tough just now all round.

@Lunificent for me it went like this. I had chemo on Tuesday and Wed I was so high (I got a lot more steroids though) that I used to actually schedule shopping, cooking etc. Thursday was 'transitional' going downhill and Fri-Sun were really shit. Mon-Tue were transitional the other way. As cycles went on took longer to get back up - stretching through the second week.

Be cautiously optimistic as it does vary a lot - but also be prepared and don't over-extend/over schedule. I had a lot of neuropathy and could barely walk by Friday so my next dox was cut to 90% and that made a big difference - I only got in my hands after that. Some people are just more susceptible than others. (I've got it again now with Kadcyla.)

With the aches and pains I was never sure which were due to dox and or those filgrastim injections but I got some relief using antihistamines (I used Clarytin).

Be interesting to see how you get on!

@MrsPnut I swear by Floiridix iron tonic. I stubbornly refused a blood transfusion after dd was born and this got my blood back up quite quickly - which I know as I had blood tests and even the dr was quite surprised how it bounced back. Remember not to take iron supplements with dairy as calcium inhibits iron absorption (Vit C boost absorption).

Problem is that chemo actually results in making fewer rbc so it's not just about iron levels. There are some drugs they can give you to boost that

PS There is some chatter about cancer cells loving iron so I keep the supplementation to what I really need only. Once it's back to normal I stop it.

I'm still waiting for my biopsy results. 10 days since my appointment so I expect to hear next week.

I stopped taking my HRT and I'm waking up every night with my body on fire. I don't sweat but just get unbelievably hot!

I'm also feeling lots of twinges, and aches, feeling quite low but trying to keep busy.

My breast and lump is feeling quite sore now (it wasn't initially) so I don't know what to think.

Told my DP I'm convinced the cancer (if it is cancer) is spreading and that's why I'm aching! Crazy thoughts going round my head which I presume is totally normal.

The waiting is so hard.

@HumphreysCorner I was told to isolate after surgery for a week so wouldn't have gone out but I don't think I would've been up for it anyway. I slept the whole day after discharge as it's impossible to rest in hospital due to all the checking. Best wishes for tomorrow

@MrsPnut I had decreasing haemoglobin during chemo even though I'd been taking iron as I always had done. My oncologist told me supplements/diet doesn't do much as the chemo interferes with the way the iron is transferred from the ferritin stores into the circulating haemoglobin, so most iron taken in just goes into the stored ferritin - effectively what Acinonyx said. A transfusion helps as that's direct. Mine got to 100 & I just didn't do anything involving exertion for weeks! It started getting better about 4-6wks after end of chemo.

@Lunificent I wasn't offered ice boots or gloves - thought it was only an American thing. I haven't had any neuropathy as yet, but have got peeling skin on feet & weird nail colouring/ridges. Like Acinonyx I was OK post-Docetaxol for the first couple of days due to the steroids then felt generally a bit rubbish & soooo tired.

@BG2015

Waiting for results is the worst bit, you start thinking of all sorts of worst case scenarios. Is it long now until your appointment? I've never taken hrt but I expect some of your aches and pains are related to stopping it, as is the overheating at night. I regularly throw the duvet off several times a night as I'm so hot, the joys of the menopause.

@Acinonyx2
I think I'm back in zen mode. Really compared with many here I don't have much to complain about.

@HumphreysCorner
Like @HauntedDishcloth I was told to isolate for a week after surgery and I was still feeling the effects of the anaesthetic the day after so probably wouldn't have felt like going out. Teen birthdays are tricky though and especially after the last year they deserve a bit of a celebration.

@BG2015 the wait is so difficult! Your body and brain are playing tricks on you. It’s mostly anxiety causing the odd sensations. I was intensely nauseous all that week. Try to keep busy and think about something else. You will feel much better once you have some hard facts.

@Lizdeflores we are almost cancer twins my anniversary was Monday. Fingers crossed the blood test is something mundane.

@Acinonyx2 when do you get your buzzing sucky drains out? I am amazed you can sleep at all!

We have DHs family staying this week which is lovely. I beat them all at crazy golf today. It’s my superpower! But I remember now what hard work visitors are after 15 months without any. I quite like being a recluse after all. It’s making me grumpy as I make up beds, provide meals, do laundry and empty bins. DH is so happy to see them though. He will have to pull his weight or I will blow a fuse. I need to keep him sweet until he has done an electrical repair for me then I may run away for a few days. I am longing to escape!
Best wishes to all
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