Cancer Support thread #78 - Newbies welcome

[MrsPnut]

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

@Alittlewornout I got a wig from Simply Wigs and I'm actually wearing it right now for a Zoom meeting - but it's only the 4th time ever I don't generally wear it. If we ever go out somewhere like a pub or restaurant (hard to imagine but I suppose it may happen eventually ) I would probably wear it. If I had money to burn I'd get a couple of 'experimental wigs. But I let Dd help choose this one and it is super-un-eye-catching and non-embarrassing.

Generally I wear beanies - I'm not sure how many I have now! From Amazon and Etsy. I have a fur-lined woollen beanie which I usually wear outdoors - it's super-comfy.

I have two bamboo silk (that's apparently the thing for really soft hats and wig liners) beanies to sleep in. Your head can get very cold at night but the lighter silk hat is nice.

Unlike @backformore I cannot tie a scarf and keep it on my head. I have a couple of beannies that have scarves attached though for my Gypsy Rose Lee look.

Thank you ladies I will have a look tonight. Think I will get my dd to choose.x

@Alittlewornout I got my super expensive wig that my BIL sorted but to be honest, can't see me ever wearing it as I like my pirate scarves and turbans and I'm only just 5ft. When I put the wig on it feels like it's going to ping off and I don't want to traumatise a child. I get everything on EBay.

@AlbertCampion my 2nd PICC fitting was so much better than the first. I'm hoping it actually works tomorrow when I have chemo no 7.

Still have a resting heartbeat of 124 plus. Very painful 😣

Big wave to everyone 👋

HC x

@HumphreysCorner you have had some time of it! What are they saying about your HR?
I think I might avoid the wig as I would probably have the same issue as you. Its quite hard when you are small as I worry the hats will all be too big. Think will need to order a couple to try. Good point about one for night time I will order one of those too.x

I also have a wig that I have never worn! I stick to hats from annabandana or beanies. I also tie scarves myself - I find knotting it at the side is quite flattering. I've recently seen an Etsy shop which makes scrub caps which are apparently also good for chemo patients - I have been quite tempted by them as they also have buttons for attaching masks to, which I find a bit of a problem with hats sometimes.

@HumphreysCorner That's good to know! When they tried to reinsert mine and it wouldn't work, I think I got a bit traumatised by it all. I'm trying to think positive about it so I don't get in a state next week, so successful stories definitely help!

@Alittlewornout they don't make anything of the heart rate despite me saying how terrifying it is. I have started going for walks without wearing anything on my head and don't wear any in the house.

How is your blood pressure @HumphreysCorner? Is your HR ever lower - does it vary?

I wore my wig a lot during first chemo when I went out (remember those days) it was the colour my hair was previously dyed. Now I am totally grey, for the next lot of chemo if its a hair losing one I feel I cant wear the old wig and will have to buy a new grey one! I did wear a few scarves etc but they always looked flat. I envy people who can tie one that looks really fashionable.

Anyone else go weird food preferences/cravings? I recall someone mentioning food cravings on chemo. On EC I am nauseous pretty much constantly - the one thing I can eat is potato. Cold boiled with mayyo, hot mashed with gravy. I live on potato these days. And yogurt and cold puddings like panacotta. I cannot stand bread in any form - can't even look at it.

Dh went to the village shop and bought assorted ginger things - they probably think either me or dd is pg!

Re head coverings, I ordered some from Etsy. One was fine, like a bandana but pre done with elastic at back, the other was what my DD described as an old lady swimming hat. I had searched for chemo hats, to be fair to the seller it did say swimming hat in the description, but in my panic and haste hadn’t read it properly. I found it really irrationally upsetting when unwrapped a swimming hat! (Am lurking here as it’s my DC with cancer - just seeing if any tips here that might help her. Haven’t found anything similar for children)

@Acinonyx2 my BP is not too bad, it's just my heartbeat. My Apple Watch is working overtime beeping at me. Dreading my EC as I struggle to fancy any food at the moment apart from cheese, that's why I haven't lost weight. 😭

@citykat please post whenever you can. How old is she and what is her diagnosis? This group of ladies are so supportive and lovely 😊

HC x

@HumphreysCorner is your haemaglobin low?? My HR was a little up at the start of all this cancer nonsense ( before I knew) and my hb is low. I think now my body is used to a lower hb my hr has settled a bit ( still 80 to 90) but with the realms of expected.
@citykat so sorry you find yourself here on your daughters behalf. As @HumphreysCorner has said this is the most supportive group of ladies. They welcome everyone with open arms and scoop you up if you are struggling.x

@Acinonyx2 I have a food confession: we don't usually do online grocery shopping but during my last FEC cycle I made an entire online Waitrose order of various dry savoury biscuit cracker things & various squash flavours in an attempt to find something I could stomach! They're all piled up on the counter as not enough room in the kitchen cupboards. I reckon a lot will end up in the food bank Plus I'm usually vegetarian as DP is, but he's been cooking me two rashers of bacon most days as I have a fancy for it - thanks DP!

Sorry i can't offer any magic food solutions. It's a common problem. Apparently a lot of cancer patients suffer malnutrition due to it. There is some stuff on line about cooking for chemo, how to make food appealing etc

Has anyone tried short term fasting around chemo days? I've read a few papers were it has helped decrease side effects and wondered if anyone had any experience?

I read something about having a sacrificial food you eat during chemo that you will never want again. For me it is ginger! I had it when I felt sick and now it makes me heave. So does alcohol sadly.
I love rice pudding with a dab of melted butter in it like they sell in Copenhagen. That kept me going through the worse bit of FEC-T
I’m now on a strict diet trying to shed the lard. I’ve lost about 11lbs so far.
Sadly I’m still having to take it easy after radiotherapy because if I exercise I get a pain in my armpit and down my arm. No swelling to see though. I may ring someone tomorrow to discuss it. I wouldn’t object to trying a compression sleeve if it meant I could do more.
I’ve got lots of headgear and picc covers and waterproof picc Limbo covers if anyone wants them. Just PM message me and I will pop them in the post.
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@Alittlewornout yes, my haemoglobin is low hence the blood transfusion. Still waiting for it to kick in. Am left with shivers and bad stabbing pains in my back. As DD1 said, everything they give you to help seems to make it worse.

@TopOfTheCliff I would love the waterproof PICC cover when I find out how to PM.

HC x

I have selected a couple of possible wigs online and put them in my basket but the more I think about it, the less I feel I will actually wear one. Currently, I wear a silk scarf 24 hours a day as I don't like the look of my bald head.

I had an appointment with the surgeon today, a very abrupt lady who told me off when I complained about the enormous speculum she was shoving in me! Apparently, the chemo hasn't had any effect on the size of my tumours but she is happy to go ahead with the surgery which will happen in about four weeks. I am terrified but at the same time keen to get it out of the way.

@Acinonyx2 I love potatoes now I am on chemo! I could eat them all day. Jacket potatoes with butter and grated cheese are my current favourite. Chemo seems to have burnt off most of my taste buds even though my mouth doesn't feel burnt. I crave really spicy foods like curries and chinese and am also eating loads of crisps. I have been lucky to only have a bit of nausea - this was my biggest fear.

@BadEyeBri A friend of mine tried fasting around chemo and said it made her feel awful - but that’s the only thing I’ve heard about it! Personally I find the steroids make me ravenous for the first few days, so I load up while the going is good. Appetite takes a hit for the next week and then I start craving fresh fruits and soups, so it really is one extreme to another...

@HumphreysCorner apologies you did say about needing a blood transfusion, my brain this week has stopped functioning. I hope you get some benefit soon.
Think I will starting chemo soon so thanks for the tips about potatos. I have no appetite this week after the shock of it all but am really trying to eat, there have been a lot of ready meals as the thought of cooking is just too much. I too am really dreading any nausea.
@FizzyOrange that does not sound like a very pleasant experience but glad surgery can go ahead. Wishing you all a restful nights sleep, I have resorted to sleeping tablets from my GP just to get me through.x

@citykat I am another occasional lurker with a DC with cancer (And have picked up some v useful tips here!) - please feel free to message me, there are a few good FB groups xx

@BadEyeBri I read about fasting but couldn't face it! I have a friend with stage 4 brain tumour who is on a keto diet and having good results generally but he's not getting any side effects from his chemo (chicken or egg?) - I couldn't imagine doing any kind of specific diet through all this myself.

@HauntedDishcloth I definitely fancy some bacon - have instructed dh accordingly.

@HumphreysCorner my resting pulse has always been over 90 but yours does some alarmingly high. Perhaps getting your RBC sorted will help. My RBC is also a bit low but hoping to squeak through one more cycle before it really crashes.

@FizzyOrange Mouth is less sore but got some sort of acid reflux thing (despite the omeprazole) so need to avoid chilli and pickles which I normally love. Before EC I had cheese cravings but I've gone off cheese now. Jacket potato and butter might be a change though.

I'm also very anxious about surgery. We can do virtual hand-holding.

@TopOfTheCliff yes I read not to eat your favourite foods as you might hate them afterwards. I can imagine not wanting to eat a potato for a while at this rate.

God I wish I could go off food a little bit. I am actually a bit worried there is something wrong with me (other than the cancer/chemo) because I seem to be eating constantly. The only thing I have gone off is coffee and tea - everything else I am eating in huge quantities. 😳 I find that eating helps to alleviate my nausea, so that accounts for some of it, but I don't feel sick 24 hours a day. I actually wake up in the middle of the night feeling hungry!

@Alittlewornout they give you anti - sickness tablets to take home after chemo and you can take them 3 times a day even if you don't feel sick. I did this for a full week after the first one and then did it more occasionally for the second and third ones when I got a small twinge. It was my biggest fear.

@Acinonyx2 when is your surgery planned? Virtual hand holding sounds great xxx

Hi All,

I was briefly on the previous thread as I recently had a scare after finding a lump in my breast. I have a strong family history of bc and recently found out I am gene positive too. Had MRI’s and Biopsy has come back ok thankfully, but am booked for a double mastectomy in a few weeks. I guess I’ll know for sure after that. I’ve decided against recon.

I’m also having oophorectomy after mastectomy recovery due to high risk of ovarian cancer. I’ve been slightly worried about some bloating, heart burn, lack of appetite and feeling full very quickly so will raise it with the surgeon when I see them. Hopefully it’s just acid reflux.

Would it be ok for me to hang around here while I go through the surgeries/recoveries? You’re all so lovely and such a comfort to each other.

@HumphreysCorner I hope the effects of the low iron and blood transfusion have settled for you.
@Alittlewornout my family members had wigs but rarely wore them. They wore scarves and soft beanies.

@Acinonyx2 and @FizzyOrange I’m thinking of you as you both head towards your surgeries. Waiting is hard when you’re scared and just want it over.

@citykat I’m so sorry about your daughter. I hope you find much support here.