Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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@MyNamesGaryAndImAddictedToChips how are you feeling?? You had a major op right, a hysterectomy was it, or everything but? Was that purely because they wrongly thought you had cancer? I remember you had a lot removed/ a lot to recover from. I think it would fuck with my head a bit to have all that done and then find out I didn't actually have cancer. Hope you are doing okay. Obviously sounds like great news, if you're not busy being shell shocked 🤣

@lucysmam love a bit of Christmas prep. I am a bit disheartened this year that chemo is going to spoil it a bit. I like reading all the prepping posts on MN though and enjoying it vicariously 🤣

DH and I struggle with Christmas, there are too many elderly / unwell relatives in very different places. And neither of us have brothers or sisters so it's all on us to try and make sure they're all seen to and no one is left alone!

I’ve just been to get measure up for my stockings. I’m optimistic it has to do something good. I cannot believe I’ve left my iPad at my mothers. I’m dreading that bloody conversation 😂

The big cancer bonus for me is that I don’t have to host Christmas this year! I have four adult stepchildren, two with partners and children, so Christmas tends to mean operating a B and B for three weeks. As soon as I’ve cleared up after one lot the next lot arrives. Last year was a particular nightmare as I was about to have a hip replacement and then went down with the filthiest cold ever on Christmas Eve.
I also have a dearly loved sister and brother, with families, whom I also like to see at some point.
So this year we’re going to my sister’s for the main event and telling others that if they want to see us they can invite us over. Result!

@AllotmentTime Yes, I had a laparotomy; hysterectomy, fallopian tubes, ovaries and omentum removed. I was supposed to have a robot assisted laparoscopy the first time but when they got in there my ovary was firmly adhered to my bowel in two places so they couldn't even get a good enough biopsy. They managed to release the adhesions in the second surgery.

It was absolutely necessary because they couldn't tell what was going on without doing it. They'd tried everything else. The infection I've got is called actinomycosis and it's commonly misdiagnosed as cancer; it even shows up hot on a PET scan.

I am a bit shellshocked. It's six months since it was first suggested I might have cancer so I think it's going to take a while to sink in properly!

My little town in the West country has recently become popular for cold water swimming lots of celebs have braved the waters. I won't be dipping in the Bristol channel any time soon I like to able to see my feet and know I'm not coming out of the water with ecoli! I do admire those intrepid people(or hardy fools) who do it though.
We also had a lot of attention for a crazy bike lane/one way system/ parking scheme that was implemented by the local authority.
So I may see you down my way @TopOfTheCliff and I'll show you the sights

@EachandEveryone Can I ask what the stockings are for? Is it lymphedema? I am still battling with swelling in my arm. The lymphedema nurse suggested a few weeks back it might still just be post surgical transitory swelling but it is not getting any better and the sleeve seemed to increase the swelling in my thumb so I was told to remove it. So, I now have this bizarre swelling pattern of half of my upper arm and my thumb area. Really quite down about it. The nodule I thought was disappearing (which seems to be some kind of lymphatic blockage - this is my own guess, not a medical diagnosis) has, to add to this, reverted back to size. I have been experimenting with a cream I was given for something else (hirudoid cream for thrombophlebitis on my good arm that gets the chemo). It seems to immediately cause the nodule on my swollen arm to soften, but then it pops up again and softens/shrinks again when I put the cream on again. So, I figure it is some kind of a clot, but probably in a lymphatic vessel rather than a vein as it does not look like a bruise or hematoma. I am desperate for a solution, but cannot do much until chemo is over. I think my only real hope will be getting on that NHS lymphedema surgery trial (not sure I qualify though). I called my partner's workplace health insurance (I am on it) and asked if they cover lymphedema microsurgery and one person said they did, the other was categorical that they do not and that I was given mistaken information. I am really confused now and think they are just told to do whatever they can to avoid paying for things! I have tried to get in touch with the first person I spoke to again, but he seems to have mysteriously vanished and is unreacheable. On the plus side, worrying about side effects is keeping at bay the dread about the disease itself. Last chemo (fingers crossed) on Friday. Then just fear I suppose..

Hello everyone, I hope we are all doing okay under the circumstances. I have a question, has anyone experienced back pain or tummy ache with tamoxifen.

I currently have a slight back ache and tummy ache, on my way to oncology soon but I can't help worrying. I completed chemo three months ago but still on herceptin and tamoxifen. Has anyone has this?

Ooh @Lisdeflores I'll be trying to guess where you are now. Does your town start with C?

@AllotmentTime on my sail round the UK last year I met a lovely couple on a similar but more relaxed voyage. The wife had MS and was unsteady but loved sailing. The husband was diagnosed with pancreatic cancer and given a bad prognosis then had a massive operation to remove most of his guts. Afterwards they said "You are a miracle there is no sign of cancer" but the poor chap was left with awful post op side effects. He decided to get a boat and fulfil his dream to sail from the South east round to north west Scotland. He was still in shock about his escape from the death sentence. They were very generous donors to our fundraising for Macmillan.

@Makemineadecafplease sorry I have no experience of tamoxifen but don't want to ignore you. Hope you get an answer soon.

My BCN confirmed I am in the queue for an urgent bone scan but it will be several weeks. Good thing I am not too concerned.

Thanks Top

Make I am on Tamoxifen (after chemo, radio, 2 surgeries) and I have not had stomach ache or back ache but I wouldn't be especially concerned about that. I would check but imagine it won't be anything. I was told chemo effects can carry on for 3 months after and radio effects hit late as well (didn't get any) but basically at the moment you could have lots of treatments hitting all at once and its probably just your body feeling a bit battered. I find the first month or two on Tamoxifen had aches and felt sick but fine after that, and I started taking just after radio ended. I changed brands as well though I would imagine may have been just as I was in the first period of chemo, radio and Tamoxifen effects hitting together. You do get menopause type symptoms come on, I swim and take a wellwoman 50 vitamin every week or so which stops the aches for me.

Sorry to hear about losing your Mum so young LucysMam

I read on another forum that Tamoxifen is not the ideal drug for lobular and got a bit panicked when I checked the stats. I called hospital as also they were supposed to scan me but forgot though symptoms for that have mainly gone and they are going to give me an appointment with oncologist. They did say that last time but I think this time it will happen. I think I am fine but just slightly jittery about lack of follow up. I love my oncologist, she is amazing and we have wonderful chats, she met Floof online and called him a beautiful girl cat, tbf he is very girly. Kitchen hopefully finished this week. Did swimming but gosh it was rammed and at one point they made the whole pool for children for an hour so you couldn't swim. I got a bit grumpy about that as we pay monthly and I need to swim to stop cancer coming back and I am so much less tolerant on Tamoxifen than I used to be.

Thanks Silkie, it's just the anxiety, any ache, pain gets me anxious. I won't be worried if it was only back pain, but I also have cramps in my abdomen and tummy ache. I don't know ..it could be the heat too, who knows. I hope it is nothing or only a UTI.

Bloods and urine sample taken...now waiting on results.

It does @TopOfTheCliff

Hi everyone trying to keep up but failing miserably. Had me coils put in to tumour and lymph nodes ( sounds very contraceptive but those days long gone) today and a aspirate of a supraclavicular node ...have loads of mediastinal and lung nodes but they think they're ( hope) unrelated and could be sarcoid or
the like. So chemo starts Thursday and I'm bricking it .. I just try and go into a trance mode, bit like hypnotic birthing, when things being done and feel like I've aged so much last few weeks.
I need to make a list of things I need in a bag, that will keep me occupied and my sen kids are not coping...
And it's only Monday 😭

Awe sorry it's so scary at the moment nappybrained I remember being absolutely terrified pre chemo. The best thing I found was just think of trying it one time and just one day at a time. There is a 24/7 helpline for any advice you need. Sorry about struggling sn children, how old are they. I have one 16 year old asd non verbal child so I know a lot about school struggles. Sending love.

You don't need much. I got a digital thermometer and took temp twice a day to check not over 38C, if it is call chemo line asap. Mine never was. They give you all meds you need. Maybe some comfortable clothes for chemo, I used to take velvety things so I could stroke it and calm myself. And drink plenty esp pre chemo if you are on a cannula. And eat little and often I found best. I took ice and ice lollies to help with neuropathy and coolbox from camping store. But that was Pax which is bad for neuropathy. If you get chance to go out for a nice day before it starts do it.

I was nervous before chemo but it was actually fine. Worst thing was being proddled around while they tried to cannulate my tiny veins. (Only part of me that is tiny, I hasten to add.)
Take good reading material and plenty of layers as you can get quite cold.
Hand cream, lip balm, plus all the trinkets, charms, and talismans you need. I have a Ukrainian good luck doll called Vassilina and a bracelet that spells ‘fuck cancer’ in Morse code.

I think after one you have more idea what to take, ours was about 30C and very overheated, so it was more of an issue of not overheating. Some people just go to sleep, others on phone, some read, I mainly ate ice lollies. Mine were weekly and shorter, the three weekly ones are longer but there was a lot of time with not much to do but limited mobility as you are attached. So whatever you prefer to do. Some people take food, but they do have food there if you ask like sandwiches, biscuits, yoghurt, drinks for free.

I was put on antibiotics , raised white blood cells or leukocytes. Should I be worried? My bloods were fine though.

Sorry that's a silly question of course I am worried. That's why I can sleep!

I have a … bracelet that spells ‘fuck cancer’ in Morse code 😁 I think you should sell those on Etsy @Florabritannica

If you have an infection @Makemineadecafplease all you can do is watch your symptoms I guess, it might be something to worry about but it might just go away quickly, what advice have they given you?

@nappybrainedwaiting for chemo to start is horrible. I thought my life would never be the same again, and I had to go through it twice as the first time I went they told me that they’d given me the wrong day and I had to come back next week. If you look a bit further up the thread, there was someone else starting a week or two ago, I can’t remember who it is, but there are lots of tips for them then. It’s not great, I do feel as though my memory isn’t what it was, but it’s not really stopping me working or anything. It’s just annoying. Sometimes I’m forgetting things and making stupid mistakes. I’ve finished chemo last November and it seems ages ago now and like it never really happened, or like it just happened once rather than lasting a few months. If you can find somebody else who’s going through it at the same time then that can really help, I chatted with agreatusername. It would be good if the hospitals enabled you to buddy up with other people, as it seems a bit random who you actually meet at the chemo suite. Good luck!

@FairyWren7 and @SummerCycling thanks for commenting on my posts a while ago, the thread has moved on now but I appreciate the solidarity!

@nappybrained I was fucking terrified pre-chemo. As in, had to be actually moved from the sofa & stood over while I dressed so I didn't just lay down & not go, terrified.

As it happens, it's honestly not as bad as it was in my head. The worst part is the cannula (I too have small veins) but the rest is a breeze.

There's quite often someone to make small talk with at our centre, or other folks play (or whatever they're doing) on phones/ipads, others read, some take puzzles. One lady on my day sits and sketches motorbikes from pics on her phone. They have blankets if you're chilly, and always a brew and biscuits, sarnys around dinner time ish.

I always pack a snack and drink, and my portable charger. I have some books on the Kindle app on my phone but have never got further than loading it up. I tend to stick an earphone in if conversation dwindles a bit.

@Makemineadecafplease I have no idea but hopefully someone does, and can put your mind at ease 🙂

I'm carrying on with 4/5 more of my sort the house out jobs today, and my friend is coming for a brew at mid-day. Probably more painting of the Each, Peace, Pear, Plum characters too. Most of them are ready for their details now so I've been looking for inspiration for the next ones - and I want some smallish stones to do a 'bag of bones' for Halloween.

Have a good Tuesday all!

@nappybrained just to add to earlier comments, I too was terrified of chemo, in my case because of a terrible experience with it 25 years ago (atrocious nausea). This time (different chemo drugs, different cancer, and much better antiemetics), it has been much more doable. The effect seems to be cumulative. Was very knocked back last round (tired for about a week) and am now heading into my fourth (and last) on Friday and expect to be tired again. But on the day and indeed the day after it is fine. Plenty of time to get settled into my sofa for some vegging for a few days after.
Surgery was what caused me and is still causing me grief. A bigger shock to the body in my case.

Can I just chip in as a veteran of two courses of IV chemo that you don’t need to be brave. It’s okay to be terrified as long as you turn up. The nurses are very experienced and used to patients who cry, shake with fear, laugh hysterically or sit with ear plugs in tuned out. They will look after you and reassure you every step of the way. If you have a bad reaction they are on it and know what to do. Once you get used to it all it is actually quite relaxing being looked after for a day with free snacks and stuff. It’s weird looking back at it from the other side afterwards. How can something so terrifying become routine and mundane? You will get through!

@nappybrained I'm in for my third round of chemo on Thursday. Just waiting to have my pre-chemo bloods done now. I'll be taking with me:

Paracetamol (advised because I'm cold capping)
Warm shawl & cardi & socks, most of which I haven't needed so far but you never know
Book they've given me to record symptoms and side effects in
Pen and paper so I can take down my medication instructions
Hairband
Phone charger
Book
Snacks because I don't like their biscuits 🤣 bleurgh custard creams.
"Fuck cancer" in Morse code bracelet - snap @Florabritannica, I have one too 😁😁

I'm not looking forward to it AT ALL but every chemo session done is one less chemo session to go. Bastard bastard cancer.

In chemo now, having my newly installed port flushed with saline. It hurts as the port is still new and bruised.
Couldn’t find the magic bracelet this morning and worried that necklaces might get in the way of the port, but I have my charm bracelet with various important objects on it, including a labradoodle.