Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@JlL2013 nearly at the end of the second week, thank you for asking! So far physically i'm fine, slightest bit of fatigue and nausea post chemo but the steroids and anti sickness stuff seems to be doing the trick. Worst bit is the bladder filling before radiotherapy, I always feel like I'm absolutely bursting before I go in and spend the radiotherapy session trying to distract myself from weeing!

Bowels are behaving although I understand that they usually start getting trickier around week three.

I think I've found the second week slightly easier as I'm in more of a routine and have got my head round it a bit more.

Two chemos done, physically none the worse for it but I find the chemo days take a bigger emotional toll and I get a bit teary. I don't know, I think being on chemo makes me feel like a cancer patient in a way that the radio doesn't?

But I really can't complain at all.

And welcome @GayPareeee to the most lovely thread that no-one wants to join.

Hope you get some answers soon, the waiting is really the most terrible part - I know I settled a lot once I knew what was going on and what the plan is.

Hi @scandimandy I had a double masectomy last year. In total recovery was about 8 to 10 weeks, although around week 3-4 I had issues with nerve pain and bloods not draining properly thankfully I didn't have to go into hospital as the nurses came to sort it all out.

I started exercises from week 2 following advice from a leaflet I was provided. It had been several.months now and I have fully recovere. I had to have chemo months later which I have now completed but still on targeted therapy.

@Top, did you manage to get the splinter out? I hope you feel much better and back to cycling.

@TopOfTheCliff yes I’m hoping after reconstruction everything will look ok. They seem to be taking tissue from my stomach to reconstruct so I essentially get new boobs and a tummy tuck.

Unfortunately I’ve gained a lot of weight leading up to the hysterectomy and now the chemo - just feel very bloated so when then chemo is done I hope to do something about that. Despite the blood clots etc I’ve been taking the dog out for a long walk everyday.

My husband and I live a long way from both our families and we don’t have kids or much extended support so this has been tough, especially with Covid in the middle. I’m considering a move nearer family when I’m better, but this will mean flying dog and cat thousands of miles!

@SierraSapphire it always feels a bit counter productive that they don’t let you sleep.

@LarryStylinson fingers crossed your recovery goes well. It must be a relief to get it done. I call the little bugger in my right breast Voldemort - but I do speak his name.

I thought I’d sprained my pectoral muscle - I did a months holiday in Spain with a girlfriend on a big trip back to the UK and Spain after Covid - but it turned out to be breast cancer. Just as I was starting to get happy and we’ll after the hysterectomy. Hopefully I will get over all of this and be back to being well again soon.

Sending out good feeling to all and hoping the sun shines where you are! :)

@Makemineadecafplease when you had your masectomy did they remove any lymph nodes? I suspect they will be taking some out on my right side and I’m wondering what that will do in terms of scarring and mobility to that side? I see my surgeon again in a couple of weeks and will have a lot more questions for him. The hospital have also said they will put me in touch with someone who has been through the process so I can chat to them about it.

Nothing good to say. I’m so depressed I’d be off to Dignitas if I didn’t have DD and so even then I feel trapped.

I wake up every morning feeling absolutely shite physically and mentally.

I’ve got a cold or stomach flu almost 70% of the time. Or I’m nauseous, bone tired but with rampant insomnia or I have crippling diarrhoea which makes me feel as washed out and limp as a dish rag, as anyone with near-permanent stomach flu would.

the drug regime I’m on is incredibly harsh on my system - the estrogen blockers are killing my energy my sleep my every waking moment; the Palbociclib causes nausea and major stomach and digestion issues. I take sleeping pills otherwise I wouldn’t sleep at all but they make me feel
Unrefreshed and whacked out.

on top of still working part time and parenting a reception-age child my beloved cat just died and I have So Much Death Admin to do. Haven’t even made a will or written half of what I wanted to for DD to read throughout her life.

absolutely nothing positive to say. I am sick of not sleeping I am
sick of feeling like death I am sick of being expected to carry on.

rant over for now but not in general

So this is the best it’ll get that’s the kicker! how is this living? As I said if it wasn’t for DD I’d rather be dead. Waiting to be dead after getting sicker and sicker in a really unpleasant painful undignified way is no comfort at all

Really sorry @mowly77 it’s shit and unfair.

On the getting a tight cold cap mentioned earlier I remembered that I took a scarf with me after the first time when I felt it wasn’t tight enough in places and wrapped it over my head and sat on it to pull the cap closer to my head. See lovely picture 😂

I’m so sorry @mowly77 It’s cruel and unfair and you’re right, there’s nothing good to say. Are there any drug alternatives that might be less harsh? It must be so hard to feel like that all the time.

Morning all. Did anyone else find that the hair on the top of their head was slower to grow back? Im petrified it’s not going to come back and I’m stuck like this.

@mowly77 it is good to hear from you even if life is hard at the moment. Do you know if the drugs are helping? Is there a chance of stopping them if they are working well or not working at all? I know what you mean about feeling awful with gut symptoms. When I have days of gut upset it makes me feel so wretched I just lie around groaning. Luckily it seems to be only a few times in the cycle. Sending love to you and DD. How is she getting on? What will you do if you can’t take care of her? That must be hard to plan for.

The splinter is still sitting quietly in my buttock. It isn’t sore and isn’t red or coming to a head. Perhaps it should have a name. Chip or Clint the Splint? I’m avoiding doing anything about it. I managed a nice pub on my ebike last night too. Home later but we are going to try to get home without going on the motorway as it’s a bank holiday weekend.

Sending strength to all. @FairyWren7 where would you like to live? I quite like fantasising about my next home. It’s a small tidy bungalow with a huge workshop next door for DH . Welcome to @GayPareeee too.

@mowly77 I’m sorry, I posted my nonsense before I read up the thread. There is nothing I can say of course, other than it’s so shit and so * unfair, and I’m really sorry about your lovely cat.

@mowly77 I'm so sorry you're feeling so low but I'm not surprised. Some people have to bare too much, life is truly shit and unfair sometimes.

I'm so sorry to hear that @mowly77 x

Thank you @Makemineadecafplease thats useful thank you! Can I ask a stupid question, were you able to move your arms during the first weeks of recovery i.e., to make a cup of coffee sort of thing?

@WorryMcGee , don’t feel bad. (I was going to say ‘don’t worry’ but the clue’s in the name I guess...). I think the lovely thing about this thread is that there’s room for the small stuff as well as the big stuff. On the hair, mine never 100% fell out but was always much thinner on top than on the sides (like just a few stray hairs. I looked like my 85 year old dad) and it’s been slower to grow back on top too. I went to see my hairdresser yesterday and said I’d report back. He chamfered the sides which had gone tufty with a razor and left all the length on top. He advised me to use a bit of clay on top to give it some texture: he said he thought that was good psychologically as if nothing else at least I’d feel like I was doing something positive to it. I am also thinking of bleaching it silver from its salt and pepper state. He said if I did that in a few weeks it would make it look a bit softer and fuller as it grew back, even if I didn’t do it again.

@WorryMcGee no personal experience but same thing happened to my aunt - patches of it were just slower to grow and for a while she looked like a rather fetching squirrel! She had breast cancer but I can't remember what type of chemo she had.

It did all come back, in the most beautiful platinum grey. I'll ask if she did anything in particular with it to help growth.

@mowly77 you’re Wonder Woman - working and looking after a young child while feeling horrendous - that’s tough going. Sending love to you and DD.

@ClashCityRocker glad to hear your getting on okay. And that side effects are minimal.

The full bladder is a nightmare, especially if they are running late with the appointment.

I did lots of crying at Chemo, maybe they put something in it!

@mowly77 really sorry to hear that things are shit. We are all here for you.

Mowly Am so sorry to see your update. I would discuss all this with the hospital and see if they can offer any meds changes or can you stop or can they offer any support. Though I know it's hard atm to get things via NHS as they are overwhelmed. I also got help from Maggies, none of it massively useful but nice people. Macmillan did counselling, again was just sympathy, they may offer other things more practical if asked. And the charity Somethingtolookforwardto.org.uk is worth applying to via their website for holidays, meals etc.

Can you stop working, Macmillan have benefit advice and I think offer 350 or so if you have no savings, not that much help but I don't qualify for that but I found the things altogether helped a bit. Benefits are a bit of a nightmare atm, we are just applying for pip for our son, and started in Jan, phoned yesterday for updates 1 hour 1 minute on phone and they knew nothing, try another number. Oh the claim is on hold as he was in hospital so we could not interview him. Um he's mute and has an appointee. Oh yes we will take that off then. I can only get esa but it does help. Macmillan can help apply I think.

So sorry about the cat. Are you still with your partner? I know you said he wasn't good with you or your child. Is it possible you could move in with a relative? Could they take child to school.

Worry I never lost all my hair but mine has grown back at different rates, well maybe different styles would be more accurate and style is definitely the wrong word. Hair that survived remained as before. Hair that didn't survive grew back in crazy curls. I think as you've had some growth everywhere it will grow back but sometimes it takes a while to get more normal hair. I am a 10 months out and mine is at near end of ear length and I have cut it a few times, mainly trimming and cutting off the more crazy parts. Probably be another year before it's back to before and it's a lot thicker than before. I did end up just getting hats from Amazon, velvet ones and embroidered type ones so I didn't have to look and more importantly I didn't get stupid comments, well apart from you MIL. Who kept on take your hat off it's fine to be bald, I wasn't, and also you now don't look thin after treatment. Grrr. But the hat annoyed her as she could not make fun of my hair so that was a win. Oh and the I am healthy comment as I drink red wine was another winning comment. Yes lack of red wine that's where it all went wrong. Sorry just added my own rant here.

Just back from an overnight stay in Cheltenham went to the Lido where I managed 4 lengths (slowly) of the Olympic sized pool.In the evening we went to see John Cooper Clark which has led to DH and I communicating in the style of a Mancunian poet! I'm enjoying my break from treatment but I do have some trepidation about starting Niraparib in a couple of weeks.
The top of my hair has been slower to grow however I had crazy chemo curls which made me look like my Nan when she had an overtight perm. I have noticed that some adolescent boys are perming their hair to get that look, maybe I stated a trend!
much love to @mowly77

Hugs to everyone who is struggling - cancer is a total shit show :(

Jumping in on the hair thing - I have started using Mane & Tail shampoo & conditioner- I heard about it on one of these forums - not sure if it’s doing anything but my hair feels really soft. Still really short but thick - may be just coincidence but I’ll try anything to speed up hair growth. It’s a constant reminder of this horrible period of my life in its current state!

best wishes to everyone xxx

@mowly77 so sorry to read your update and about your cat. I don’t have the words but please know I’m sending a virtual hug. There must be so much for you to think about.

@WorryMcGee a friend who’s hair is about the same stage as yours for regrowth is using a shampoo bar and scalp treatment from lush. Can’t remember the name just that it had cinnamon in.

Just spoken to the doctor about my next round and it turns out that my face acne is a reaction to the dox, probably because I didn’t take all my steroids. So he’s prescribed me even more to take for longer. 🤦🏻‍♀️

Yes What It's always great when you have a bad reaction to drugs and they suggest even more drugs as the solution. I remember the ondasentron they gave me 6 a week and it meant I was in so much pain so they suggested more drugs to stop this. I ignored them cut down to 1 or 2 a week and problem solved. Same with steroids was better with less. You can also take anti-histamine, needed that sometimes. I would always check with chemo line but in my experience more drugs equals more side effects.