Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

@Bloodybridget it wasn't a drama. I quite understand why those of you who have been here a long time might want to maintain the thread for cancer patients but us more recent recruits didn't know that, as it isn't in the header. Apologies if I put a foot wrong.
Your gentle redirection was tactful and kind and I'm sure we can all move on. Warm wishes to all
Top

Hi all, just checking in. I'm still recovering from a big blast of radiotherapy, and I've not really felt like posting. I'm still holding you all in my thoughts though.

@BitOfFun, sending you warm wishes and hoping the radiotherapy does its job, but stops hitting you with side effects soon.
@TopOfTheCliff absolutely no apologies needed, I was only giving context as it was a slightly tricky issue.
I'm going in for a transfusion tomorrow. Four hours! Going to put my faith in hospital sandwiches for the first time, am I mad ?

@Bloodybridget I had a transfusion and it worked wonders for me (well got rid of my anaemia!). My lovely nurses all joked Usain Bolt had dropped by to give his blood (such was the change!).

I also had a lovely sleep during the transfusion!

I have been musing - that having cancer is like having a baby in that when people ask: 'How are you doing?' in most cases one or two general purpose sentences are the appropriate response. Such questions must not be taken literally and a fulsome response is neither required nor appreciated.

Apart from a select few - largely including other mums with babies. Then you can get into the real nitty gritty of your challenges with sleep, food and potty training.

I'm getting the hang of it. Also - on the 'positivity' issue. I have noticed that people keen on the mandatory and relentless positive mindset towards cancer do not tend to show said positivity to issues causing chronic complaint in their own lives. I am holding back on commenting, but it's hard

@BitOfFun good to 'see' you.

@Bloodybridget sounds like the transfusion may be a real boon - we await the new Bridget!

@Acinonyx2 Your last two posts really resonate with me. I am currently lolling around on the sofa feeling exhausted, and very aware that I am not being a great mum at the moment. I am so worried that DS will have a memory of me as someone who was permanently ill - or worse, boring! I'm also extremely bad tempered at the moment, thanks in part to my period and in part to home schooling; I really hope he forgets how useless I am during this time.

I've also noticed that the "how are you?" question is not in fact a question at all - it's more just a piece of etiquette to acknowledge your situation. There are very few people to whom I would give a genuine answer. I feel like a failure if I admit I am struggling - it's just not the "done" thing with certain people. And if one more person tells me I am "strong" I will scream: I am not strong - I just have no other option about any of this.

@AlbertCampion everyone seems to know someone who breezed ever-cheerfully through their cancer treatment and set the standard. I can do that outwardly if really required but do I absolutely have to - is it compulsory? Whose benefit is it for?

Because truthfully I am finding the treatment challenging - unwell to some extent pretty much all the time and really unwell some of the time. I don't want to whine and complain (well, maybe here a bit ) but I don't want to just lie either. If everybody lies- it's like the myth of perfect parenting.

Should get better through next week so I'm hoping to try and engage dd offline. Feels like the three of us are living parallel lives these days.

Off for a walk soon and hope that will boost morale. Small wins, Albert, sometimes tiny ones.

Afternoon lovely ladies xxx

I've just returned from a two night stay in hospital to get my abdomen drained again and have been catching up on all your posts. I went to the hospital where I am having the chemo as they seem to have better Covid measures in place than my usual local hospital and I had my own room which was reassuring. My second chemo is next Wednesday and I am dreading it already - I felt so rough for about 10 days with the first one and the fatigue is supposed to be worse with subsequent cycles. I don't have little ones but I do know what you mean @Acinonyx2, all I'm doing is lying on the sofa or in bed feeling exhausted. Some days, even a shower has been a huge effort. I have had to distance myself from a couple of friends who are members of the Positivity Police - I feel like saying, 'Have you had cancer and procedures and chemo? No, thought no, just try it for a week or so and see how positive you feel...'

@AlbertCampion oh yes the 'how are you?' questions are quite strange. I am still getting messages from friends (aware of my diagnosis) which start, 'hope you are well', I mean really I have people telling me how 'strong' I am too and I'm really not. I had 3 nurses and 2 doctors in my hospital room earlier trying to get this drain out and it really hurt. I was lying there in my pants crying - I truly didn't feel strong. We have no choice - we just show up.

@Bloodybridget good luck for the transfusion. I eat hospital food and the sandwiches over the last couple of days and in the chemo unit are actually quite nice, things like tuna and cucumber on oatmeal bread. They even have Walkers crisps to accompany them! The lady who has the food and tea trolley on the chemo ward encourages everyone to eat constantly, I think she serves from it all day long on a continuous loop apart from her breaks.

Thanks for good wishes for the transfusion, it seemed to take forever even though it turned out they only wanted to give me one unit - it took 2.5 hours. And disappointingly I don't feel any different today, still tired, breathless etc. However, my mouth is getting better. And their ham sandwich was ok!
@FizzyOrange I hope you're doing ok now after the drain, is your abdomen more comfortable at least? I'm dreading next chemo too. So true what @Acinonyx2 and @AlbertCampion say about the requirement to be positive. I want to scream when people tell me I'm "so strong". One friend never fails to say how fantastic I look - well, if a pasty face dotted with lumpy red spots is a good look . .

I would just like a week off from all symptoms and side effects, is that too much to ask?

Sending love and good wishes to all, and special thoughts for those with children who are worrying about not being good enough mums. You are doing your best, they know they are loved, it will be ok.

@Acinonyx2 - I am the same, I have felt unwell with various cancer symptoms for weeks before the treatments started and I have felt really unwell over the last two weeks, so much so that I have understood how people decline treatment. Everyone knows someone who was 'fine on chemo' and I have to say it gave me really false hope which I am cross about now! Whilst I am moaning, can I ask if anyone else has encountered this while hearing about the paragons of chemo - several friends have told me 'yes, Sally was fine on chemo and didn't even lose her hair'. I am expecting to lose mine on my next cycle and then I will know I am not doing it right lol. Hoping for a better week to come for you xxx.

@Bloodybridget I'm pleased your transfusion is over and your sandwich was acceptable. How disappointing to still feel tired and breathless though, that is rough. I understand what you mean, I would like a week to just be feeling normal. I am so much more comfortable after my drain thank you, 10 litres drained off so it was like a full term pregnancy. I most certainly don't look fantastic - I look permanently exhausted.

@Bloodybridget I hope the transfusion is doing good work. Chemo can affect the skin - making it pale, smooth, tight and baby-like. I think this can give an impression like a professional dermascrub. Several people have told me how well I look and I HATE IT when they do that. I shall start recommending they do chemo too if they want the sick baby look.

Ah @FizzyOrange sorry your treatment is rough. I think one of the reasons for the odd stories is that some treatments are much lighter than others - as well as some people just not getting as sick as others. I also at hope you are well - and the like.

As for showering. I used to shower every day but now sometimes I don't. It's not like I will have greasy hair And frankly, sex is not on high on my agenda either.

I guess we have to have faith that we are going to feel that it was worth - just not maybe right now. It's hard to see past all this.

@Bloodybridget just to say any positive effects of my transfusion weren’t immediate - I certainly couldn’t run or likely walk much the day after - but the positive was I didn’t feel like I was about to die (so all relative! my neutrophils had just dipped below 7 but by the week after having just one unit were up to 8.6 and 6 weeks later were at 10.6!).

Reading the thread I think you have all made me confident I made the right decision as I haven’t really told anyone I have cancer / surgery or chemo. I can’t Skype from here either which is good as I don’t get to see any head tilting concerned faces I might want to punch!

Mind you I have agreed to meet a friend for lunch next week (she is one of 3 people who does know and has has been fantastic and has just made me laugh - no brave soldier shit!) - hopefully the wig I have ordered will turn up and hides a multitude of flaws! I have just realised may bump into people who don’t know (though last time I saw a work colleague out on a walk they didn’t recognise me I look so —shit— different!)

@Starmer glad your chemo has also finished and good to hear you have had the first jab - I’m going to push to get vaccine ASAP (have read Dr Fauci recommends for cancer patients too!)

Peace, rest (and minimal side effects) to everyone!

@ElaineMarieBenes your neutrophils were below 7, did you mean 0.7?? Mine were 0.3 last Saturday! Hope Filgrastim injections will bump them up for next tests this Saturday.

Evening all. Just popping in to say hi and see how everyone is doing. I seem to have missed a bit of a rumpus. Apologies for any rule breaking on my part.

Optimism is lacking here, I'm sodding knackered. Some kind person shared the Kidney Cancer 5 year survival rates. I know I should be going wow 60% but I'm seeing the 40% at the moment. Also bad diet is a factor and I'm currently kicking myself that I don't eat enough veg. Talk about self pity and closing the stable door after the horse has bolted. That just spell corrected horse to hearse. Even Mumsnet is against me!

I don't know if it's because I'm stuck in as I'm isolating (last day) or as said by someone further up thread, time is just vanishing and I have nothing to show for it. Between homeschooling, trying to work and looking after the kids I feel I'm on a hamster wheel. DH is great and is doing loads, it's more my frustration than anything else.

Big moan there. Just needed to get it off my chest. The following are not helpful "my uncle Bob has one kidney, no probs", "you know June down the shops? Had hers out. Cycling 10 miles the next weekend." And my personal favourite, "you can survive with one kidney." Ill hear on the 17th what the next steps are.

Right, I'm away to wallow in self pity for a bit before I give myself a good talking to and get on with things.

Sorry @Bloodybridget still not up to speed on medical lingo - I should have said haemoglobin levels! I recall it was these dipping below 7 which freaked my Dr!

It's a week & a day since my first chemo and luckily I'm now feeling okay, although with sore mouth, reduced appetite and tiredness - which are bearable. Mainlining Lucozade. The first 12hrs were retching every half hour or so & couldn't eat for the first 72hrs, very fitful sleep. Psychologically it was nightmarish; I felt like I was rotting & my bones were going to snap as they aching & creaking. Luckily DP has done everything at home. My oncologist has said he'll prescribe a different drug called Amend I think, to be taken an hour before the next session starts. It better work!

How are you @HumphreysCorner ? You had yours the day after me & were finding it very rough. Hope it's lifted by now. My oncologist said there can be immediate ill-effects and then a few days later a dip once the body's got rid of the toxins, paradoxically.

@TopOfTheCliff - your plan for getting back to full speed sound awesome and are very inspirational!

@seizethecuttlefish - fortunately I've not had too many naff comments. If I'm talking to someone about serious stuff, I always cover myself by apologizing in case I've said something that comes across as insensitive. Anyway, chin up eh?

@FizzyOrange - DP's mum stopped chemo after about 10yrs of living with rectal cancer that spread because she felt so awful, even though she had a young grandchild that everyone else thought she should continue for. I wasn't expecting it to be easy but I can't believe how brutal just the first one's been. I was googling & there's lots of "oh I just was sick a few times & was really tired". It's like emotional/mental health - there's no hierarchy of how worse or better anyone else experiences it as you're the one going through it.

Positive wishes to everyone else on this lovely thread

@HauntedDishcloth I had my 2nd chemo this morning but only the one dose. They have given me more sickness meds so at least I won't run out. My sore mouth started today and now my eyes hurt. Hope you perk up soon. Dreading feeling tomorrow like I did last Saturday.

@HumphreysCorner - oh wow, I didn't know you could have weekly chemo. I've heard of two-weekly as an accelerated programme. I suppose it depends on the drug combos. I'm banking on the next 2 weeks or so to be ok to get the strength physically & mentally to do it again, so I really feel for you. Just got to try to keep your eyes on the prize somehow

@HauntedDishcloth I have 9 sessions, one a week to start with. 3 weekly ones will follow.

@HauntedDishcloth so sorry to hear about your DP's mum, that is very sad. I think brutal sums up my experience of the first cycle too, I was expecting a little 'fatigue' that a nice afternoon nap would sort out, not being asleep 20 hours out of 24 for a week. I too had the bone pain, for me in my pelvis, legs and feet (I have OC). The GP gave me amitriptyline and co codamol which knocked most of it out but then I had hideous constipation and then diarrhoea. Hoping the Amend sorts it out for you next time. I haven't had Lucozade for about 50 years so might get some on my Tesco order now I know they still sell it!

@HumphreysCorner oh gosh, weekly chemo sounds awful, you poor thing.

@FizzyOrange I bet fictitious Sally lied through her teeth and wore a wig and her friends were all fooled.

I’ve become a victim of Be Careful What you Wish For as after my radiotherapy planning CT was postponed their machine has broken so it won’t be till February now. Mostly I’m delighted as I really wanted a chance to get my breath back.
My nice young physio is working wonders on me. Today he fitted electrodes to my derrière and gave me electric shocks into my gluteus maximus to “wake it up!” Then pummelled my leg which was agonising. I actually paid £28.50 for the privilege. I bounced out the door feeling great when it stopped though. I think it’s all helping but when I stop moving I seize up again. I don’t think it’s the anastrozole or Herceptin just post exercise stiffness. My wrecked right side is slowly improving.
I got accepted onto the SafeFit trial today. It’s a free exercise and coaching programme for cancer patients from Macmillan and Southampton University to keep morale up among UK cancer patients during Covid lockdown. Can’t do any harm to try it out. You just go on the website and sign up and they contact you to see if you are suitable.
The BCN rang today and is trying to get me to slow down a bit. Fat chance! Now I am not feeling shit for the first time in months I am buzzing like a bluebottle.
Hang on in there folks we can do this one step at a time! It seemed to me they calculate the chemo doses so you are just beginning to feel better and whack they hit you again. At least the Herceptin isn’t as brutal as the FEC-T. I’ve done 6 out of 18 now and my nails and hair are growing again.
Warm wishes to all

@InOtterNews I do hope you are okay and home again. I am worrying about you

I'm feeling a bit embarrassed about having trouble walking more than a few metres- the chances of me exercising are roughly zero. I feel like a blobby sloth . It doesn't help that the cancer is pretty "extensive" in my bones, according to the latest report I received a copy of today. I don't think it's really safe to do anything load-bearing with bones like the inside of a Crunchie bar.

Lately I've really been missing the feeling of fitness I had when I was younger...and angry that I got complacent in my thirties and stopped going to the gym etc.

I would really give anything to go back to the days of having a strong, tight body, just for one more day. I'd always assumed I could get my fitness back one day if I pulled my finger out, and be one of those older ladies you marvel at in the boxercise class. Knowing that it's never going to happen now is really upsetting me and pissing me off.

Sorry to moan, but I can't do it anywhere else.