Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Hi Top yes we may be closeby then, we are staying about 10 mins inland from Newlyn for a week, with 3 teenagers, acquired an extra one. Do you know what day you are there?

I started looking at this thread because I think my husband is about to be diagnosed with liver cancer, and wouldn’t have commented at this stage until I saw your post. My daughter was diagnosed with a pilocytic astrocytoma aged 4. She was in serious trouble by the time we got her diagnosed after months of me insisting something was wrong. They didn’t get it all first go and she had the 6 monthly scans etc. It did start to grow again and she had a second surgery age 10, planned this time. This was completely successful although we had been told it was in a difficult place. She is 34 now and is fine although she was diagnosed with hydrocephalus 5 years ago and that was very difficult to deal with as it’s a complicated situation and despite best efforts and multiple surgeries she has ended up with a shunt. Having said that she’s living a normal life, working, driving and trying for a baby now.

@AGreatUsername BBMF is based just down the road from us so we see them regularly. The Lancaster often flies low over our house doing a fly past of the RAF base in our village.
We also have the Red Arrows based here so get to see them all the time too. Who needs an air show when you can sit in your garden and see them.

Hello everyone. I haven’t got it in me to reply to everyone’s posts but what can I say Kathy - @Chicagocubs rest in peace. Although I am not religious.

just popping my scanxiety on here. Had first CT scan today, yes it was on a Sunday morning at 9.20 and contracted out to “an NHS partner”in mobile unit. Everything is so fucked on every level.

2ww wait for the results. Will I live longer or die soon? Love these questions.

oh well. Am broiling and drunk in the sun on the beach as my beloved sister has taken DD to see West End Frozen ❄️

@MrsPnut oh I am also jealous of you! I love the air shows and seeing the planes. My favourite is seeing the Chinook (or the whacker-whacker as we all call it for some reason), the noise it makes hits my adrenaline button for some reason!

@mowly77 I hope you get good results. I hate how terrifying all this is. All the time. I am due my full results from surgery on Wednesday and the closer it gets the more panicked I am. I know I’ll feel better once we know what I’m dealing with exactly but I would like to put my head in the sand please.

Hello everyone.

My home in the Uk is very close to Swansea and the air show used to figure in our summer holidays.

And outside of holiday time our family life has been aviation (both military and civilian) and the thrill of it all just never leaves you.

A relatives son flies with the red arrows but I have to admit my best ever memory of St Athans was the quickly put together Sunday tea had at an aunts house one Sunday - sliced corned beef, chips, big marrow fat peas and bread and butter. I still think about it almost 47 years later.

All the very best to everyone waiting on tests and test results. 💐

@Fantasea 'RE ESA I 'm not sure if I have had a review . I have had to contact them as my circumstances changed when my NHS pension was paid. I also had a phone interview at one stage but they told me that was because they had changed some of their procedures during the pandemic so that new claimants could be processed quicker. I thought being part of the support group meant they wouldn't do reviews

@Fantasea ESA cont... When they did contact me for the interview they sent a letter and arranged an telephone appt. I did panic about it however the guy was on the phone for less than 5 minutes and I get the impression it was more of a box checking exercise for them. Try not to worry to much I think they will be in touch when they need to speak to you.

I recently went on esa first 3 months on lower rate then moved to support until Nov 23. They said would get questionnaire in post Oct 23. Not sure exactly what it is but think its something like new medical evidence etc and form again and before that now in support no medical evidence needed and no reviews.

Floof is a bit crazy today and has nearly fallen off my headboard twice, first time just the front paws and a bit of head had not fallen down the back then he scrambled up and stretched out lent against wall and started falling down the back again. Dds headboard is exactly against wall, mine has a floof sized gap.

@AGreatUsername I love the Chinook too, having seen one doing loop the loop was an amazing sight.
My favourite plane ever though is the Vulcan, I’ve seen it display a few times and seen it flown even more. It’s a shame that it’s not something we’ll see again.

@mowly77 et al, I’m waiting for biopsy results from the other week, I hate waiting for scans and test results. In my case the bad news always seems to come along in waves.
I had reflexology lymphatic drainage on Thursday and she did a bit of reiki and normal reflexology on me too. It was a odd tingly feeling in my lymphoedema when she started on my left foot, it has left me feeling less lumpy and my next session is booked for 2 weeks time.

If my biopsy comes back clear then I am all set to start hyperbaric oxygen therapy straight afterwards. It’s supposed to promote healing which should help me all round.

@Runningwithoutstopping and @Silkierabbit thank you both. I also had the phone interview which should have happened before I started to be paid ESA but when I queried it, they said it was the backlog of Covid, so same as you. I also thought being in the support group meant no more reviews but at this interview they said I would need one in July. I'll just wait, I'm not worried as long as they keep paying me!

Mine was quite the shambles being set up but I had 2 interviews, forms sent to wrong address, payment blocked, sick note rejected, sick note that would not upload, lost sick note, interview set for in person but suddenly after many phone calls it got sorted and now its higher rate from week 14 which was 5.4 to Nov 23 with no more forms, sick notes, reviews. The interviews are fine, just tell them doing chemo and should be in support group, they did some kind of work plan but it was so easy just something like think about being self employed at some point. It was very tick box.

Hi all

Had the best bucket list day yesterday at the F1 at Silverstone. Will remember this for a long time. Waited hours for Lewis but he came out and I touched his trophy. A long day but so worth it.

Much love to all, catch up later.

HC x

HumpreysCorner sorry had a little snigger to myself, "touched his trophy"
never heard it called that before 😂

@thereisonlyoneofme 😂 I wish 🤣 x

@PinkTonic Thank you. Stories like your daughter's really help, and I hope that my daughter gets a future like that.

I'm sorry really sorry to hear what you are going through with your husband though and really hope that it's a false alarm.

I'm part of a fb group for JPA kids, and whilst it's useful, I guess the parents of the more 'complicated,' cases are more likely to stick around. Ones with many brain surgeries, years on chemo etc, lots with it in their brain stem and some very sad endings. I have no idea how typical their stories are, or if they represent those that need support the most.

I wish we could just do whatever we need to to get rid of it now, have intense treatment for a year or two and then get on with our lives, rather than hanging over us. This watch and wait is hell. Its scary that with your daughter ended up with a shunt so much later, but I guess to an extent this is going to be a lifelong thing right?

I hope I'll feel better if we have a couple of no growth scans, but every thought for the future is tumour dependent. Hopefully she'll start school Sept 2023, but I've started discussing how late we could make the decision to delay her a year if needed etc (summer born thankfully so makes it easier).

I know we are lucky to even be able to think about the future I guess. I know the kind with the worst Astrocytoma's dont get that.

We are 5 1/2 months post surgery, and it feels like we've got a long way to go before she's recovered physically - I think barring posterior fossa syndrome and stroke, she's had every side effect going, so I'm staying the thought of a round 2.

Did it get easier as time went on? Or did the panic start to increase again as the tumour grew?

Did your little girl have issues with fatigue and ataxia long term?

If you don't mind me asking, how did you approach explaining to your daughter what's going on, as she grew? My daughter is younger (just turned 3) then yours was, and she talks about her 'hospital treatment' and asks 'am I all better now' but I'll need to give her more details as she's able to understand.

Thank you for taking the time to tell me her story. All the best with your husband x

Lucky you @HumphreysCorner, I met him years ago when he was up and coming and he was lovely. I think my parents know his vaguely through something as they live near where he grew up. But then my dad seems to know everyone.

First week back at work 5 days a week here, I was in the office yesterday and was exhausted so had to retire to bed at 7:30. I’m working from home for the rest of the week so easier to manage.

Glad you had a lovely time HC

We are off to Cornwall today. Floof and DD are super excited and up at 4am, woke me and DH up at 5.30am so we did not oversleep. 😂

Floof has been footballing since then, this is his head tilt please throw me another football wrapper look, 4 behind him.

And in boring cancer news, radio is for 1 week intense in about 4 weeks time, ct in 2 weeks then hormone tablets and on list for reconstruction surgery.

Hope your radio is going ok Podge

Hi all!
@Chicagocubs - heart felt condolences to Kathy and Cub's family.
@Silkierabbit - Mr Floof has a sweet but very naughty face! Enjoy your holiday and I hope things have settled a bit for your DC.
Hi to everyone else on here and commiserations on the shit time that we all seem to be having - apart from Top who is doing fantastically well on her trip.

I have been rather absent for the last three weeks as cycle 4 of TC hit me really very hard. I then developed an enlarged lymph node near my armpit plus a bladder infection and ended up in hospital with suspected sepsis. They decided that I either I didn't have sepsis or that I'd fought it off but there were no beds available anyway so I eventually got sent home with oral antibiotics after being isolated in a side room because my white & red blood cells were so low. The good news is that cycle 4 was the last of my TC so I'm now done and dusted with chemo but I've still got Herceptin every three weeks until the end of September which is a dream compared to TC.
Hopefully I will start to look less bloated now as steroids have stopped and my hair will start to grow back in a few weeks although I had alopecia before cancer so I'm not hopeful. Cycles 3 + 4 have been hell and I'm so worn out by it all. I saw a consultant today who wanted to book my radiotherapy in. I have refused the radiotherapy as I do not believe that the benefit outweighs the risks involved. I asked him for stats to convince me that RT would be good for me and he could only say that by NOT having it then my chances of getting cancer in the exact same place increases by 75% SHOULD my BC come back in my left breast. It would not stop further any cancer returning. I outlined my concerns over potential damage to my lung and heart but he was unable (and unwilling I think) to provide stats on how many BC suffers have tissue damage. In light of the fact that the after effects of RT killed my sister-in-law last year and I have to return to work by September because my SSP runs out (RT wouldn't be able to start until late August at the earliest), I said no thank you. What was telling was that he didn't argue with me or try to change my mind which confirms my suspicion that the RT is just a mop up exercise and probably unnecessary after successful surgery and three months of chemo. My DP agrees with me and I'll just tell the DC that it isn't needed after all. I've been so down and fed up with feeling ill all the time from the chemo that I've reached my limit and I've drawn my line in the sand so to speak. I never got to go on our family weekend away to London because I was too ill to go so I missed the Hellamega (only been waiting three years for it!) and 21 Pilots and I want to get better so that I can go on holiday next month and actually enjoy it.

On top of everything else I've now got scanxiety because I've been called back to hospital next week for them to have a look at that enlarged lymph node under my right arm despite telling me in hospital that it's nothing to worry about. It is also possible that I may lose my PICC line due to one of the district nurses yanking on the covering and pulling it out by just over a centimetre - she was so rough with it and left me bruised so I'm hoping that she'll not be coming again. She also told me that my bladder infection was nothing to worry about and to 'flush it out' by drinking water - I found out in A&E that that they are told to report ALL signs of infection and to tell the patient to contact the chemo unit asap due to sepsis risks - she really was an utter cow.

@mowly77 - sorry to hear about your not so 'D'P. Some men are just utter shits.

Hi everyone, just jumping on quickly to ask a little advice.

My histology results from surgery are supposed to be given to me tomorrow to confirm if it’s cancer, what type etc. I have gone totally blank, what questions should I be asking the surgeon?

@AGreatUsername I just asked what the ideal treatment plan would be and if that was the only recommended course of action. I’d also
make sure you have a contact number for the specialist nurse so you can contact them afterwards if you suddenly think of something else.

Thanks. I’m assuming they will tell me the type and stage etc without me asking them. I am going to ask about the plan, I don’t know if I need ask more, about if it will be cured and gone? I’ve realised lately I’m so clueless on how cancer works. If they’ve removed all the visible stuff and then blast with chemo am I cured? Or just NED until recurrence?! I have no clue. I’m still secretly hoping she’ll say it’s borderline but having 2 professionals tell me they looked really unusual has terrified me tbh, I don’t want unusual things I just want easily cured run of the mill things 😅