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.

@Chicagocubs welcome to the thread, I’m sorry to hear your news and adding my hopes onto everyone else’s that you surpass your goals. We’re all happy to read any rants or rambles you may need.

I am another GCSE mum, my son did his last one last Monday and has immediately started working full time (he’s doing an apprenticeship in cabinet making from September but as it’s with my mums company he’s been able to start early) and is loving the freedom it grants.

I am 10 days post debulking. No updates. Another 11 days before results. I’m swinging between hope that it’ll be borderline against all odds and misery at the worse news that could be coming my way. I don’t know what to think. The waiting and never ending limbo with this shit is unbearable.

Hope everyone is doing well.

Im on the verge of booking a cruise as all stable so far. Just had the most detailed interrogation with an insurance company, and expensive quote !
Wondering whether to go without insurance and hope for the best, or if s*ds law will intervene. Never done a cruise, doing it alone, always been a bit of a wimp.
I do worry that Ill hate it and want to get home, as they say hell is other people although its a smallish ship. I really admire Topofthecliff for what she does!

Had avery nice visit with grumpy oncologist. Have only seen him once, pre chemo and I did not like him. Yesterday I did as I have mentioned m
the neuropathy in my feet to several specialists and to be fair have been referred, but apparently that will not be till August and he was the first one to say, but that doesn’t help the pain you are in now! So finally have some painkillers which might stop me feeling I am putting on socks of pain every night!
Radiotherapy starts 4th July, I also have an occupational therapist appointment for work and a dental appointment that day! Why do these things always come at once, just to ensure you are extra stressed?
I am so grateful I seem to be getting to the end of the barrel of shit this year has been, nearly the anniversary of my DHs death, and I hope, once that is past that it will not just be ‘some new shit’, but am not too optimistic!
My DD did her Highers this year so can relate to the exam stress. My other one did hers last year with her Dad in hospital and am so glad the results came out early so he knew she was going to University.
You are all in my thoughts so much, life really shouldn’t be this hard.

Obviously I mean occupational health, not therapy, sorry!🤦‍♀️

Honestly you can be alone as you like or as sociable as you like and if you really don’t like it you can always say you want off at the next stop before making your own way home. And you never know that may in itself turn into an adventure. A nice one.

I can take or leave company and I’m very often content to speak to people and pass the time of day whilst sitting at the next table for dinner. I’d sit with people to help out a waiter if the tables are full but I prefer to eat alone so I can read up on what I’m doing the next day. But on the other hand when I was in the Caribbean about 6 years ago I jumped off a snorkel boat and landed next to a very nice Swiss lady and her son who’ve now become very close family friends. We meet up every year. Either here or in a Switzerland and every couple of years we do another cruise together. I fly to Switzerland then we drive to Italy and go round the Med and sometimes they even come into where I live on a ship and I meet them for the day.

Just give it a go, treat yourself, because it really will be what you make it.

As for insurance - I think I’d be inclined to get it but only because I don’t think I’d get much via a go fund me page if one had to be set up to get me home. 😂

@Chicagocubs

Im really sorry to hear your news and hopefully we can be of some company for you. Xxx

Thank you all for the lovely welcome. I won't lie I am feeling very sorry for myself today. I am so tired and when looking at photos last night of
DS as a little boy , I look unrecognizable. I have always been slim with a small frame but now I look so gaunt. I've had a great life and been blessed in so many ways but I would just like a more. I won't get to travel to the US again (where I grew up) this makes me feel very sad.

My husband and DS have been so wonderful.
We have held off telling DS that my time is now limited until his GCSES are over. He is at boarding school and sits his last exam today. He is coming home tomorrow just until Sunday.
He has a week of pre A level classes and term ends next Saturday. He has sar his exams without once complaining and has worked incredibly hard. I can't wait to give him the biggest hug tomorrow.

DS is super excited about starting 6th form.He will be at the same school and I know that he will get so much support. He has a great life ahead , he has turned out to be such a wonderful young man. I am just so sad that I will miss so much.

I have been reading all your stories and it sucks.
Keep fighting, you really are an awesome group of women.xx

Top checking in from Caernarfon Docks where I have taken shelter from the weather for the weekend. It is good for me to have a few days off to recharge every now and then although DH gets antsy and has to go out for a bike ride. He doesn’t do taking it easy! Today he has been exploring Anglesey. I was meant to be sailing round Bardsey Head to Pwllheli but decided it would be rough and wet and miserable so I’ve been chilling instead. My call as I am the Skipper!
We are around 80 percent through our round Britain trip and should reach home early in July if the wind cooperates. It’s been interesting to step out of my life for a while. I also deliberately left behind the whole cancer survivor thing too. I have had to accept my arm gets swollen if I do a lot with it, and I’ve booked to see a nurse specialist when I get back although she is pretty sure I don’t have lymphoedema. My joints are awful and I hobble around when on the land. I’ve got to buy some wedding shoes for DDs big day and I’m currently thinking sparkly white trainers! I couldn’t walk or dance in heels. Life is much easier on the boat.

It has been weird being told I am an inspiration as basically DH and I are on a jolly holiday doing what we love best but to outsiders it all looks very brave and heroic. I met a lovely lady yesterday who kept shaking my hand and saying I was amazing to sail from Fleetwood to Conwy on my own. I think she probably doesn’t even drive to the shops without a companion! If that inspires her to be more independent then I suppose it’s a good thing.

@Chicagocubs welcome to the friendliest thread. Are you strong enough to go out and about still? How do you want to spend the time you have with your DC? I don’t know if my cancer will come back so I’m packing in the adventures just in case!

@Bloodybridget I guess the dilemma for you is if the bone marrow has been damaged by the drug that is keeping you going what else is there to replace it? Sending manly shoulder pats as I don’t do hugs much.

@thereisonlyoneofme we met a lot of people off cruise ships in Scotland especially in Shetland and Orkney. They did seem to be having a fantastic time and were very friendly and chatty. I think you will enjoy it.

Best wishes to all waiting for tests, for results, or for treatment.
Top

@TopOfTheCliff I have good and bad days.
My sister is coming from the US on Monday , I"m really looking forward to seeing her.
I just want to spend quality time with DS but we won't be taking too many trips out. I live in a lovely part of London and have a garden and roof terrace so I can still enjoy the nice weather.

You are right to pack as much in as possible, I hope you have a wonderful day at DD"s wedding when it comes.xx

Hello I'm here too. I had a mammogram which was clear so 1 year cancer free. X

Will catch up later x

@HumphreysCorner that’s fantastic news!

Snap - just had my one year out mammogram too! It was clear but I can't bring myself to use the phrase "cancer free" - too pessimistic 😕

I had my 1 year mammogram before I’d even started radiotherapy, just due to my tipsy turvy treatment timeline.
I’m planning a PET scan in a few months as a precaution because of the extent of the lymph node spread, I knew they’d removed all the cancer from my breast but not from my arm pit.

Hi @Chicagocubs welcome to the loveliest thread thread yet the thread no-one wants to join on MN. I am so very sorry to hear your news & as a stage 4 recently-diagnosed (March) metastatic breast cancer-haver I know I will be in your position one day in the not-too-distant-future. My daughter was 3.5 in March & starts school in September & I was so, so sick in March, & in & out of A&E, & my goal was to make it her birthday (August) & walk her to her first day at school in September. I'm on track, with IV chemo, to make those goals. I hope & trust that you will make your goals with your son too. The last 5 years must have been so, so tough for you. I'm broken after 4 months so I can't imagine ... but what a great mum you are, to have been a mum to your son for 5 years and seen him through his GCSES. Thinking of you with lots of love.

I've had 7th Pax on Friday, I always feel fine after chemo until Monday and Tuesday when it takes me down; so Saturdays and Sundays are very strange as I'm tired & weirded out from all the drugs yet quite well & energetic yet also waiting for the other shoe to drop.

I've had some very bad spells of mental health this week AND biggest news is I found out (I knew anyway... I just knew...) that my not very 'D' partner has been having emotional affair. 'aint that great at just this time. But I was very very calm & honestly my absolute truth is: if he can't handle the stress of this situation, then off he goes. I feel very strong & capable of more than anyone thinks possible & I feel very clearly that me & my daughter will be fine. Just tell me. Don't lie. 7 years together. Never done anything like this before blah. We do love each other. He's coming to realise what he's done. He's apologised, partly. back to couple's counselling. We'll see.

@Chicagocubs all my family live in the US too & my great fear is me & DD will never get to go home again (well she definitely will, I may not). I miss it so much. My family has been so supportive though and my younger sister is now on her second month-long stay with us, taking care of my DD whenever needed & generally being amazing, so amazing. I wish I could hand over care of DD to her but so complex with 'D'P in the mix. She's currently single and child-free but very much wants her own child & of course I understand, she's only 35 & I'm 47 & it was my greatest dream too. But I am scared of what the future holds for DD of course.

Oh well. I'm feeling weirdly cheerful despite my FUCKED UP week & drinking some delicious booze & eating fish & chips with both curry sauce AND mushy peas. I am truly & greatly making the most of my life. I've also just re-watched 9-5 (Disney + get on it) and it was JOYOUS.

Sending love to everyone & @Bloodybridget so sorry to hear your news. But many blood diseases have ok outcomes. I have a very bad and unusual one called Cold Agglutinins that obviously came from untreated cancer. But it's coming more under control as the chemo controls my cancer I think. Don't give up all hope yet.

@mowly77 jesus wept. What a week for you. You enjoy those fish, chips and mushy peas and whatever you want. Stick it on the plate and wash it down with a glass of your whatever is your favourite drink. You deserve it.

Men! Well…what can we say? Think you said it all and I agree.

Thinking of you. Sending you a big hug. Glad you have your sis there. She sounds like a much needed rock.

@mowly77 I'm so sorry , your week has been truly horrible. Your little girl is small , it breaks my heart hear your story. You will walk her into school for the first time in September.
As far not so D partner , I have no words...
I am in awe.of your strength.

I met DH ( he is British)while we were both working in New York 20 years ago. I'm from Glen Ellyn Illinois, where in the US are you from ? We have lived in London for 13 years. Bring away from extended family is so difficult right now , it's so great that your sister is here. She sounds wonderful.

My sister arrives in the morning, tomorrow can't come soon enough.I have taken a turn for the worst over the last day or so. DS came home from school on Saturday and has just left.
We are talking it day by day but his school holidays start next Saturday. He is 16 in 2 weeks time ,that"s my goal now. I don't think the of August is realistic now.

There was no hiding the reality from him this weekend. I want to keep everything " normal ' for as long as possible. I know that it won't be long now.

I'm hoping and praying that you will defy the odds @mowly77 . Sending you lots of love.xx

Lots of love to everyone ❤️

@Chicagocubs I am originally from a tiny village in the state above yours :) We did spend about a year in the NW Chicago suburbs before moving back to my home state so partner could finish university, and we have been in London for about 8 years now. Its so very tough to be away from what you know - no matter how long you have been gone, there are cultural things which are ingrained and you miss the familiarity. I hope you have a wonderful visit with your sister and have a memorable, comfortable time as a family.

Hi everyone! I’ve been lurking putting off posting for a couple of months, but could do with a handhold / shake / slap, not really sure which.

I was diagnosed with stage 2 melanoma in April after visits to the GP in August and again in February about a dodgy mole.

Despite being stage 2, all signs are positive that the cancer hasn’t spread. I had the primary excision in March and I’m due a wide excision and sentinel lymph node biopsy at the Christie on Wednesday to check for spread.

Despite the positive outlook the first few weeks I was a real mess.

I am doing better mentally now, but am still low-level terrified all the time. I’m scared of the surgery, the wide excision is in an awkward place, and will need a skin flap to close it. I also can’t get out of my head how much depends on it not having spread how how chances of survival drop off if it has (goes from 85 to 60 percent)

I’m panicking that if it was in the nodes in March, it will have spread significantly further by now (thanks Covid delays) and I also can’t stop worrying that even if it’s not spread this time I have a significant risk of further primary melanoma because of a related genetic condition.

I have a 5 year old DS and a DH who is just about holding it together, and I don’t know if I need a handhold, a shake or a bloody big drink!

Mostly I think I just need to get it off my chest.

@Confusedasnormal so sorry for all you are managing

I hope you don't mind me hopping in. I've been referred for 2ww, suspected breast cancer. I'm 40 and have had hard full sore breasts for a few months. The doctor didn't disguise her shock that I have had bilateral green nipple discharge since stopping breastfeeding 8 years ago. Very recently the discharge has become clear on one side. At the appointment the doctor said my breasts were generally lumpy and she wasn't too concerned. On reading the referral letter she writes there is a firm 1.5 lump and I have been asked to ring the clinic if no news on appointment date tomorrow (that's one working day after referral) I'm wondering why she said she isn't too concerned but is acting this urgently. Literally anything you contact my surgery about is met with "we are very busy/use NHS website to check symptoms and advice/see the pharmacist.

Wishing all you courageous ladies strength, support and optimism wherever you are in your journeys.

Just had my final chemo today, so glad that is over but bit dead. Gcses also over but no school for y10 ds so sorting that out. Radio call on 4th giving dates. Cornwall soon for a week.

Nutmeg Good you have been referred to be properly checked. Would have thought discharge for 8 years would not be cancer as too long but a 1.5cm firm lump is def something to check. Hope its nothing, at least that is small and 90% of referrals arent cancer.

Welcome Confused All the best for Wednesday. Not a skin cancer expert and mine did spread due to covid delays but just to lymph nodes. That did mean chemo needed but certainly in breast there are lots of lymph nodes so has to get through a lot and its not that fast to spread though rubbish having to wait.

Chicago Glad you have your sister with you and hope you defy the odds and Mowly too. I am putting a ban on any dying on this thread, we want you around as long as possible. I really hope you both make the milestones with your children and thinking of you both and sending love.

Love to everyone else.

Hello everyone. I don’t know if you remember but I’ve been waiting on the sidelines following womb/ovary tests which came back endometriosis stage 4 and op required. At the same time they told me I had a cervical biopsy. I’m still awaiting the results of this but a few nights ago I felt a lump in my left breast. Made husband feel. Didn’t want to go back to the doctors as I was worrying they would think I was a nut job by now, but husband made me go yesterday. She’s felt the lump and found thickening of the breast. So now I’m referred under the 2 ww. It seems like all of this is never ending. Anyhow the lump doesn’t hurt at all. She said it’s harder than she would like but hasn’t got rough edges. I feel like I’m being a real pain on the NHS and have decided not to tell friends in real life (who have been so supportive with ovary, womb and cervix). I did say to the doctor I was very sorry to bother her and kind of grateful it wasn’t the same one who has been dealing with the rest. Hope you’re all ok and I can stay here a bit longer. You are all amazing and I think I’d go crazy with all this waiting and testing without having this thread. Thinking of you all. Apologies for interrupting again.

Hello mum'snet ladies,

I'm Kathy Chicagocubs sister.I flew in yesterday to be with my sister, she is now very close to the end of her brave battle.My nephew returned from school last night and we celebrated his 16th birthday, two weeks early. My sister wanted him to finish the term with his friends but his wonderful mom is now in her final days.

It seems like just yesterday when that awesome boy came into the world. He has given my family so much joy ,my beautiful sister will live on in him.We are all so proud of him, the bond he has with his mom is beautiful to see.

My sister has asked me to write to you ladies. I read the lastest updates to her just now. She thinks that you are all awesome, which you clearly are.

Your stories have given my sister so much comfort over the last few days.She is a very private person and I know that she has often felt alone and frightened.She wanted me to thank the fellow GCSE mom for pointing her in this direction.She is rooting for your daughter. My sister has asked me to update on GCSE results day, she wants to be part of it.

Sending lots love from Chicagocubs, her gorgeous husband and son .

Kathy x

Aww Kathy I am so sorry to hear your update re your lovely sister, am glad she has you and her son has you to, 15 is so young to lose your Mum though still hoping she will make it longer of course.

Sending lots of love to you all and feel free to pm me as well if there is anything I can help with. I also have a gcse child and am so glad MrsPNut sent your lovely sister over here. I am sure her son will do her proud on gcse results day, just getting through this year and gcses and his Mums cancer shows he is amazing anyway. There is a charity on here called Woolly Hugs, they certainly used to knit blankets made of squares of things your sister loves or has meaning which would go to her son or anyone who would appreciate it if that is any small comfort. www.woollyhugs.org/ I think is the organisation and there is a MN category. If you would like one I could ask them,last one on here is 2021 but I am sure they would be happy to help.

It probably sounds silly but I know your sister was sad about the changes in her appearance, I know that upsets me too, if you have time to find photos she is happy with from pre cancer that may help a little. It sounds silly but seeing your body damaged by treatment and cancer just reminds you and pictures were you were cancer free and looking nice help a bit.

Sending love and hugs and thanks for being a great sister.

Sorry originalfloorboards for the added scare and of course you are welcome as long as you like even after you get all clear if it helps.

Hi Kathy, I am so sorry to hear that @Chicagocubs has take a turn for the worse, but so pleased that you are with her and she has her family around her. I’m also really pleased that you celebrated her DS birthday, even if you had to fudge the dates a bit.

You are all in my thoughts, sending you all lots of love and light x

@Silkierabbit and @nutmegx thanks for your good wishes, and @OriginalFloorboards good luck with your referral, hopefully it’s nothing serious.

Kathy I am so sorry to read your message about your brave sister. I am so glad she found time to come here and share her story with us, so very courageous. Your nephew is clearly a special boy and I wish him the very best for his GCSE results and his future. @Chicagocubs send so much love your way and I’m so pleased Kathy made it here for you. Xx