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.

@Chocolateismyfavourite you are dealing well with the rollercoaster so far. Keep breathing and stay calm. It’s great they found this thing, I have a relative who was only diagnosed after she had a stroke. You will get through the obstacle course that is cancer treatment in your own way. Sending hugs

My lovely BCN popped up after 2 weeks off with flu and is furious with radiology for making me cry. I have a session with the consultant booked to go through what has happened and they want me to write a complaint to educate the uncaring person I saw. I think I will do because if even battle hardened Top was upset then ordinary mortals would be crushed. She also wants to book me in with the psychologist which freaks me out a bit. I am my usual cheery self again and always come out too happy for their treatment pathways. Maybe I am just deluded.

I bought some new felt pens and am going to colour in one of my Fuck Cancer posters. They make me laugh a lot.

@Makemineadecafplease welcome to the loveliest thread. Have you got your pre chemo chat booked yet? And have they told you which type of drugs you will be getting? You will get loads of information to read and it’s all very helpful. If it helps ask us anything. I am going through my second course of BC chemo in two years so I am now an unwilling expert. It is generally regarded as Tough but Doable and it is good to know you are doing everything to get rid of the bastard cancer. Hugs x

Sending love to all
Top

I received some good news today. Before cancer I was receiving a infusion (infliximab) to manage Crohns. After the cancer diagnosis it was stopped as it lowers your immune system I found this one of the most upsetting things I had to deal with.
I had 7 years of remission from Crohns symptoms while on infliximab ,and post treatment as well of worries that the cancer would come back I lived in fear that I would have a Crohns flare.
However 2 years post treatment( Oc stage4) they are going to restart the infliximab. It goes without saying I didn't think I would see this day. Even better news is it is no longer delivered by infusion but subcut injection that I can do.
It feels like I've come out of a long tunnel and I'm blinking in the sunshine 🌞

@Runningwithoutstopping that’s amazing news, I’m so pleased for you.

How are you doing in general? Is your OC under control right now? I’m stage 3 OC and 2/6 sessions of chemo down and feel like I’ll never be able to feel positive or really happy again. Every decision is now impossible because I feel like I can’t plan more than a few months ahead. I’m usually so impulsive and “sod it” about things because life is too short, but now that life might REALLY be too short I’m paralysed by insecurity!

Well I'm not having the op. What a day. They decided I could have had this thing in me for years and I've been fine, if I have the op it delays Chemo by two months, they told me two weeks .

@AGreatUsername My OC is NED and my daily life isn't affected by OC in fact I think covid (which I've had x3)has had a bigger impact on my life since the the end of treatment.
During treatment I really could only put one foot in front of the other My advice is to try not to think to far ahead use your limited energy to get through it. I did a lot of distracting activities during treatment I liked adult colouring ( I looked at the fuck cancer colouring book but was worried my 7 yr old would take it to school!) I also got very good at making pom-poms when knitting was to much effort. I found that I needed to stay off S.M ,apart from this thread which was a life line ,as it made me more anxious (comparison is the thief of joy as they say on mumsnet)
I was offered psychology by the hospital during treatment (which I jumped at) and after treatment I had counselling with a local cancer charity. They both really helped and I would recommend trying to get that support or going to your GP if you need more support.
I'm not a fully paid up member of the 'be positive' brigade in fact I have a mum says that to me all the time and each time she says it I want to kill her. I do try to be positive about my future and I think that is possible while being realistic. Some airyfairy positive thinking is not going to take away my cancer but I can choose to live my life positively while living with cancer and I choose to do what I can while I can.
BUT it took me a long time to get here if you have feelings of insecurity about the future it's normal and it's ok, it won't always feel like that. Cancer treatment is a scary rollercoaster and you can't feel anything but sick and mixed up when your on it xx

@TopOfTheCliff i have found the clinical psychologist attached to the breast clinic to be really really helpful. I also crafted a strongly worded complaint about a rude and unprofessional staff member in oncology; she was in an administrative but patient-facing role so for you to have had such a bruising encounter with someone in a clinical role is dire. I feel it really undermines the value of the other mostly wonderful staff, so for them, yourself and patients still to come I would definitely be honing a strongly worded complaint.

Got fantastic news today that plastics are able to re-reduce/lift/lipo my non-cancer breast to match my reconstructed one which, with radiation, has now shrunk to about a cup and a half smaller and was starting to bother me with how it looks in clothes and general feel. It was a no go at mastectomy due to risk and lack of surgical notes from a prior reduction. Have to clear with oncology next week, but its a short day patient surgery so it shouldn't be a problem. Guess I can return all those bras I just got with pockets for inserts!

Hey, ladies, haven’t posted for a while. Hope you don’t mind me just popping up for a moan! So, started TC chemo on Wednesday and feel terrible. Had my first Filgristim jab today and my eyes have swelled up but that could be cos I’ve cried buckets today. I wasn’t sure I could do the injections myself as I’m squeamish with needles. Everyone kept saying I’d be fine, but how could they know that? Hospital said gp practice nurse could do the jabs but not over the weekend or bh and there was no availability at any of the hub clinics. No appointments available with practice nurse, but when I pleaded, said they would ‘squeeze’ me in. But defo couldn’t do weekend jabs. Cue toing and froing between gp and hospital about who is responsible for me! Anyway, went to practice nurse appointment today, after being told three times that I’m being ‘squeezed’ in. Take along my husband, so he could see how it’s done and perhaps do it at home. Check in at surgery but message comes up to say nurse is running 26 minutes late (and we’re 30 mins early anyway), so husband says he will go home and come back later (we live 10 mins from the surgery). Then I get called for my appointment on time but no husband. The nurse gets arsey when I say I need to wait for my husband and I explain the message on the check in screen. So she keeps saying that my appointment was for 4pm and she was ready for that and I say, again, that there was a message on the screen and this goes on until I tell her that there is no point in saying the same thing over and over and expecting a different reply. Then she adds, again, that she has ‘squeezed’ me in, to which I reply, rather sarcastically, that I’m sooooo grateful. So, then, husband turns up and she goes all professional and thanks him for coming to my rescue!! My own husband, like he’s s stranger she’s plucked off the street to come to my aid. I lost it and told her that I found her comment offensive and unhelpful. There’s more but I won’t bore you with it. Went for a walk after on my own to clear my head and called the Macmillan helpline for support. Omg, the nurse wouldn’t listen and just kept going on about how I shouldn’t focus on the events at the surgery. i said i needed to vent but she wouldn’t listen. I asked her to just listen to me but she wouldn’t, so i had to cut her off. Ended up sitting under a tree in the park sobbing. Sorry, I know this is a rant, but I just had to share it. Thanks for reading.

@Tryhardermum So sorry you've had a bad experience, I know how that feels, so frustrating when you can't seem to get people to understand what's going on for you when you are already in a vulnerable state. I've had various of those sort of encounters and it can put you off getting any support at all. I do a lot of work with trauma-informed organisations and their approach is so different, so coming up against this in the NHS is surprising to me as I know about good practice elsewhere. I can appreciate that they are probably burnt out and working in crappy systems and don't get organisational support, but there is still a difference in how individuals respond, whether they seem to be able to be compassionate and see your perspective or are just argumentative despite you becoming distressed

Thanks, Sierra, for your understanding-I haven’t found much of that at the hospital or GP practice. I’ll probs get struck off now for being sarcastic with the nurse, but she showed little compassion or concern for my predicament. Being ill and treated by the NHS is r scary-I have very little confidence in their abilities or even desire to try to help me. I ended up calling the Samaritans-how desperate is that! Sorry, I’m feeling very low, thanks to the hospital, the nurse and Macmillan.

@Tryhardermum what a horrible sequence of events! It seems to me that we are already being really brave and holding it all together and then we meet an obstacle. It’s a person with no empathy or flexibility who refuses to help or is brusque instead of kind. Normally we would laugh it off or ignore them but when fragile it just brings the world crashing down. People who don’t listen or project their own feelings onto us or who are just arses make everything so hard to deal with.
How was the injection in the end? Did DH agree to do it over the weekend?
How did you feel after offloading to the Samaritans? Would you feel any better if you wrote down what happened and sent it to the practice manager at the surgery? A preemptive strike if you like? I can imagine how the nurse was feeling too, fully booked and trying to do you a favour but cocking up and making you distressed. Half the time it seems the staff are just overstretched and exhausted and I hate to be adding to their workload and feel apologetic just being there.
I hope you can see that you deserve kindness and care and it’s not your fault they failed you. Can you spend some time today looking after yourself quietly?
Sending hugs
Top x

@Tryhardermum you poor thing, you must be so upset and exhausted. We all know that the staff are overbooked and overstretched, but it really is no way to treat a cancer patient, who is already very vulnerable, oh and seriously ill. A lot of the trouble is that you have to fight against the system when you are at your weakest, physically and mentally and it feels like no-one really cares. I have had variable experience with the Macmillan support line too, one told me to 'focus on preparing and enjoying Halloween' as a distraction to the fact that my biopsy results were not back over a month later! it really depends who picks up your call. I too have phoned the Samaritans in desperation, just to have a cry and moan to someone who won't interrupt, sometimes you just need to tell someone to get it out.

In February I shall be 3 years on this path and am so battle weary. I really think that if you can't show kindness and compassion to a cancer patient then you really are in the wrong job. One day I shall hear myself say this.

Sending you a big hug Xxx.

Wondering if anyone has any advice. De-flead my cats and as is usual at this time of year, dying fleas tried for that last bite on me. However, am now so itchy, I could claw my skin off and bites have a whole rash of little bumps around them. I am taking bicarbonate baths, using Antisan and germolene, trying hairdryer heat when I can’t bear the itch, but they do not seem to be getting any better. I’m wondering if the radiotherapy might have made my skin more susceptible? Am ladling on E45 cream too.
so, so, itchy!

@Topofthecliff thank you for the welcome. No I am yet to have the chat about pre chemo. I have a discussion with the consultant next week. Its so difficult for me because the whole moved to another town in the middle of all this. The move had been planned before the diagnosis etc. So now, I have to wait till I get my medical records all transfered to the new location which may take weeks.

@Chocolateismyfavourite I am glad you are no longer having the op. It seems a good decision as if it hasn't caused any problems then no need to have it. I have my fingers crossed for you.

On a lighter note, I have just returned from the park in our new town with the DCs, had ice cream and enjoyed the sun which was lovely. I hope you are having a nice evening.

@Podgedodge that sounds nasty- would antihistamine tablets help? I know we are warned about the sun, so possibly your skin is more sensitive? Dh has an insect bite zapper that gives mini static electric zap which helps?

Hi @Podgedodge hope the itchy spots have settled.

I am winding myself up to go for chemo no 2 this afternoon. The postman has just dropped off a parcel for me from Https:www.littlelifts.org.uk/ which is full of treats. It’s a charity that send nice things to folk having chemotherapy or radiotherapy for BC. There is cordial and chocolate and mindful crossword puzzles and lots more. You just have to apply online and attach some ID and proof of treatment.
On Sunday I had the Spikevax which was my 6th dose of Covid vaccine. It gave me a headache and a sore arm but okay otherwise. The industrial unit they use for the vaccines smelled strongly of slurry which was unsettling and very West Country.

Sending good luck to all having treatment and getting results this week

Top x

Good luck this afternoon, Top. I am now over a week out from my breast surgery. Still got my drain, and still a bit sore, but feeling good in myself - I walked for an hour in the sun with a friend this morning and went out for a nice coffee. I am now trying to do a bit of work, but driving myself mad plugging hypothetical pathology results into Predict. I know this is not helpful but can't quite stop myself.

Hi all, I hope we are all doing okay under the circumstances.

I just received news that the cancer I have is HER+ Positive which means I will need more treatment. I am beyond sad because the initial results was HER Negative but this has now changed. I don't even know how to feel anymore.

Can I ask please how you coped for those who had young DCs below 10? I have my partner but he works full time and i dont know how we will cope with school runs etc. We do need the money at this time. I have already hit the mark for no more sick pay having only worked for my currrent employer for only 1 year. I don't know, I am really confused and worried.

@Makemineadecafplease - I'm sorry you find yourself here but wanted to respond to your message. I'm not on this thread often but have just see that you have been diagnosed as her2+. I finished chemo for this about a year ago and immunotherapy in May. I was found to be her2+ from biopsies and then had chemo before surgery with radiotherapy afterwards. I had immunotherapy (Phesgo - herceptin/perjeta) as a thigh injection every 3 weeks. For me it was tough but all doable and I did work at stages at home at own pace though. Herceptin is a wonder drug and a very good therapeutic treatment.

My DC were 11 and 13 when I told them. Stuck to high level facts in a very positive tone. Tried as much as possible to carry on as normal. Eldest was badly affected initially. Very anxious They have had great pastoral support at school and a lot of friends who had been treated for cancer previously came forward and talked to them. They were surprised to hear that people close to us had had chemo without them knowing. We talk openly about it now and it has paved the way for many more 'life' conversations which I am not sure we would have had.

I am a year past chemo and doing well. It has changed me but not all in a bad way. I was always regarded as being straight talking but I am extremely straight talking now! I truly don't sweat the small stuff and it has strangely given me a renewed courage to face problems.

As everyone on this wonderful thread will attest, the point of diagnosis/ pathology results is bewildering and scary. Once you have a plan and can see a way forward it gets better. There are other lovely her2 positive ladies on here that will also offer advice. I found their wisdom and support invaluable.

Step away from Google. Breast cancer now, Macmillan and Maggies are all excellent sources of support. There are special services for children so seek them out if you think it would help. I wish you well x

Morning everyone - I gave myself a break from my anxiety googling last night and arranged to go to a pub quiz with DH and his friend. I felt a bit self-conscious in the pub with my drain under my top in a bag, but it was good to do something normal. And also we won - good to take some pleasure in the small stuff.

@Makemineadecafplease I'm sorry to hear this. I'm waiting for pathology results too at the moment, and am scared of my already not brilliant prognosis getting worse. One thing I'm finding helpful (some of the time) is something I saw on one of Liz O'Riordain's insta posts about prognosis. She was basically saying that she finds it helpful to think of her prognosis as 50/50 - either it comes back, or it doesn't come back, and she can't know which it's going to be. Her rationale for this is that even if you have only a 10% chance statistically of it coming back, that's at a population level - it doesn't actually tell you what is going to happen to you, and you could be one of the lucky ones, or one of the unlucky ones, and nobody knows. I can't quite decide how comforting I find that, but it's an interesting way of reframing it.

@JeanLannes thank you for replying. I do agree that once I have a plan. It may get easier. I am also glad to hear that you are feeling much better and braver. I hope to be like this one day.

I didn't want to tell the children initially but I guess I can't hide it now especially as I will be having chemotherapy. They knew I had some medical procedure (masectomy) but I did not want to cause any reason for concern as we are in a new town and them having to make new friends etc. I will look up any services that can provide some support.

Thanks @dotty2 , I do like the idea of thinking about the prognosis as a 50/50 but I am a very hopeful person and would rather reframe it as a 70/30 or even 80/20 possiblity of it coming back but i do get where you are coming from.😀. I can't believe you went out with drains in, I couldn't do anything after my surgery, I wanted them out as soon as possible but mine took 10 days as I had a double and the dressing on the left was a bit stubborn.😀

I wish you a very good prognosis report.

Hi everyone

Has anyone had lower back ache with chemo and/or after debulking surgery? I’m getting regular lower back ache since starting treatment but unsure if it’s menopause related! My last CT in august was clear but I am having a PET on Friday due to a leap in CA125 levels. Obviously I’m paranoid that every ache is spread.

Chemo 3 for me tomorrow, halfway through. Trying Abraxane this time. I am not looking forward to a week of pain again.

@AGreatUsername I had the lower back ache after my OC debulking surgery, in fact I had loads of aches generally for months. The CNS whom I see for my oral chemo says it takes a full year to recover fully from major surgery such as this so is to be expected. Hope your chemo goes well tomorrow.

@AGreatUsername
I had a full de-bulking - vertical incision - 8 yrs ago. My lower back has been a weak spot ever since. It's because your back muscles are taking on extra work to compensate for your abdominal muscles which have been split like a kipper. Particularly noticeable when standing still in a queue.

I did get back to normal, but it was a year before I could do a full art exhibition, say, without looking for something to sit on half-way round.

That was when I was 72. I've since had another vertical incision to remove a colon cancer - unconnected - 3 years ago and it's the same thing again. But you're much younger and I'm sure you'll be over it sooner. There are exercises that definitely help and one of those sausage cushions in the small of your back is good for sitting and driving.

Fingers crossed for your results. I know that Ca125 scores can be useful for some, but it's such a blunt instrument as a diagnostic tool and causes so much worry for many more.

Hi everyone, I hope you're all managing ok.
Took a few days to get my head around the end off last week, but I'm fine now. Thanks to those that replied to me. I'm glad I didn't have the surgery either.
Due to go in tomorrow for my first chemo. Feeling nervous. And I haven't seen anyone either. Was rung with the appointment from the oncologist nurse at the end of the week before last along with the picc line insertion appointment. And not heard anything since apart from all the heart stuff last week. The portal is showing the chemo app tomorrow and a consultation in October but nothing else, so I just rock up to the day unit ( I did ring and speak to the nurse) it's just I've seen a few of you saying you are on medication before your chemo and I'm not on anything or seem anyone so... Hoping all goes ok tomorrow x