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

1000 replies

Silkierabbit · 07/06/2022 20:42

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.

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AGreatUsername · 08/06/2022 14:14

Just had my pre admission call before the debulking surgery next Tuesday. They want me to go in the afternoon before so they can give me the pre op enema?! No one has mentioned this to me so it’s an unpleasant surprise 😅

What is an enema like? Is it something I can administer myself or do I have to suffer the indignity of them doing it? Am I going to be stuck on the grotty hospital toilet all night then?! I’ve just added emergency wet wipes to my shopping basket as I can only imagine how sore my already sore poor bottom will be.

mowly77 · 08/06/2022 14:21

Hi @Kittyshopping & sorry to hear about your liver met; although it does indeed sound “tiny”. I’m not very helpful with choice of surgery I’m afraid as I had keyhole to take ovaries & tubes out. I know a bit about ablation though. I would probably choose that. Wouldn’t it be great if surgeons actually recommended exactly what they think you should do? I always try and push them to answer: what would you do if it was you; your daughter; mother; sister etc?

But I was wondering if I could ask a question back: how did they find the met on your liver? How are they monitoring you post-bowel cancer? I haven’t had any MRIs etc & I wonder if they do different scans or blood tests.

Basically I’ve had one CT scan of chest in March and that’s it. I want to know how they’ll know if the cancer has spread to other parts of my body, in short.

Kittyshopping · 08/06/2022 14:30

Hi @mowly77 . I had a blood test 4 months after chemo stopped. They look for a rise in a substance called CEA. Mine was high and that led to a CT scan whereby they spotted the lesion. I have a different kind of cancer to you and I am told that it is very common to see bowel cancer spread to liver because of the blood supply arrangement. Different cancers have different protocols. My oncologist told me that the CEA level is not always a good indicator but it is where they start with monitoring bowel cancer. Also, you mention CT scanning. These use high doses of radiation and so I believe they do not like to perform them too frequently. I'm sure your team have you under the appropriate surveillance. Good luck X.

MadamWithoutAnOvary · 08/06/2022 14:48

Hello everyone,

Im a a previous poster using a new username that I’ll keep just for these threads. I’m quite sure though that there will be one or two posters who recognize me. I do lurk on the threads but it’s the recent increase in women posting after a diagnosis of OC that has drawn me back in to tell my story just in case it may help others.

In October 2020 during a routine well woman check up it was decided that I should have hysterectomy because of my very large fibroids that should have disappeared as I got older but never had. I was 62.

Two days later I was seeing the Dr who’d do my surgery and I could sense something was amiss during my ultrasound. After a few questions had been asked I knew I was in serious trouble and I was so scared I jumped off the table and tried to run out of the room with out anything on from the waste down. Thankfully the young registrar who was also there and who’d been in my daughters class at school 😂stopped me and I was persuaded back on to the table where I then decided they could continue my ultrasound but the drs couldn’t speak to each other about what they saw. I wanted know part of it 😳 I know now I was having the start of what people call a nervous breakdown and by the evening of that day I was under the care of the psychiatrists as well as the team who’d get to the bottom of the 6 kilo mass on my right ovary. How it had been missed on two previous ultrasounds in our poly clinic just a few days previously I’ll never know. But I do now understand that my mucinous tumor can evade transvaginal scans I’d had previously.

So long story short, two weeks later I had a complete staging and debulking and though I went into theatre with nothing much to concern the Drs, my Ca125 was only 50, I did end up with a diagnosis of stage 1a MOC.

I can recall breathing a sigh of relief after he diagnosis as I really did think ‘I’d gotten away with it’ because I didn’t even need chemotherapy but, as time has gone on I now know I hadn’t in fact gotten away with anything and that a stage 1a diagnosis can mean next to nothing in the grand scheme of things. Granted that women with this diagnosis do have a very good survival rate over 10 years but unfortunately those who do relapse don’t really have much of a chance at fighting a relapse as so little is known about these tumors and treatment options are extremely limited.

Its 19 months now since it all kicked off and my chance of a re-occurrence is currently at 60 percent till I complete two years post diagnosis then it goes down to 10 percent. God only know what the 60 percent actually means in real terms though because I was too scared to ask 🙈

Currently I have a check up every 6 months and I’m waiting for the results of the blood tests I had done on Sunday. I really don’t cope with the lead up to them or the days after and it then takes a week or to after that to get back on an even keel. Mentally/emotionally I am doing much better though and I’m now on a maintenance dose of anti anxiety medication rather than the stop an elephant in its tracks sized dose I was on before. It is thought I have PTSD and that will be investigated going forward because although I know I’m much better I also know I’m still not great when it matters - hospital visits. I also get quite anxious when my children and grandchildren have health problems. I did however manage to be my daughters birth partner when she had her second baby recently but I was really having to do lots of keeping calm along the way. Suffice to say that she didn’t know I was quit nervy at times but this was the 8th birth of a grandchild I’d been at and I certainly felt the difference.

I hope this post doesn’t make me come across as ridiculous because I’m not. I’m just a woman who’s OC journey was too much on top of a very hard decade and I had been left with no reserves to cope with it. In reality I’m living my best life, I have my very large family of children and grandchildren that keep me very busy, then there is my darling adult son who’s severely disabled and who lives with me and his team of carers. I also have my voluntary work and enough of everything else to fill my days in general. I’m happy.

Oh and I also travel, it’s something I started doing when my then marriage of 35 years broke down 12 years ago. I go all over the place and the furthest I’ve been is Alaska where I went whale watching. I also like Europe, Italy and Switzerland in particular and I’ve spent quite a lot of today choosing a random airport somewhere new to arrive into before making my way to the Uk by train just jumping off where ever I fancy along the way. It’s how I’m going to celebrate my two years in November when I join the 10 percent club.

Fantasea · 08/06/2022 17:43

@AGreatUsername having had both an enema and the pre-op bowel prep, I would take the enema every time. I had one when I was in hospital for an ascitic drain and got horrifically constipated. A nurse did it, you lay on your side and they squirt the liquid into your bottom which is really fast and then you have to hold it in for 15 minutes which is the difficult part. Then you will just 'empty out' and that's it, done! I had the pre-op bowel prep which I took at home the day before and had a miserable and utterly exhausting day and night, back and forwards to the loo and got so sore with all the wiping. Also, for me, one of the things which gave me enormous anxiety was having to be there at 7am on the day itself, I think being there the night before removes this and also allows you to concentrate on yourself more. The indignity part is a bit like childbirth, I just didn't care at that point. If you're sore already, sudocrem can really help and take some with you if you can.

AGreatUsername · 08/06/2022 17:57

@Fantasea thank you, that’s a real relief to be honest. My step sister had to have bowel prep last week for her colonoscopy and said it was horrific and she was on the loo for 2 days and very sore. So I’m glad it’s not quite that awful. I’ve just popped an anusol up in an effort to vanish any remaining piles just in case.

It really is so nice to read all these OC stories, it seems like a fairly rare one (especially in younger women like me, I’m only 36) and an area that is really not very easy to understand. Being told my ascitic cells look low grade has both worried and relieved me, less aggressive but harder to treat…win some lose some.

@mowly77 and @Silkierabbit , at my hospital we have ham, cheese, tuna, cheese and onion and ham and pickle I think. I had a cheese and onion after my drain, it is the nicest thing I’ve ever eaten. Although to be fair I think that was probably down to the 18 hour fast before that 😂 I was really impressed with the NHS food, there were 3/4 choices for each meal and the tea trolley came every hour or so, I was expecting worse.

MrsPnut · 08/06/2022 19:47

I’ve got another pre op appointment tomorrow for my examination under general anaesthetic in 2 weeks. I really am tired of all of this now but it should make certain that the problems are just late effects.

I had my chemo privately, so some at home and some at a private unit. My favourite at the unit was when lunch was scampi and chips. I also had lasagne, Spanish chicken, soup and sandwich etc. They used to come round and take your order and then deliver it at 12pm. They also made a great lemon and poppy seed cake that we used to get in the afternoon. I also had sandwiches, cake and yoghurt after my PICC line was put in and again after my port fitting. Much better than trying to beg for a yuk muller light yoghurt after my breast surgery at 9pm at night when I hadn’t eaten for 24 hours.

mowly77 · 08/06/2022 20:43

Man I am so jealous of all these food stories! Last time I was admitted I had boil in the bag cod n sauce thing with mash and frozen veg for lunch. It was actually fine & I was hungry. But the next day: exactly the same meal arrived … but greyer. Much greyer. It sent me over the edge … that & DP bringing me a vegan ‘egg’ sandwich from M&S at visiting time when I had specifically given him 3 other sandwich choices in order of preference including mmm cheese & onion, my go to.

But I got discharged the next night & had an amazing anchovy, caper & olive pizza on the way home & it was the best & most life-giving thing I had ever tasted.

Fantasea · 08/06/2022 21:05

@AGreatUsername I've just remembered something else. After my enema 'clear out' I felt so nervous of soiling the bed so hopefully asked the nurse for a 'nappy'. She gave me some huge stretchy knickers and a giant pad which weren't needed as I was so empty but gave me peace of mind to get some sleep. I have got bad piles from childbirth over 20 years ago and enormously aggravated by the ascites but the enema didn't affect them at all. One thing I wish I had taken with me for surgery was some peppermint oil. You will have a lot of wind in your bowels and when I asked for something for it, expecting some proper drugs on a surgical ward, they said to have a 'peppermint tea' and asked if I'd brought some tea bags with me, which of course I hadn't. The lady in the next bed had some peppermint oil which she shared with me and we got the hot water from the tea trolley when it came round. Seriously, the relief was immense but the wind takes a few days to proper work its way out.

AGreatUsername · 08/06/2022 21:37

My ex boss advised me re the peppermint. I have bought some teabags but they are GROSS. I managed a single sip of the one cup I tried. I’ll have to hold my nose and down it in hospital. Yuck.

twointhemorning · 08/06/2022 21:41

@AGreatUsername I had the pre op bowel prep and despite following instructions I'm sure it didn't work properly... I was also given an enema minutes before I was taken down to theatre, so I'm not sure that worked either! But my memory is hazy.

My debulking surgery was jointly carried out by gynae and colorectal surgeons and I had a bowel resection as well. Fortunately I didn't have to have a stoma bag.

I did have some post surgery complications so ended up in HDU.

Fantasea · 08/06/2022 22:03

@AGreatUsername the peppermint tea bags are revolting, don't take those. You need some peppermint oil which you put a few drops in hot water. You can buy it in a little bottle on Amazon. It tastes like toothpaste, not great but so much better than the teabag. It's also more 'powerful' and fast acting!

MadamWithoutAnOvary · 09/06/2022 06:36

Good morning everyone,

I thought I’d post some information about MOC (which really is the Cinderella of ovarian cancers) due to its rarity.

MOC is only seen in 3 - 5 percent of all ovarian cancers.

80 percent of MOC Tumours are secondaries from other cancers with the intestines usually being the primary source

Only 20 percent of MOC are primary tumours. This makes being able to find out very much about them extremely difficult.

MOC (primary) are usually discovered early due to the size the tumours can become. My own tumour weighed 6kgs

MOC tumours can be like a bag of mixed tricks with the tumours being made up of benign, borderline and cancerous parts.

MOC is not graded. It is instead said to be either an Expansile or Invasive pattern. Women who have the expansile invasion very rarely have a reoccurrence but it’s a different story for women who have the invasive pattern. The latter is what I have.

There is also something called a micro invasion and women who are diagnosed with a micro invasion also do very well.

Capsule - the state of the capsule is important with regards to the chance of a reoccurrence and even if you have an invasive pattern an intact capsule is good news. My capsule was intact.

Treatment - debulking is usually the only treatment required initially unless your staged at 1c upwards when a person will follow conventional treatment regimes for OC even though the chance of them working are said to be about 25%. However, some Drs now treat a reoccurrence in the same way they would treat gastro-intestinal cancers due to the similarities between them.

Worldwide there were approx 313,000 cases of OC diagnosed in 2020 and of that figure only between 2 and 3000 would have been primary MOC with about one third of that being invasive, so 700 - 1000 cases annually worldwide. It even makes studies very difficult and one of last ones attempted in the UK was abandoned due to the difficulty in accruing data - so its probably going to be a long time before much money is going to be/can even be attempted to be spent on treatment possibilities.

Stage 1a, I think I may have gotten away with this my arse. 🙈😝

Silkierabbit · 09/06/2022 08:04

Welcome Thereisonlyoneofme Hoping the treatment has worked and IOW is definitely overseas. Grin

Welcome Kitty Sorry to hear about liver met. I hope you can get good advice on best way forward. I would also push back to team.

Welcome back Madam Hope you can get to 2 years reoccurrence free.

Feeling rubbish yesterday, forgot to take my anti-sickness after Mon's chemo, took one yesterday evening and feeling better today. Bit of a crazy day yesterday half dead from chemo feeling about to be sick, DD had GSCE exam which was fine and I had gone through one poem with her and it was the 1 out of 18 that came up, and DS was reported missing from school and police called. I am fairly certain he was at school just secret squirrel at hiding but could have done without that. He is asd and enrichment week and he's mute and police were here trying to interview him. He left for school normal time and back normal time and only goes between here and school which is 5 mins walk.

Mowly I was checked for mets with a CT from the neck to the waist but I think they don't do them routinely, it was as I had bone pain, due to radiation risk. It was very thorough though and picked up about 8 issues, one mass which needed a further CT but then all given different explanations.

Love to everyone else. GCSE physics, oncology call, ESA call and Head of Stat Assessment today plus checking what silly activities boys are up to, that's Mr Floof and rabbit and DS.

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MadamWithoutAnOvary · 09/06/2022 08:40

Thank you Silkie. It’s much appreciated. Within the last hour I’ve had really good results. I can actually now feel a part of me that’s believing the 10 percent club is very much possible - it’s the first time it’s ever happened. My children are happy and said that feeling you have means so much to us Mama because it’s long overdue and it’s progress.

To celebrate Im going to go and watch two back to back films at the pictures today. It’s something else I like doing on my own and I’m often the only person watching the film. And I do laugh when one of the staff will open the door half way through the film and say - are you okay Mama, shall I bring you tea? It’s just the way it is where I live and one of the things that I love about it.

@thereisonlyoneofme I hope you have a lovely holiday and if you are ever looking for a traveling companion perhaps we could work something out together. And if you’d prefer to go solo it’s something I do all of the time and I’m happy to encourage you take the first step if you like.

I hope everyone has the best day possible.

Somuchgoo · 09/06/2022 08:54

I'm not even sure I belong here, but here goes. Its about my Toddler daughter, and I can't even answer the question 'is it cancer' with a simple answer 😂

She was diagnosed out of the blue with a brain tumour a few months ago. Blue lighted to hospital and emergency neurosurgery 20 hours later. A ridiculously complicated recovery (the highlight was her being diagnosed with bacterial meningitis part way through a follow up surgery) and nearly 2 months in hospital, 7 surgeries (some minor thankfully) and we are back home now. She's recovering well, had learned to walk again etc (she's missing the bit of her brain for balance) but struggles with fatigue unsurprisingly.

The good news is it's 'benign' a grade 1 tumor, a pilocytic astrocytoma, which really is great news. But being in the brain it doesn't feel very benign. It would still have killed her. They didn't manage to get all of it, so it's scans every 6 months with more surgery, chemo or radiotherapy if it grows again (which statistically it will) until she's an adult.

Her prognosis is really good, but obviously not all make it, and some never require further treatment but with others involve repeated brain surgeries and most of their childhood in permanent chemo.

So for something that we are told isn't cancerous we are under long term oncology care at 2 hospitals etc. I usually say to people that it's a non aggressive cancer, as they think it's just like a wart or something if I say benign.

So I'm not sure if this thread is for us or not, but hello anyway.

MadamWithoutAnOvary · 09/06/2022 09:06

Silkie, I hope your feeling somewhat better today. I noticed that we both have a son in common. My both is now in his 30’s and was mute till he was about 8. He does have some language now but it’s functional although his accompanying Tourette’s that he was diagnosed with in his teens means he’s a dab hand at swearing. Not that it’s always Tourette’s swearing but we just say it is when we have to. And no, we never tell him not to swear when he’s doing it deliberately because he was without any language at all for a very long time and we’ll never go down the road of silencing him even if he’s swearing.

Hes not been well at all recently and it seems Bi polar disorder will now be added to his multiple DX. It’s awful and one of the things he did during a manic stage was get up in the middle of the night and disappear for two hours despite the house and garden been like Fort Knox. In truth we didn’t even know he’d gone till he rang the doorbell to get back in. He even managed to get past the carer who was on night shift and I didn’t even hear him passing my bedroom door - our rooms are right next to each other and my doors never closed. To this day we don’t really know where he went as like your son he can’t explain but something was said about sweets so I’m assuming he tried to get to the nearest petrol station. But god only knows how he wasn’t killed on the road whist out and of course the thought of all the what ifs are terrifying and not just because the police here are armed and he would have fought in fear if anyone had approached him. He’s 2-1 care around the clock and can’t even be let out the gate alone. It’s bloody terrifying. Isn’t it. And truth be told I’m glad he got into in his 30’s before he sneaked out to go on some kind of bender. 😂❤️

Do you think it was enrichment week and the changes it brought to your boys routine that made him need to hunker down? I really hope he’s feeling better today.

JellyBellyNelly · 09/06/2022 09:14

Somuchgoo, of course you’re welcome even though every oneof us would much rather you didn’t have to join us.

it can be really confusing when people are told something is benign or non aggressive but the protocol is usually the same as when the diagnosis is different - initial follow up for 5 years. Your wee girl is obviously in very good hands and receiving good care and I hope this helps you even a wee bit.

Silkierabbit · 09/06/2022 09:16

Thats great news Madam glad to hear some light at the end of a dark tunnel.

Welcome Somuchgoo I am so very sorry about your daughter, thats so sad to have such a little child go through that and must be terrifying as a parent. Sending love and hugs. This is a thread for people with cancer but you are more than welcome to join us and please chat away, and we will give you love and support.

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Silkierabbit · 09/06/2022 09:25

Thanks Madam Just cross posted. Sorry your son was mute and disappeared too, thankfully DS has stayed here today. Really hoping its enrichment week as just one more day of that, high chance it is. I think he was just at school hiding all day but 3 staff and police searched and they reviewed 1.5 hours cctv and he was not entering so they think not there all day but was away from here school hours in uniform as is a creature of habit and he cant use a bus etc. I think he was at school, he knows exact location cameras can see to the mm as he is asd but need to keep a very careful eye on him until can be more certain he did not go to a secret location. Would be totally out of character as he is scared of everything abd if just avoiding school would not have left. Thanks so much.

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thereisonlyoneofme · 09/06/2022 10:52

MadamwithoutanOvary Thanks for the offer! i I did book to go to Norway alone before diagnosis but chickened out at the last moment ! I find it quite hard filling time when I go alone as I dont do shopping ! I prefer short trips as dont like putting my dog in kennels for long. MInd you with the problems with the airlines at the moment its probably best to stay in the country.

Silkierabbit · 09/06/2022 15:20

Yes I was feeling a bit sad about not going abroad this summer but when you see all the chaos at the airports / package holidays it does not look too relaxing.

We went to Norway a couple of years ago and it was very beautiful but prices were crazy, like £30 for a burger and chips in a very average cafe.

Very hectic day so far, its silly season with all the boys, DS, kitten and rabbit. Had to make sure DS stayed home as he's a flight risk at school with enrichment week and school needed police to track him yesterday though police did not find him either until he arrived back here, then kitten keeps clawing up the doorframe to get by rabbit and jumping over rabbit who starts leaping everywhere as well. Then DD had a physics exam and is obsessed with kitten and need to remind her to go to school to do her GCSE. Then played chase the oncologist, an hour of trying to track them down but then had 10am call at 11am and agreed will try to do the 3 remaining weekly chemos to take up to 12 though oncologist said its OK if can't just better if can. She will see me in September for 10 years of Tamoxifen, or 5 maybe and review. Radio is being arranges and they think maybe the 1 week intense but will see, they have scheduled that call during a chemo so will need to rearrange that plus they have booked me in for 13 chemos (lucky me) and last one is a mistake.

Then 11.10am had ESA work capability interview, not supposed to have that being on chemo but they called and said now in support group and have put me in it from 5/4 to Nov 23. No idea why starts on 5/4 (would guess tax year) but good goes to Nov 23 and nothing required before then, they said I can just rest until then. Sounds good to me. Then Mr Floof was twice in with rabbit and silly season in there. At that point I had a pimms and lemonade. I don't normally drink but still had school Head, senco and LA to deal with in afternoon thankfully now done.

Mr Floof has just discovered whilst trying to mug me for food that ipads that are touchscreen are also lick screen - you can change to different things by licking the screen.

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HerbalRefreshment · 09/06/2022 17:33

Popping in to placemark on the new thread....

Stage IV de novo breast cancer with mets to bones - diagnosed at 42 but am about 2.5 years out now. I did the palbo/letrozole thing for the first two years until that started to fail and I got my primary and axillary nodes removed and some vertebrae radiated over the winter. Started on olaparib (BRCA1+) a few months ago and have finally settled into it and am doing well, although the fatigue is bothering a bit (but I HAVE been on the go for the last three weeks travelling long haul and entertaining visiting family)

Recent scans were great but apparently I have lot of gallstones and if they kick off again the whole shebang needs to come out. Great - now I have a generalized fear of cheese and greasy, high fat food! I guess thats been somewhat helpful as Ive been dropping a little bit of weight with each month - I hope to get back to my diagnosis weight by end of summer!

Silkierabbit · 09/06/2022 20:00

Welcome Herbal Good to hear recent scans were great.

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MothralovesGojira · 09/06/2022 21:46

Hi everyone - I'm Mothra and aged 54.
I have BC and a rather aggressive HER2+ tumour which was removed via a lumpectomy in Feb and I started Herceptin and TC chemo early April.

Thank you @Silkierabbit for starting a new thread and you do sound like you're having a bit of a time of it. I have two ND adult DC, both with ADHD and ASD, and the younger one is also a Type 1 Diabetic who at 18 is still unable to take care of themselves so really can't be called an adult. I also had to deal with them disappearing at school but thankfully they were usually hiding in a toilet somewhere on campus! We have a special needs cat called Alfie who if he had a rabbit and chickens to play with would also be climbing door frames to get at them but he's a 6.5kg bruiser so his objective probably wouldn't be 'playtime'. Sadly he has to have a special diet but he loves bread and pizza and is often found breaking in to our neighbours food recycling bins to get at leftovers or mugging pigeons for bread crusts - the fluffy bugger!

I'm now going to make you horribly jealous @mowly77 . In our chemo unit we have a trolley come round every hour stacked full of free fresh snacks such as sandwiches, crisps and biscuits (a lot of it M&S) with a varied choice of hot beverages such as tea, coffee and a good herbal tea selection. Sadly I am unable to partake of any food because I'm very intolerant to wheat, rice and dairy and I'm not allowed tea or coffee during chemo due to my weedy veins but I've been told that it is all very lovely. I never feel hungry during chemo anyway so I sit with my water bottle because I drink herbal tea at home so get fed up with yet more tea. I just give those eating the secret stink eye when their not looking!

I had my gallbladder removed @HerbalRefreshment . Mine was stuffed full of stones and on the verge of splitting so I had mine taken out via keyhole surgery the same week as I saw the consultant who saw me on a Tuesday said what are you doing this Thursday? I spent the four months prior living on plain jacket potatoes, dry fat free cereal, tuna, plain prawns, clear juices, black coffee, water, plain veg, grapes and apples after being rushed to hospital in an ambulance a month after the birth of my youngest DC. My crime was having eaten a plate of sausage and mash but the morphine was lovely! The surgery was straightforward and successful and I was back to normal eating after about a month so if your gallbladder is giving you pain then it's best out.

I had an oncology appointment yesterday and I'm definitely having my last TC cycle tomorrow but will continue to have Herceptin every three weeks until October so my PICC line will have to stay in until then. I also have awful anaemia so I'm looking at either a transfusion or more bone marrow stimulation injections tomorrow but the oncologist was unsure until further blood results had come back. The PICC line staying in until October will be an issue because my boss isn't keen to have me returning to work with it in because about 50% of my job is heavy lifting and using machinery but I could do the other stuff. So I'm hoping that they'll agree light duties because my SSP will run out by September. My boss is lovely and I'm planning on bribing them with half of my M&S Summer Beauty Bag!
I'm also getting my referral for a wig (yay!). Last night my brother video called me and I answered forgetting that I didn't have a cap on. As soon as I answered he gave a loud terrified screech and cut the call off because I do currently look like a witch from the film adaptation Roald Dahl's The Witches (the Angelica Houston one) and my face was really close to the screen so he was shocked to see a spotty hairless 'hag' looking at him! It was terrifyingly hilarious but he got over it but was upset as he thought I was upset - which I wasn't but his screech was truly high pitched and rather girly.
The oncologist is also contacting radiotherapy to get them to book me in but I'm still very, very iffy about it.

On the good news front, we're off to London in a few weeks to see the Hellamega Tour and 21 Pilots so hoping that the trains are ok. DP has also booked us a short holiday to Kent in August and has upgraded us to superior rooms as a treat. I'm looking forward to it as it goes some way to making up for what I've missed. I am missing Billie Eilish this weekend and Imagine Dragons next weekend. Hopefully all other gigs will be doable once I'm just on Herceptin as I've got 10 gigs booked between end of June and December plus I've got my eye on some others including the Foo's Taylor Hawkins Tribute gig in September and some local stuff. My brother misses his moshing partner really badly so I'm keen to get back into live music again although DP took me out for dinner and to see a Kate Bush tribute act last week which was lovely if rather sedate!

Best wishes and love to everyone here!

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