Wiebke's Journey

I'm glad to hear that you are making such good progress on the road to recovery and a new normal ⭐️👏 You'll enjoy the chocolate balls etc all the more for the extra effort you've made in order to make them this year. 🎄

Your accident seems to have had a positive consequence for my family quite by chance - the evening I brought Macsen and Manon here and got them all set up in our dining room, my OH asked if he could gave a cuddle with the piggies. Manon was too scared - she didn't come out of her covered hidey when I was in the room for 2 days - but Macsen was already exploring and looking out of the cage, so I let hubby have a brief lap time with veg bribe. Afterwards as I put Macsen back, hubby leant on the end of our dining table - which promptly collapsed beneath him 😯 Minor disaster - a month before Christmas and no dining table! Fortunately we had had the table and its matching sideboard cleaned and French polished 2 years ago, so my hubby called the guy and asked if he could possibly repair the table in time for Christmas. As he could, we asked him also to take a roll-top desk, part of the same set, which also needed repairs. To take the desk he needed its drawers emptied, and in the process we opened some hidden cupboards in the back- and found two family games which we had been missing for 2 years! Both games we really wanted to play but aren't available any more 😕 Christmas with family and friends will be so much more fun now we have those games back in use 😁🫠
 
Qualcast&Flymo said:
I'm glad to hear that you are making such good progress on the road to recovery and a new normal ⭐️👏 You'll enjoy the chocolate balls etc all the more for the extra effort you've made in order to make them this year. 🎄

Your accident seems to have had a positive consequence for my family quite by chance - the evening I brought Macsen and Manon here and got them all set up in our dining room, my OH asked if he could gave a cuddle with the piggies. Manon was too scared - she didn't come out of her covered hidey when I was in the room for 2 days - but Macsen was already exploring and looking out of the cage, so I let hubby have a brief lap time with veg bribe. Afterwards as I put Macsen back, hubby leant on the end of our dining table - which promptly collapsed beneath him 😯 Minor disaster - a month before Christmas and no dining table! Fortunately we had had the table and its matching sideboard cleaned and French polished 2 years ago, so my hubby called the guy and asked if he could possibly repair the table in time for Christmas. As he could, we asked him also to take a roll-top desk, part of the same set, which also needed repairs. To take the desk he needed its drawers emptied, and in the process we opened some hidden cupboards in the back- and found two family games which we had been missing for 2 years! Both games we really wanted to play but aren't available any more 😕 Christmas with family and friends will be so much more fun now we have those games back in use 😁🫠
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Have a great Christmas and enjoy your games with a wheeking backdrop...
 
Mother Hubbard said:
Oh my goodness, wow. I’m just speechless reading your story Wiebke - talk about being bowled over. So much to take in.
You are so incredibly strong and an amazing woman. I just have no words….ok a few.
Amazing, strong, brave and funny. I just want to take all your woes away x
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Thank you. In order to be all that, I am also relying heavily on this wonderful community to give me the backing, the boosts, the company and the occupation whenever and in which form I need it. It has already done so over the last couple of years when I had to learn to live with Long Covid symptoms and constant exhaustion.

Thankfully, I have a sense for the absurd; it's helped me in hospital, too. Quite often you can either laugh or cry. If possible, I prefer to laugh... :)
 
No baking today for me and a change of plans for today...

In the course of a medications review/prescriptions order for my ongoing medical needs on Friday afternoon I also pushed for being put on the register of vulnerable people entitled to an annual Covid jab, considering I have an inoperable cancerous problem now that I am in the system for it.

Since I never got my third jab after my NHS account disappeared in a black hole for 9 months after the first jab (which incidentally coincided with when I had a swollen lymph node for the first time without being able to anything about) and nobody seemed to be able or interested in getting my account out again; and then developed Long Covid in the wake of having Covid quite badly a year later. This has unfortunately really got to me and has really impacted on how secure I feel when out socialising (not at all...)

Hub did find a walk-in pharmacy still offering jabs not too far away so we went yesterday for me to get both Covid and flu (which I had not been well enough to pick up just before my hospitalisation). I am thankfully doing pretty good today but am taking it easy instead so I am back on board again for Christmas tomorrow. Only one very mildly sore arm and no shivers at all...

As far as I am concerned: It is the best Christmas present I could have got since it finally gives me back my peace of mind and my freedom of socialising and being out and about.

It also means that hub and I can now go out for his birthday lunch next Monday without me having to fret about picking up any bugs. Hub has had a hard time with his birthday dinners during the pandemic, so it is a real moral boost for him, too. He's still very tired from all the massive hubbub after my fall and rather shaken with the diagnosis, poor man. He is a worrier... so he truly deserves some pampering and cheering up, too!

Which is now my next milestone focus: Getting out and about and starting to have more of a life again as my hip is healing well. I will still need crutches, including for my wobbles, but my mobility is going to improve with every passing week now. Several social pre-Christmas things have been put back for my sake until January when I can be there to enjoy them as well. :)
 
The Covid and flu jabs are truly the best Christmas presents you could have asked for and I’m so pleased you will now feel safer going out and socialising again without fretting 😊

I hope you enjoy Davids birthday meal out on Monday and have a lovely Christmas 😊

I’m glad you’re not getting any nasty side effects from the jabs x
 
I use the perks as my 'lighthouses' to get me through the next dark patch or challenge. They provide my focus as to where to aim for or what to hang onto if needed. If it is something I really want, then I have more motivation to push or I can get a little firmer grip on myself if the going gets tough. ;)
 
Good for you Wiebke ! Being proactive and getting protected
There is so much flu about !
Take care and I’m in admiration with your positivity 🥰
 
I haven't been feeling too great over Christmas with my double jab and getting the backlash from pushing things as hard as I dared to get settled into my new disabled life as quickly as possible; but it has been worth it.

We have been able to have a quiet but 'normal' Christmas with indulging in our usual home-cooked festive menu which contains both personal and shared favourites of ours and is the result of major negotiations over many years...

And we have been able to venture out to a very nice pub lunch on hub's birthday without me having to worry about Covid and flu for the first time since 2021. Incidentally, we had some sunshine to brighten up our little jaunt.
I've also managed to make two more Christmas biscuit traybakes; one for hub's favourite nut and fruit mix and my own Basel leckerli (a 600 years old local speciality with kirsch) for myself, which is currently drying on for baking and icing tonight.

As my 6 weeks home care cover is coming towards its end, I have been concentrating on becoming efficient in looking after myself without needing any supervision and doing all the little jobs by myself. I still can't bend down, still have the 'wobbles' from my brain tumours (pre-cancerous or not; Super Mario keeps on firing away if much more under control) and I am still very weak and not able to make it through a whole day yet.
My sleeping is still very minimal due to my steroids which are needed to keep the swelling in my brain down. But I can gradually manage that bit more with every passing day...
It is finding ways on how I can stabilise myself enough to do things that need two hands without risking another fall for all the little things that come up, not so much the bigger jobs now. Next week I want to start cooking properly with my favourite chunky winter veg soups to get back into the swing.

Poor hub still has to do the majority of the laundry, washing up and any cooking with his own bad arthritic knee so he has his own limits and is feeling very exhausted. He is also still grappling very much with his own worries and the shock diagnosis. But we have now got a daily routine and can manage. That is the main thing. The initial big chaos is over.

I am still very much processing things myself during my long, often sleepless nights. When I was dumped back home early without anything in place at home (A&E were totally swamped with emergency flu and Covid that weekend), I wasn't really aware just how physically exhausted and how close to a total burnout from all the adrenaline/steroid/sensory overload pressure I actually initially was. The first couple of weeks back home are very much still just a blur...


What I do want to however say, and haven't done so far is how much the NHS staff on the ground have impressed me with their compassion and dedication; both the day crews in managing 'Ambush Alley' on a ward with bedbound patients with lots of little but very irritating needs for stuff just out of their reach or help with physical tasks. Because of my scrambled left bodyside I was very clumsy and dropped/spilled loads in trying to get my fine motoric back especially into my left hand. Plus moving everything back within my reach after making up my bed.
My toilet back and slippers ending up neatly tucked away on top of my little cupboard as far from the bed as possible where I so cannot get at and untangling the nurses call button from the bed frame so it fell again to the floor were particular bugbears of mine... It did get a bit autistically obsessive over it at times!

But even more so I have been truly impressed by the night crew and how genuinely compassionate and kind they are with people at their most vulnerable - often confused about where they are, without their hearing aids, embarrassed about having a leak and in major pain. They are clearly understaffed and have to cover several wards so they are not always around, depending on several incidents happening at once. They also have more limited access to pain meds when dealing with bone breaks that need to heal naturally where any wrong movement can mean that the next day is spent in a morphine haze again. Those blinding moments of deep, total understanding about how the depth of our need to support and help runs across cultures and ages and it connects us on levels that do not require talking will stay with me forever. :(
 
I am pleased you managed to have a good Christmas having your traditional menu. I am sorry to hear you are suffering burn out now. I wish I lived nearer so I could help out with piggy washing. I am sure you and your lovely supportive hubby will find ways round the problems of housework, you have both done so well already, it takes time to adapt. I hope you can rest now as much as you need and not have to push your body too hard.
 
piggieminder said:
I am pleased you managed to have a good Christmas having your traditional menu. I am sorry to hear you are suffering burn out now. I wish I lived nearer so I could help out with piggy washing. I am sure you and your lovely supportive hubby will find ways round the problems of housework, you have both done so well already, it takes time to adapt. I hope you can rest now as much as you need and not have to push your body too hard.
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Poor hub has been doing all the piggy washing!

It has taken me the first couple of weeks at home with mainly bed rest, drinking loads of water to help the body flush out all those medical and stress related chemicals as quickly as possible and getting up every few hours shortly just to keep the body moving before I felt that my nose was starting to poke over the water line again. :(

Anyway, tomorrow is the last day I am having a carer coming round but I have achieved my aim of being able to do all the jobs safely they have been doing for me within the allotted 6 weeks time frame. So, yes, I continue to remain on course... :)

I am keeping all the extra mobility aids because of my brain tumour related wobbles which are going to remain with me until and during any cancer treatment. Brain cancer waiting lists seem to be some of the longer ones, so I am not expecting miracles. I can live with my current state, which has still got quite a lot wiggle room for gradual improvement over the coming weeks so I am focussing on all the little things that I can make a positive change with and take the rest as and when it happens.

Anyway, I have also requested to look into an outdoors walker for me because of my balance issues rather than me using crutches for moving longer distances as you'd do with a more traditional hip replacement. Crutches are fine for short distances but they are not totally safe with my really bad wobbles which get worse with any exertion or stress... :(

Because I am dealing with two separate mobility issues/disabilities, my challenges and needs have differed and continue to differ somewhat from a classic full hip replacement case. I just have to keep on with working out practical solutions for as many things as possible now and will slowly become possible as my hip keep continues to heal without overtaxing myself. The biggest restriction is not being able to bend or kneel down for the two of us.

The occupational health lady who came today has left me with plenty of leg strenghtening exercises so that is my next focus. Not overdoing them but keeping beavering away... The more quality of life I can regain before any treatment starts the better.
 
You’re doing amazing Wiebke - I’m sure you have many moments that get you down but your positivity overcomes those and shines thru in your posts ❤️
We are all with you on your journey and if healing could work via TGPF you’d be running a marathon by now 🥰
You are an inspiration to us all
Sending much love for this continuing journey
 
I can recommend a forearm support rollator. Better than a classic one as you can fully take the strain off of hips/pelvis/back and helpful with balance/coordination issues too. Look on the mobility plus website, if you declare a medical issue they (and other items) are VAT exempt too.
 
It's been a while since I updated but January has been mainly about waiting for my biopsy results, being safe in my own body care before the 6 weeks carer visits stopped in early January (aim achieved) and concentrating on my new leg muscle building exercises, which started once the bone had knitted and healed enough.

As of today, I am no longer in need of regular physio visits, either, but I have been left with some stretch bands to continue and push further. I've been far too much of an overflyer again (at least cheering up my physio lady no end) - but mobility and stamina are crucial for my own quality of life and also for any future cancer treatment, so I have all the motivation to push it enough that my hip is always a little achy (and getting pampered with a warm snugglesafe during a lie down) but not so much I that I need extra painkillers. Mostly, those episodes have been due to making instinctive movements for which my hip was not quite ready yet but the new metal ball is now knitted in enough for it to be increasingly less of problem. I am looking forward to when I can sleep on my left side again as well and can get into bed normally with using my left hip...

There has been the inevitable backlash from getting our new life set up in time for Christmas and both hub and I have had some not so good days as result.
The longer term side effects from taking reduced steroids have kicked in fully now; my 'wobbles' (balance issues) are still very much around and need to be accommodated; they can range from barely there to really bad, depending on how active I am and whether I have had a good rest or not. I am still very much struggling with my
very erratic and too little sleep and my weight has truly ballooned. I still can't get through the day without at least one lie down and rest from the wobbles that hit as soon as I am upright, whether that is sitting or standing. :(

My Zimmer frames are now mainly there for the really bad wobbles or for ferrying stuff around the house. Otherwise I feel rather like a monkey moving from branch to branch with using any spot I can hold onto while moving around the house and wedging my body against a solid surface for any two-handed jobs I cannot sit down for. But I am back to cooking more (easy recipe batch) dinners during the week and spot cleaning kitchen and bathrooms as and when I have some spare energy.
Crouching and kneeling are still very much out of my reach; I haven't yet got the strength to get back up without hurting my hip. I need to crack that one in the coming weeks before my local cage cleaning lady is going on holiday next month. Another motivation to keeping strengthening my thighs and other leg muscles.
Unlike most people I am dealing with a mix of a clean break/healthy hip operation recovery, brain cancer/steroid balance issues and Long Covid exhaustion symptoms, so my challenges are rather different to most patients.

But my hip is healing well. Since last week (after a delivery hiccup) I now have got my rollator - we needed an emergency session as it arrived on the morning of my biopsy appointment to adjust it and explain its use. The walker is actually less for my hip than for my balance because I wobble with my crutches just as much if I have to stand for too long but I have much more speed and stability with a rollator.

Yesterday, I have managed to walk myself home the last half mile under my own steam and only started to struggle a bit on the last 50-100 yard - much later and less than expected. But my legs today are on the wobbly side but they are not stiff or painful, so I haven't really overdone it. I am pretty proud and hope that I can get up to a mile by the end of the month so we can have 'normal' outings and excursions again that are not just to a pub or garden centre car park for a meal or piece of cake... Being mostly housebound is starting to wear rather thin.


The results from the biopsy have finally come in. The cancer is some kind of okkult melanoma - 'okkult' means that I actually don't have acute skin cancer (none was found during a whole body examination last week). It can be that the original cancer was got on top of by my immune system quite some time ago (but only after seeding) or that there quite simply isn't any. According to the special nurse, it does happen.

As I have known from the start, the various lumps I have only are all secondary cancer in the form of a lump in one groin lymph node, in my right side brain and in the skull. Not having the original cancer is going to make targeting the best possible chemo that bit more difficult.

My next appointment is not until the end of March, so that is another two months of waiting with more of the same (including the same level and cocktail of meds) as I am doing now. I am going to focus on getting my normal life back as much as possible and get as fit as I can because the latter is also needed for how strong any chemo can be.
 
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💓 get better soon.

My mom had cancer and she went on a scientifically not proven diet of zero sugar. Wish she could have enjoyed some tasty food instead of putting herself on that strict diet.
 
Sending love Wiebke, you are such a special lady with such spirit and determination x x
 
That's great progress 👏 You'll get there, "Per ardua ad astra" as the RAF motto has it. Hope they can find the right drugs etc to keep Super Mario and the wobbles down and ease the other side effects of the tumours and other meds. Sending healing vibes 💓 💗🙏
 
Keep on going. I'm glad you're benefiting from the rollator, is it the low one or the forearm support you've got?
 
fluffysal said:
Keep on going. I'm glad you're benefiting from the rollator, is it the low one or the forearm support you've got?
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It is the low one for occasional outings and hospital appointments which I can easily lift in and out of the boot myself.
Our main groceries shopping is done via click & collect; it is a lot less stressful and we have more of a chance of actually coming home with everything we really want and need, to be honest.
Hub is struggling with a bad knee himself, so we are not doing a lot of walking. ;)

The wobbles will hopefully disappear again in the wake of any chemo and steroids. I should be regaining the leg strength to not need any actual body/arm support from the rollator in the coming weeks as my hip continues to heal and my body itself is getting back to its normal mobility and speed.

The rollator is in my case just needed for having something to hold onto whenever I my internal boat hits choppy waters and to prevent me from suddenly pitching forward or sidewards while I am walking around in the open.
 
Just got a letter that I have been added to the waiting list of the Clinical Health Psychology Department for therapy support for my cancer treatment. I was offered the option when I was told I had a brain tumour. Good to know that it is being lined up now.

As a survivor, I may be mentally fairly resilient but I am certainly going to make use of any additional professional support to get through a very difficult time as best as possible. This is not something I am planning to totally tough out all on my own just for the sake of it, especially as I am carrying others emotionally who will be rather affected by me needing to look after myself first and foremost.
 
Wow, so much in your update there @Wiebke. Good to hear your physical recovery from surgery is going so well and you’ve managed to master many daily activities again like cooking & spot cleaning etc. Sorry to hear that your primary hasn’t been located but good to hear that they are planning the treatment for the secondaries. It always seems to take ages when they are making plans in slightly unusual cases because of the need for the multidisciplinary team approach and their meetings which may need to be regional rather than local. It’s also reassuring to hear that you’ve been referred to the psychology department for support. I wonder whether your unit will also have access to holistic/complementary therapies that they can also offer you to help relieve your stress and cope with any unwanted side-effects from the treatment that is still to come. Be sure to grab any offer for extra supportwith both hands.
You are doing so brilliantly well.
 
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