Another day, another blog post. Time for reminasences, time for remorse. Remorse that I didn't spend more time with Olga when we were both well. Missed opportunities. Not enough gardening together, not enough walking together and other small things we could do but didn't value too much when they were available. Brain tumor was an excuse not spend time together. At least now it is time to tell about my feelings what I usually avoided doing before or just was ambarassed to show real myself. Now I worry only about not saying often enough to Olga how much I love her and eventually I hope I deserve her.
Yesterday our GP called with the welcome news that between my last two scans there had not been any change. No growth. We will still receive visits from carers. We will have to change to a cheaper care agency. From there on we would have to pay for visits of carers, I will still need daily visits because I will be bed bound 24 hours a day.
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Today, we learned that my case for home nursing care will no longer qualify for NHS funding. If we are going to continue with the same NHS paid carers it will cost 115 pounds a day. It is with Olga's assistance twice a day. Or 138 with complete care from care service. It is crazy. We are trying to review our schedule of care to reduce these numbers. Unfortunately our friend carer hasn't returned still from Ukraine where she went because of family matters.
A visit from my physio today. She said there is nothing she can give me that can help me to get on my feet again. So I'm looking to being bed bound (hoisted) for the rest of my life. Rather depressed about this.
Our GP droped in to see how I'm doing. The experiment with increasing of my steroid dose to 8mg had not produced hoped for improvement of mobility. Possibly it has made things worth. So we are goinbg down to 6mg.
Spent 10 days in the new Cockermouth comunity hospital. Doctors wanted to see if they could improve my mobility by changing my dose of medication. Increase of steroids to 8 mg, they were also concerned about Olga and I trying to cope without any help.They would not ley me return home until they are satisfied with conditions at home. So our front room had to become a bedroom complete with hospital bed on loan from the NHS. We also have a hoist for moving me around. Their intention is to manage my simtoms to make life as comfortable as possible. They do not advise further treatment or operation. they are afraid treatment may make things worth then they are. So for the present I will be bed fast invalid.
A busy day- It seemed as if every occupational therap;ist in Cumbria was visiting our house bringing items of equipment to help mestand up,andturn around. Olga spotted ourGP walking up the drive. She brought new informationabout my recent or MRIscan which was not the same as we had been led to believe. I Mytumour has started regrowing from theoriginal site and is now bigger than it wasoriginally. We will have to wait fo rthe multidisciplinary team to come up with further treatment options
M eanwhile we must wait and see. we didn'tget much sleep last night.
This morning phone call from our GP nwith news of yesterday's MRI scan resultsThe results show some changes in the region where the tumour was removed but nothing is pressing on the brain which is good news we will have to wait for the specialist doctors to receive the fullresults.
I must be reaching the last stages of this illness I say that based on the rate of deterioration of my strength and mobilityMoving from one place to another involves a series of tiring and stressful hops I could could avoid that by staying in bed but during the day I prefer to go downstairs .I pee in a bottle to avoid a move to the bathroom. Time passes pleasantly listening to music or watching TV I'm not ready to give up the fight yet my next goal will be to try to survive until my next birthday on May 14
Returning to bed after trip to the bathroom I lost my ballance and fell on the floor. Once there I had not enough strength to get up again. Olga called the emmergency service. After an hour and a half the first responce had arrived and soon got me on my feet again. I can't help wandering if this is a the beginning of the end and I will progressively find it more and more difficult to do one things after another. Using the computer is impossible even with voice recognition software (Olga is typing it for me). We wandered if weakness in my legs and arms is a side effect of steroid medication. Our GP doesn't think so. She thinks the simptoms I'm getting may mean my tumour is growing back again. We won't know untill I have a new MRI scan. So we are anxiously awaiting an appointment.
I never imagined that my brain tumour would have such effect on my mobility. I always thought I would be able to pull myself up and down the stairs as long as I could grab banister rails. That as it has turned out prooved impossible, so we have had to install a stairlift. Supprisingly there were several firms that could do that for us even here in the back of nowhere. In the end we went for firm that could install one quickest, which turned out to be Acorn. I was impressed how quickly it was installed. The installer rang the door bell at 9 o'clock and by 11:30 I was taking my first ride up the staircase. It was not a cheap solution but cheaper than moving to a bungalow.
neOne of the things the oncologist mentionedto us was one of the side effects of dexamethasone is making bones brittleso he advised us to not to do anything that had a risk of falling and causing a fracture. We were trying to reduce the dose of steroid. I had taken 2.5mg, I noticed my vision was a bit more out of focus than usual and I felt a bit unstedy on my feet. So I fell down on the sitting room carpet.Olga had to go snd get a helpful neighbor to help me get to my feet - at 100kg I'm too heavy for her to lift! \ortunately no harm done.
Oncologist said there is no set dose of dex that is right for everybody as everyone is different. so I have to decide what is the right dose for me. looks like 2.5 mg is not enough for me
apologies for the typos and lackof punctuationI am still struggling with the computer. someone has suggested voice activationsoftware but i don't know of any. my laguage tends to get a bit bluewhe n using the computer do i'm not sure it would be s good idea!
I am almost completely disabled now. I can barely walk at all. It was a struggle to get between the car and the door. It is not for lack of strength.My balance is so poor that I can barely stand unsupported.I think this is partly a balance issue and due to the problems with my vision which is unstable and confused. so it feels as if myhead is spinning. All those years in my youth when I was a freelance beer tester have not helped me cope with this at all.
. I apologize for the typos but using the keyboard is now almost impossible, as is any kind of work that involves handling small parts. SoI cannot do most the activities with which I used to pass the time when I was well. It is very frustrating.
I asked the doc why I had these issues when the operation to remove the tumour had apparently been.a success. He opined that my brain had been damaged, which is not reparable, so I should not expect much improvement in these areas. So In other words how I am now is as good as it is going to get. He said that I wasdoing well having survived the tumour for three and a half years. So I auppose I should quit complaining and justbe happy I am not dead. Looking across at theLakeland fells I felt very sad. I had dreamed of having a few years of retirementgoing for walks in this beautiful area. It is never going to happen
Tohelp me get around at home we ordered a Rollator fromCareCo We have purchased several items from htis site and have been impressed with the valu e for money snd fast shipping.
With the consultant 's blessing we are going to hsve another try to reduce my steroid dose to zero, Steroids have too many bad side effects.
Olga took me for the usual short walk to the end of the cul desac for a breath of fresh airand to prove to myself Ican still walk.just as we got to theend of the road I felt my knees buckle under me. Olga's supporting arm and my stickstopped me falling to the ground. It looks as if it is time to consider a wheelchairor a mobility scooter. I was hoping it would not come to this as no oone that I know of who had the same type of tumour survivedfor long after going in a wheelchair.
It may not be apparent but Iam still having considerable difficulty using the computer. I have to correct nearly every characterI type. Nowadays Olga has to do my online jobs such as internet banking. Blogging and answering email arenn't important enough to get this special treatment I'm afraid.I've had to give uup my other blog.The same visual problems have put paid to the other activities I used to amuse myself with. It's just darned frustrating.All I am good for is watching TV and listening to the radio
I'm finding using the keyboard impossibly difficult right now. I'm not a touch typist so I look at the keyboard a s I typeand he keys are not where they appear to be, My left hand does not seem to be my hand at all.
I have to spend a lot of timecorrecting those errors I happen to notice It's incredibly frustrating. Another example of the same issue: When I switch a light on I find I'm pressing on the faceplate justbelow the switch rocker.If I try to pick a biscuit off a plate of biscuits my hand can't feel the biscuitsthere because imy hand isn't anywhere near them.
When I press a key on the computerkeyboard I find 've pressed one of the nearby one. if I try to type capital I I get controll-I (switch to italics)which has just happened here. I can use the mouse OK though, but I often lose the cursor. Typing is impossible in these conditions. It h has taken more than half an hour to type this short post. and correct the errors I found.
Received a new driving licence, valid for 1 year, from DVLA today!tI's Not much use to me now.A few monthsearlier my visionwas good enough for driving to have been possible. Now it is so poor that typing this short post has proved amost impossible.
I spoke (well, wrote) too soon. Today we had to go to the GP surgery. When the taxi arrived, I found I could barely stand up. I only made it to the car with Olga's support.The doctor found me a weelchair to go out. My head was spinning and I had no balance at all. Surprising as I'd been getting better and better at the physiotherapist's balance exercises.
Olga said this was due to withdrawal symptoms from the reduced dose of steroids. She found a quarter of a dexamethasone tablet in her bag, which I took with a cup of water from the surgery's water cooler and soon began to feel a bit better. Olga remembered that I had had similar problems when I tried to give up steroids the first time. I don't remember so I had to look back in this blog to refresh my memory. I even have an itchy rash like I did back in June last year. Hopefully I won't get shingles again like I did then.
So it looks as if I'll have to keep taking a quarter of a tablet a day. It's disappointing,. My appetite has been less great and I had even begun to lose a little weight since we started reducing the steroid dosage,
Today I have taken no dexamethasone (steroid.) We have been gradually reducing the dose a fraction of a tablet at a time. Hopefully I'll now be able to lose the 10kg of weight that I put on since the operation.
Also hopefully there won't be too much need for posting to this blog. I no longer feel that I have one foot in the grave. I expect I'll have cancer cells in my brain forever, but I'm at least a few paces away from the grave at this moment.
I still have to overcome the after effects of surgery: my dodgy vision and balance problems . The number of times I've had to correct typos just to write this post is a reminder that I'm not fully recovered yet. So this may not be the last post to this blog. Not just yet.